PSW Webinars: Recordings and Transcripts
Experiences of Providing Care During COVID
Guest Speaker: Dr. David K. Wright
Host: Kath Murray, Life and Death Matters Co-Host: Michelle O’Rourke
Keywords: COVID, stress, fatigue, personal support worker, PSW, self-care, support
This is the first of the webinar series specifically for PSWs. Dr. David K. Wright presents and facilitates the discussion on the challenges for providing care as a personal support worker during COVID. Join us for the rest of the series at https://webinars.lifeanddeathmatters.ca/
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Transcript – Online
We’ve got such an exciting day; welcome to the first of the free webinar series for PSW is HCAs and CCA is brought to you by Life and Death Matters, Hospice Palliative Care Ontario, and the Canadian Hospice Palliative Care Association. It is very exciting to be with you, nearly 500 people have signed up for this series! You include PSW, PSW students, allied health workers, nurses, managers, and educators. We will have some interesting discussion today. I realized that many of you are referred to as healthcare systems or continuing care assistance, but in this series, we will refer to you as PSW and personal support workers, and I hope that you feel acknowledged with that title too. There are a number of people who wanted to attend, but are unable to, so we will be recording this session and we’ll post the recording on the Life and Death Matters website in the coming days. You’ll receive an email with that link, and you’re welcome to share that. Wherever you come from, I welcome you.
I hope you will leave this session, feeling the support of our team across the country. I hope you will be inspired by David’s presentation, that you will have ideas that you can integrate in your practice and new ways to connect with colleagues from across the country. My name is Kath Murray. I am a hospice palliative care nurse, educator, author, thanatologist and founder of Life and Death Matters, a Canadian palliative care education company.
Some of you may know me because I wrote a book titled Integrating a Palliative Approach: Essentials For Personal Support Workers. This text and companion workbook, podcasts and videos are used in many PSW programs across Canada, as well as for education and long-term care, hospice, and palliative care facilities, and in community care. As personal support workers you are often referred to as the eyes, the ears and the hands of the healthcare team, people that you care for often describe you as the heart of the team.
In the Ontario report on staffing and long-term care published in June-July of 2020, the long-term care associations, the operators, residents, families, and labor partners often referred to you as the backbone of the long-term care system, and they even acknowledged that you did much of the heavy lifting this past year. During the pandemic in the media, you have been referred to as heroes. Heroes, hearts, hands, eyes, ears, backbone. Wow, sounds incredible, and incredible you are.
Today in collaboration with the Canadian Hospice Palliative Care Association, and Hospice Palliative Care Ontario, we are excited to announce that one of you will be chosen to receive a free course registration to a course in the new online program based for PSW called PACE for PSWs. This online education is specifically created to support you as a PSW to learn the skills that you need to integrate a palliative approach and provide excellent palliative care. We will share more about PACE for PSWs after the presentation.
Now I will introduce you to my co-host, Michelle O’Rourke and our speaker David Wright, Michelle O’Rourke is a hospice palliative care nurse and an author. I am so grateful to have her helping with this series. Michelle is a co-host today and will help me monitor the chat. Next month, she will be presenting the session titled, “Addressing our Grief Associated with COVID,” which will link in so beautifully with some of the challenges and the grief that David will be discussing today.
I am thrilled to introduce you to Dr. David Kenneth Wright. David is a nurse, educator, and researcher at the University of Ottawa. He is a nurse at the St. Raphael’s Palliative Care Home and Day Center in Montreal, is a member of the Canadian Palliative Care Nursing Association and is a dear friend. If we were not in the midst of COVID restrictions, I would wish that we could gather in the forest around David’s home for a campfire and roast marshmallows and share stories. We had thought this might be possible online, but instead of having 30 people sign up for this, we’ve had over 400, closer to 500 sign-up, how exciting is that!
David is going to talk today about experiences of providing care during COVID. He will share some stories from the media and some from his own research. He will invite us to think about the impact of COVID on how we relate with one another in giving and receiving palliative care. During his presentation, he will invite you to share your own ideas and stories in the chat box. David will talk for about 30 minutes and then David, Michelle, and I will share and respond to some of your stories, comments, ideas, and questions that you have submitted. Please enjoy reading the comments contributed in the chat, we look forward to hearing your thoughts. If you want to share your thoughts with the entire group, then send them to all attendees and panelists. If you want to share your thoughts just with David, Michelle, and myself, then please just send it to panelists. David, I’ll turn the time now to you, thank you for being here.
Dr. David K. Wright:
Thank you so much. Hello everyone, I’m thrilled to be here with you all. I was super excited to see the amazing registration which I think speaks to the enthusiasm in this community for education and for excellent care. So, thank you so much for having me. As Kath mentioned, I’m going to spend the next half an hour or so sharing some stories. I really believe that stories are one of the most powerful ways that we can share knowledge about what matters most in healthcare. As healthcare providers, we become characters in the stories that patients and families tell and retell long after they leave our care. I just want to give you one example to show you what I mean.
Just a few weeks ago, I was on a zoom call with a colleague of mine from the UK. Her name is Marie Cooper. And before our meeting started, she came online and she was super excited and emotional because she had just received an email earlier that day from a man who had been one of her patients 30 years ago. Now, I don’t know what prompted him to reach out and track her down, maybe it was all the attention that healthcare workers have received over the last year, but in his email, he just wanted her to know that on that particular day, 30 years ago, she had cared for him. He had felt scared, and she had made him feel safe, and this made a world of difference to him. So think about that. Think about all of the people that you have cared for or will care for, who are out there in the world, holding the memories of their time with you so close to their heart, that they will be thinking about you for decades, even if they probably won’t write you an email to tell you.
So perhaps some of you have your own stories of receiving healthcare, or your own examples of that one memorable person who made a huge difference either in a good way or maybe a bad way, I certainly do. The point that I want to make here is that when we share and collect stories from people receiving and providing care, it becomes possible to see what’s most important to people. What is at stake and what really matters. So let’s begin with a story. This is the story of Brian and Joanne, and it comes from several different pieces that appeared, over a number of months in the Canadian news media. This is a picture of Brian and Joanne that you see here. Joanne had severe Parkinson’s disease and lived across the street from Brian in a long-term care facility. When the pandemic struck, Brian was not able to visit with her. So, although they were only meters away, they were worlds apart. On March 16th of 2020, early in the pandemic, Brian had wanted to give his wife Joanne some flowers, but when he went to the store to buy a card, he felt uninspired by all of the options in front of him. So instead, he decided to handwrite a letter to accompany the flowers that he would deliver to her. And this is what he wrote in that letter:
Dearest Joanne, I will need to keep this letter short. I hope the PSW has given you the flowers to enjoy. Needless to say, that I miss you and love you as much as ever. If you only remember one thing, remember that I have loved you very much for over 48 years. Now, this virus outbreak, COVID-19, is terrible and has been the most disruptive thing in my entire life. I have no idea as to when we will be able to return to a normal life. Please try to stay positive and be strong. I am trying my best to do likewise. Your husband, Brian.
Brian then proceeded to write more than 300 letters to Joanne over the course of the pandemic. The letters were about different things, sometimes just about whatever was happening that day. Other times, he shared memories and retold stories of their life together. For example, on Christmas, he wrote a letter recounting the story of their son’s birth. That was letter number 92 pictured here. It begins:
Tonight’s letter starts very late on Christmas Eve, 1986. You went upstairs at approximately 1230 while I stayed downstairs with your father. When I came up about 20 minutes later, you were again putting on your new Christmas maternity sweater. When I asked why, you said, I think we will be going to the hospital soon.
Now, because Brian was barred from seeing Joanne due to COVID-19 visit restrictions in long-term care, Brian would hand-deliver these letters to the PSW and the nurses of the facility, who would then read them aloud to Joanne. Sometimes Joanne would ask to hold the letters as she settled into bed for the night and staff would report back to Brian that she had slept through the night, holding a letter against her chest. Brian would also encourage staff to read letters on their own. He did not consider them private. He wanted staff to come to know Joanne and the life that she had through his letters.
What I want us to focus on here is the long-term care staff and particularly the PSWs who play a vital role in facilitating this connection between Brian and Joanne. In placing these letters into a PSWs hands, Brian puts all of his trust as well. This has shown so clearly in the first letter, which began with “I hope the PSW has given you the flowers.”
Dr. David K. Wright:
My colleague, Christine McPherson, who is a nursing professor at the University of Ottawa, has done research with a PSW about their work, providing palliative care to older clients and families in the home. On this slide, you see a screenshot of her paper, which is available open access online, you can Google it and read it. In this paper, she reminds us that 80% of direct care to Canadians 65 years and older in the community is provided by PSW. Through chart reviews and interviews with PSW is directly, she and her team demonstrate the many ways that PSWs are hugely influential in helping people at the end of life to experience comfort, dignity, and quality of life. For example, PSWs will notice how family members are coping and may offer suggestions and support. One example that she writes about is a PSW that noticed that a patient’s wife was having to give her husband a lot of morphine doses, so the PSW suggested to the wife that she use a book to keep a log of these doses. This seems minor, but probably had a huge impact because we know that the responsibilities of caring for family members in the home, including the huge responsibility for medication administration can be incredibly daunting and overwhelming for families.
Personal support workers in this study also spoke about adjusting their routines to suit the client’s rhythm. For example, one PSW said
“Nothing is set in stone. If the client is having a bad day and doesn’t want to shower, but just wants you to listen. If that is what makes them feel better than that is what I do.”
This willingness and ability to adjust to whatever the patient needs is hugely important for person-centered care. And especially at the end of life when preferences and routines can change very unpredictably.
So here on the slide, you see a quote from one of the PSWs in this study.
“I have one woman who is in a wheelchair; She is palliative. I wash and curl her hair. I do anything that has to do with personal care, doing her fingernails, making her feel good, reminding her how to feel alive; that she is not forgotten. “
Let’s just take a moment and appreciate the weight of what is being communicated here. Helping someone with personal hygiene is not just a task that must be completed. It’s a meaningful intervention that reminds someone that they are alive, that they have not been forgotten. As Cicely Saunders who founded the palliative care movement many years ago famously said,
“You matter because you are you, and you matter to the last moment of your life. We will do all we can to help you not only to die peacefully, but to live until you die.”
Here we see how important PSWs are to making good on that promise. But how does COVID challenge all of this? Joanne had her husband, Brian to write her letters, and in their case, the way that PSWs helped was that they received and read those letters to Joanne and to themselves. Now, Brian was eventually able to visit his wife himself. And he pointed out in one of his media interviews that when he did, he noticed there were people on Joanne’s floor who didn’t even get a visitor they’re lonely and they need a bit of recognition. So with that, I’d like to invite you to share your ideas, what are your ideas for helping someone else like Joanne, but who doesn’t have someone to write them 300 letters over the course of the pandemic? What are your ideas for helping someone like that feel seen and feel valued assuming that they are separated from their loved ones because of COVID-19. At this point, we’ll just ask you, just whatever you’re thinking or feeling in this moment in response to this question, throw it into the chat and Kath and Michelle will come back to what some of what you offer, at the end of the talk.
And David comments are coming in, so thank you. And again, just send your messages to either everyone or all panelists, however you would like, and we’ll be able to pull these together later. Thank you, David.
Dr. David K. Wright:
It’s great. And I’m just going to continue, but please feel free to continue using the chat, and continue listening to me. The next two stories are from people providing care during COVID. This first story comes from interviews that we are conducting with palliative care nurses during the pandemic. Here you see the names of my colleagues on the bottom left including Christine MacPherson, who led to the PSW study that I mentioned earlier.
The first story that I will bring you comes from Laura. Laura is a nurse who prior to the pandemic had been coordinating a palliative care volunteer program, but she was redeployed to the local hospice when the pandemic began. At the very end of her interview with us, Laura spoke to us for about an hour and she talked about her perspectives on COVID and on how that’s impacting palliative care nursing, but at the very end of our interviews, we always ask our participants, is there anything else that we haven’t talked about that you would like to share with us? And it was only at that time that she told us this story. She says,
“I had an experience last week that just has been kind of sitting with me. And to be honest, I’m starting to feel a little bit burnt out. I dread going to work. Some days I’ll come home and cry more than I did before. Especially if a patient has died. Last week, there was a young mom in her forties who was dying and she was no longer really conscious. Her partner was at her bedside and we had the window cracked open because her two children were also visiting, a son and daughter in their twenties, on the other side of the window. This woman ended up dying while her kids were outside. And just seeing the daughter just crying and wailing and calling for her mom through the window was just so heartbreaking.”
“I think we all understand why these limits are put in place, but we were all just so angry. And I was even thinking for myself, if I were that daughter, I would be barging through here to be with my mom. I would not care about the regulation.
And she finishes by saying, “And then at the same time, I’m the person who’s imposing those restrictions on people.” So I just feel really torn a lot of the time.”
Dr. David K. Wright:
Laura’s sentiments of feeling torn are also experienced by PSWs. For example, Anna Perry, who you see pictured here is a PSW who has been working in long-term care during the pandemic. She was profiled in a story on CTV news. And in that story, she describes feeling both physically and mentally exhausted as her hours have gotten longer and staffing has gotten worse. She says the hardest thing is just not having the ability to have that time with the residents and be able to talk to them and just see how they’re doing. So here, Anna is highlighting a gap between the type of care that she knows should be possible and the type of care she is able to provide because of how stretched she and her colleagues are. Other nurses we interviewed in our own research have said similar things. They talk about continuously having to make decisions about whether to care for themselves. For example, something as simple as taking a lunch break and when they do take a break, feeling guilt over what is being missed. For example, one nurse told us about having to choose between finding time to eat and rest her back during a particular shift or finding time to hold an iPad up to a dying resident so that they could talk with their family. Because on that day, it simply wasn’t possible to do both. Returning to Anna here, she talks about holding patients’ hands as they’ve died and how much these experiences affect her personally. She says that “these experiences will be with me for a very long time.” And she goes on to say, “I feel like during these tough times, everyone and herself included, just needs someone to talk to.”
Another PSW, Elizabeth Perez, worked at a long-term care facility that saw all of its 100 plus residents test positive for COVID-19 in one month. In total, more than 70 residents died from the virus. In an interview with CTV news Perez said that, “It felt like a war zone. It was hell. It was complete total hell.” Like Anna, Elizabeth Perez spoke about holding the hands of people who died right in front of her and this having a tremendous impact. So, as we sit with the enormity of that, let me say that I was very happy to see that as part of this webinar series, the next session is going to be about grief. This is so important because while Laura talks about feeling burnout and Anna talks about feeling exhausted, what is also going on here, is grief. And that needs to be named. As healthcare providers we hold the grief of the patients and families that we care for. And we also feel tremendous grief ourselves as the people that we care for are dying. And particularly when the people that we care for are dying in sometimes horrible circumstances. And like anyone experiencing loss, we also need support in our grief.
And so once again, I’ll now flip it back over to you, and I will ask you, what are your ideas for how you could best be supported as you grieve heartbreaking situations like the ones that, Laura or Anna have experienced? I want to point out, I think as Kathy mentioned at the beginning, there’s a lot of PSWs and PSW students on this call, but there are also leaders including formal health care leaders, including nursing leaders on this call. This is a good opportunity for us to maybe share with each other how we could be better supporting each other in our grief. And if you are a nurse on this call, you could choose to tell us how you feel like you could be supported. You can also share with us ideas for how you might support the PSWs that you work with.
Thank you, David. And again, the chats working, people have been able to respond to your first question on and are starting now with the second question. Thank you. Wonderful. And I just need to say this is just so moving to hear you present these stories and to hear you address this. Thank you.
Dr. David K. Wright:
Thank you. I’ll move on, but again, please feel free to continue sharing your ideas with us in the chat. The next nurse that I will introduce is Talia, also a nurse that that we spoke to in our interview study of palliative care nurses caring for patients during COVID. Talia, like Laura, has been working in residential hospice as a frontline RN during the pandemic. Early on in our interview with her, we asked her the question that you see here on the slide: “How has the pandemic affected hands-on care, the way you relate to patients and families?” And this is what she told us.
“It’s awful. That’s probably the most that I bring home with me every day, which is very odd because you’d think I would be more fearful of bringing home what could be a life-threatening virus, but what I’m carrying with me more.”
And at that point, she paused, she became emotional, and her voice started to crack. She says,
“What I’m carrying with me more is the inability to have the therapeutic interaction, you know, the personability of it. To hold their hand and have them see your face, sort of wearing that journey with them, meaning on her face, as opposed to this big mask and goggles.”
And then she went on like Laura to just tell us a story about somebody that she had cared for just the other day. She says,
“I had this gentleman just the other night who has advanced dementia. When I first introduce myself, I usually go into the room and I take down my mask six feet away so they can see my face and they know who I look like. And I have a button on that has my picture, but for any sort of personal care, I have to be all gowned up. I went in about an hour later to give him some care and I had to have all of my stuff on, and he was sort of half asleep and he woke up and he saw me there. And he was just terrified. Because I guess” she says, “I would look terrifying to him.”
And that for me hit home, because it shouldn’t be that way because I introduced myself to him an hour earlier, it was jovial, it was welcomed, it was a sense of peace. He felt comfort. But at that moment, it really resonated with me how awful it is for these people. Their environment has changed so much. Their loved ones are not around as much as usual. And now you’re essentially coming in and you’re like this ‘monster’ (So this is her word). She says, “Who is now expecting to what, give you a bed bath or a shower? How terrifying would that be?” So Talia’s concern that she is perceived as a ‘monster’ by her patients is something that we actually heard from other nurses as well, and using different words.
For example, another word that recurred was ‘alien’. One of our participants who used the word ‘alien’, Zoe, she spoke about how the entire tone of her hospice had changed since COVID, that she feels that the anxiety of her patients is much higher, in part because of what it feels like to only ever encounter other people who are dressed in full PPE. Now, interestingly, Zoe has found one thing that sometimes helps her patients to recognize her when she is their nurse. Zoe actually has a very unique fashion style. During our interview, she was wearing these very large, almost fluorescent eyeglasses. And she tells us that while these glasses do not fit under her safety goggles, she has another pair that are bright red. She has become known amongst her patients as the nurse with the red glasses, to the point where when she enters a room in PPE, her patients immediately recognize her, “Oh, it’s you?” they say. And so here again, I will invite you to think about, what other kind of creative ideas might be possible to connect with people despite having to wear full PPE whenever we interact with them.
