“Singers sing, painters paint, and I am a hospice aide and I care.
I love it. It is what I do… It is what I have to do.”
Terry, a hospice aide
October is the month to celebrate personal support workers1 in several provinces in Canada. In the US, the contributions of hospice aides and certified nursing assistants are celebrated in November.
At Life and Death Matters, we join with health care teams and members of the public across North America to celebrate and give thanks to the incredible people who serve in these caregiving roles. I would like to take a few moments to talk about the many reasons to celebrate front-line health care workers.
I have interviewed hospice aides over the past month as I prepare for an NHPCO webinar series for hospice aides. Several interviews had to be postponed as the hospice aides evacuated people before Hurricane Irma hit Florida, or when wildfires spread in California. Another time the call needed to be rescheduled because the hospice aide was working in a remote area without cell phone reception. In the interviews I repeatedly heard stories of connections between the hospice aide and the person and family, stories of caring, stories about letters written by bereaved family members that expressed gratitude for the personalized support, and the ability of the hospice aide to adapt care to best meet the needs of the person and the family. These examples reinforce for me that front-line caregivers are pillars of support that the person, family, and health care team can depend upon.
I wrote a blog post about a study of the experiences of front-line caregivers in Ireland. I was delighted to hear stories that showcased similar experiences of hospice aides in the USA. Hospice aides, in their rather straightforward manner, shared a few stories and examples of how they work with the person and with the team. For example, I’ve heard repeatedly about a time when a hospice aide shared their concern about a person they were assigned to. How they formulated a report that shared their observations, the questions they asked, and then called the nurse supervisor. In each case, the nurse responded in a short period of time, and followed up on the hospice aide’s concerns by contacting the appropriate member of the team. In one case, the nurse called the physician to report pain and request an increase in pain medication. The nurse supervisor also visited the person when necessary.
In each story, the hospice aide initiated changes in care, and then adapted their care to best meet the needs of the person.
These stories and reports of events impressed me.
In the past weeks I have talked with several directors of care and nurse leaders at hospice organizations in California. In each hospice, the hospice aides were invited and contributed to interdisciplinary team meetings, and participated in education. For some hospices, the meetings occurred by teleconference, with members of smaller teams meeting at set times each week. For other hospices, the ENTIRE team gathered in one room, where deaths were reviewed, “what went well” was discussed, thank-you cards were read, cases were reviewed and care plans updated, and attendees were educated in the moment. I was impressed! The hospice aides participated alongside the physician, nurses, social workers, counselors, and therapists. These front-line caregivers are valued for their commitment, their caregiving, and are fully accepted members of the health care team.
Following this meeting I interviewed two hospice aides. In one interview, Terry, who previously worked with oil pipelines as well as other physically demanding jobs, shared with me about coming to hospice later in life. It is her quote that appears at the beginning of this posting,
“Singers sing, painters paint, and I am a hospice aide and I care. I love it.
It is what I do… It is what I have to do.”
To all those front-line health care workers, whatever your title, THANK YOU for caring. Thank you for the work you do. You are incredible! Your work is valuable.
- AKA personal support workers, health care workers, health care assistants, continuing care assistants, nursing assistants, nurse’s aides.
This piece was written by our friend and colleague, Andrea Leatherdale – RN, BScN, Practical Nursing Program Coordinator at Centennial College.
Depending on a long-term care agency’s policies, when a person with dementia enters the end-stage of life, management/administration may seek to transfer care to an alternate level of care (palliative care unit) away from the familiar long-term care setting. Families are often caught unaware of this practice and often desire their loved one to remain in the known setting until death.
Families benefit from familiarity with staff, continuity of care, the permanent room setting is set as the person’s “home”, often for years, and it is less disruptive at the time when impending loss/grief is occurring.
The Practical Nurse can advocate for families to be informed of the level of care process/policy/practices upon initial admission to the agency. This is more than advanced care directives. It is making sure the family knows the long term care policies and past practices on progression of care from admission to death. The family should know if transfers may occur to/from acute care but also within the long-term care facility if/when their loved ones condition changes.
A key question to the family should ask is “Can the dying person remain in place (“home” room) in the final weeks/days/hours of dying?”
