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.
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
The comments section is closed.
Ontario Auditor General
December 9 2014:
“Ontario has no integrated and co-ordinated system to deliver palliative-care services to Ontarians to meet growing needs as the province’s population ages…The Ministry does not have adequate information on patients needs in various areas of the province or what services are available for them to be able to provide the right care at the right time in the right place…the total amount the Ministry provides for palliative-care services is not known because it does not track costs specifically enough to isolate the amount spent on palliative care.”
Other significant findings:
• Although most people would prefer to die at home, most die in hospital. Aside from the compassionate
aspect of this, caring for terminally ill patients in an acute-care hospital is estimated to cost
over 40% more than providing care in a hospital-based palliative-care unit. This is more than double
the cost of providing care in a hospice bed and over 10 times more than providing at-home care.
• Many people are not aware of palliative-care services or how to access them.
• Access to palliative-care services is not equitable across the province. Patients who qualify for services
in one area of the province may not have access to similar services in another area.
• There is little province-wide information on the supply of or demand for palliative care. For
example, the Ministry does not have accurate information on the number of palliative-care beds in
hospitals.
• Overall, hospices in the province have a 20% vacancy rate and so could be serving more patients
than they are. Meanwhile, the Ministry funds vacant beds in hospices.
http://www.auditor.on.ca/en/news_en/14_newsreleases/2014news_3.08.pdf
Also see:
Top users consume half of health budget
CMAJ May 16, 2014
“The top 1% of health-care users, some 132 200 people in Ontario, consume 25% of the province’s $46-billion health budget, or an average of $53 000 per patient, Rosella noted. Hospital services expenditures account for 54% of this. Nearly a quarter of high-cost users are over 80 years old…”
http://www.cmaj.ca/content/early/2014/05/20/cmaj.109-4809
As a layperson with a background in identifying gaps in patient-facing education, end of life has become my focus.
To this end, I feel honored to be invited to sit on various councils, advisory boards and steering committees – each populated by healthcare professionals, most of whom care for complex continuing care patients – the very patients Dr Laupacis refers to.
Often these healthcare professionals come to know their population – their patients and families – well over the years of care. My consistent findings, with these good people, in end of life matters, is that across the board there is confusion, conflict, tension, anxiety, misconceptions, personal baggage, guilt and fear about that term ‘Palliative. ‘
It was both enlightening and disheartening as the need for support for these front line healthcare providers was confirmed again and again. This need seems falling through the cracks as the increasingly important and relevant Palliative and end of life movement continues to gain momentum.
What’s a patient/family to do when a health care professional responds to their directive NOT to have a feeding tube (NG or PEG) saying: “I can’t agree to that: I know what that will lead to.” (yes :I’ve heard sentiments such as these over and over amongst doctors, nurses, respirologists, physiatrists, social workers, phychologists, speech/language specialists).
There is much work to be done – top down and bottom up. But let us not forget that crucial middle space where those that day-to-day care for us live.
Kathy Kastner
http://www.bestendings.com
As a doctor who has provided palliative care in a family practice setting and a consulting capacity I enjoyed reading your article. I agree with many of your observations and wish to make a few of my own.
1. Patients can not choose where they die in Ontario. The place of death is determined by the family resolve and capacity, the finances of the family or patient as you describe, the availability of our limited resources in palliative care units/hospice and CCAC resources in the community. CCAC has many limitations not the least of which is funding, ability to be quickly responsive and the lack of clinical nurses in case management.
2. Dying has become a specialty. Death like birth does not require the medicalization that we are providing to most patients. Many times the service I provide as a consultant is that of a comprehensive family doctor and quite simple.
3. We have a gap in family medicine of doctors providing house calls. At one time house calls were a norm provided by all family doctors and now it is rare to find doctors willing to do them. It is complicated but we must look at the system and decide as family doctors what constitutes continuous and comprehensive care. We must also be providing 24/7 care for patients that are cared for at home. This might shape to be supervision and support of the primary care nursing teams in the community.
4. We need to be better at the recognition of impending death in patients without cancer. Clear hospice criteria need to be taught to all physicians and providers. There is little understanding and experience in the trajectories preceding death within our own medical community.
Lastly, I believe that family doctors need to lead the conversations with our patients and other care providers to facilitate house and community care to palliative patients. We need to advocate to the politicians for the policy, resources and education to support end of life care.
I had the privilege of caring for my mother at her end of life. She died of ovarian cancer, far too young some 33 years ago. Despite the discomfort of chemotherapy and pain when she could no longer tolerate treatment, she knew she was cared for, loved and had us present. She never asked to be relieved of this, as in, ” help me die ” – rather she prayed for strength to endure this pain and we advocated, did all we could to ensure her comfort.
For the last 15 years I had the privilege of caring for my father, first in my home, then a retirement residence, then a Long Term Care home. The political spin is in no way aligned with political will/action both in action plans for end of life care or, for home services. Though the government has known for years of the growing senior population, after 15 years in caring for my father, I can say, without hesitation, the system is still woefully inadequate. We ARE in crisis, with no end in sight. No wonder people are asking to be helped to die, for us, to murder them, in order to relieve them of their suffering. The health care system perpetuates pain & suffering, calls on committees and commissions studies – why? Because there is no political will to act. From April to July of this year, I again had the privilege of providing palliative care to my dad, and advocating for him, as his Long Term Care home is woefully understaffed, as they all are. The staff to resident ratio of 1 to 13 and mostly, heavy care residents, is a crime against humanity. If family/friends are not there for their loved ones, well, we know what happens….. My dad did not request help to die.
Yes, he had discomfort as his body slowly failed, deteriorated. Yes, it was profoundly emotional, painful. I along with family, friends were able to set up a vigil where he was rarely alone. He knew we cared, were there for him, advocated for his comfort and kept him company until he drew his last breathe at age 97. Cause of death…”failure to thrive”
… we know we won’t live forever, we all will die…so should we request help to do that now? Or, should we plan with, encourage, trust, make it easier for family/friends to be caring, compassionate enough to be with us on this end of life journey. With today’s medical advances, technology, we DO have the capability to ensure good pain management and comfort. BUT, WE, as advocates, carers, must push, pull, educate, request and never tolerate health providers we encounter, who are ignorant of and/or have no will to search, or, cannot be bothered to find the “right pain/comfort management” ingredients that our chronically sick and/or palliative patients deserve. We must not accept “there is nothing more that can be done for our sick, dying fellow human beings.
WE CAN and DO have pain/comfort managements ingredients. We don’t have to kill people, we have to care about learning more, seeking out more information, seeking out the right people who can help us and we must advocate MORE. A last thought…why do we Canadians allow politicians to develop, determine, plan delivery of heath care services, when they have clearly demonstrated incompetence both in the health care services and the financial management of our tax dollars that fund them? We, our families/friends are entitled to more.