Thanks, David. Again, comments are coming in and coming through.
Dr. David K. Wright:
When Zoe was talking with us about the transformations that have happened in her hospice, with patients experiencing their final days only to ever interact with other people in PPE, she made an analogy to the AIDS crisis, which was a time when people with the virus, so in that case, the HIV virus were viewed by society purely as a risk to other people and how dehumanizing and stigmatizing that was. And, you know, I think Zoe’s analogy is so incredibly insightful and it brings me to another set of stories. Last summer I was part of a team that conducted focus group interviews – that just means group interviews, with representatives of an LGBTQ, lesbian, gay, bisexual, transgender, queer, and community organization that support older adults in the community. And we spoke to these people about their experiences of giving and receiving care, including during COVID-19. We asked them, what is important for someone from the outside, so meaning outside of the LGBTQ community, to know? They talked with us about how many people in this community are survivors of trauma and they wanted us to understand what that meant. One of our participants made a connection between his experience of living through the AIDS crisis and how those experiences are now being activated in COVID-19. These are his words:
“I can remember hauling people off bedpans because they were left there by nurses who would not enter the door. This pandemic, currently COVID-19, it’s bringing back a lot of really tough memories.”
And at that point, his voice cracked with emotion and other participants around our virtual focus group, other people that we could see on camera over zoom had started to nod. He continues,
“I can remember picking up a guy’s lunch from outside the room because people wouldn’t open the door and take it to him. We had to also take on the medical community and teach them about gays, about gay families. I think I was probably involved in 60 to 100 deaths.”
I wanted to highlight this story for two reasons. One, because it’s a great example of how our life experiences continue to affect us as we age, for years into the future. When caring for an older adult, it is impossible to know where they are at or what they’ve been through, unless we ask. And when we don’t know their past, we may be missing very important information about how they are experiencing the present.
But another reason that I wanted to focus on this story is that it explicitly centers the perspectives of LGBTQ people, whose stories are often missing from our teaching and our practice in healthcare. This invisibility has huge consequences for the comfort, dignity, and quality of life of older LGBTQ people in care. For example, we know from research that LGBTQ people often return to the metaphorical closet when they enter long-term care, because this is not always perceived to be a safe environment where they can be truly themselves. In our focus groups, our participants talked about this phenomenon of returning to the closet in older age and how this is likely made even worse because of COVID. One of our participants said,
“I wouldn’t be surprised to see within our community that people have started isolating again, almost subconsciously using the pandemic as an excuse to isolate again. We have worked so hard getting people in our community out. We have all encountered people coming to a dance for the first time in 30 years or coming up to the Pride parade and they’re 80 something years old. And they’re there for the first time. I can see this COVID lockdown, just having such a negative impact on people, just sending them right back into that closet, even subconsciously.”
On this same theme, here is a story about a same-sex couple experiencing end of life care. The story is from before COVID, but I’m going to suggest a link to our COVID times in a minute. This story comes from a published article in the December 2020 issue of The Gerontologist. The names of the authors are on the slide. This is the story of Esther and Kathy. They were a couple for 33 years. Esther explains that Kathy had a rare form of leukemia, and as she got sicker, they would be in and out of hospital. When they would go into hospital, Esther would always fill out the required forms and would always tick the married box. This became a problem for the couple as Kathy got closer to end of life. And I’m now going to read from the paper itself – this is the authors who are telling Esther story.
“Kathy and Esther started noticing subtle changes with the way a nurse was interacting with them. The nurse came less frequently to their room. And when he did, he spent noticeably less time in the room. The couple noticed that the nurse asked fewer questions than before. And the questions focused on medical needs rather than emotional ones. When the nurse did ask a question, very little eye contact was made with Esther and Kathy. As Kathy got sicker, she noticed the nurse’s demeanor becoming more overt and negative when Esther disclosed their relationship status and therefore their sexual orientation. Kathy got anxious about how far this behavior would go and how it might influence the treatment and care she and Esther would receive. At the next appointment, Kathy told Esther, “Don’t say anything about being married anymore.” And so, Esther started checking the box for emergency contact instead of spouse. So that staff would think they were friends and not partners of 33 years. And what this meant was that when Kathy eventually did die, Esther was known as her best friend and not as her grieving spouse.”
So here, I want us to come back to Brian and Joanne, and I want us to remember how important it was that Brian be able to trust the healthcare staff, trust the PSWs and the nurses in keeping Joanne connected to him. If Kathy and Esther had found themselves separated because of this pandemic, the way that Brian and Joanne were, would they have been able to trust their care providers in the same way?
We’re coming to the end of the invitations for you to share your ideas. But I’m now actually asking you the exact same question that I asked you earlier. So earlier I asked you to think about somebody like Joanne in long term care. What are your ideas for helping somebody like that to feel seen and valued if they were separated from their loved ones because of COVID-19? And here I’m presenting the exact same question. But let’s think about somebody like Kathy, what are your ideas for helping someone like Kathy to feel seen and valued if she were separated from her loved ones because of COVID-19? And so at this point, please do answer this question. Please also, at this point, feel free to put into the chat, more general reflections, comments, questions, because we’re coming to the end and it would be good for Kath and Michelle to have those. I’m not sure how busy the chat is, but there are a lot of you on the call so I’m sure that if not everybody’s contributions, if we, if don’t make it into the discussion that we have, you have, you know, there are more webinars forthcoming. So please do still put things in the chat, even if we don’t have time to get to what you say. But as you continue to interact with the chat, I’m going to now conclude with what I hope are three main takeaway messages that if I’ve done my job properly, I’ve emphasized in this talk.
“The first point that I really want to make is that palliative care is ultimately about helping people to experience comfort, dignity, and quality of life before death, but also after death.”
For example, attending to the grief that family members have in the immediate aftermath of the death, caring for a body after death, in a way that promotes dignity and personhood, and also attending to the grief of families into bereavement. None of this work happens without PSWs. COVID-19 creates new levels of social isolation that cause suffering of patients, families, and staff. And we’ve seen examples of this, today, and we’ve also seen examples of how PSW can make a huge difference in supporting people in this social isolation. But I don’t want to end this talk without emphasizing that, although it’s important to focus on the contribution that PSWs make through their work, we also need to recognize their vulnerability, and ensure that they are provided the support that they need to be able to do this work. And I want to offer one final reflection about vulnerability and social support needs of PSWs. And I think this reflection applies to COVID, but it also applies beyond COVID. The main theme of this talk has been on recognizing the humanity of people that we care for and attending to their grief and attending to our own grief. When conditions are such that we cannot offer the type of care that we know that they deserve. All of that is very important, but we also need to be very aware of the ways in which the humanity of PSWs themselves can be at risk in our current healthcare climate. For example, in the research paper by Christine McPherson that I mentioned at the start of this talk, she documents that some PSWs experienced racism from clients and families, and she highlights that in comparison to the wider workforce, a higher proportion of PSWs are racialized and have immigrant status.
Now too often, the culture of our healthcare training normalizes these types of experiences. So experiences of being on the receiving end of a, for example, racist comments from clients and families as kind of a “hazard of the job.” For example, workers who are subjected to harassment, such as racial harassment, are expected to kind of put that to the side, not take it personally, and deliver nonjudgmental care anyway. I want to be super clear and real with everybody on this call that I wholeheartedly reject this logic. Violence is violence and personal support workers deserve to do their work in dignity and safety. The COVID-19 crisis has highlighted the vulnerabilities of the personal support worker workforce and how our system too often fails to adequately protect them. For example, it is absolutely unethical that while PSWs are lauded as the heroes and essential workers of this pandemic, they can feel forced to show up sick to work during COVID-19 because without paid sick days, they cannot afford to stay home. So, there’s a huge need for advocacy and leadership to attend to the working conditions that personal support workers inhabit, without doing so, none of what I’ve presented today in terms of the ethics of individual relationships between personal support workers and patients and families has any meaning.
To close I’ll come back one last time to Brian and Joanne. Joanne actually died in January. And so, Brian is now grieving, and he takes comfort in the letters that he wrote. Here is an excerpt from an exchange that Brian had with a PSW before Joanne died. And so this is the PSW speaking, she told Brian,
“I’ll tell you one thing, Brian, when Joanne passes, I will cry because these letters have made me get to know her, not as a resident, but as a person.”
And I think ultimately that’s the whole point, and the fact that this was able to happen even during COVID and even during what is inarguably the worst healthcare crisis we have ever seen in our lifetimes, is hugely inspiring. And it leads me to wonder, you know, COVID-19 has changed so much in our world, and we need to respond to that obviously, but what, what can COVID 19 not change or what should it not change? So that’s the final reflection that I leave you all with. And I thank you very much.
David, thank you. And then, in the tradition of the First Nation folks in the community where I live, Huy ch q’u, thank you. And I pay tribute to you for what you have done. Michelle, and David, your thoughts have been incredible. Michelle and I think have been writing notes as we’ve gone and taken notes from the chat room. There’s lots of comments to thank you, David, right on the mark, et cetera. Michelle, do you want to do work your magic of just pulling together a couple of thoughts? I don’t think we’re going to be able to respond individually, but do you want to just pull together a few thoughts?
Absolutely, first of all, I want to thank all of you for sharing your ideas. And hopefully most people were able to see what each other wrote, but you know, some of those things that we talked about, how we keep people valued, being able to help with calls and video chats. One of the ones that I loved was I always tried to make sure my resident’s phone is charged so that when their family calls there, their phone is ready for them. Finding time to sing, to hold hands. All of those things are so profound in helping that person feel valued and, you know, they don’t take extra time. That intimacy that we share with the residents, which it’s very difficult because we’re wearing PPE and we have barriers, can still be expressed. And some of you had some really good ideas about how you can kind of help your residents and clients to recognize you.
I think one of the ones that was new for me was, you know, before you don your PPE, when you’re standing at the doorway of the room to actually lift your mask where it’s safe, just for a moment and show your face and say, good morning, Mr. Jones, or, you know, being able to wear your picture, being able to maybe start with a funny joke so they kind of get to know who you are, as a person. So there’s lots of different ideas for how we can stay connected and how we can also, you know, be able to make sure that people realize we want to connect human to human and not as, as an alien would. Other ideas for connecting with people, you know, helping people to feel seen, providing passionate care, wanting them to feel that I’m treating them with no judgment. And I think those last two, two stories were very profound and in how the impact is for us who are so close to them. And yet, just one thing that we can say or do can make a difference or even just a gesture. You know, I love my Angelou’s saying about, you know, sometimes people forget what you said and what you did, but they’re never going to forget how you made them feel. And the PSWs are so amazing for that at the hospice that I worked with, they were the ones who really had the privilege to have more of the intimate moments with the residents and their families. And so what you do is so important.
Thank you, Michelle, beautiful. And I was struck also by the number of people who mentioned keeping their phone charged, like so little and so crucial, so big. So thank you and David, I think we’ll all go away, probably there’ll be a number of us who will come back and want to listen again to your presentation and and listen to your stories. Thank you. And thank you for the research that you and Christine MacPherson are doing, that is also bringing the voice of personal support workers to the literature and to the table.
So, the next on the agenda, I would like everyone, who’s still here, if they can to just put their name, if they want, their email, but their full name in the chat so that we can choose the name of the winner of the PACE for PSWs, we can choose the winner of that course from those people who are here.
And well, but I also want to just give you a little bit more information. I promised you that when the teaser at the beginning, so PACE for PSWs is a joint education project with Canadian Hospice Palliative Care Association, Hospice Palliative Care Ontario and Life and Death Matters. PACE for PSW is palliative care education specifically for personal support workers. And as we said before, also known as healthcare assistants, continuing care assistants and other similar care providers. The courses are specifically written for you to support you to learn the skills for providing hospice and palliative care and integrating a palliative approach, which talks about the integration of palliative care principles from time of diagnosis, through life, through declining, through death and following. So regardless of location or diagnosis.
The unique features of each of the courses, each course is interactive and includes videos, podcasts and learning activities. Each course is short and it takes approximately three hours to complete. You can learn when it’s convenient for you, so if you’re a normal night person, you can learn at night, you can learn in the day, whenever it works for you. You can select the courses that meet your current needs, or you can complete all 10 courses and receive a national certificate in palliative care from the Canadian Hospice Palliative Care Association, Hospice Palliative Care Ontario, and Life qnd Death Matters. Very, very exciting.
We thank CHPCA, HPCO, Health Canada, and the Sovereign Order of Saint John of Jerusalem for supporting this project. We acknowledged them and we acknowledged Richard and the techies that have helped make this happen too. Now, the recipient for the course will be contacted by email and will be presented during our next webinar on June 1st, when Michelle speaks about grief and our grief and COVID, and I’ve lost the name right in front of me here. So please Michelle chime in.
Before you finish, before you exit, please fill out the feedback on there’s a quick survey. So just fill that out right away.
The recording of this session will be posted on the Life and Death Matters site. You’ll receive a link to the recording in the next day or so.
If you want to connect with colleagues from across the country, I invite you to join the Facebook group LDM community, the Life and Death Matters community page. We welcome you and welcome discussion there. Love to see some of this, some of the reflections from this webinar entered in there and start discussion.
You’ll also receive an email about the webinar on June 1st, and please share the emails with your friends and colleagues. Stay tuned for more information about page for personal support workers. And if you want to connect with us, please go to lifeanddeathmatters.ca and click on contact us.
Thank you for being here. I wanted to start today by saying I am a fan of PSWs and I have been a fan of PSWs for over 30 years. I have always felt that you are the, the hands, the heart, the eyes, the ears of the healthcare team. I hadn’t thought about backbone, but that absolutely is true. And I often sympathize with you that you are also too often the nose of the healthcare team too. So with that, Michelle has a lovely tradition she does, which is putting her hand over her heart, which supposedly releases oxytocin, which is the hormone of attachment and love and caring. So, to you, we acknowledge the work that you do. We acknowledge the work that David has done and Richard and providing the technology here, and we send our care and our thoughts and our concerns to you. May you care for yourselves as well as you care for your people. And we hope to see you next month in the session on grief and your grief and working in the midst of this pandemic. Thank you. And you are welcome to make any continuing comments in the chat while we finished up.
As we sign off the zoom, there’s also a dropdown quick survey from HPCO that shows up. So don’t sign off zoom right away, watch for that survey.
Great. Thanks folks.
And we’ll see you in June, have a great month, happy palliative care week!
Addressing our Grief Associated with COVID
Guest Speaker: Michelle O’Rourke, RN, MA
Host: Kath Murray, Life and Death Matters
Keywords: Grief, loss, personal support worker, PSW, COVID, stress, death, family
Michelle O’Rourke discusses the grief caregivers are experiencing as they continue to provide vital care during COVID. In this interactive webinar, Michelle asks questions to help you to identify your losses and grief, and provides practical ways to help you to manage the stress of your work and grief.
| TRANSCRIPT PDF |
PSW Webinar Two: Addressing our Grief Associated with COVID
Welcome, welcome wherever you are from. Welcome to the second free webinars series for personal support workers, also known in different parts of the country as healthcare assistance, continuing care assistance, et cetera. This series is brought to you by Life and Death Matters, Hospice Palliative Care Ontario, and the Canadian Hospice Palliative Care Association. It is exciting to be with you. Nearly 700 people have signed up for this series, which I think is a testament to how important it is for personal support workers to be able to access education, to be able to be seen and heard and validated. I welcome you and include personal support workers, allied health workers, nurses, managers, and educators. There are a number of people that wanted to but are not able to attend, and so we are recording this session. We will post the recording on the Life and Death Matters website in the coming days. And you will receive an email with a link to that. You are more than welcome to share that with your colleagues. Wherever you come from, we welcome you. We hope that you will leave this session, feeling the support of our team across the country. We hope that you will learn some new content about grief associated with COVID and perhaps better understand some of the varied feelings that you are experiencing.
My name is Kath Murray. I’m a hospice palliative care nurse, educator, author, thanatologist, and founder of Life and Death Matters. I live, work and play on the traditional unceded lands of the W̱SÁNEĆ people, part of the coast Salish people. And I am grateful to be a neighbor of the Tsartlip, Tseyc and Tsawout communities. Some of you may know me because some of you have been involved as PSW students with the books that I’ve developed, Integrating A Palliative Approach: Essentials for Personal Support Workers. It’s a text for personal support workers, the texts with companion podcasts and videos are used in many programs across Canada, as well as for education and long-term care home and community care, hospice, palliative care, physician facilities, et cetera. So a tribute PSWs, you are often referred to as the eyes, the ears and the hands of the healthcare team. And I often add, and unfortunately for you, you also get to be the nose of the healthcare team probably more often than you would like. People you care for, sometimes, some people describe you as the heart of the team. In the Ontario report on staffing and long-term care published the end of July, 2020, the long-term care associations, operators, residents, families, and labor partners often refer to you as the backbone of a long-term care system. And yes, they even acknowledged that you do much of the heavy lifting. This past year during the pandemic and you have been referred to as heroes: heroes, hearts, hands, eyes, ears, backbone. Wow, sounds incredible and incredible you are.
Today in collaboration with the CHPCA, the Canadian Hospice Palliative Care Association and Hospice Palliative Care Ontario (HPCO), we are excited to announce that one of you will be randomly chosen to receive registration to one free course in the new online program PACE for PSWs. PACE for PSWs is an online program specifically created to support personal support workers, health care assistance, continuing care aids, et cetera, to learn the skills that you need to integrate a palliative approach and provide excellent palliative care. We will share more about the PACE program after the presentation. But right now, we want to announce that the recipient of the award from last month was Kristin Resinkas from Vancouver Island. So, Kristen works with Vancouver Island Health Authority or Island Health, as it is now known. And she was excited to find out that she has won this free course, and she can choose any one of the five courses that will be launched in September. And actually, she might even be able to sneak in early, Kristen, if you needing to.
