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.