We need more resources for palliative care patients at home

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  1. Sandy Buchman

    Andreas, you are right on the mark with your comments. You struggle with this issue from within the institution. As a palliative care physician providing home-based care as well as palliative care to the homeless and vulnerably housed, I too struggle with the lack of resources and the inequities to access to our limited resources for so many. It is so cost-effective, and perhaps even more important – compassionate – to provide adequate funding for home-based palliative care for both patients and caregivers. And there is a major gap in care in Ontario – and that is for patients like yours with longer-term prognoses (i.e > 3 months but < 1 year) who need the support of a palliative care unit or hospice residence for decent dignified care. As well, home (if it exists) may not be the best place to provide and receive care in many circumstances. Healthcare provider and caregiver stories like this in open forums such as Healthy Debate provide the foundation for advocacy in this area. Thank you for sharing your story and creating this forum to do just that.

  2. Colleen M. Flood

    And an interesting question is why private health insurance does not cover these things. Everyone keeps arguing that we need more private finance, for example, of doctor and hospital services — here we have a case of plenty of private finance and insufficient access. Do we need to mandate the purchase of a form of social health insurance — as they have in the Netherlands and Germany for example — to cover the cost of home care and long-term care for people who are nearing the end of their lives?

    • Andreas Laupacis

      Interesting comment, Colleen (as I would expect!). My private insurance plan covers all sorts of stuff (e.g massage) that is of dubious value but to my knowledge doesn’t cover home care. My premiums would obviously go up if it covered home care (almost certainly a lot).

      • Steven Lewis

        Hello Andreas and Colleen,

        The problem with the private insurance option is that it is only a solution for those with means. The fundamental issue is, what types of health care are socialized and which are not? Where are we collectively responsible for all or most of the costs of care and where do we leave it to out-of-pocket or private insurance options? Any service that is not universally accessible and affordable is by definition going to privilege some and leave others out. It is unfair to leave the choices Andreas had to make in the hands of individual providers on a case-by-case basis. The northern European countries have most figured this out. They do not make a fetish of distinguishing medical from social care, and subdividing the medical into “necessary” and, presumably, unnecessary, an obvious fiction.

        Private insurance for long term care is, if mandated and universally available, just a tax by another name, and if it is optional, it requires both money and an assessment of one’s own risk, which is of course hugely subject to distortion, manipulation, and incomplete information.

        People get old, decline, and often die slowly. The case for medical intervention weakens and the need for social care intensifies. A humane system in a prosperous country should (largely) fund what you need, not just the need that happens to be medical. Patients, family members, physicians and others are forced to come up with all sorts of sub-optimal workarounds because the system is quite literally unjust. The case for proper palliative support, effective community-based rehab services, and accessible mental health is just as strong as for pharmacare. Because pharmacare is medical and compatible with our techno-scientific culture, it is first in line. It would be great to do pharmacare. But the job doesn’t end there.

  3. Elizabeth Eisenhauer

    Hello Andreas

    Your comments resonated with me and reminded me of similar struggles with patients (and also ill family members). I had an interesting discussion about this with a colleague from Groningen (in Netherlands) where 70% patients die at home and I asked her what she thought major enabling factors were. She said they were a) funded availability of 24/7 nursing care for up to 3 MONTHS and b) patients registered with a primary care physician (virtually all patients in Netherlands ) had home visits and supervision of end of life care undertaken by their PCP as part of the accountability structure. And PCP responsible for finding a colleague to do so if they didn’t feel comfortable with providing this type of care. While I have not independently verified the accountabilities and funding of home nursing in Netherlands these two factors sound pretty Important to me!

  4. Kate Cooke

    Hi Andreas. As usual, right on the mark! And it’s not just spending public resources on external home care provision or respite for family/friend caregivers. Perhaps even more importantly it is teaching family/friend caregivers how to deliver care. The strain of providing care for loved ones is amplified by always wondering if you are “doing it right.” And the strain is also increased with the financial pressure of usually-not-publicly funded expenses necessary for patient safety and caregiver self-preservation — things like sensor mats, grab poles, accessible clothing, bed rails, etc.

  5. Heather

    My husband and I faced with this situation with his 92 year old Mom, decided the right thing to do and what she wanted to do, was spend final days at home. Mom lived not for 3 months but 3 years, she rallied and regained strength, never enough to ever use her arms or legs but in spirit. We took her to Florida to local parks, any and all experiences we could. We enjoyed 3 years with Mom we did not believe we would have. After 3 years of 24/7, two person transfer care, my husband and I, are burnt. We did receive some palliative care but never for the lifts and transfers because companies only send one worker to come in. We would have loved to have the energy for more focus on the psychological/companionship care. We surely never minded assisting Mom to eat or assisting her to the toilet or bathing her but I sure wish I had had time to write down those secret cookie recipes are the name of the great great aunt who loved her so much…but there just wasn’t time after the changing of attends, baths, toileting, bed changing, laundry, cooking, cleaning, lifting, transferring, medication, food prep then purée, doctors appointments, hair appointments, chiropodist appointments, dental appointments, all the things the paid staff couldn’t do because Mom was a two person transfer. But.. they did get to sit and listen to all the stories of years gone,,,,,if only they had thought to write those stories down 🙁 God Bless all who care for ill and dying loved ones. Our hearts go out to you.

  6. Joyce Cheung

    Thank you for addressing these issues we face on a daily basis. The lack of resources for these high needs ‘grey-area’ patients is heart breaking and demoralizing to physicians. My own practice includes the full spectrum of care and our team and the hospitalist team within our hospital struggle with finding new ‘ALC’ locations. The system has to change to provide these patients with adequate care.