At the end of the presentation today, we invite you to put your names and emails in the chat box, and a name will be randomly chosen to receive that free online course in the pace program. Now, let me introduce you to Michelle O’Rourke. Michelle is a hospice palliative care nurse and an author. During this series, Michelle is both a cohost and a presenter.
Today she will be addressing grief associated with COVID. Michelle also has a history of nursing and emergency medicine, and faith-based nursing, and writing about caregiving. Her books include Befriending Death and Healthy Caregiving. Please enjoy the comments in the chat. We look forward to hearing your thoughts and would like to share those ideas with people who have not attended. So, if you want to send a message out to the whole group, please send it to panelists and to everyone, if you want to just share your thoughts with Michelle and myself, then just send it to panelists. If you want your ideas to be kept confidential and your name to not be shared with them, then please just start your post with confidential. And you will just be confidential amongst PSWs across the country. Now, with that, I turn the time over to my dear and esteem colleague, Michelle. Michelle’s going to present for about 35 minutes, and then we’re going to have time for just, you know, an intimate chat around the fire together or around the chat room. Michelle.
Michelle O’Rourke (06:04):
Thanks so much, Kath. I’m really excited to be here today and really excited to be with all of you. I come to you, I live in Chatham, Ontario, Chippewa, Odawa, Potawatomi and Delaware Nations. These Indigenous Nations, known as the Anishinaabeg and Lunaapeew, agreed through their ancestral languages to the mutual sharing of the land, with obligations and responsibilities to the environment. And we know today that these responsibilities and obligations extend to all peoples. And in a special way, our hearts. It’s ironic that we’re talking about grief today, but we know that our whole nation is grieving with our brothers and sisters from first Nations as we mourn the loss of these children and the finding of their bodies. So with that, we’re going to turn things over to talk about addressing our grief and our grief, particularly associates with COVID.
I want to, first of all, thank you for coming and I want to thank you for what you do. No matter if you work in acute care, long-term care, If you work in the community, if you work in a retirement residence, wherever you work, no doubt you’ve been doing an amazing job and have gone way above and beyond. But not without its own implications to our physical health, to our mental health. And we’ll talk a little bit about that today and maybe how we can process some of that as we hold on. So thank you for what you’ve done. You know, I wake up in the morning sometimes and I just find that I’m feeling really heavy. And I think sometimes what is that? You know, why am I feeling this way? And, I think that the very first thing that we have to realize is all of us are suffering from grief.
Grief is our response to loss, and we have suffered loss on so many levels. Sometimes we only think of it as being referred to as the loss of a loved one, but there are a lot of things that we’ve lost during this pandemic. We’ve lost the ability to be able to hug our grandchildren, to gather with our families at Christmas, we’ve lost the ability to go eat in restaurants the way we normally would. We’ve lost the ability to gather with our friends. And besides the loss of life, besides the loss of the clients that we’ve taken care of. And so this grief that we carry is kind of always under our skin, and it includes our collective grief, our grief across our community, across our nation and indeed across the world because so many people have suffered and died during the pandemic.
We also have our normal workplace challenges and stresses, physical, mental, emotional stress that are normal stresses that we have at work, but the COVID related stresses on top of that have been enormous. And we’re going to talk about both. We carry a lot of worry and anxiety. And even though, you know, we’ve been at this for over a year and there are some vaccines on horizon, there are still so many unknowns. We suffer frustration and anger, and we have a right to. Loss of control, nobody has been able to control this virus. And so as we go through continuous change, more lockdowns, more rules, decisions that are made by people outside of ourselves. We’ve just had to keep adapting. But in the last, I would say 15 months now we’ve had no downtime. We’ve had no time to regroup and we’re physically, mentally and emotionally exhausted. We have no reserve.
And that’s why I think, you know, a lot of our emotions are so close to the surface and we don’t seem to have the ability to bounce back, maybe the way we used to. Returning to whatever normal is going to be still seem so far off, even though we have these vaccines. And we’re worried about the variants we’re worried about, you know, will this last, because nobody really knows the future. But most of all, I think we’re longing for a break. We’d love to plan a vacation. We’d love to travel. We’d love to just have a change in scenery. So on top of this are some challenges and some losses that we’ve experienced, particularly because of the pandemic. The loss of the ability to provide care the way that we wish we could, the way that we used to. A loss of the death of residents and clients to COVID as well as to other conditions during the pandemic.
Visitor restrictions have had huge implications. Oftentimes the PSWs have, and the staff have had to step in and be family because the family wasn’t allowed to be there holding iPad and having to say goodbye, and, you know, all of the emotional angst that has caused. Loss of control over our work environment, having to wear PPE, do we have enough PPE? Do we have enough staff, not having enough staff? Being in contact with the clients and their families and having these barriers, shields, and face masks and gloves and gowns, and not being able to be intimate the way we used to be. Worry about catching COVID ourselves or bringing it home to our loved ones. And then having the loss of help from all the volunteers that used to be able to come and help support our programs in our care. And what I want you to do is just to think for a few moments. And again, if you can put something in the chat box, try to think of some of the losses that you personally have experienced during the pandemic, whether that’s a personal loss or whether it’s a loss related to your work.
Kath is going to share a few of those.
So, Michelle, someone has said companionship.
Touché. I was at a funeral of a dear nursing colleague. We met on the beach and I greeted one of our older nurses. And somehow, I just could not, not hug her, and things are starting to open up here in BC. And she said, thank you for the hug. And even as she was leaving, she said, thank you for the hug. Jill says,
“Not being able to connect with friends, not connecting with coworkers in the same way, hugging family, my new baby socializing without other kids and moms hugging, family hugs, not seeing my friends.”
There’s a lot of people who are huggers here, personal loss, two overdoses, friends for 20 years, huge. And the implications on mental health or the fallout on mental health from COVID has been so difficult. And I think if I was somebody working in the community with substance abuse or with, addressing some of these issues, I would be really ticked that we’re spending so much money on this pandemic where we haven’t responded as well to people with mental health and addiction issues. Seeing smiles, ability to mourn in a shared experience, newborn missing grandparents love, we lost our son and could not have a funeral for him.
So much loss, loss of a close friend and unable to see them in their last moments, not seeing my family back home, hugging the fat families and socializing with them. As a senior companion, loss of work and income during two lockdowns in facilities, no hugs or giving hugs. I think we’re a huggy group here. Missing family in Ontario and not visiting for too long. And as Christian said, yes, my thoughts exactly. So there’s a good summary. Loss of body language and facial expression. Yes. And physical connection hugs and supportive touch. When communicating with clients, this is especially difficult when supporting clients with short-term memory loss and dementia. not being able to sit beside a stranger and start a casual, friendly conversation. Yes. So what a great bunch of options there.
And when you think about all these levels of loss, it’s just staggering. It’s astounding. And I don’t think that we realize that so much of the heaviness that we’re carrying as grief. So let’s just talk a little bit about grief because grief is not an illness. Sometimes we think as soon as somebody who’s grieving, we need to send them off to a counselor, but grief is our natural response to loss, whether we losing something or someone. And it’s important for us to acknowledge these feelings of loss and these emotions, and not try to hide them and not try to control them because they are what they are. Everybody grieves in their own way, and no two people are going to grieve the same way, even if they lose the same person. Even if it’s two sisters that lose their mother, they both had a different relationship with her.
So their grief is going to be very, very different. And depending on the other things that are happening in your life, the way you process, your response to that loss is very different. So we have to remember that people can’t say to us “Well you should be moving on by now”, because grief is very personal and unique. And sometimes, you know, maybe we learned there were these stages of grief. Like maybe at first, I’m going to be angry that I’m going to have some denial and then I’m going to move to acceptance. And yet what we know about grief is that it’s really mixed up that this doesn’t happen in a straight line. You can have all of those feelings in an hour and then three hours later, you can have them all again, the grief comes back, it seems in waves and kind of catches us.
You know, we hear a song, we see a picture and all of a sudden we’re grieving again. So, it’s a long process and we have to be gentle with ourselves and help those people who are also grieving to remind them to be gentle with themselves. And we know that there are different kinds of grief, not every kind of loss has the same kind of response. So anticipatory grief is the kind of grief that you would have before you actually have the loss. And we see this in people that you work with that have dementia, and Alzheimer’s where, you know, their family kind of loses the person that they knew because they can’t do what they want anymore, they don’t recognize their loved ones. And then they actually grieve when they die. So, there’s two different losses.
There’s chronic grief, which is, you know, something that’s under the surface all the time with somebody who has a chronic illness or caring for a child with a chronic debilitating illness, that there’s always these losses of the ability to do certain things or losses of dreams, of what you wish you could do. And it’s always under the surface. Compound loss when we have a number of losses really close together, and we can’t really seem to kind of get through one of them before we have another one. But sometimes what we see with compound loss is, you know, maybe you’ll lose your aunt and then you lose your grandmother and then you lose your mother and you’re really grieving. And then, you lose your goldfish, and you don’t know why you kind of went over the edge, but it’s because that was the straw that broke the camel’s back.
And so oftentimes we see that when there’s multiple losses close together. So again, that’s something you’ve maybe experienced during this pandemic with the number of losses of clients or residents that you were caring for. Disenfranchised grief is the kind of grief that we also, sometimes, assimilate with healthcare providers because it’s kind of a grief that’s not supposed to be publicly mourned, you know. It’s as if we’re supposed to take care of these people, but we’re not supposed to be upset when they die. And so sometimes our grief doesn’t have the space to be able to talk about it out loud. And so we keep it inside and it festers. Complicated grief is a kind of way of working through a loss where you’re not functioning very well. So people who are not coping well, people who are maybe using substances like drugs or alcohol to deal with the pain of their grief, that kind of complicated grief really needs some medical and mental health intervention.
So, if you know somebody who’s suffering from that, you know, encourage them to talk to somebody about it. And then we have something called incomplete grief, which I think we’re going to see again, a lot during the pandemic. And somebody talked about it already where, you know, and even in my own case, my brother died early in the pandemic, he didn’t die of COVID, he had a heart attack, but we’ve never been able to have a funeral. We’ve never been able to have a celebration of life. We haven’t been able to gather all his family and friends together because of COVID. And so this grief is incomplete. Everybody’s kinda just feeling stuck. And I think many of you are probably in the same boat. What I want to remind you though, is that grief and stress are both a little bit different. And I think we suffer for both of those things, but they’re not quite the same stresses, you know, how our body responds to a demand and grief will always kind of cause us some stress, but stress doesn’t always cause grief.
So what’s good for us just to kind of tease out, you know, if we just feel like we’re having a hard time, maybe we need to do some soul searching and kind of think, you know, how much of this is stress and maybe how much of it is grief, because the responses are a little bit different.
If we realize that some of it is stress, then we need to explore ways to manage or reduce our stress. And if our response is really related to loss or grief, then maybe it’s important for us to acknowledge that, to cut ourselves some slack and to continue to find ways to work through it and to realize it’s going to take a long time.
Some of the differences between stress and grief, and what I want to do at this time is to tell you that this COVID-19 and grief program through Canadian Virtual Hospice, if you go to the virtualhospice.ca, in their grief section, there is a whole free program for healthcare providers who have been working during COVID 19 and are suffering from grief. You know, questions and things to work through that, to help you try to, to process that.
And it’s a really good course. It’s open to anybody. And as I said, it’s no cost. And at what they helped me to kind of see is that there is a difference between grief and stress. So sometimes we kind of think, you know, I’ve got these chest pains or there’s something going on with my heart. Well, if it’s grief your heart is probably more aching or empty, but if it’s stressed, you’re probably having palpitations and a fast heartbeat. And maybe, you’re having some muscle tension because stress often leads to more tension. And so, you know, you’ve got that tension in your back and your neck and your fists and tensions in your relationship. You’re getting anxious and you’re edgy and you’re irritable.
Whereas if it’s more related to grief, sometimes instead of that muscle tension, it’s more like I have this emptiness or this ache in the pit of my stomach, or I’m isolating or withdrawing from social interaction. So I’m feeling more sad or numb or helpless or guilty rather than edgy and irritable. So these aren’t comprehensive lists, but it helps you a little bit to realize that there is a bit of a difference. The other thing about our experience during the pandemic is that it’s been traumatic, and we’ve heard a lot about trauma. It’s good that we’re learning a lot about trauma and how it affects us. And this psychologist, Dr. Jennifer Yaeger, she says, you know, really we’ve had these responses during the pandemic that are the same things that people would have to trauma. Part of our brain shut down in order for us to survive. And so, sometimes we’re wondering why can’t I think this through, why do I have this brain fog? This is why. Feeling numb, feeling out of touch with our emotions, that’s really normal, especially if you’ve been traumatized before.
And people react differently to trauma. Some people get anxious or hypervigilant, other people might get depressed or hypoactive. But again, what we know is that in depth processing of trauma often happens way down the line. Once we feel that we’ve left that situation and we’re in a safe environment, and maybe we’re a little bit more emotionally equipped to deal with it, then we start to process it. But we’re living still in the midst of the pandemic and you’re living in the middle of PPE and still probably having visitor restrictions and things aren’t back to normal. So she says, when you’re in the midst of the trauma, just getting by emotionally and functionally is okay. You have to lower your expectations of yourself, you have to be kind to yourself, and you have to be kind to the other people that you work with and live with because everybody is experiencing this together.
Some people have heard of PTSD or post-traumatic stress disorder. And this is a diagnosable and treatable psychological condition. So remember how I said grief is not really an illness, Grief is something that, you know, it’s a normal reaction. Whereas if somebody is suffering some of the symptoms of PTSD, it can be treated. And so it’s important for you if you’re having nightmares, or if you’re having suicidal thoughts to please see someone a healthcare professional so that you can have some treatment for that. Or if you know somebody who’s having that as well. And so we’re not going to spend a lot more time on trauma, but you know, this, this continuum of grief runs through trauma and all different kinds of things that we experienced because of the pandemic. I want to take a minute to tell you a story.
And this is a story that was just printed last month, Global News reported on this, and they were talking to different kinds of people for medical staff about why some of them are calling it quits and maybe, you know some people that you work with, or this relates to you. This is a story about Sharon Tonner-Clarkson, and she never imagined that she would leave her job as a personal support worker. She worked in palliative care in Toronto for nearly a decade, and she said it was grueling and emotional work providing end of life care for her elderly clients, but she loved it. So much so that she became a coach training new workers in the field. And she says, I love caring for people. First and foremost, especially at the end of someone’s life. I love helping them facilitate the end of life that they want. So throughout the pandemic, she kept going to work and did the outbreaks and the scares.
She watched colleagues getting sick. She had her own daily stress. There were constant policy changes, and she kept showing up until she couldn’t show up anymore. And she’s now off on stress leave without pay. And she says, I’ve been doing this work for a very long time, but this whole pandemic and this whole situation just broke me. On her lunch break, she would lock herself in her car and take off her mask and break into tears. And one day she said she just snapped and walked out. “I left there in such a state. I couldn’t even drive my car.” She said, “I couldn’t take it anymore. I had to get away.” And now she said, she doesn’t think that she’ll be able to return to the job that she once loved and dedicated her life to. Global News also spoke with other PSWs who said that they were experiencing anxiety attacks and heart palpitations and mental and physical fatigue.
Some continue to work out of necessity despite their worsening mental health, while others have left the industry completely. So a lot of sadness out there and I think a lot of things that all of you can relate to. And so it’s so important to check in with yourself and make sure you’re doing well and make sure you have the support that you need.
In September, we’re going to be talking a lot more about self-care and resilience. But as we listened to this presentation, and as we see all the news reports, we know that this impact of COVID on grief is extensive. We’re expecting there to be a surge of grief related issues for healthcare providers, including PTSD, and a tsunami of families with huge grief issues related to the inability of them to be with their family members when they died, to celebrate or ritualize their death, everybody’s stuck in this place.
I just want you to know that there’s a Canadian Grief Alliance group that you can find out more about on the virtual hospice website. And they’re actually lobbying the government for a national grief strategy that includes a hundred million dollars in funding, because we know we’re going to need to have so many programs in place and a huge public awareness campaign in every community to help people deal with the fall out. And a lot of this is grief.
Rachel N. Remen says, you know, she looks at health care workers, she’s a physician herself, but she says “The expectation that we can be immersed in this daily and not be touched by it is unrealistic.” And that’s so true. And I like to say that we are wounded healers, but we have to remember that we’re healers first and foremost. And by the fact that we’re wounded, the fact that we’re grieving, the fact that we’re suffering, the fact that we’re exhausted, you know, somehow our suffering puts us on a level playing field in a way with the people that we take care of who are also suffering. And we have to just remind ourselves that every day we are able to walk into our workplace, the little tiny things that we do with our presence, with our smile, with our touch, with our pleasantness, with all the ways that we help people to feel better, we’re bringing the light and the life and the healing into such a difficult dark suffering place.
And so hopefully that will help to remind you that you do have it in you, even though you’re suffering, to continue to heal. And as Dr. Remen says, people have been healing each other since the beginning of time. Long before we had psychologists and internists and doctors, we were just there for each other. And the healing of our present woundedness can lie in the capacity that we have to heal each other, the power in a human relationship, the power in a touch, in a smile, never underestimate that. And just know that it’s the little things that you do that make all the difference in the lives that you touch.
So what are some of the strategies that, that we have personally around trying to stay well while we’re processing the loss?
The very first one is support. We need to make sure that we have enough support both in our personal lives and in our workplace. Who do you talk to? Who do you vent with, who do you debrief with? Both at home and at work and making sure that you’re confiding in somebody you trust if you’re struggling. Access a health professional if you need it, that’s a sign of health. It’s not a sign of weakness. It’s good for us to reach out. The real work of grief, you know, we hear that term ‘grief work’. The real work is sharing stories. It’s this formal and informal debriefing at home and at work. Allen Wolffelt, who’s a preemptive grief expert says really this stuff of healing is storytelling.
If you tell the story of the death or the loss, you begin to acknowledge it. But if you tell it 10 times, it moves from your head to your heart. And once you tell it over and over again, you can process it and find it become a part of who you are and what you bring into the future. And so it’s good for us to remind each other of this. And that’s the piece that we’re missing I think, because we can’t have things like funeral home visitation, and we can’t sit around and laugh and cry and tell stories with our family members because of the pandemic. That’s where we would always process our grief. So we have to find ways to do that. And we have to be creative. We have to remember that feelings are not good or bad, they just are. We don’t have negative feelings, whatever feelings we’re having are normal for us.