A woman in her late 90’s had been LTC for at least 20 years. She had entered the facility walking and cognitively aware 20 years previous. As her dementia progressed over the years, she was transferred within the facility to the special care unit (secured unit) in the last 10 years of her life. She became familiar with that environment, could navigate room to dining room and back to “her apartment” which was filled with memories, trinkets and objects from her past.
Her family was highly involved and felt comfortable coming to the unit, knowing other residents there as well over the years. Suddenly she experienced a rapid decline which required an acute care transfer. Upon her return to the LTC facility, she was identified as requiring “palliative care”, and administration made plans to transfer her to an alternate unit in the facility. Administration of the agency said she no longer had “special care unit” status and would be transferred to the palliative care unit.
When the family was informed about the decision to move her, they were very surprised and upset. They expected her to be able to remain in the familiar setting until her death. The nursing staff of the special care unit went to the administration to advocate for the resident/family to remain on the unit. However, the administration said the resident no longer fit the criteria of the unit and must be relocated in order to make space for a new admission to special care. The nursing staff on the special care unit said that palliative care could be provided by their staff and they already knew about the resident and had a strong connection with the family to provide support. The special care staff argued that the staff on the other unit would not have time to achieve the same level of trust with the resident and family especially since it was clear that the resident had little time remaining.
The resident’s condition was significantly deteriorated and was apparent death was imminent within days. Administration still said the resident must be transferred off the unit. Nursing staff went to the attending physician, who agreed that the woman should remain in a familiar “home setting” and also went to administration to add that it would not benefit the resident to have a new doctor on a new unit to take over care at this point. Administration still said the resident would be transferred. In the midst of all this, the family was kept informed of nursing and physician advocacy. Unfortunately, the consistent message by administration kept adding more and more stress and worry to the family while they were coming to terms with their mother’s condition. Ultimately, the nursing staff advised the family to advocate for themselves directly to administration. The administrators were still saying no to the family until a member of the family identified themselves as a lawyer and commented that the situation was not fair or legal. Upon this discussion, the administration agreed and the woman remained on the unit for two more days until she passed peacefully with the family present and familiar staff.
Ultimately, the person and family’s needs were able to be met. However, this was not without significant worry and upset at a time when more support was needed. The other resident’s family members were also witness to this (as they were present for the family since they were all consoling each other). The other families could see the process of advocating that the nurses and physician were attempting. This precedent did result in changes to agency policies and allowing a dying person to remain on the special care unit is more common though not guaranteed. Nurses are continuing to advocate for change.
What are your thoughts on moving persons with dementia when death is imminent? Please leave your comments below.
In May 2015 I attended the Public Health and Palliative Care conference in Bristol, England. There were approximately 180 people who attended from around the globe.
There were many inspiring and innovative ideas for death education and death literacy, and many messages about compassionate communities providing care for the dying.
I found the following thoughts quite profound:
1. “Do not leave death to the experts.” – Allan Kellehear
2. “Remember that death is a social event with a medical component, not a medical event with a social component. The larger part of dying happens outside of the institution and professional care”. – Allan Kellehear
3. “End of Life Care does not begin with palliative care it begins with community. – Julian Abel
4. “Expand the team to include community as REAL partners, not just targets of care.” – Allan Kellehear
5. “Help people identify their “ring of confidence” including their friends, family and paid resources.”
6. “Put family cares/caregivers in the drivers seat, and find out what they want/need.” – Julia Verne
Improve death literacy
One of the key messages of the Public Health Palliative Care conference was to improve death literacy. Interesting choice of words. What might that mean?
According to dictionary.com literacy can be defined as:
- the quality or state of being literate, especially the ability to read and write.
- possession of education: to question someone’s literacy.
- a person’s knowledge of a particular subject or field: to acquire computer literacy; improving your financial literacy.
To be literate means to be able to read and write, having or showing knowledge of literature, writing, etc. and having knowledge or skill in a specified field. Death literacy, then, may mean to be able to read and write about death, having knowledge of literature and writing about death, and having knowledge or skills related to death. I would suggest that death literacy is not only about being able to read and write about death and know about death, but also to be able to communicate about death.
