Palliative care is an essential component of healthcare in Canada. Quality palliative care provides support to those with life-limiting illnesses and their families to carry out their wishes and minimize pain and suffering. There have been efforts to improve palliative care across the country, yet many Canadians still face challenges in accessing quality end-of-life care.
The Canadian Institute for Health Information report, Access to Palliative Care in Canada[i] found that only 15%, or 1 in 6 Canadians, who died in 2016-2017 (Ontario and Alberta) received publicly funded palliative home care, that access to palliative care varies widely across the country, and that most Canadians would prefer to die at home if they could get the support to do so.
My own experience with palliative care is both professional and personal. As a professional, I have worked on aging issues since 2009 focused mainly on safety and security for older people. Personally, throughout 2019-2020, my dad was diagnosed and receiving treatment for Leukemia. He was diagnosed late even though he had been seeing doctors for years about his health. It was his heart doctor that finally noticed the issues he was having were not related to his heart or his liver, which is what they had been mainly treating him for. When he was diagnosed with Leukemia, I don’t remember them giving a stage. I just remember knowing it wasn’t good and that the journey we were about to go on was going to be tough.
It was probably 2-3 chemotherapy treatments when my dad was referred to palliative care. A palliative care team - nurse and a doctor - were assigned to him and I remember feeling shocked and surprised, but grateful. Each time they met with him and my mom it was in their home. It was really one of the only services he received at home. Our experience with this team is why I feel one solution to improve the state of palliative care in Canada is through the promotion of home hospice care that can be done in conjunction with a palliative care team. What I am learning through my death doula training through the Home Hospice Association certificate program is that home hospice care provides patients with the opportunity to receive care in the comfort of their own home, surrounded by their loved ones.
Home hospice care can benefit Canadians in many ways. The COVID-19 pandemic has really shown the fragility of our healthcare and continuing care system especially for older adults. Home hospice care can help alleviate some of the burden on hospitals and long-term care facilities, which are often overcrowded and understaffed. When patients receive care at home, they are not exposed to the many dangers at hospitals for immunocompromised people and it frees up hospital resources for those who require more acute medical attention. A death doula can be an important part of this palliative care team by focusing on the patient, as a person first not a medical diagnosis, and advocating for their needs. Death doulas also do care work that is outside the scope of most healthcare professions. Death doulas focus on emotional support during the process at end of life, including grief and vigil work, and life legacy work to allow the patient to think about and express the meaning of their lives and what they want to be remembered for.
Home hospice care can provide patients with a sense of autonomy and control over their end-of-life experience. Many Canadians would prefer to die at home, surrounded by their loved ones, and home hospice care enables them to do so. Oftentimes those at the end of life and family can have a hard time coming to terms with death. Being at home and surrounded by their loved ones and belongings can help the person make a smoother transition. But it can also be hard for family and sitting vigil can be difficult. A Death doula can help with this process and provide information that will make it less scary and daunting.
In my dad’s case, he chose Medical Assistance in Dying (MAID). It was a process for him that allowed him to have autonomy and control, which anyone who knew my dad would say is completely consistent with his entire life. He was concerned about his dignity and ability to choose. He didn’t want to suffer, and he didn’t want us to suffer in caring for him. The last week of his life was filled with us being able to support him in connecting with friends and family to share what was happening and so he could tell them how much they meant to him. It was a time for us to laugh and cry and be together in what would be the final days of his life. His palliative team were excellent in making the process go smoothly and in talking to my dad and all of us about what his and our wishes were. For my mom, she couldn’t imagine his death happening at home and my dad wanted to respect her wishes. We were provided a room in the hospital to be with him right until the end, including the dog!
If we had more time, I think my mom may have made a different decision, but it moved quickly, and she really couldn’t have imagined it happening at home. Home hospice care and death at home can provide significant cost savings for the healthcare system in addition to the benefits to family and the person at the end of their life. According to the Canadian Institute of Health Information, the average cost of a hospital stay is $7619[ii], while the average percentage of people receiving home care is 85.4%.[iii] I feel lucky to live in a province that has higher than the national average of home care services and that my dad was able to access these for his palliative care.
As a death doula candidate in Canada, the promotion of home hospice care feels important for my future clients. And I think there are several steps that can be taken to help increase the number of people who are able to die at home with good quality care. First, increased funding for home hospice care services, including additional support for family caregivers (like the service of a death doula) would improve quality and understanding of the process at the end of life. Many family members call for medical intervention because of a lack of understanding of the normal processes of the body at the end of life. This results in patients being taken to hospital when care and pain management could be offered at home.
Second, healthcare providers need to receive education and training on palliative care to ensure that they are prepared to provide quality care to patients and families. Surprisingly, there is not significant training in this area during regular course work. Perhaps this is not so surprising, since our healthcare system is focused on illness care and extending life. The MAID legislation has opened a door for us to talk more openly about death and what good care at the end of life looks like. As a person who has worked on aging issues, I have seen this shift and recognize the importance of it in making lives better for all of us because no matter how hard we might try to avoid it…we are all going to die. Thinking and talking about how you would like that to look is an important part of this life journey we are all on.
Lastly, the World Health Assembly Resolution 67.19[iv] was unanimously passed on May 24, 2014. It focuses on the moral imperative of palliative care and the importance of integrating palliative care into all levels of health care. I would suggest that better integration between home hospice care services and the broader healthcare system would improve the lives of many. Patients and families provided with information about home hospice care options early in the care process, can make informed decisions about their end-of-life care earlier and make the process smoother. The support of a Death Doula coming earlier in the process can also help families adjust and make decisions that improve the end of life for their loved ones. Like in my mom’s case, I think with more time she may have decided that we could find a way for my dad to have his final moments of life at home.
While there are challenges to accessing quality palliative care in Canada, home hospice care can offer a promising solution for many. By promoting home hospice care, we can improve the lives of Canadians facing life-limiting illnesses and their families, while also reducing the burden on hospitals and long-term care facilities. With increased funding, education, and integration, we can ensure that Canadians have access to the best possible end-of-life care. I look forward to being part of this solution as I transition from a death doula candidate to a practicing death doula in the coming months.
References
[i] Canadian Institute for Health Information. Access to Palliative Care in Canada. Ottawa, ON: CIHI; 2018. https://www.cihi.ca/en/access-to-palliative-care-in-canada accessed on February 26, 2023 [ii] Canadian Institute for Health Information. Cost of a Standard Hospital Stay. Retrieved from https://yourhealthsystem.cihi.ca/hsp/inbrief;jsessionid=CIn-ZpMFhT8LawSO-FeDgUDk.yhs?lang=en#!/indicators/015/cost-of-a-standard-hospital-stay/;mapC1;mapLevel2;/ [iii] Canadian Institute for Health Information. Home Care Services Helped Recipients Stay at Home. Retrieved from https://yourhealthsystem.cihi.ca/hsp/inbrief;jsessionid=CIn-ZpMFhT8LawSO-FeDgUDk.yhs?lang=en#!/indicators/097/home-care-services-helped-the-recipient-stay-at-home/;mapC1;mapLevel2;/ [iv] World Health Organization. (2014, May 24) Resolution 67.19. Retrieved from https://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf
Anyone interested in becoming a death doula can register for HHA's Death Doula certificate program here. The next training weekend is September 22-24, 2023.
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Jocelyn Yerxa is an HHA death doula candidate.