And we need to find creative ways to express our grief and our loss. And sometimes things like listening to music or art or poetry or nature can help us. Self-care, self-compassion, self-awareness, those are all things that can also help us focus on, “What am I feeling? What do I need?”
Taking care of ourselves isn’t something that we add onto our busy to-do list. It’s something that we make a choice to integrate into our life every single day. What do I need to nourish myself so that I’ve got something to give somebody tomorrow. And again, we’re going to talk a lot more about this in September. Rituals, mindfulness, trying to live in the present. These are all things that can help us to stay well as we process loss. Also, you know, self-compassion, managing our expectations and being a good friend to ourselves. Sometimes we’re our own worst enemy, and we expect a lot of ourselves, but to cut ourselves some slack and to be gentle with ourselves is important, and caring for yourself is an inside job. Nobody can do it for you. You have to be convinced that you need to take time, that you need to be more aware of how you’re doing and how you’re feeling and working through that and putting things in place in your life that will help you.
I wanted to show you a really quick clip, and this is Dr. Mary Lou Kelly. And some of you may know of her work with the Quality Palliative Care in Long-Term Care. I know some of you work in long-term care. Some of you work in retirement, some of you work in the community, but I think the things that she talks about with, particularly with PSWs processing grief is something that no matter what kind of an environment you work in, you know, she makes some really good points about some of the things that we need to put in place in our workplace. And when this clip is done, we’re going to talk a little bit more about what some of those are.
Dr. Mary Lou Kelley (video clip)
The staff do get very, very close to the residents. And they really did, I think, have an underappreciated burden of grief that contributed over time to, you know, kind of compassion fatigue, and burnout, because it wasn’t really part of the tradition and culture in long-term care to really support the staff when a resident dies. This is part of the tradition in hospice, but again, with the changing role of long-term care that hasn’t really been embedded in the culture. So personal support workers talked about the importance of having a sort of a post-death debriefing, where they could remember the resident there, where they could support each other, you know, have the positive kinds of feelings about that resident. And we worked with them to sort of both get support and permission from the management for this to happen because they’re so busy.
They, they didn’t really feel that if we take 15 minutes and do this, to help ourselves regroup, to go back and still provide care to the next resident, like we think we’re going to get in trouble. And so now it’s been, kind of approved as a very important part of workplace wellness. I think in, from a psychological point of view, that’s very much the case and they’re very good at supporting each other, but we’ve been able to teach them a little bit about post-traumatic stress and compassion fatigue and help them recognize a few signs and symptoms of where a colleague may be in trouble. So we’ve tried to really support them in that way with, with the post-death debriefings. And I think that’s something that all long-term care homes need to incorporate into their workplace wellness strategies.
So workplace strategies for wellness are really important. So no matter where you work, hopefully you’re already doing some of these things, but if you’re not, you’ll have some things to, bring back and, and ideas to share with your colleagues and your managers.
There needs to be able to be a naming and a discussing though, of issues, including grief and burnout and compassion fatigue in the workplace. There should be the availability of support, whether that’s through an EAP program, but maybe you work for a small organization and you don’t have EAP per se, but you might have access to a social worker or perhaps the grief counselors or spiritual care coordinators that work in that organization can be accessible to the staff. But we all need access to mental health professionals when we need that. We need to have a supportive work environment and proper opportunities as Mary Lou said for debriefing and for talking about the people we care for after they die.
Professional development, mentoring, ongoing education, a really big thing is adapting workloads, making sure that people can get their breaks and their vacation. And I know that that’s difficult, that there’s always difficulty with staffing levels, but we had difficulty with staffing before the pandemic. So we just have to figure out how people can get their days off because they can’t keep working like this. Staff appreciation, and you know, we keep hearing the superhero mantra and in some ways it’s nice that people kind of think that people on the frontline are superheroes for all the stuff that they’ve done, but we are not super-human. And so sometimes we expect ourselves to be superhuman, that we’re not supposed to grieve, that we’re not supposed to get exhausted, that we’re not supposed to complain, but we’re only human. And we do. So sometimes that superhero mantra isn’t very helpful because people have expectations of us that they shouldn’t.
And we have to rely on making sure that we understand ourselves what we need. So promoting and supporting self-care and wellness in the workplace. A lot of times I’ve been involved in helping to facilitate support groups, even virtual ones, ones where, you know, staff can get together on a zoom call because they can’t get together at work and just talk or a cup of coffee and just talk about how they’re doing. Formal and informal ways to support each other, maybe belonging to a community of practice, having those protocols after death and embedding these into the culture and the practice. Having rituals, just ways for the staff to celebrate together, ways to remember residents, ways to remember colleagues who have died, ways to grieve together, ways to celebrate, ways to laugh and cry together. Communication’s important sometimes, a private group, a closed social media group where staff can kind of talk to each other away from work, newsletters, that can help to build relationships, but developing a healthy workplace culture and encouraging input ideas is really important. I think that really, one day we’re going to look back on this and realize just how hard it was, but just how well we did with what we had. Because the human spirit is than anything that can happen to it. And every single one of you who were on this call today have so much to celebrate. And although you’ve experienced so much suffering, you have the capacity to continue to bring healing and light into the lives of your family and your colleagues and the people that you care for.
So I just want us to take a minute, and again, you can use the chat box, I’d like for us to have a little bit of a discussion about, you know, what are some of the things that you do at your workplace already, to help process the loss of your residents or your clients or your patients wherever you work. And sometimes we learn a lot from each other by sharing ideas, or what are some other workplace wellness ideas that you have, or that you think have worked well in your workplace. So let’s just take some time to kind of put some answers in the chat box and Kath will help us kind of walk through some of the things that you’re sharing.
Michelle, a few things, initially much of the chat reflected on your earlier question about the losses people have experienced and, for a few people just a significant number of important people who died over a period of time and one, and then another, and then another and another. So definitely speaking to what you talked about on compounding losses, et cetera. And one person who had actually written about that said “Life doesn’t stop for anyone, I’ve learned. So keep on swimming I say”, and Jackie has written,
“For nursing and PSW week” [which in Ontario was I think the same week or next to each other] “our organization created a wellness room with a massage chair, music, fitness equipment, creative outlets, like painting and coloring, bracelet making and, get this, chocolate, the room stays and only one person goes in at a time.”
So very, very, creative and a real commitment from that employer to designate a room to the teammates. Somebody wrote about just simply lighting a candle. And a colleague of mine was here, a dear friend that I’ve known for years, and she’s the chief of Nuu’chah’nulth tribal council. And so, she was heading that night to a vigil for the children whose have been found in Kamloops. And she mentioned she was going to need to stop and get a candle. And I went in the house and found her some candles she could take and just sharing something like that felt like in a play, in a piece, we were there with her. So, the symbolism of candles is beautiful. The symbolism of sharing candles, you know, what a wonderful gift. Andrea says, “
We like candles and have a book that we can write in without using names about how our resident taught us or made us feel. We have a yoga mat, and we write condolence cards for the families and continue to welcome new ways to process our emotions.”
Michelle’s comment about debriefing, Mary Lou Kelly had an incredible PSW working with her, her name on the research project, and her name was Jackie McDonald. She was a PSW working in long-term care, and she was brought on to the study as a champion. Well, she was able to help identify some of the needs, and she also helped to lead the debrief sessions, which I think are recorded both in our texts as well as I think palliativealliance.ca still maintains some of those resources, and has written,
“We have a memory book about each resident who has died so we can reflect and remember them. We also send out a card to the family that we all sign, which helps us, to connect with them,” which is that’s lovely. “We also celebrate all who have passed with the service that we can attend and even meet family who are invited.”
Daniel has mentioned singing, debriefing and talking among our little group of coworkers, which we always say we are the IAH family. And she listed greeting everyone with smiles, even though wearing a mask. I feel like they all felt the love. I believe they all felt the love. So, squinting eyes to express smiles. Yes. Our book is a memory book somewhere to sell it to also some celebrate the lives of our residents. Daniel has said playing a soft melodious music. So just a number of different ideas and keep those ideas coming. Michelle’s going to finish up here, but…
Anybody else had other questions or comments?
The comments are still coming and what we will do also, one of the wonderful people who’s on the call today, is Richard and he’s recording, and I forgot to mention him. And Casey is on our project. And what we’ll do is we’ll put together these ideas and share them on probably the Life and Death Matters Facebook Community page. If you go to Facebook and Life And Death Matters Community, we’ll share some of those ideas there, as well as perhaps in a blog post. Marcella has also mentioned about that debriefing process. We’re often asked to share the process to deliver the peer led debriefing, also called team check-in in some areas they’re really a great opportunity for stuff to have grief acknowledged and support one another. Jill, could you also just put in the chat where people can find, or access you for more training, and Michelle, we’ll let you finish up here.
Okay. I think that, you know, the thought that I want to leave us with is that we need to remember how much of this heaviness that we’re carrying is really grief. And yes, we have stress, we have exhaustion, we have fatigue, but to really do that soul searching how have that cup of tea and just sit and think and really try to, you know, understand how much of what you’re carrying is loss, and to continue to be gentle with yourself, continue to try to process those losses and tell those stories. Because as I said, that’s the work of grief. And if you find yourself getting into trouble with how you’re coping or not, please, don’t be afraid to reach out and to talk to somebody about that. Because this has been a very, very, very difficult time. And, we all want you to be well. We want you to be able to continue to carry the light that you carried and be the person that you came into your work being, and be able to give what you can. So you need to fill yourself up and, and again, Kath is going to remind you, but our September session, we’ll talk about in more detail, some of the things that we can do to take care of ourselves.
Thank you so much, Michelle, wonderful. And the comments have been very much acknowledging the losses that people have been feeling, some associated with grief, some impacted or sorry, some associated with COVID and some, it just impacted by COVID. People are now putting in their names and emails so that Casey can choose one of those. She’ll do a random check and do a random piece to get those. Now, those we’ve got at least two classrooms that are here. So maybe you can just put in the name of one lucky person or put in the name of your class. And then if you get chosen, you’ll have to draw it at that end. So I’d like to take a minute to tell you, first of all, thank you, Michelle. Thank you. Thank you forgiving voice to the challenges that people are experiencing.
You’re welcome. Once again, this is a joint education project with Canadian Hospice Palliative Care Association and Hospice Palliative Care Ontario and Life and Death Matters. This particular webinar series has been started about a year ago. Maybe it’s always been in a seed in my heart as a way to help personal support workers, healthcare assistants, continuing care assistants gather. And on the one hand, I would have loved it to have been small, so we could be intimate and just share with one another freely about what’s going on in our worlds. But in another way, I’m so glad that there has been such an outpouring. Please do feel free to reach out to the Life and Death Matters Community on Facebook and join in that conversation. Somebody said, “I’m so glad to feel appreciated or something about that, I don’t get that at work,” and I’m sorry to hear that.
The PACE for Personal Support Workers is palliative care education for personal support workers, specifically written for you to support you to learn the skills for providing excellent hospice palliative care and integrating a palliative approach, no matter where you are working. Sometimes people think of palliative care as being a specialty thing. Michelle has definitely addressed the fact that working in long-term care with short turnover, short lengths of stay shorter and shorter all the time. You are doing the work of caring for people who are living and dying just as those of us working at hospice are. Some of the unique features of the course include, each course is interactive and include videos, podcasts, and learning activities. Each course is short, and it takes about three hours to complete. You can learn when it’s convenient for you.
So if you’re one of those people who can’t sleep at night, great time to study, you can select courses that meet your current needs. You can complete all courses and receive, and this is exciting, *drum roll*, a national certificate in palliative care from CHPC, HPCO and LDM. We thank CHPC, HPCO, Life and Death Matters, Health Canada, and The Sovereign Order of Saint John of Jerusalem for supporting this project. Thank you for attending and being here before you exit out of zoom, please provide feedback on the quick survey. It helps us to have a sense of how this went for you. If it was too long, too short, if you have other topics that you would like, please just take a minute. The recording of this session will be posted on the Life and Death Matters website. And my understanding is you will receive an email within a couple of days with the link to that. And again, feel free to share it.
The next webinar will be on September 7th, the first Tuesday of September. And we will be talking about fatigue, burnout, resilience, and strategies on self-care, reflection, and self-compassion. Again, if you want to collect, connect with colleagues from across the country, you are welcome to join the Life and Death Matters Community Facebook page. I think it’s facebook.com/groups/ldm community. You will also receive an email announcing the webinar the day before the next one. And again, you’re welcome to share those with your friends.
Stay tuned for more information about PACE for PSWs. PACE will be formally launched in September but is also having some sneak preview launches. Now, please, if you want to connect with us one way you can do it is by going to the lifeanddeathmatters.ca website, and you can just hit on contact us and we will be able to respond.
Bernice has said be safe and take good care of fellow caregivers. Kristen has said, stay safe, stay healthy, be kind, you are all valued, and all appreciated, we’ve got this. And I want to finish with a quote from somebody who writes me and their quote at the end of their signature is “stay safe and stay sane”. I love the idea, Michelle, that grief is our response to loss. It is healthy, natural response to adapt to our losses. And so when I cry, when my grief, when I am sad or fatigued, then I just am able to go, “Good. This is good. This is what I’m doing to adapt. This is my grief, and this is my healing journey.” And it’s pretty nice to know about hard times and things that feel hard can be healing. So thank you everyone. If there’s any other comments, you’re welcome to make them here.
And again, another one, thank you. It’s my pleasure to learn and proud to be a part of this process and learning and sending all my love to our fellow caregivers and our heroes. Lots of lots and lots of hugging. So on my birthday, I got a message from my dear cousin, brother, and he says, this is your year. He says, Kath, by August, the restrictions are going to be lifted and you will be able to hug. There will be hugging. There will be complete strangers hugging and strangle hold hugs, this will be a hugging Renaissance. So I think he could have been addressing all of us when he said this is your year, because I think there’s a lot of huggers in this room.
That’s for sure.
Lovely, lovely. Okay. Any last names and emails enter them in. Okay. And Casey’s going to have quite the job of counting up how many names there were to the bitter end and then choosing the random number on the random numbers site on the web, and then counting down to that name.
Thank you, Kath, for facilitating today and for everything that you’re doing for the PSWs with your program. See you all in September!
We had some comments today from a number of people, but one of them has been just how important it’s been, that we as a country value better the role of our personal support workers. And if there’s something that this group has committed to doing, we’re committed to celebrating. So thank you very much. So, thank you very much. I think Richard closes us off now and we will see you in September. Isn’t there a song about that? See you in September? If I could carry a tune, I would break into song. Thank you though. I know all the best.
Speaker 1 (00:00):
Welcome everyone. Welcome to the third of the free webinars series for personal support workers, healthcare assistance, and, , community care assistance, or continuing care assistance brought to you by life and death matters. The Canadian hospice, palliative care association and hospice palliative care Ontario. We have over 700 people who have signed up to be informed and to attend at parts of this series. We did send out reminders a week ago, yesterday and today, knowing how summer has, hopefully just refreshed us on washed off some of our memories of things that we had scheduled for the fall. So we wanted to make sure everybody was, , alerted and reminded. So welcome. It’s exciting to be here with you re realize that across the country, healthcare assistance, continuing care aides and personal support workers are called by different terms, but we will refer to you as personal support workers in this series.
Speaker 1 (01:01):
I do love the fact that the work that you do is personal. It is so about support and it is so much work. And so we use that term. This session on fatigue, burnout, and resilience is specifically developed for you to help you address these very, very current, very real issues. And our hearts are with you, especially as we enter this fourth wave of the pandemic, as you strive to provide best care in your work setting, strive to care for family and friends and community. My name is Katherine Murray. I’m a hospice palliative care nurse, educator and author. Some of you will know me because you may have used these texts that are shown in the, in the PowerPoint here. You may have seen those in the, um, in your PSW training or in your orientation or your ongoing education in your workplace. So the texts that I’m referring to, and that is also used in the pace for PSW is integrating a palliative approach, essentially for personal support workers.
Speaker 1 (02:09):
I’d like to start by just giving a tribute to you as personal support workers you are often referred to as the eyes, the ears and the hands of the healthcare team, people that you care for often describe you as the heart of the team in the report on staffing and long-term care released by in a year ago, by the ministry of long-term care in Ontario, you were described as the backbone. And, and indeed you do so much of the heavy lifting in the past year. You have especially been called, or you have particularly been referred to as heroes and heroic you are. But the reality is, and we want to address this today. That as much as it’s a thrill to be called a hero, I think that would be kind of cool as much as it’s incredible to be called a hero. The reality is that your bodies are normal.
Speaker 1 (03:00):
They are human. They’re not superhuman. And you need to take care of yourself. Burnout fatigue, grief are realities. At this time across the country, we are hearing the same theme from nurses, healthcare workers, physicians, so the whole healthcare, all healthcare professionals. And so it seemed especially important for us to address this topic today. Just a couple of comments in preparing, oh, first of all, I would like to also though, before I introduce our speaker who we are honored to have today, I would like to introduce you to pace for PSW, the palliative care education for personal support workers. This program is developed in a collaboration between the Canadian hospice, palliative care association, hospice, palliative care, Ontario, and life and death matters. Each course is written specifically for you to learn the skills for providing hospice and palliative care for integrating a palliative approach. And each of the courses are geared to helping you meet the provincial and national palliative care competencies.
Speaker 1 (04:12):
Very exciting. There are 10 courses in the program offered in French and in English. The first five courses will be available when registration opens in the coming month. and the remaining five courses, one will open about every six to eight weeks and all 10 courses will be available by March, 2022. Each course will be about one and a half to two hours long, completely independent studies. So you can study any time of the day or night when it works for you. You are not online at the same time as other people. So for example, this particular course, we would call this particular webinar. We would call synchronistic in that we are all here together today. But in fact, you can also listen to this webinar later with the online courses, each course is available, will be available once you register for it, each course will be available and you can complete it anytime of the day or night.
