A while ago I finished two weeks working on the palliative care service at St. Michael’s Hospital. As usual it was a moving, stressful, rewarding, frustrating, exhilarating, humbling, human experience.
Working clinically provides me with a reality check for the other parts of my professional life which focus mostly on health services research and health care policy.
Rightly or wrongly, as I think about my clinical work I tend to focus more on the things that didn’t go well than the many things that did. Here are some reflections about our health care system inspired by the patients I cared for during those two weeks. Some details have been changed to ensure anonymity.
We make it too hard for patients to die near their families. I cared for an elderly woman with severe heart disease who lived in one of the cities surrounding Toronto. She was transferred to St. Michael’s because it was hoped she might be eligible for a surgical procedure. Unfortunately, she was not and she decided that she didn’t want any more IVs or blood work, and wanted to be as comfortable as possible at the end of her life. We transferred her to our palliative care unit and were able to improve her shortness of breath with good nursing care and medications. Her main wish was to be transferred to a palliative care unit near her home and her two children. Our attempts at arranging this were unsuccessful– basically all palliative care beds near where her kids lived were full, and it seemed very unlikely she’d get a bed in a hospice near her family and friends before she died.
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It’s pretty clear that our health care system is not meeting this woman’s needs. Her children had to travel many hours a day to see their mom, and she spent more hours alone than she would have, had she been in a palliative care unit or hospice near home.
Small things matter. One of my patients with lung disease improved to the point where she was going home the following week with a palliative care team caring for her there. It goes without saying that it would not be a good thing if she got influenza, so we gave her the flu vaccine. Her husband should have received the vaccine as well. However, even though he visited his wife every day in hospital, we were not able to give him the flu vaccine because he was not one of our patients. I understand that from a legal/administrative point of view, but from the point of view of my patient and her husband this must seem silly. “Patient-centred” is on the lips of all health policy makers and managers these days, and this sure doesn’t seem very patient-centred. (I have to admit I didn’t approach senior hospital administrators to advocate for her husband receiving the vaccine). In the big picture I realize this isn’t a big deal (her husband will make a special visit to his family doctor next week to get the vaccine) but…
Wealth matters more than it should. I cared for a patient who improved to the point where he could be managed at home, but only if someone stayed with him overnight and during half the daytime hours. The government-funded home care services said they didn’t have the resources to provide this service, and my patient couldn’t afford to pay for this himself. Therefore, he went home on weekends but stayed in the hospital during the week. If he was my dad, I could afford to pay for the support he needed and he would have been able to spend more time at home towards the end of his life. This discrepancy doesn’t seem right.
The Supreme Court is on people’s mind. Our health care team and four family members sat around the bed of a gentleman who very much wanted to die, and indeed wanted us to help him do so. I had forgotten that the Supreme Court was hearing arguments for and against physician assisted death at the exact same time until his daughter said “Dad, your doctors can’t do that. They’re talking about that in Ottawa today.” With the passage of Quebec’s bill on euthanasia and polls showing a considerable majority of Canadians in favour of physician assisted death, I think this will become a reality in Canada in the next few years. Even with good quality palliative care, some people will choose that option. I don’t know if I’d feel the same way as this patient if I was in his situation, but I certainly understand why he feels the way he does.
On the other hand, one of my patients initially expressed quite a strong wish to have her life ended, but three weeks later was going home, at least for a while, and seemed to be looking forward to it. If physician assisted death becomes a reality, stringent safeguards need to be put in place (as they have been elsewhere).
The changing face of palliative care. A little less than half of the patients I cared for during the last two weeks did not have cancer, which reflects a profound (and I think good) change in the way diseases like advanced heart failure, chronic lung disease and kidney disease are being managed – in the past, cancer patients represented the majority of patients seen by palliative care services. Just like cancer, many patients with these diseases live long and fulfilling lives. But just like cancer, their disease can progress to the point where further medical interventions have little to offer, and patients opt for a greater focus on symptom management and less focus on life-extending treatment. If this trend continues, and with our slowly ageing population many of whom have chronic diseases like heart failure, there will be even greater need for palliative care services than there is now.
I note that Premier Wynne has made “Strengthening Ontario’s end-of-life care” a priority for our health minister. I hope these reflections put a human face on the need for this focus.
Some details of these stories have been changed to ensure confidentiality
Andreas Laupacis is a palliative care doctor and the editor-in-chief of Healthy Debate. Healthy Debate provides accurate and accessible information about health care to the public, to practitioners, journalists, students, managers and policy makers. They alsoprovide a forum for accessible and thoughtful deliberation about Alberta, Ontario and Canada’s health care systems. Their strive to increase the frequency with which health system leaders use evidence and informed public input when making policy and management decisions. Find out more about Healthy Debate by clicking here.