As They Lay Dying
We should have been hiking the Fraser River with her crew of adopted dogs, drinking wine, trading girl talk. Instead I slept with a baby monitor, woke to the sounds of her retching and celebrated when she could keep down two ounces of Boost.
Kim and I had reconnected via Facebook the year before. We’d worked together as waitresses in a jazz bar in Toronto, but lost touch when I got married and she went west. In December she mentioned feeling abdominal pain. My antennae twitched.
By February she was receiving chemotherapy and radiation treatments to shrink a tumour. When I flew west to visit her in May, she was bedridden and nauseated – though her wisecracking personality was still in evidence – and I became part of her informal palliative care team.
It wasn’t the first time I’d been involved in someone’s end-of-life care and, given I’m middle-aged, it probably won’t be the last. But it was definitely the worst.
“Good death” is a phrase I keep hearing. It may mean dying more comfortably to some, but it also constitutes a form of quasi-consumer activism – and has become a byword of the right-to-die movement.
Kim’s death was anything but good. Although she kept up the jokes, she was in pain and too weak to even walk outside to sit in the sun. There simply were no good days. Maybe it’s too much to expect death can be good. Some practitioners, like Debbie Emmerson, director of Toronto’s acclaimed Kensington Hospice, think the term is contradictory. “Good and death are two opposites.”
However, she does believe there is a better way, and death can “at least be comfortable and free of trauma, physical suffering and unanticipated symptoms.” This better death, achievable through palliative care, is a more realistic goal within the current health care system, and our cultural understanding of what it means to spend your last days as well as possible.
Too often terminally ill patients desperate for a miracle seek last-minute curative treatments such as extensive chemotherapy and radiation – medical interventions that cause patients a “worse quality of life in their last week,” author Atul Gawande writes in Being Mortal, his book on the distancing of the public from the realities of end-of-life in our industrialized medicine age.
Palliative care is ancient, and it makes sense
For most of human history, and still in many parts of the world, the only form of end-of-life treatment was palliative care. From the Latin word pallium, meaning to cloak, palliative care is a form of medical treatment intended to cover the whole person –emphasizing rest, physical comfort and pain management for the body, but also nurturing the patient’s social, psychological and spiritual well-being.
Palliative care has begun to be readopted as part of clinical care for dying patients in the last few decades, at least in the West – partly because of the sound economic arguments for doing so. When polled 80 per cent of Canadians said when they die, they would prefer it to be at home.
Palliative care is most effective when started upon the diagnosis of a terminal illness such as cancer or heart disease, because diagnosis induces so much fear, says Dr. Gary Rodin, head of psychosocial oncology and palliative care at Toronto’s Princess Margaret Hospital.
“The first reaction to such a diagnosis is fear – fear of being a burden and around the profound questions of the meaning of life. It’s psychologically terrifying and there are a lot of questions. Who can I depend on? How do I tell my family?”
In 2012 Rodin and Dr. Sarah Hales developed CALM (Managing Cancer and Living Meaningfully), a therapy model implemented at Princess Margaret for training health care leaders from around the world. It’s meant for advanced cancer patients and their primary caregivers, and aimed primarily at “reducing and preventing psychological stress.”
Follow-up studies, including one conducted by Rodin, have found palliative care not only improves quality of life – when initiated early, it also extends life.
All palliative care also has great cost benefits when administered by doctors trained in palliative approaches to patients aware of their full options. According to Health Quality Ontario, the provincial advisor that reports to the public on health care, nearly two-thirds of people dying in 2014–2015 did so in hospital. The average Ontario acute care hospital stay costs $1,000 a day (in B.C. about $1,400). Hospice care, on the other hand, runs about $350 a day, even if start-up costs are high.
This is key given the anticipated increase in terminal illnesses as the population ages. The average life expectancy is now 77 to 82 years, compared to less than 50 in 1910. Accordingly, the Canadian Cancer Society anticipates a 40 per cent increase in cancer cases over the next 15 years.
Delivering palliative care is a whole other issue. At the moment the ten-bed Kensington Hospice is the only one in the Greater Toronto Area. A further 40 palliative beds are spread around the city’s hospitals.
Both the Dorothy Ley and Philip Aziz centres operated as hospices, but closed because of budget cuts. They have stayed open as centres of training and support for patients and caregivers in the home. Each offers a variety of assistance including in-home support with non-medical care (meals, shopping, taking to appointments), interim support prior to full palliative care, and day programs.
Downloading care to volunteers seems the only viable financial option. In some cases volunteers are trained in palliative care. Kensington, for example, has 160 trained volunteers who do it either as payback for relatives who stayed there, or to gain more experience in their health care profession.