Speaker 1 (05:15):
One of the exciting things is when you’ve completed all 10 courses, you receive a national certificate from CHPCA, HPCO and Life and Death Matters. So for more information, and to sign up for more, for further information, go to www.paceforpsw.ca. And, uh, today we will draw a name at the end of the session. a random number will be, or random name will be drawn, and that person will receive one course out of the 10 courses, one course to attend free of charge. Now, I will introduce you now to my esteemed colleague and friend Michelle O’Rourke. Michelle is a hospice palliative care nurse, and is also also an author and has some beautiful books that she’s like identify the images here. Michelle is presenting this session, titled fatigue, burnout, and resilience. She is also the cohost for this series. Please enjoy the comments contributed, by Michelle and also please participate and, and make comments in the chat as we go.
Speaker 1 (06:28):
if you want to send a comment specifically just to the panelists, then you can choose to send it just to the panelists. If you want to send it to the whole entire group, just click on everyone in the chat. If you want to make a comment and remain anonymous, just put anonymous or confidential at the beginning, and then Michelle or guy can raise whatever concern it is you’re raising, but we won’t use your name. When we raised that issue. Michelle, I’ll let you take it away. After Michelle speaks, we will have time for discussion. And then, we will have, a couple of minutes to just tie up. And before you leave, we’ll ask that you complete also the survey about today. there we go. So that’s our agenda for today. Our outline for today, Michelle,
Speaker 2 (07:17):
Thanks very much, Kath. I’m really excited to be here. And I, I’m really excited about this, about this topic, because it’s something that I’m very passionate about. And, if you joined us back in may and in June for the PSW webinars, then one in may was about our experiences during COVID and then one in June was about grief. those are, those links are still on the life and death matter website. So you can visit those if you, if you weren’t able to join us. But when we talked extensively about grief and in particular, the grief of COVID, we said that, you know, the next webinar is about how do we address some of this stuff that is happening to us during this difficult time. And first of all, I just want to thank you for the work that you do. As caste said, you’re the backbone, you’re the eyes and the ears.
Speaker 2 (08:10):
You’re really the heart of, of the work that is taking place. So intimately at the bedside, whether you work in long-term care, whether you work in the community, whether you work in retirement, whether you work, in another setting or work is so very, very important. And so today what I’d like to do is just kind of walk through a couple of different things. We’re going to look at the many, many stressors that we have in some of these, won’t be new to you, but I think we don’t realize how much we’re carrying on our shoulders at any one time. We’re going to talk about burnout and compassion, fatigue, and PTSD, and the strategies that, help us to avoid those things happening and look at the concept of resilience and the things that can help us to stay strong and healthy. So when we think about the pandemic and we think about the reality that we’re living in, in our workplace, I think, you know, sometimes you wake up in the morning and you feel so heavy and you think, why am I feeling this way?
Speaker 2 (09:11):
And you can’t pinpoint it, but I really believe it’s a whole combination of factors. And the first one is grief. We talked a lot about this at our webinar in June grief is our response to loss and it doesn’t mean just a response to the loss or the death of a person. It’s a response to loss in general and the loss of our, ability to go get groceries. The way we used to the loss of our ability to gather with our families, you know, the loss of our ability to work without PPE. Like we’ve lost a lot of things. And so we’re suffering this constant collective grief, and it’s not just in our workplace, it’s around the entire world because we’re all living through this pandemic together. So there’s a lot of grief that I think is right at the top of the list, in what we’re experiencing every day, whether we realize it or not worry and anxiety, there’s so many stresses and we have stresses at home as well.
Speaker 2 (10:10):
We’ve lost control. we don’t make the rules about the lockdowns and about the vaccines. And so there’s continuous change. There’s new rules, there’s physical, mental, emotional exhaustion. And the big thing is we haven’t had time for downtime. We haven’t had time to regroup, so we don’t have any reserve. We’ve been at this for over a year and a half now. And we just keep trying to chug along every day, our return to whatever normal is going to be still seems so far off, even though, you know, we have that scenes and, you know, we also have a fourth wave now and it’s, it’s very, very difficult and very frustrating for us because we don’t know what the future is going to and we just long for a break. And I’m sure there are many of you who haven’t been able to even have time off, let alone take a vacation.
Speaker 2 (11:01):
And so we long for that to come back. And if we take those things that we experienced during the pandemic, and we add in our everyday stressors, just our personal stressors, you know, how do I pay the bills? How am I going to get everybody to all their sporting events? How do I get my mothers to the doctors? And, you know, just the things that are happening in our personal life. And then we have the things happening in our professional life. You know, our workload, our work schedule, our frustration, maybe at getting called in time and time again, because people are off sick or we don’t have enough staff, the system and organizational stresses, you know, the healthcare system is really struggling. It’s very, very stressed. And, so as long-term care and so is community care. And so, you know, we have those stresses where we’re frustrated with what’s happening in the system.
Speaker 2 (11:55):
We have cultural stresses, the stresses, you know, being thrown into a, election right now and, and living with all of the reality of the residential school trauma and, what’s happening to people of color. And there are so many cultural things that are just, they maybe are in the front of our mind all the time, but they’re in the back of our mind, we struggle with that. We want to say the right thing. We want to do the right thing. And then globally global warming climate change, you know, half of the country’s been on fire and having heat waves and there’s hurricanes and there’s, you know, severe thunderstorms and tornadoes. And we know that, you know, something like climate change is in the back of our mind, we’re trying to do our best. We’re trying to teach our children, we’re trying to recycle, but these are just inklings of stress that kind of sit in our body all the time.
Speaker 2 (12:54):
And then we have the challenges that are inherent in the work that you do in being a care provider and being a personal support worker, physical strains. There’s not enough time. There’s not enough help shift work having to, you know, do so much lifting, emotional things, guilt and shame, feeling, not supported, feeling isolated, feeling hopeless, our mental strain, you know, being exhausted, having so many things to do and not enough time. So these are challenges that we carry just because we’re caregivers. And then there’s the challenges we carry because we’re caregivers during the pandemic. So, you know, we haven’t been able to provide the care the way we used to the way we wish we could, and that causes us moral distress. It, it adds more pain to the suffering. So the fact that we’ve had visitor restrictions that we’ve maybe had to be family for people, as they said goodbye to their loved one, because their family was not allowed to be with them, losing our residents, losing our clients, some of them to COVID some of them to just tragic circumstances, having to use PPE all the time and not being able to, not so much fear of our own contact or brain COVID home to our loved ones, or perhaps you were sick with COVID yourself, having the loss of help, our volunteer programs aren’t running.
Speaker 2 (14:18):
So we don’t have the people that can help us out in our day-to-day work. And there’s never enough resources. There’s never enough staff, there’s never enough money. And so all of these things together, we carry on our shoulders, whether aware of them or not. And, and so they make us heavy. And so when we look at a strategy for addressing challenges, I really think there’s three different things that we have to look at. And the very first top priority is support. Making sure that you have enough support, making sure that you have somebody to talk to both in your personal life and you have opportunities for debriefing in your professional life, helping to build more supports into the workplace. And the second one is knowledge coming to a workshop like today, arming yourself with understanding and education about what is passion, compassion, fatigue, and burnout.
Speaker 2 (15:14):
And how do I mitigate that? How do I take care of myself so I can stay as healthy as I can during these difficult times, taking a course like, uh, pace for PSW is one of the components of that course will be about taking care of yourself. And so, you know, arming ourselves with knowledge is really important. And the third one, I think I like to call perspective sometimes just changing the way that we’re looking at a situation, we can have a more positive outcome, and we can have personal and professional growth, just by how we approach a challenge or a situation. So the first one being support, it’s important for us to have enough support at home and at work, checking in often with yourself, checking in with your colleagues, checking in with your managers, you know, even just that simple, how are you doing?
Speaker 2 (16:12):
I mean, how are you really doing? And sometimes we’re doing okay, but sometimes we’re not doing okay and we need to have a safe place to talk about. Sometimes I’ve been involved in, uh, lots of different support groups that are just happening over zoom people kind of sign on and they can talk about what’s happening because it’s hard for people to be face-to-face at work, especially where, when you work in the community and, you’re by yourself, or if you’re having a staff meeting, whether it’s in person or whether it’s over a zoom platform, to be able to have a few minutes at the beginning for check-in and just to go around the group and say, how are you doing? And, you know, it’s so important if you feel that you’re struggling, that you’re not doing well to seek out professional help, to talk to somebody you trust to see what it is that you need to stay healthy. And that’s not a sign of weakness, that’s a sign of health. You have to invest the time you need for this and make it a priority because, you know, we can’t change what’s happening. We can’t get rid of this pandemic that we’re living through as traumatic as it is. We can’t fix it, but we can hold space and be present for each other during this time, both for our family and our loved ones for our colleagues, for our clients, for the, our client’s families, we need to build in that support.
Speaker 1 (17:41):
Michelle. Yeah. just comments that have come in and a few private ones too. And one person just mentioning how difficult it is to have people protesting in front of their facility about whether to wear masks or not, you know, not wanting to wear a mask. You know, how especially difficult that is when, you know, months ago people were applauding and, you know, hitting the pots and pans and all to acknowledge and tribute the incredible work done. And now to have people doing this and targeting the site where these guys are working so hard.
Speaker 2 (18:19):
Yeah. That’s very, very difficult. And, and, you know, I read it a really good article the other day written by a physician in the United States who said, it’s so hard not to be angry at these people that I’m taking care of an ICU who have chosen not to be vaccinated. And they shouldn’t be this sick and, and it’s, and the people that are protesting, it’s so hard to be, not to be mad at them and what he found in his own reflection. He said, I don’t think that I’m really as angry with them as I am with the people that are circulating all of these, you know, false hoods and conspiracy things on social media, because really some of the people who are making these choices really believe they’re doing the right thing. And he said, I need to be mad at the, at the information they’re receiving and I need to do whatever I can to continue to take a deep breath and just give them the right information.
Speaker 2 (19:17):
And so, you know, maybe that’s a good lesson for all of us. it is really, really hard. And I know there’s dissent right in our own families of people who agree with this and people who don’t see it as important. And maybe people on this, on this webinar today have varying opinions and feelings about vaccines and different kinds of things. But you know what, we’re just all in this terrible time together. And we have to just keep trying to, to move forward and stay as healthy as we can and look for the truth as much as we can.
Speaker 1 (19:53):
And pat has just mentioned Michelle, just the lack of continuity. And at first I wasn’t sure she was meaning with, with, assignments to patients, but, but also, what people believe about vaccinations, et cetera. And then, and then somebody saying, I, it comes down to how we treat one, another vaccinated or unvaccinated, and just this whole thing that staff is confused. And, and, and how do we treat each other in a kind way? And, and I think one of the things you and I talked about too, and that you’ll come back to in your big word of self-compassion is also compassion for one another. But thanks. I just wanted to let you know, too, some of the comments are coming in so that you were part of that discussion.
Speaker 2 (20:45):
Well, thanks, cath, because when, when my slides are up, I can’t see the chat at the same time. So Kath will probably do that. She’ll kind of interject with some of your, your, comments, but also at the end, I’ve left some time for you to make some comments. So you will have time for us to kind of unpack a little bit more of this, a little, you know, with a little bit more time, for sure. So, so the first leg of this, strategy for addressing these challenges is to make sure we build in support. And so even as far as this whole thing with people protesting, make sure that you’ve got a safe place to talk about that, about how you’re really feeling. And, and even if you’re confused, it’s okay. We just have to continue to keep the dialogue going. the second leg is knowledge.
Speaker 2 (21:33):
And so learning about things like compassion, fatigue, and PTSD, and why I’m feeling the way I’m feeling and how to mitigate that. So, you know, when we look at something like compassion, fatigue, it’s a profoundly emotional and physical erosion that takes place when people who are helpers, who take care of other people for their jobs, don’t refuel and regenerate. And sometimes it’s just something that creeps in over a number of years. Eventually you maybe have some of these signs and symptoms. I don’t know why I’m not sleeping so well. I don’t know why. And, and it comes because you haven’t taken the time to refuel and regenerate and you’re becoming depleted. And when we talk about compassion, fatigue, there are some other things that can kind of creep in at the same time. One of them is called vicarious trauma. And, and that means, you know, if you listen to other people’s stories of suffering all day, sometimes you suffer yourself because of that, even though this, even though the suffering isn’t happening directly to you, or that you’re traumatized by that, even though the trauma isn’t happening to you, but you’re traumatized because you’re listening to those stories or taking care of people who are suffering.
Speaker 2 (22:46):
And so we carry that. We carry those burdens and moral distress is also kind of associated with that. And that has to do with the part of us at our heart and our soul and our values where some things just don’t sit right with us. Maybe we’re being asked to discharge somebody from, from our care and we know they’re not ready. We know they still need PSW help. And it just pulls our heart out to think that they’re not going to have the help that they need, that’s moral distress. And so we carry a lot of things where we maybe aren’t in sync with our employers or with the rules. And that causes us moral distress. Burnout is something that’s a little bit different burnout can happen to anybody, even in a non helping profession. So vicarious trauma and compassion, fatigue, those things happen, particularly the people who take care of other people for a living and, or even for informal caregivers.
Speaker 2 (23:51):
So if you’re caring for someone else and you don’t nourish yourself, you can kind of get carried out. You can get to the point where you just don’t care anymore because your fatigued burnout is where you have a physical and emotional exhaustion, low job satisfaction. You feel powerless and overwhelmed at work, but it can happen to you if you work at the bank, or if you work in a factory, it can happen to you, even if you’re not in a profession where you don’t take care of other people, but for the people that work at the bank, they maybe can just change jobs and that can satisfy their burnout. It can change the perspective, but for people who suffer from compassion, fatigue, or empathy, fatigue, if you start to develop an inability to feel compassion for others, you can’t turn that back on again, just by changing your job.
Speaker 2 (24:46):
So that’s why it’s important for us to try to keep something like this from happening to us so that we can stay healthy, and not burnout out. Totally. So kind of the flip side of compassion, fatigue is compassion satisfaction. And, and that’s when I was talking about perspective. Sometimes we have to take the time to look on the other side. We do derive pleasure from doing our work well, or we wouldn’t be doing it. You know, when our residents, when our clients, when their families tell us, you know, what an angel you are, thank you. I don’t know what I would do without you there’s pleasure that comes. And it feeds us. And it helps us to continue to be compassionate. Sometimes, you know, there’s a possibility, a positivity in our community and with our colleagues and in our workplace because we make a difference.
Speaker 2 (25:41):
And so sometimes what we need to do when we’re feeling particularly low is to really sit down and I’m going to be talking about, reflection. And self-awareness, you know, that’s the time when you sit with a cup of tea and you just kind of say to yourself, what keeps me going, how have I made a difference? And, and sometimes it’s, is this still the right job for me? But a lot of times, you know, people will say to us, maybe thank you so much, 10 times over the course of a day, but we let it roll off our back. Whereas if we sit and we let those voices come back into our minds and in the evening, or on the way home from work, where we kind of let those, words bay, our weary souls, so that we hear people, you know what, thank you.
Speaker 2 (26:31):
I did make a difference today. And, there are people that appreciate me, even when I don’t feel appreciated. let those moments nourish you. That’s one of the ways that we can sustain ourselves, especially during this difficult time. So I talked about the fact that the pandemic is a traumatic experience and it says it has been well, it continues to be we’re still in the pandemic. So we are suffering trauma just because we’re living in this time. And for, you know, what this psychologist tells us about suffering trauma is that when we suffer trauma, parts of our brains, shut down for us to survive, that is what our body does. And so sometimes we kind of think, geez, I’m not in my game, or I’ve got, brain fog. And I don’t know, what’s the matter with me? What, why am I not on my game?
Speaker 2 (27:27):
Well, it’s because we’re living through trauma, so we’re not able to process everything that’s going on around us and that’s normal and that’s okay. And we have to accept that because of the time we’re living in, because in-depth processing of trauma happens years later when you’re in a safe place, but when you’re in the midst of trauma and this last point is really important, it’s important that just getting by emotionally functionally is okay. We have to keep our expectations, realistic, our expectations for ourselves, for our colleagues, for her employers, for our family. You know, we really have to realize the trauma that everybody’s looking through right now.
Speaker 2 (28:16):
And I just want to go one step further and say, you know, when we talk about trauma, we think of something like PTSD and PTSD is really very real. but it’s also diagnosable and it’s treatable. So if you are having some of these more severe psychological symptoms, if you’re actually having nightmares, if you’re having really difficult time with your memory, if you’re finding that you’re depressed or you’re having suicidal thoughts, please get some professional help, talk to somebody that you trust. because this is treatable and you don’t have to suffer. and you don’t have to let it spiral down into something as severe. So, so just be aware of that and be aware of it in your colleagues. If you’re worried about somebody, please, don’t be afraid to say, Hey, you know what, I’m a little bit worried about you, would it help to talk to someone?
Speaker 2 (29:16):
So what would this leads us to this whole concept of needing to build resilience? And, you know, when you think of a tree in a storm and the wind comes whipping up in the tree gets pushed forward, but it doesn’t kind of break because the roots are strong because it’s got it’s grounded in the earth. And so bends and bends and bends, but it’s able to bounce back and not just back to upright, but also forward, you know, resilience helps us to move forward and then to come to be strong, to have that capacity, to move with the chaos and not break. Totally. And so sometimes we all know people that seem to have a natural capacity to roll with the punches. And, and yet resilience is something that can be learned and developed. And so all of us can do more to kind of become stronger for our own sake.
Speaker 2 (30:21):
And there’s a long talk right now about people in healthcare saying, well, I don’t want to be told I need to be more resilient because then they’re just going to pour more work on me. And, and that’s true. We, we don’t want that to happen, but if you’re looking at trying to build your resilience, do it for your, for yourself, for your family, for your loved ones, to build that capacity, to stay strong and stay healthy so that no matter what comes at us next on top of all of these stresses that we already have, that we’ve got some strength. I say COVID has taught us already that we’re resilient. I mean, we’ve been able to survive something we’ve never been exposed to before. and not just survive, but thrive. And, and so I think, you know, we’ve got resilience, and we’ve got the ability to keep moving forward. So people who are experts in compassion, fatigue, we’ll talk about people who are caregivers like yourself, people who help other people, what did we need to stay healthy? And there’s three important things, self care, improving our self-awareness and reducing chronic stress.