In an active sense, being able to read or write does not help anyone if they are not willing to do anything with it, so I suggest that death literacy is the willingness to learn and communicate about dying and death. This is definitely a good goal for all of us!
Around the world groups are coming together to help people talk, write, create and understand more about death.
One of the projects I learned about while in England is The GroundSwell Project out of Australia. Their mission is to “develop innovative arts and health programs that create cultural change about death and dying, while championing others to do the same.” They value “creativity and innovation from unexpected places; intergenerational learning and sharing that enriches lives; collaboration and partnership that grows everyone; health promotion and community development for profound change.” Kerrie Noonan and her team are creative, they work outside the box, they are artistic, and they manage to reach a group of people that is not currently reached by hospice palliative care. Have a look at their website or follow them on Facebook and Twitter if you want to see some innovative ways to involve community. They celebrate a “Dying to Know Day” each August. I am thinking that I will find a small project to do in my circle in Victoria BC while they expand their community in Australia. If you want to join them also, get creative.
In previous blogs I have mentioned the “Death Cafe” as a place to meet and explore topics about death. One example of events where people gather to talk about death is sponsored by Hospice Northwest (Ontario, Canada). They have a wonderful event titled “Die-alogues”. Kathy Kortes-Miller, one of Canada’s leading death educators, introduced us to “die-alogues”. She tells the story of thinking that maybe only family or friends would attend, and her surprise when dozens of people turned up! Kathy writes, “Our standing room only events demonstrate that our community wants to engage and be active participants in learning about dying and death and supporting one another. ”
Do not leave death to the experts.
I am intrigued by this statement especially as people without professional degrees comes forward to care for the dying and bereaved. What can we learn from a fresh, “un-academic” perspective? What is the role of those without formal degrees in caring for the dying? How can we learn to stand back and give space for emerging “death doulas” and “death midwives”, etc. to participate? What do we need to learn about this? Can we practice a bit of “professional humility” as we learn to work outside of the “inter professional team”?
Expand the team to include community as REAL partners, not just targets of care.
I was impressed by the Murray Hall Community Trust in Dudley, England. This group formed in the early 90’s to help communities struggling in the area. Their mandate includes health and social care. Funding supports them to address a variety of needs – from child care to palliative and end of life care.
They designed services by listening to local people, and heard what the people wanted. They worked with domicillary care, debt counselling, etc.. They listened to the stories of the people, and helped them to develop solutions . A few years ago they heard Professor Allan Kellehear speak about compassionate communities and they said “This is what we do!” A group of us who attended the conference were fortunate to tour their sites, and hear about their programs and learn from their experience.
“Remember that death is a social event with a medical component, not a medical event with a social component. The larger part of dying happens outside of the institution and professional care.” – Allen Kellehear
As a health care professional, I have thought – too often – that our team was a significant part of the dying person and family’s life.
In reality, most of the person’s living and dying does not include us, and should not include us. Hopefully when we are needed, we are there, and able to help, at pivotal times. During some periods of time, if we do our jobs really well, and if the disease progression is not complex and difficult, then we may not be part of their lives very long or very often.
“End of Life Care does not begin with palliative care it begins with community.” – Jules Verne
In her last weeks my mother kept repeating, ‘It takes a village to raise a child,… it takes a…. to care for the dying.” By the time she died she pulled her thoughts together, “It takes a village to raise a child and it takes a community to care for the dying”. How can we help community to provide care with confidence?
Dr Deb Braithwaite routinely says, “This is not rocket science”. We need to share with community that which we know, and we need to make it simple not complex. And for those times when life and death are complex, we need to provide support and access to services.
Put family cares/caregivers in the driver seat, and find out what they want/need.
Help people identify their “ring of confidence” including their friends, family and paid resources. Family caregivers provide a huge service to those they care for, and they provide a huge service to our country. The financial value of their services, the unpaid hours of caregiving are immeasurable. There is research looking at the needs of the family caregivers. We need to listen and learn and respond.
If you’re interested in seeing some of the concurrent sessions, plenaries and conversations from the conference, have a wander through the Public Health Palliative Care Conference Youtube channel.
Did you attend #PHPC2015? Or do you have thoughts about my highlights from the conference? Feel free to add your links and suggestions to those that are here!