  7. Andrea

    I have worked in both inpatient pall care wards and community pall care as a music therapist in Australia. My feelings resonate with what is in the article as well as what has been said in the comments. I feel fortunate to have the experience of visiting people in their homes and bringing joy and quality of life to the table. I often see families (including my own) go through the exhaustion of caring for someone for longer than anticipated periods. The system is not perfect and hardly equitable, but I think we try very hard in palliative care to hit so many marks because of the seriousness of ‘end of life’. The more we bring awareness to the situation and work on how to provide what people need in a variety of circumstances we start taking steps forward. The experience of the dying is never generalisable, and to try to improve the system it seems we turn to outcomes and evidence base which is somewhat flawed in providing the answers we need to improve the service for individuals. I feel we need to keep sharing our stories and cases that contribute to building on information. Thank you for your contribution, Andreas!

  8. Sarah Newbery

    Thanks so much Andreas for this. The issue of resourcing for home based palliative care is really crucial. It is a longstanding concern and I fear that not much tangible headway has been made in the past several years.

    From my perspective, there are two additional issues:
    1. in rural communities, like mine in Marathon, people often want to die at home because they want to have more privacy than is sometimes experienced in small hospitals in which the patient is often well known through non-health care circles to the staff. One of my patients, who died at the age of 49 a few years ago, wanted to die at home because he “didn’t want the girls I went to high school with” (the nurses) to see him so debilitated. It was a an issue of pride and dignity for him.

    2. Across the system we want family physicians to be providing palliative care for their patients in the community and supporting them to die at home. We know that we don’t have the community based specialty palliative resources to meet the needs of all patients who would choose to die at home. But navigating resources in the community can be difficult, and accessing necessary supports to enable both patient and family to feel cared for (as you noted in your article) can be impossible. To your point about professional burnout, it is very difficult from a professional standpoint to provide the intensity of care required in the community for patients at the end of life without appropriate supports and I believe that the inadequacy of resource, and the challenge of navigating the home care system in many places has led family physicians to leave this important part of their practice behind. This is really unfortunate for patients, for learners who have lost the opportunity to experience this part of comprehensive family medicine, and for our health system as a whole.

    So I come to this issue, not from a specialty hospice palliative care perspective, but a rural generalist family medicine perspective, and I agree completely. We need more resources for palliative patients at home.

  9. Shawn Tracy

    Thank you Dr. Laupacis for the timely and thought-provoking piece. Although it’s now almost cliché to say that “every system is perfectly designed to get the results it gets,” that’s what came to mind as I read this. The Ontario healthcare system — we persist in calling it a system despite its objective failure to fulfill the basic elements of a true system — is plagued by a number of well-known problems: overcrowded hospital wards, swamped emergency departments, multi-year-long wait-lists for long-term care, a chronically under-performing home care sector, and of course our infamously high rates of ALC. (And let us not forget the provider burnout and caregiver distress.) The term “hallway healthcare” recently entered the lexicon and quickly became the new common shorthand for this crisis. I recently came across another new term that likewise applies here: structural iatrogenesis. This is the causing of clinical harm to patients by the bureaucratic systems and processes within healthcare, including those intended to help patients. Our healthcare policies and practices are designed to improve the public’s health, but there can be harmful unintended consequences at the level of individual patients. Our current emphasis on standardization too often fails in the face of specific needs and unique circumstances. The widespread 3-month time restriction on admission to palliative care cited by Dr. Laupacis is but one example. We know that our current policies and processes — our rules and restrictions — are simply not working. They’re not working for patients, nor their family caregivers, nor the well-intentioned professional providers who, as was noted, end up feeling like “cold-hearted jerks” merely for following the rules. Our system is not producing quality care for patients, nor is it healthy for providers. To be sure, many more resources need to be dedicated to eldercare. Across all sectors. And there is desperate need for those sectors to become better integrated. But in the meantime, for the sake of all concerned, maybe we need to start bending some rules.

  10. Colleen Puniard

    I’m a 71 year old female with Idiopathic Pulmonary Fibrosis and COPD. While my outlook is relatively bleak I’m no where near end stage and I could have years left. The end could be pretty quick but who knows. I’d rather stay at home for as long as possible but living in regional Australia I doubt that much Palliative assistance will be available. The respiratory requirements will probably only be available in our local hospital which has no designated Palliative care beds. There is a Palliative Care Nurse but not sure what other resources are available. I certainly don’t want to take up an acute bed for long as I struggle to breathe and yes, I have an “end of life plan”. I noted with interest that there was no mention of a dying with dignity option in the original article or the comments. Over 80% of Australians support this but our politicians are dithering except in a couple of States where it has recently become legal under very strict criteria. Hope when my time comes it will be available to me. I wonder how the elderly lady in the article would feel about it.

  11. Philip Russel

    At the Toronto Commandery Hospice, now under development, our obvious service is residential hospice-palliative care, but we are integrating with Hazel Burns Hospice and our long term plan is to greatly increase the amount and nature of home hospice services. These services are available to people who can pay for it, but our healthcare system needs to make big improvements with changes that are actually relatively inexpensive. Government worries about billion dollar problems while overlooking the million dollar solutions represented by residential and home hospice can improve care and save millions of dollars.

  12. Liz

    I always found it bizarre that the government (Australia) will fund a hospital bed , put very sick people through “bouncing” in and out of ED at great cost financially to the system but more importantly , a very detrimental cost to the patient but fail to finance home care .
    And I would add to the list the awful situation of a patient having a hospice bed but then outliving their prognosis which then precipitates a move to a nursing home , often for a very short time .

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