Speaker 2 (31:32):
So again, sometimes, you know, we kind of say, oh yeah, self-care, self-care, self-care, I don’t have to time to take care of myself. I’m too busy taking care of everybody else, but self-care is actually, it’s an intentional way of living. It’s an attitude where we work in what we need to stay healthy and nourished into our day to day routines and into our schedule. It’s not one more thing to add to our already overburdened to-do list, because you’re the only one who knows what it is that refreshes you, who holds you. You can’t give what you don’t have, and if you’re empty and depleted, you can’t give care and compassion to other people it’s easily. And I love this icon. You know, we wouldn’t let this happen to our phone. We wouldn’t let her phone battery die. Totally. So why do we let it happen to ourselves? So self care is really, it’s not a luxury, it’s a priority. And every time you plug your phone in at night, maybe you can stop and say, what did I do for myself today? And what am I going to do for myself tomorrow? What do I need?
Speaker 2 (32:43):
Because caring for yourself is an inside job. You have to be convinced, nobody can do it for you. You have to make choices that help you to stay healthy for yourself. And, only, you know what that is because for everybody else it’s different. it’s also a holistic thing where we have to not only take care of our body, but our mind and our spirit. And so we know in Colleen of care that we like to look at the whole person don’t we, well, we have to do that when we look at ourselves and when we take care of ourselves. So of course, some of the things when we’re looking at taking care of our body, again, because I said, we’re living in this time of trauma and we don’t have a lot of reserve. We don’t have a lot of extra energy.
Speaker 2 (33:34):
So don’t try to take on some great, overwhelming weight loss program or, you know, weight training program, just do the baby steps. Just keep your expectations realistic. You know, am I eating three meals a day? Am I eating healthy? Or am I just resorting to the, the carbs in the freezer? You know, so just a little, every little bit that you can do for yourself is important. If you’re tired in the afternoon, take a nap, don’t be afraid to do that. Don’t feel guilty seeing your doctor when you need to and taking regular breaks, caring for your mind during this time is really important as well. And, you know, I I’m really, really convinced about this thing on the top about taking stock of what’s on your plate. When we are givers, we love to just give, give, give, and put more and more and more on our plate.
Speaker 2 (34:33):
And we never take anything off. And before, you know it, we can’t carry it anymore. We’ve got so many things going on and in my, all, I speak to this because of experience I’ve in my own life, I’m raising four kids. And then, you know, I kind of always had two or three jobs, like probably like many of you. And I know I got to the point where I had to make some difficult decisions because I had way too much going on and I wasn’t any good to anybody. I wasn’t good to myself, to my family. I had to leave jobs and leave projects that I really loved because it was killing me. And I think that, you know, for us to really be honest, sometimes we need to just sit down with a piece of paper and say, what are all the things that are on my plate right now?
Speaker 2 (35:23):
Are there things that I can prioritize and say, you know what, after the pandemic, I can go back to that. But right now I don’t have the time or the energy to deal with it. Can I delegate it? Are there some things that I can just, let go of? You know, how can I simplify things? So I do have the energy for the things that are important, making sure we find a little bit of quiet time for ourselves every day. before we put our phone, you know, it’s like a little bit of quiet time without distraction and learning the words. No, and enough, our culture doesn’t know the word enough, you know, I’ve had enough, this is I’ve got enough on my plate. No, thank you. I can’t be on that committee right now and not feel guilty about it. So being able to be honest with our feelings is important and then caring for our spirit.
Speaker 2 (36:14):
What is it that gives you is your passion? How do you feed your heart and your soul? You know, do you just go out sometimes into nature or just enjoying music and the arts? maybe there’s some inspirational writers that you like to read and, and, you know, so many of them, you can have a email in your inbox and inspirational email in the morning, just to kind of start your day attending to your spiritual needs. Maybe you belong to a faith community, or maybe you belong to a drumming community, or maybe you belong to a, a group of people with the same kinds of, beliefs and, and make sure that you are taking part in that I know for me, some of what’s helped my heart and my soul has been, I have a really close group of friends who always would keep me honest.
Speaker 2 (37:04):
And instead of just saying, oh, well, we need to do lunch sometime. I would say to them, get your calendar out. Let’s make our date today. Because if it’s not in my calendar, it’s not going to get done. So make it a priority, whatever it is that feeds you. If you need to go for a walk around the block after dinner, if you need to go for a hike, if you need to just sit and reflect or maybe do some journaling, whatever it feeds your soul, make sure you’re fitting it into your day and into your schedule. And so how do we know that, I’m a real believer in self reflective practice and this doesn’t have to be something that is, onerous, you know, again, just sitting maybe early in the morning or in the evening with a cup of tea or, or maybe a glass of wine and, and just kind of taking a deep breath and say, wow, how am I doing?
Speaker 2 (37:59):
How did that conversation go today with Mrs so-and-so and maybe what would I say different tomorrow, or letting as I said, those thank yous and, the gratitude shower over your heart and raising yourself awareness, look at your beliefs and your biases, look at, you know, what’s happening in your body. I could always tell by what was happening in my body, that I was really stressed. And so you’ve got to listen to that. So raising our self awareness, trying to be more in touch with understanding how we’re doing. And part of that is practicing self compassion and self-compassion is trying to be an inner ally rather than an inner enemy, because usually we don’t treat ourselves as well as we treat our friends. And, you know, sometimes we’re in a situation of chaos and we have these expectations, well, I should be able to do this, and I shouldn’t be able to do that.
Speaker 2 (38:59):
But as I said, we don’t have a lot of reserve right now, and we have a lot of added stresses. So we need to manage our expectations. Sometimes we put those expectations on ourselves and if we can just take a deep breath in a time of crisis and say, you know what, you’ve got this, you’ve done this before. You know, you’re going to be able to do this today instead of saying, oh, I can’t believe that I’m in this situation. You know, we can change that just by taking a deep breath, being compassionate with ourselves. What would you tell your friend if they came to you and they were struggling practicing mindfulness, we’re going to talk about that in a minute, finding a way just to, to be compassionate to ourselves in the moment when it’s happening. Sometimes we just need to reprogram those tapes playing in our head, because maybe we’ve had people in relationships or people that were our bosses, say things to us, and those go over and over and, and they’re detrimental to our health. And we need to kind of turn those off.
Speaker 2 (40:06):
So mindfulness is really an awareness of the present moment with acceptance, noticing what’s happening when it’s happening and not focusing on the past or the future. That’s really important with COVID right now, because sometimes we can get so caught up in the difficulties and we just spend all our time wishing that things were the way they used to be or wondering when it’s going to end, but we just need to take a deep breath and say, okay, what’s in front of me. Why do I need to do today? What do I need to let go of? That’s all we can do. We only have control over this moment. We don’t have control over this virus or what’s going to happen next month. So paying regular attention to mindfulness and just taking a deep breath and focusing on the next client or the next phone call or the next conversation is really helpful.
Speaker 2 (41:04):
So mindfulness, yes, it’s fostered in disciplines like yoga and, guided meditation, those kinds of things. in the resource sheet, you can go to the website, mindfulness.org, and you can learn more about it, but you just have to find out what’s comfortable for you. How can you be more mindful? I mean, sometimes we’re just being more mindful that we eat slower and we savor every bite. So I think the last thing in this cog of, of strategies for addressing the challenges we had, support and knowledge, and then the last thing is perspective. Again, how are we looking at the situation? Is this a solvable or an unsolvable worry? And if it’s unsolvable, why am I worrying them? Keeping our expectations, not just for ourselves, but for other people really realistic right now, because everybody is working with no reserve one day, one decision at a time focusing on the present remaining hopeful because you know, the fruits here is still fragile, but I think we can find new meaning along the way.
Speaker 2 (42:15):
It’s important for us sometimes to just even titrate the news. Like I just can’t watch the news today. I have to change and just, you know, watch something or read something that’s inspiring and uplifting. And there’s gotta be a balance between looking inward and, and what are my needs and looking outward and making sure that, you know, we’re equally finding that balance to meet the needs with others and meet our own needs because compassion goes two ways. So focusing on care and compassion for ourselves, our families, our friends, our colleagues, and our clients, and practicing gratitude, being thankful for the fact that, you know, we’ve got some things to be thankful for. So what I want you to do is just take a moment and maybe put a word or two in the chat. What are some of the wellness ideas that work for you, or, or maybe there’s something that I talked about that’s, that’s new for you that you’d like to try?
Speaker 1 (43:15):
So, Michelle, just want to just share some of the ideas, first of all, just to, to summarize someone’s comment, I’m really grateful for this webinar. It’s reminding me to care for myself in order to properly care for others. And sometimes we just need a good reminder and important, uh, you know, how important we are to us and to ourselves and the people around us. people have mentioned some of the ones coming in now are about growing flowers or cooking, being outside a funny movie, pulling weeds, uh, somebody saying, I don’t ever want to hear certain words like unprecedented and in this together, some friends got a pet can even be small as a birder of fish and kayaking with so relaxing and peaceful. Yes. someone saying I’m really struggling, excuse me, with self care and always have, I’ve only been an RN for two years, so it’s been a difficult start to my career. I’m sure my new thing is audio books while I drive to and from work. And she right now, uh, alleys listening to Harry Potter, someone’s mentioning, I’ve played my favorite music. First thing in the morning, this lifts my spirit high and I feel good and happy for the rest of the day. Then before I sleep, I browse on the internet to see colorful flowers, reminders.
Speaker 2 (44:41):
It’s a phenomenal, like when you, when you see the difference that that makes in your life. And it’s just because you’ve got a, a particular playlist and a particular habit, and it changes everything in your day. That’s what we’re talking about. This isn’t something that has to take a lot of time or a lot of energy, but find what works for you. I love that one.
Speaker 1 (45:05):
And then, Jackie’s writing, I’ve just creating a poster for my office on attitude or reminder, excuse me, just a second. I’m sorry. A reminder on, to, for myself to check on how I’m feeling and how I’m presenting myself. Attitude is a little thing that makes a big difference. So what’s your attitude right now at this moment to where it’s suppose your kids, your supervisor, your employee toward life in general, are you feeling like a victim or a Victor on grateful or appreciative, bitter or tender, angry or joyful betrayed or beloved? I love that word beloved critical or congratulatory negative or positive pessimistic or hopeful, resentful or content. So take a check on your current state of mind, an attitude check. And,
Speaker 2 (45:56):
And again, cast that again. Talk about self reflective practice, and, and perspective. So, so again, these are, this is something that is easy for you to do on the ride home or with a cup of tea in the morning or the evening. Like, just take a moment. It can change your day so much.
Speaker 1 (46:19):
Oh, and fatigue. We need you in my kitchen for team. I says, I dance every time I am stressed, it’s the best way to relieve my body after work. Uh, and somebody has written, watched the wind through the trees, listen to the rustling and smell the fresh air and get grounded. And when I hear that, Michelle, I think of one of my favorite places on the planet and the favorite time of day, which is late afternoon at the end of August and the smell of the warm sun and dry grasses. Now, there was another really great con there are a number of things here, but I just want to bring a few other comments forward. So people have mentioned things like some of the craft art things that artistic things like wood-burning, personal care things like massage, pat mentioned that sometimes guilt gets in the way and so true.
Speaker 1 (47:18):
K Luca, or see, Lucas mentioned a setting at the beginning of the week, something like a pedicure or a coffee date, but she said two things. One is that you can look forward to it all week. And then other thing is that it also holds you accountable. And, Elena said to set a date with yourself on the calendar. so making an appointment with yourself just like you would make it with anyone else, which is very a great image. and then there’s someone who said, I can’t, I haven’t found what works. And I think that sometimes when we’re in the midst of this, it’s just hard to find our way out
Speaker 2 (48:00):
Well, and, and, you know, that’s, that’s a very good point and there’s not going to be just one thing that’s magical. And because of the time we’re living in, in the stresses that we’re living in, it’s, it’s something that’s going to just continue to need our attention and what maybe worked last week might not work next week, but you know, it’s to keep trying to do the little things and, and what you may notice if you look back is saying, you know what, I am feeling a little bit better than I was a month ago, even though I’m not feeling great. And so you’ll see that there’s been some movement. that’s important. And I’ve put up this, we’ve got a few more minutes to, you know, what are some of the barriers that you face in trying to take care of yourself? I, one of the ones that, that somebody talked about was guilt.
Speaker 2 (48:54):
And, and I think if I’m sitting there and those thoughts of guilt come into my mind, like, you know, I should be doing this. I should be doing that. I, I shouldn’t be spending this time on myself when you have thoughts like that. I always think, you know, we can just kind of try to push them aside, just like a little puppy. And like the puppy is sitting beside us and we’re just tapping it on the head and going there. They’re just quiet now for this, just taking that guilt and kind of trying to get it to settle down and, and, and putting it aside because it can eat away at us. And we really that piece about mindfulness and savoring and trying to take a deep breath and, change your perspective or to say something nice to yourself instead of something derogatory that takes practice and it takes time, but it’ll become more of a habit. The more we do it.
Speaker 1 (49:52):
So, Michelle, there’s some good comments here, and I know you’ve just got a few minutes left, so I’m going to just, just have a look, people as you’re, as you’re listening to Michelle, just look at some of the comments in the chat, back to you, Michelle.
Speaker 2 (50:08):
So, you know, there are a lot of barriers that we face, but we need to try to find ways, even in just little ways to overcome them. And, you know, I just want to close by saying sometimes, you know, we think, well, I do all that. I meditated, I burned candles and I drink green tea, and then I still want to smack, I love this slide because it’s not a once. And for all thing, it’s not, we’re not going to find that panacea where we found that one self-care thing and it’s magically made everything perfect. This is an ongoing, this is for life. This is lifelong that we’re going to have to keep adapting to what it is that we need so that we can stay as healthy and well, as we can in light of all the challenges that we’re facing. And one of the things that Fran squam at you talks about, and the compassion fatigue workbook is just to come up with a plan, you know, take stock, like I said, take stock of what’s on your plate.
Speaker 2 (51:05):
How can I maybe shift things? So I have more of a balance, what are some resiliency skills that I can develop, but I need to make a commitment to change. And, and how we make a commitment to change is kind of being, intentional. So maybe we can just find one little thing that we’re going to do today. One idea we heard today, what’s one change that I can make in the next week. You know, maybe I’m just going to go for a walk around the block on Wednesdays after lunch to give myself a little more exercise. I can do that. Why do I need you to do, to make that happen? Maybe it’s a longer term goal. You know, what’s something I can do maybe do in the next month. And then maybe what’s something I can do in the next year. Yes. I do want to kind of change how I spend my time on my vacation, or I want to, you know, come up with a plan for weight loss, or I want to come up with, you know, I want to learn a new thing.
Speaker 2 (52:02):
I want to take the pace program, maybe. So, you know, what can I do on a more long-term basis and just maybe sharing it with a friend or a colleague or a mentor so that you’ve got some accountability, but just choose one thing at a time. Baby steps are always the way to go. when you go on the website, you’ll be able to visit these slides again, there’s lots of really good resources. self-compassion dot org. That’s an amazing website for Kristin ness work. She’s got guided meditations on there. and I think that, th the other thing is Canadian virtual hospice. If you’ve never been on that site, they have a lot of stuff there for caregivers, as well as professionals. And one of the things they have is a self learning module on the grief that we’re dealing with as healthcare providers during COVID, and it’s free. And you can just kind of walk through it and learn about the difference between grief and stress and what are some of the strategies that can be helpful to you. So take care of yourself, take care of each other. And, you know, I don’t know if there’s other questions or comments. I think cath wants to kind of finish off, having an opportunity for you to ask about the pace program. So if you have any questions or comments about today’s work or about the pace program, put in the chat,
Speaker 1 (53:28):
Michelle, a number of comments, just, both for the group, as well as for the panelists, just, expressing gratitude for today and the opportunity to be together and to be together with such a, supportive group of people. And our hope when we had first started, the idea of these webinars was that it would be like gathering around a cup with a grip of hot chocolate around a fire, and we would be able to discuss things. And we were so excited about that, but when more than 30 people signed up, we realized that, I guess we’re not going to do the fireside chat as much as we’re going to do a presentation, but I’m so glad that you have, met, made yourself so comfortable, in, in here now, I just want to announce, that we, I just want to, nephew out the person that we had chosen has left and the rule is you have to be here.
Speaker 1 (54:34):
So would you use that same, uh, number to do it? And while you do that, I would like to just mention again, that, pace for PSW is, here to help you meet your provincial and national competencies here to help you grow. Michelle talked about, education around self-care, but for me, I just find that anytime I do education to me, it is stimulating. it is stimulating and, and for me, education is a form of self-care, perhaps. That’s why I just love to create education and resources is because I, I feel that so strongly. now before you finish, and before we, go, I’m going to name this person in just a second. When you exit, you will be given the opportunity to fill out a quick survey. It’ll take you about 30 seconds. I think, please do that and add any extra comments if you want.
Speaker 1 (55:44):
The recording of the session will be posted in the next about the next week on the life and death matters website. And if you go to education on that website, and then the drop down bar, there is something about webinars, and you can just click on that. If you want to connect with colleagues across the country and discuss any of this, please join the life and death matters, Facebook community group. So that is facebook.com forward slash group forward slash L D M community. you will receive an email announcing the webinar on October 5th, which is, by Elizabeth Costin is presenting it. And she’s a fantastic, and she’s talking about, I do not know what to say when I don’t know what to say, and the fact that we don’t have to have all the right answers, but we do need to respond. So stayed tuned also for more information about pace and feel free to, go to the life and death matters site. We’ll find the webinar piece and click on it, just seeking more information or email me Catholic life and death matters.ca. And, we will get back to you also with some more of the details. Now, the person who has just been chosen is
Speaker 1 (57:03):
Please do, please do thank you. Nythia
Speaker 3 (57:06):
No physi get Sandra
Speaker 1 (57:11):
If Sandra congratulations. So Cassandra, if you could put your email in the box in the chat box, then we will follow up with you and make sure that you get that access. Okay. And thank you to everyone for being here and what a, what a huge, what a huge time for all of you to be living through. Somebody just wrote something about we, you know, every life has its challenges and ours is COVID and this is going to get better. I was grumbling the other day when I had to put my mask on again, and I said, oh, these mouse, and this wise woman, I was sitting next to said this to will. And I thought, oh, right, okay.
Speaker 2 (58:00):
Uh, someone just asked for the contact for the pace program again, and its pace P a C E four for P S w s.ca A’s for psw.ca.
Speaker 1 (58:15):
All right. And I think pat Peterson has the final one of keep the faith and that whole thing about, you know, this days are going to get better. so thank you so much, everyone nephew, thank you for helping. And I didn’t acknowledge that I live and work in play on the traditional lands of the coast, Salish people and my sincere apologies for not starting with that acknowledgement all the best to everyone. And thank you.
Speaker 2 (58:45):
Thank you. So you in a month,
What to say when you don’t know what to say
With Kath Murray and Elizabeth Causton
| Transcript |
Hi everyone. We’re just waiting until people gathered together in the next couple of minutes.
Welcome. Yes. And it’s so nice to see some familiar faces. What a treat or fail it familiar names. We thought we would open a little bit early, so we could say hello. You’re welcome to introduce yourself and where you’re from in your, in the chat. And we’ll start just at the top of the hour and we’ll do a formal introduction in a minute. But on the screen now you get to see Michelle O’Rourke hospice, palliative care nurse, author, and speaker, and Elizabeth Causten. Who’s our presenter speaker today and a fabulous palliative care counselor and colleague, um, oh, Linda from Vancouver, Theresa from the prior Bree we know, and Diane, we know you you’re from [inaudible].
I just spent 10 days in Penn tech too, with my daughter and her family. And I just got back to Ontario. I love Penticton. First time there I’ll be back.
How lovely and Diane from so Penticton and Abba may tone. How about me? IBA epitome, Tom, first nation. Welcome. And I’m sorry. I think I butchered your pronunciation. Cindy from Brockville.
Oh, London, Ontario. I’m I’m from Chatham. So we’re close by. I lived in London for quite a while.
And Michelle, you’ve had an invitation to go back to Penticton. Anytime I’m excited. Sue and Edmonton, Kathy from Vancouver island, Lana for grand Prairie. Welcome Lana and Jane from Toronto, Mary Lee, Mary Lee from Victoria. Wonderful. Oh, from prince Rupert, Nancy. Welcome. Is it? I wish I knew if you, if you could speak and then you could tell us if it’s raining or setting or what it’s doing there. We’re going to start in just a minute. Jen, from Saskatchewan Pauline from Toronto. Oh, Atlanta says it is raining. I was presenting in prince Rupert Monday and it was pouring and this handsome first nation man said, oh, I love it when it rains. And I thought that is a good thing. He said I was born in the rain. Oh, from Boulder, Colorado. Good morning. Good afternoon, Monica. And from St. Catherine’s. How beautiful. Awesome. Just one more minute. And we’ll start got such an exciting presentation today.
It’s just so exciting to have people from across Canada who has similar interests. And, um, yeah, I, I, I have an appreciation for that. As I said, I spent 10 days in Penticton, but I drove from Ontario to BC by myself. I took seven days to go out. I stayed in Penticton for 10 days and I took seven days to come home and I just got home last night and it was phenomenal, just phenomenal because every single day was something new and the colors had changed on my way back. They weren’t changed yet on the way out. So I spent an extra day in bath. That was my treat for myself on the way home. And it was just phenomenal when I, I have such an appreciation for Canada.
Oh, beautiful. Okay. So what we would like to do is start the webinar. It is one o’clock. So let’s just give it a minute silence. So Richard can cut that first part out. Welcome to the fourth of the free webinars series for personal support workers, healthcare assistants, continuing care assistants brought to you by life and death matters. Hospice, palliative care, Ontario, and the Canadian hospice palliative care association. It is so exciting to be with you over 800 people now who have signed up for this series, which can be enjoyed live, or you can access the recording on the life and death matters website in the future, go to the education button and the drop down will have something about webinars and click on that. We have realized that some of you are referred to as HTAs and CCAs, but in this series, we will refer to you as collectively as PSW.
So we hope that that’s okay. I love the title, PSW, actually personal support worker. The work you do is personal. It is definitely support and it’s definitely work wherever you come from. We welcome you. And we hope that you will leave this session feeling the support of other PSW and the support of life and death matters. C H PCA. And HPCL, my name is Katherine Marie. I’m a hospice palliative care nurse and educator author that ontologist and founder of life and death matters, which is a Canadian palliative care education company. And you may know some of the resources or have seen some of the resources that we’ve done for specifically for personal support workers. I live work and play on the traditional unseated territory of the coast, Salish in particular, the west Saanich people and grateful to be neighbors live just south of say out across the peninsula from start lip and south of package and, and say, come communities grateful for them like to acknowledge that we are just days from the national day for truth and reconciliation and how grateful I am that we are, that this has been acknowledged as a country and, and hope that it’s one more piece of healing with us today is also Michelle O’Rourke, um, hospice, palliative care nurse speaker, and author, and is here as a, um, uh, often as the one who’s cohost, but she’s, um, today she’s going to be, uh, an extra, a little bit in the background, but she may chime in for questions and answers and comments at the end, as personal support workers, you are often referred to as the eyes, ears and the hands of the healthcare team people you care for.
Sometimes describe you as the heart of the team, unfortunately for you. You’re also often the noise, the nose of the team in the Ontario report on staffing, um, in long-term care released on, uh, July 30th, 20, 20, you are referred to as the backbone of the long-term care system. And yes, you do much of the heavy lifting this past year during the pandemic in the media, you have been referred to as heroes, and though you are heroic. And though you seem superhuman to those you care for the reality is that you are very human. You deal with the same real realities of fatigue that normal human beings cope with. And our hearts go out without to you, especially at this time. And we hope that this series can be one more way to one way to just provide some support. One of the purposes of this series is to introduce you to pace for PSW is the program.
This program is developed by CHPCA HPCO and Life and Death Mmatters. So PACE for PSWs stands for palliative care education for PSWs, and of course pertains also to HCAs and CCAs. Um, each course in this, um, 10 course online program, um, is designed specifically for you to support you, to learn the skills for providing hospice and palliative care and for integrating a palliative approach, some of the unique features, and we’ll come back to this at the very end of the webinar. So the program is 10 includes 10 courses. Each course is interactive, including videos, podcasts, and learning activities. Each course is short and takes approximately one to one or one and a half to two hours to complete. You can learn when it’s convenient for you. It’s called asynchronistic. So you’re not doing it at the same time. You don’t have to meet online with other people.
Um, you can select those courses that meet your current needs. You can complete all 10 courses and receive a national certificate in palliative care from CHPCO and Life and Death Matters. We thank CHPCA, HPCO, Health, Canada, and the Sovereign Order of St. John’s of Jerusalem for supporting this project. We’re excited to announce that at the end of the webinar today, one of you who still in online will be randomly chosen to receive one free course registration for the new online program. The recipient of that award for last month was Sylvia, Cassandra. So Sylvia, if you’re on, or if anybody knows Sylvia, please put that in the chat. We’d love to know. And, um, meanwhile, we are in touch with, we’ll be in touch with Sylvia. We’ll respond to the end to questions at the end of the session about pace for PSW. And now I am delighted to introduce you to Elizabeth Costa.
Our presentation today is titled what to say when you don’t know what to say. Uh, Elizabeth Causton is my dear colleague and friend, my esteemed palliative care counselor teacher, uh, presenter. We often hear people say my biggest fear is not knowing what to say. What, what if someone asks me such and such and feeling people feeling the need to have the right answer or just say the right thing is incredibly stressful. The good news is that we don’t need to have the right answer. We cannot answer all questions and we cannot fix all suffering. In this session. We will look at the basics, the importance of presence and provide some helpful tips for caring conversations. This session will highlight elements that are discussed in the new pace for PSW is online program. At the end of the session, we will again put one name in, um, we will draw one name for someone who will receive, um, a free course. Now I’m going to turn the time over to Elizabeth with a great big thank you to Elizabeth for being here. Thank you, Elizabeth. And I will coming come and go during this presentation, and then we will have discussion at the end of Elizabeth’s presentation. You are more than welcome to, um, um, you are more than welcome to put comments in the chat as we go, and we will address those also at the end. Thank you. So Elizabeth, over to you.
Thanks cath. Thank you. And welcome to everyone who’s attending from my goodness all over Canada. And also I heard someone coming from the states. That’s great. And welcome to what to say when you don’t know what to say or how to make difficult conversations easier. So in this presentation, we’re going to look at how to engage in difficult conversations and respond to difficult questions in ways that maximize your information, gathering skills and therefore your value on your healthcare team, but in ways that also help the people that you care for to feel like they’re being seen and heard and validated. So after a brief introduction, and, uh, I would like to share a strategy with you and some relevant examples that hopefully will help you begin to feel more comfortable, engaging in difficult conversations, responding to difficult questions, and maybe even begin to see them as opportunities to improve your skills and improve your self-confidence.
So the premise of this presentation is that as PSW, you are uniquely situated on the healthcare team to be valuable information gatherers because of your close proximity to families, residents, and clients, sometimes for long periods of time, because of your capacity for building relationships and fostering trust and because of your excellent skills in companioning and listening. So, because information gathering is one of your areas of extra expertise. I want to propose that the most important question to ask when confronted with a difficult question or a difficult conversation is not, what am I supposed to say, or what am I supposed to do? And there are two reasons for this. First of all, these two questions imply that there not only is an answer to those questions, but that there is a right answer. That there’s a right answer to the question. For example, what am I supposed to say to someone who’s dying?
What am I supposed to do about somebody who is really angry? How do I make someone feel better? What am I supposed to say to someone who’s grieving? But when you think about it, how can there be one answer, let alone one right. Answer to those questions. And there isn’t the second thing though, is that when we focus on just what we’re supposed to say or what you’re supposed to do, that bumps right up against all the limitations that are put on you through your work, on all of the things that you cannot say and cannot do. So I’m proposing that we shift the focus from what you do, focus on what you can do and what you’re really good at. And that’s information gathering and information gathering starts with a different question that starts with the question. What more do I need to understand?
What more do I need to understand about this person, this concern, this question, this situation, what more information can I gather to share with the team about what this person’s grief is about, about why this person is so angry about what the experience of dying is like for them? What’s important here? Is that asking the question? What more do I need to understand first is about getting into the habit of gathering crucial information before you try to come up with what you’re supposed to say or what you’re supposed to do, ideas that are both appropriate and within your scope of practice. But this is also asking this question is also a way for you to access important information to share with your team. So before we get into talking about the strategy or approach to improve how we respond to difficult questions and engage in difficult conversations, though, I want us to spend just a couple of minutes thinking about how we define difficult conversations, because difficult conversations are typically around topics of death and dying loss and grief decline in someone’s condition, particularly if that’s sudden and pretty much any topic that has that generates a strong emotional reaction.
Particularly if that strong emotional reaction is unexpected or unpredictable, of course, what this means is that conversations as we’re defining them, difficult conversations, as we’re defining them happen routinely in your line of work. So the very first step in making difficult conversations and difficult questions easier is that we stop defining them as abnormal as somebody else’s job, as things to be avoided at all costs. It’s about understanding that we actually create and perpetuate a negative attitude toward these very routine conversations simply by calling them difficult. So I’m suggesting that instead of calling them difficult, we see them as challenging, but normal parts of our work that we in fact learn to approach differently and therefore more efficiently and more productively. So the strategy that we’re going to look at that I think can help us begin to see things differently is described in four words, validate, explore, respond, and share if you’re into acronyms that’s verse V E R S.
So let’s look at what it, what happens when you turn these four words into actions. So validating validating is about taking the time to acknowledge a person’s right, to ask a question, to share a concern, even to have a strong, emotional reaction. When we pause before jumping in with an answer or an action and validate the importance of a question, validate the legitimacy of the feelings of the person, asking the question, maybe even validate the gravity of the situation or how hard it is sometimes to just put things into words we’re saying, I see you, I hear you let’s start there. And in doing so, we’re taking the first step in providing a healing response. A response that in and of itself can begin to diffuse a difficult conversation or a difficult situation. Rachel Remen and American oncologist therapist and author describes healing as being different from curing. She says healing is something that happens when someone feels they have been seen and heard and validated. And I think we’d probably all agree that while curing happens quite frequently in our healthcare system, healing happens far less often. So we validate because that’s healing and we validate by saying things like this sounds important to you. That’s a good question. That’s a question that a lot of people ask, I can hear the pain in your voice. I can see you’re pretty upset by this. It sounds like that was hard for you.
And you can do this. The great thing is that all of these phrases, all of these questions fall within your scope of practice. They are on the list of things that you can say and do. So after you’ve validated, you move on to exploring, and this is about seeking to understand what is really happening. What is question really about what is happening in this difficult conversation? What is happening in this particular situation before we react with an answer or an action? So we explore when we say things like, I want to understand what this is really like for you. Can you tell me more about that? Have you ever watched someone die before? What did you take away from that experience? Can you tell me a little bit more about how you came to that decision? What do you think will happen if you, what do you think these changes in can this person’s condition mean?
When you’re asking these questions, you are looking behind the question that someone’s asking to get background. You’re asking to know more about the situation before you react. You’re exploring the underlying causes of the concern. And then after you’ve explored, you’re ready to respond. Now, this is important because the response is different from an answer. And answer is a statement. Statements can be true or false statements can be right or wrong, but a response does not need to be a statement. A response can be another question allowing you to further explore. So you might say to someone, something like after everything you’ve told me, what do you think, how is that for you? What would you like to see happen? Or you might say something like, do you have a sense of what’s happening now? What do you want us to know about your loved one to provide the very best care possible?
So our response can be a question. A response can also be more validation. You might say something like, okay, that’s good for me to know. Now I have a much better idea of what this has been like for you. Or you might say something like, thank you for clarifying that question for me, that’s really helpful. The point here is that when we don’t limit our reaction to a challenging conversation or to a challenging question with either an answer or an action, when we don’t limit ourselves to just asking, what should I say, or what should I do? We can open up a whole range of possible responses and promote a much greater degree of understanding and clarity and therefore effectiveness all within the scope of practice. So ALS just,
Just want to say that you’re coming across clearly and what great calm content. I think the thing that I love so much is realizing that responding doesn’t mean we need to give an answer. It doesn’t mean a statement. It can be a question. And I think that is perhaps one of the most powerful things that we can walk away with. Thank you.
You, thanks. Yeah, that is, um, I, I’m so glad that you highlighted that because it allows us to move beyond that terrible feeling. Like I should have an answer to this, or I not supposed to answer this, or nobody’s told me how to answer this question or to answer this concern. So that idea of a response being a question or being more validation, just as I say, opens up so many more possibilities for how we can respond and maintain and keep a conversation going. So after validating and exploring and responding, you’re ready to share with your team with permission, of course, but share information that is accurate and detailed, that not only can make their jobs easier, but can reduce the number of times that misunderstandings and assumptions influence how care is provided. And in doing all of this, you are maximizing your value on the team.
So let’s just look at a couple of scenarios. Let’s imagine, for example, that the team is very frustrated because Mr. C is refusing to take his pain medications as prescribed, but what if you’re able to come along and say, yeah. Um, but you know, I was able to find out that the reason Mr C won’t take his medications like he supposed to is that they make him sleepy. And he’s terrified that if he goes to sleep, he’ll die because he thinks that’s what happened to his wife. Oh, interesting. Or let’s imagine that the team is really struggling with how to get Mrs. S to stop feeding her husband, even though when she feeds him, he vomits and chokes. But what if you’re able to say, yeah, but you know, I was talking to Mrs. S and she told me that the reason she’s feeding her husband is because her friends told her that if she doesn’t feed him, she’ll allow him to starve. And she told me, she told me that that’s just morally unacceptable to her. Wow. Or instead of just agreeing with the team that Mr. T is a really difficult, angry client, what if you’re able to say, you know, I know that Mr. T can be hard to deal with, but he shared with me that, um, he’s really of not being the decision maker, the head of the family. And he hates having to be cared for like, he’s a child.
All of these pieces of information are crucial. This is crucial information that actually can make a difference in how care is provided. And you are the ones that can provide that information. So let’s look at a couple of real life examples, you know, where the rubber meets the road on your job. And then we will, uh, leave some time for questions. And maybe for you to throw in a few more examples of your own. So imagine someone asking what is my dying going to look like? What is my loved ones dying, going to look like? Now that’s a challenging question. And have you noticed that we’ve moved from calling these difficult questions? We’re now calling them challenging questions that are normal parts of the work. So without a strategy, it would probably be easiest to respond to a question like that by saying something like I have no idea, I guess it would be different for everybody, but you know, really, I’m not supposed to answer questions like that.
Now the thing is that sometimes without intending to, if we dismiss, or if we minimize a question that someone’s asking, and again, without it being our intention, the person asking the question may feel dismissed or minimized. And we may even minimize ourselves in the process. However, by using verse our strategy, you can respond in a way that not only allows the person asking the question to feel like they’ve been seen and heard and validated, but also allows you to use your skills and information, gathering, to share important information with the team. So your conversation then might look something like this. And I really encourage you to think of this strategy as empowering a conversation. You don’t, it’s not about thinking about it in terms of chunks. First I do this, then I do that. It’s about creating a conversation that has a natural flow. So this conversation might look something like this.
You might start by saying, well, you know, it’s not uncommon for people to want to have some idea of what to expect. So that’s a question that’s often asked. Can I just, um, ask you, is there something specific that you are concerned or curious about? I’m just wondering if there’s something that’s causing you to ask this particular question. Now, if perhaps something has changed or happened that might be helpful for the team to know about. Okay, thanks. You know, the information that you have shared with me helps me have a better understanding of your specific concerns. I’d like to share what you have told me with the nurse, because they may be able to help you, uh, have a better understanding of what to expect. Would that be okay? So then you’re going to go and you’re going to share information with the team. So you’re going to let the team know what this question is about. Is it about paying, for example, is the person actually asking, uh, is the, is there going to be pain and is that pain going to be managed or is the question about how long it’s going to take this person to die? Is this a question about needing to know what the progression of the disease will look like? So the death is not unexpected.
The knowing what the question is really about is what allows the team member, whose job it is to actually come up with an answer to the question, to offer a more relevant response, rather than just making an assumption about what they think the person wants to know. And you’re the ones that can help with that process. So I want to go on and take a nap, share with you another example. But before I do that, I want to stop and just share with you a couple of important pieces of information. First of all, it’s really important that you use your own words, not my words that you use your own words. And in fact, the words that you use are less important than that. You follow the process of validating and exploring and responding. Before you share, before you try to come up with something to say or do, secondly, it’s important to understand that validation doesn’t have to happen with words. Rachel Remen also says that a loving silence can be, have far more power to heal and to connect than many well-intentioned words. So validation can be in the form of a, uh, non-verbal demonstration of compassion, like touch with permission, of course, or even silence, but silence in which your body language says, I get how big this is. And I’m still here with you. I’ll be here with you.
It can even be validating to say, I don’t know what to say. I’m really sorry that you’re having to go through this. Because even when you say those things, you’re saying, I’m listening, I’m present I’m here. I am not dismissing. And I am not minimizing your concern or your question validation does not require, as Kath said, it doesn’t require you to have the right answer because most of the time there isn’t one, right answer and validation doesn’t require you to take away the pain that is behind the question or behind the concern. So having said that, let’s look at another very, very challenging question that you may often come across in a palliative care setting. In my experience, given the difficulty of prognosticating in the context of long-term chronic illnesses, one of the questions that physicians and nurses dread the most is how much longer do I have to live, or how much longer does my loved one have to live nurses and physicians dread that question because they are afraid to get the answer wrong.
And PSW is dread that question because it’s not within their job description to answer that question. However, once again, if these questions are approached from the perspective of verse validate, explore, respond, and share, they can actually be opportunities again, to gather crucial information that can actually result in an, a more appropriate response being given to the person who’s asking that question. And again, please, it’s not about memorizing a script. I give you these examples simply as a way to get you started thinking about how you might respond using your own words to these questions. So what this, this conversation might look like is something like this. What’s an important question. And I think probably the nurse or the physician would be the best person to try and answer that question for you. But I’d like to check out a couple of things with you first, and then we can talk about who you might want me to share this information with.
Okay. Now let’s think what would you be wanting to check out? What are you going to explore? So what you’re going to explore is what this question is really about. So let’s stop for a moment and just think about some of the very numerous reasons someone might ask this question. So for example, a grandmother might ask the question because she says my grandchildren want to come and have one last visit with their grandfather while he can still engage in a conversation. Okay. Somebody else though might say, well, I need to know, because I’ve been sitting here at my husband’s bedside for three days in this facility. And I just need to know if I can go home for a couple of hours and catch a shower. Oh, okay. Somebody else might say, well, I need to know because my dad wants to have last rights before he dies.
And then again, someone might say, well, I’m asking because it feels like mom’s condition has plateaued. And we’ve got this two week family holiday planned. And I’m just wondering if we can be gone for that period of time. And then someone who’s dying might say, well, I’m asking because I feel like I’m getting weaker. And I don’t want my family to be surprised by my death. And then someone else might say, well, I’m asking because I’m tired of living like this. And I want to know what my options for dying. You can see that once you understand the background of the question, these are all very, very different questions that will need different approaches and different preparation to be able to be responded to appropriately. And that’s exactly why it is so important for the person trying to answer the question, to know what the actual question is because it’s very different. It’s a very different question to ask. Um, can I be gone for a couple of hours to get a shower? That’s a very different question. Then, can we be gone for two weeks on a family holiday? Which again is a very different question from, I need to know, because I want to know what my options are in this long-term chronic illness. And the thing is the information that we’re talking about is exactly the kind of information gathering that you as PSW are skilled at doing.
So once you’ve explored, then you’re ready to respond. But remember, responding can be another question. And so you might ask a question that is actually incredibly important, and that is so can you just tell me before I pass this information on, do you have any sense of timing yourself? I can’t even tell you how many times I shared information with a nurse or a doctor where they’ve said how much they appreciated this piece of information, which lets them know before they try to give an answer on a prognosis, whether the person is on the same page and won’t be at all surprised to hear what they have to say or if they are going to be completely shocked when they find out what the actual timing is. So that’s a good question to ask and then, because the response can be another question you might go on to dig a little deeper.
So you might ask the grandmother, um, can you tell me how important it is for the grandchildren to have this last visit and how long you think it would take to arrange that visit that’s important? Or you might say to the woman who, whose dad wants last rights. Well, um, how would it be for you if the priest came earlier as opposed to risk the priest coming later too late, or you might say to the family that wants to go on vacation, just tell me how would it be for you if your dad’s condition changed while you were away?
So a response can be a question, but you know, a response can also be further validation. So you might say this has been a very helpful conversation. Thank you for being willing to clarify these things for me, that I can pass onto the team with your permission. It will really help. Whoever gets back to you, respond to your specific concerns. And then you share information with the team information that you have gathered information that once again can literally determine and how an appropriate response is given and how care is provided. So let’s just look at one more quick example before we close. Imagine that someone says to you, I family just keeps arguing about what treatment I’m supposed to have, and it’s really stressing me out.
Can you fix that? You have an answer for that person. Probably not. So moving to the strategy, validate, explore, respond, and share. What might a conversation look like? Well, it might look like this. Hm. You know, in my experience, family members really struggle with having to make such big decisions, but it sounds like this is really hard for you. So can I just ask you a couple of questions, first of all, has this happened before when big decisions had to be made within your family? Was there anything that helped then did that somehow get resolved? And, and if it did get resolved, how did it get resolved? What would you like to see happen? What do you think might be helpful? You know, thanks for sharing that information with me. Would it be okay if I shared your concerns with the nurse, they might be able to address some of your family’s concerns and maybe even help them resolve their differences so that this isn’t so stressful for you.
What you can see, I hope through this is that the strategy we’re using can actually instigate a conversation, a conversation that has a natural slow, that doesn’t involve any answers, but involves the gathering of crucial information. So in conclusion, in conclusion, we’ve established that what we typically call difficult conversations and questions are in fact routine in your line of work, they may be challenging, but they don’t need to be feared and they don’t need to be avoided once you have a strategy for approaching them, that is well within your scope of practice, that maximizes your information, gathering skills, and that can help you provide valuable information to your team. So essentially there, I am just catching up with my, my PowerPoint essentially. Then our strategy of verse validating, exploring, and responding and sharing is essentially a way of working in wet. We see the gathering of information to be as important and valuable as the giving of information
Open it up to questions and comments.
So thank you so much, Elizabeth. Uh, we have a couple of comments and I’m going to start with town. Linda’s second comment. She says, be careful what answer you give now, if you’re going to give an answer, a family member was told when asked, is there time for me to drive my husband home? The answer was sure, take your husband home there’s time. And the client passed before the person returned 30 minutes later. So, um, there’s a, there’s a whole bunch of things that one could respond to there. And then there’s another, um, another couple of comments, but do you want to just take that one and respond to that particular set of issues?
I mean, I think that that illustrates so beautifully kind of the catch 22 of feeling like you need an answer. The person’s asking for an answer and giving an answer, which turns out to be wrong. Uh, I mean that, that is going to happen. The person who’s seeing the most deaf who understands the, uh, um, disease progression and is most skilled at prognosticating is going to sometimes get it wrong. But I think that, uh, to go back to the exploring, so, um, asking someone, what do you see, let’s look at what’s happened recently? So, uh, yes, it probably would be okay for you to take your husband home, but we can’t make a guarantee. So given that, that there isn’t a guarantee, what, what do you want to do? How would it be for you if your husband died before that happened? So again, if the, if we don’t feel like we have to immediately go to an answer, but can find a way of exploring and checking out it in all likelihood, the decision that we come up with at the end will be the best decision we can make in that situation, but it’s not perfect.
And you made a comment that, you know, the answer was wrong. The other possibility is that it was the right answer for that group. If you, again, we sometimes talk about the fact that when you look at that person’s life, the client’s life closer, that they tended to do more, perhaps the possibility that they tended to do things when they were alone versus wanting everybody with them. So that’s the other piece to think about there. And there’s more about that in the chapter on last days and hours and essentials and, um, or, um, the, uh, the PSW or PSW texts. There’s more about that particular issue. Um, and, and I think one of the things, when you talked earlier about finding out what they think, I can remember a mum that wanted me to help her say goodbye and give some advice to her daughter.
So we sat down and I took notes and the daughter asked the mom some questions, and the mum gave some ideas of what she wanted to say to this kid, to, to her teenage daughter. And then we went out and I said to this daughter, how long do you think your mom has? And she says, well, I used to think she had a while, but now I don’t think she has very long. I’m thinking maybe six months. And I’m thinking maybe six hours, maybe six days at the most. And that piece of information was wonderful to be able to then say, Ooh, I’m not sure that it will be that long. And then to be able to pass that onto the team who was going to be working with her over the next hour. So what a wonderful piece of information I’d love that question. Now, somebody has responded that Tom Linda has said, um, was the question, how long do they or I have, um, and what is it you’re really wanting to know it wasn’t clear as a guiding next question. What exactly to say. So can you just run through that one again?
So the question was, how much longer does my loved one have to live or do I have to live? Uh, and we talked about the, the validating, and then the question which you just referred to Kath as well. Is, do you have a sense of how long you have to live or do you have a sense of how much longer your loved one has to live? Um, so after you’ve, you’re asked you’re first asking, do the, do they, are they asking about a specific concern? So, you know, for example, someone might say, I’m asking this because, um, my husband’s breathing has changed and he seems to be sleeping a lot more lately. So now I’m asking how much longer does he have to live? So you might, so you, you get at that by saying, is, do you have a specific concern? Has something changed or happened recently?
But then that question, do you have a sense of timing yourself? Um, now I’m as I’m a social worker, I, it was not my job to prognosticate. It was not my job to give prognoses to people, but I found that asking that question, do you have a sense in my experience, most of the time people did have a sense themselves. It may have been completely out of whack in terms of what the actual prognosis was, but as cath demonstrated, knowing that piece of information then allows you or the person, the nurse, or the physician who actually is going to try to come up with a prognosis to know where they’re going with that and who and the, where the person is and how they’re going to respond. So you would respond very differently to someone who is right on the same page with you and someone like the cat, the example, cath, Gabe, who thought it was six months when it was six hours, like you’d approach that differently.
So Elizabeth nichey has said, I feel that validating is the most important step often in the moment. It might be easier to skip and just go to the next steps. Okay.
Thank you. Thank you. Yes. Yes. And it can feel like, you know, validating, isn’t like taking you anywhere towards getting a resolution to this question or this concern, but it’s the piece that is so often missing in the way that we practice healthcare, that piece that says, let’s just pause for a, and let me say, I hear you, let me say, I see, let me tell you, that’s a good question. It’s okay to ask that question. Okay. It’s a question that many people ask or many people have a concern about that it normalizes for people. And I don’t think we understand often how hard it is for people to ask questions, because we don’t leave a lot of space for people to ask questions. We’re so busy telling them what they need to know and what they need to do and what their dose is and what the next treatment is. And so when people ask a question, it’s important to express a concern to say, I hear you. Okay.
Yeah. Wonderful. Um, Elizabeth, there’s an absolutely beautiful comment here from Ruma. I am so glad I could participate today and hope to continue. Thanks a million times to all that led me to who I am today.
Beautiful. And Cheryl, thanks for a great presentation with valuable practical advice. And then Jackie has said, I encourage families to have peace with how, and when the death occurs, we can do our best at watching the signs that death appears eminent. But there is an element that we just don’t know. Sometimes we call the family in and say to the resident that the family are on their way. And some residents wait and others seem to die greatly. There’s an element beyond our comprehension to understand
Well, being able to say that, that this we’re giving you our best, uh, guests, but there is, uh, there is the mystery and there’s part of this. We can’t say for sure, we do our best. And again, that allows families to feel like they’re doing their best to that. None of us need to be perfect. None of us get it right all the time.
So there’s a comment about what is the approach when they are way off. And I think that’s a really good question. And there’s a really nice way of being able to say, wow, let’s talk about that with the team. And then being able to, to talk about that, or thank you for letting me know, let’s talk about that with the team. And then one of the things that I love to do as a nurse, and that is say, tell me, what was your dad like a year ago, six months ago, four months ago, two months ago, six weeks, four weeks, two weeks, one week, four days. And then often as people go, they just are, they’re just painting the picture for themselves. Oh, that’s a helpful piece. Yeah,
Really good piece. Um,
No, I just want to finish with a couple of last comments and then we’ll have to close. Um, uh, these mini courses are so fantastic. It refreshes my memory as to the appropriate pro approach towards patients and their family validation and honesty are so important and necessary. And Lisa has said, well, well said, and Diane Brummer, who is, uh, um, HCA instructor in Penticton, she says, it’s okay not to have the ability to answer a question. PSW is really do not need to know. They really do need to know their boundaries. And it’s okay to say that is a great question. Um, and I’m not sure of the answer, but if you don’t mind, I would like to share this with my supervisor who will be able to give you the answer or we’ll be able to respond, um, and tell him I, that has said yes.
Um, uh, this is an awesome, this is awesome. Mini courses, hugs. Thank you. And then Diane on loving the growth of information. Thank you so much. And mercy, I have family asked me how long my mom had. I did answer. What did you see about her situation? What do you see what her situation right now? And then he said, I see her breathing change and not waking up. So I said, everyone is different, but I see her breathing is shallow and I gave all the signs, but I cannot really say the timing for her. She has a slow decline or a fast decline. Um, and thank you, Julia. Just a nice comment. Um, thanks for providing these learning opportunities. Um, um, and I think this is the one we need to finish with Pauline says there was a niece who could not wait for her aunt to die. So whether that she was, she was anxious or she just couldn’t because she was leaving town or she had to do the work now. So she gave away all of her out’s belongings and they had revived had lived a few more years.
And that is the reality of some of the, the challenges though we live with and work with. Okay. So I just want to finish up with just a few notes, first of all, thank you for those. Thank you, Elizabeth, for that wonderful, wonderful presentation. Thanks, fabulous. The opportunity to be here. Um, you know, I think everybody should have a counselor in their back pocket and when we don’t have access to that in our back pocket, and many of us don’t, then it’s great to sign up for these kinds of experiences. So next month we’re talking about some of the myths about a palliative approach and some of the things we know and how to integrate it. Um, and then the next month we’re having an excellent presentation on tips for the holidays. And we have a woman who has specialized in kids and oncology and, um, also in loss and grief.
So she will talk and intro a little bit of a loss and grief stuff out of the PSW textbook, but she will also then share some ideas, um, from her practice. And then we also are starting in on planning the, um, um, presentations for, for next year. So if you’ve got some questions, let us know. So I think that Michelle is I’m going to let Elizabeth stop sharing her screen. And Ms. Liz and Michelle is going to start sharing her screen, and we hope that’s going to go just as smooth as soft butter or margarine. So we’ll see things miracles do happen. So, um, again, this is joint education with Canadian hospice palliative care association and with, um, CA uh, HPCO, um, wonderful to work together and to have just such a, uh, commitment to, to specifically developing something for you, addressing your needs, et cetera.
Now I’ll just review a few things. The program that is Dilip develop specifically for you, there’s 10 courses. They will be in French and in English they’re competency-based and aimed at helping you meet the provincial and national palliative care competencies. The registration to pay for them is coming soon. The first five courses will be available when registration opens and the remaining five courses, one will open about every couple months. Them all will be available by spring 2022. And each course is one and a half to two hours long. Again, it’s independent. You can do it day or night. If you’re one of those people who loves to be up at four in the morning with your cat crawling over your neck and computer, you could do that, um, completion of all 10 courses and you receive a national certificate and, um, from CHPC O a H P C O and LDM, and for more information, you can go to pace for psw.ca.
And if you go back to the, um, top, the first slide, I think, so this is the logo that goes with it. And you’ll see some information coming out from both O C H PCA and LDM announcing some of this. Now, Richard is going to draw the name of what one person who is still here, and you will receive an email letting you know that you have received free admission to one course. Um, now before, um, leaving the meeting, please provide feedback on the quick survey. So some of the things that would be very helpful, we are doing this to try and support you and meet your needs. So having a one-way conversation is kind of one of my definitions of how so, um, if you could give us some feedback on what was helpful, um, that would be great. Um, the recording of this session will be posted on life and death matters website, and you’ll receive a link to the recording in the coming days.
So if you have colleagues who would like to see listen, then you can give them that link. If you want to connect with colleagues from across the country, um, we have the life and death matters, Facebook community, and you’re welcome to, um, join that community. Um, stay tuned for more information about pace for PSW. And if you want to contact us directly, you can go to life and death matters.ca and to contact us. And I think I just need to read you one other, um, comment that I saw come in from Jennifer. She said, thanks for the presentation. It is great information. I am a psychiatric nurse, and sometimes do not know what to say and do in my counseling sessions, which was, so this was very helpful as I deal with difficult questions and conversations and why I think it’s so important to finish with that comment is we are all in the same boat.
This is incredible work. We do. It’s beautiful work. It’s difficult work. It’s touching work. It’s hard work. It is, it is some of the finest stuff we’ll ever do in our lives. And it’s some, there are some of those moments where you’re just going, what do I do? And how do I support this person in these difficult times? And, um, one of the pieces that we’ve got in chorus is about the fix it trap. And the fact that there’s some things we can fix when somebody is constipated, it is our job, man. We are good at this. We know how to do this. We do this and we do this well, and we can fix this. Often we can fix this problem of constipation, but when someone is sorrowing, that’s not something we can fix, we can support, but we can’t fix. And, uh, and then how do we respond to questions? Those are another thing we can, we can, uh, provide answers that are going to answer all those questions, those big questions. So thank you so much. Sarah finer has said, um, I’m a hospice volunteer and value these classes so much. Well done.