But the informal volunteers like me – armies of friends and family – are not getting direction or proper information. Community care nurses who can assess both the patient’s needs, and the emotional capacity of families, would make a difference – but there aren’t enough of them.
There is also potential conflict with patients unwilling or unready to accept the help being offered, which relates to the immediate emotions many people experience following a terminal diagnosis.
Shan Mohammed, an RN working on a PhD about the lengths such patients go in seeking cures, sees many a patient whose cancer has spread everywhere, but still sign up for drug trials. This is not surprising, he says, considering the widespread rhetoric that cancer can be beaten in our lifetime.
Doctors, meanwhile, may inadvertently contribute to raising patients’ false hopes on a cure because they find it so difficult to break the news, especially about prognosis. Mohammed has interviewed doctors who said it “felt they were hitting the patient with a truck. Plus there’s no time to do it nicely – one oncologist sees 20 patients a day and has five minutes in which to tell them.” And they tend to overestimate the time left – by as much as 530 per cent, according to one study.
How can the heavy load be shared?
Laura Fairley, a palliative care nurse in Toronto, says palliative treatment places a heavy load on families, and that she routinely gets calls from people who, in her words, “Don’t know what to do about their friend not taking pain meds, or cancelling the home care nurse. This is very common and it’s about fear of addiction to pain meds, or not wanting an unknown quantity around when they’re in a vulnerable state.”
A patient with a large network of friends, or an extended community such as a church, has a better chance at making those smooth transitions. About 20 years ago churches started hiring parish nurses from within to provide medical, social and spiritual care to parishioners. The nurse either visits people’s homes or organizes teams of providers in the congregation.
Janice Buck, a Cobourg, Ont., registered nurse who directs parish nursing for the Christian and Missionary Alliance Church of Canada, recalls how one church gathered around a recently diagnosed woman with two young children and a devastated husband. Very quickly the parish nurse organized teams to handle cooking, cleaning, childcare and pastoral visiting, which allowed the family to regain some balance and normalcy.
Buck says people are remarkably easy to train. “What we miss as medical people is teaching families the simple things – turning over the patient, changing the bed, keeping the mouth clean, how to give needles.”
Sharing the load is a challenge, but so is being efficient with financial resources and expertise. One promising approach to these concerns can be seen in a 2015/6 joint U.K.-Canadian pilot project, co-led by University of Western Ontario prof Deborah Fitzsimmons.
She explains that the U.K.’s long history of quality hospice care is being challenged as its model of one senior nurse providing care to a limited number of patients in their own homes has become “unaffordable and unsustainable.” The idea of this pilot project is to streamline the process through technology – in this case the Canadian-developed EnComPaSS – which allows senior nurses to directly supervise junior nurses in the home, and provide both with immediate access to patient info.
Government money, programs and training
Canadian governments do recognize the need for greater home care services. The federal government has committed $6 billion over ten years for home care (mental health is included in this amount), and Ontario’s Ministry of Health and Long-Term Care intends to spend $75 million over three years for the same, in addition to folding community care access centres into the local health integration networks (LHINs) for better delivery.
Dr. Pippa Hawley, head of palliative care in Vancouver’s BC Cancer Agency, says provinces resisted being told how to spend the money the federal government gave them, and “so far nothing has made it into the hospice system in B.C.”
Doctors can now bill for home visits, although inconsistencies exist between regions. Nurse practitioners in Ontario are working in shared care models with primary care physicians. Toronto has the exemplary specialized program PEACH: Palliative Education and Care for the Homeless. Over in P.E.I. and Nova Scotia, a 2015 program has paramedics specially trained to give palliative care support in the home when necessary.
And the federal government did recently increase benefits from eight to 26 weeks for family caregivers eligible to collect employment insurance.
These are good programs and steps in the right direction, says Hawley, but she believes regional disparities still have to be dealt with. She points to Australia’s national strategy that sets targets for certain outcomes. “Palliative care services are core requirements by Australia’s government. Everyone has access – even in remote communities all primary doctors have training in palliative care. And in places where it’s not financially viable to have specialists, they fly in doctors or use telehealth.”
Hawley and colleagues from the Canadian Society of Palliative Care Physicians submitted recommendations for the 2017 Health Accord, a meeting of feds, provinces and territories to negotiate long-term agreements on health care and its funding. She concluded that three things must be rolled out as soon as possible – public awareness on the benefits of palliative care, palliative care training for medical students as well as practising doctors, and the training of more palliative specialists.
Augmented physician training as well is long overdue, she finds. As of 2011 most Canadian medical schools offered less than ten hours of palliative training. Provincial ministries are now looking to increase that time, and the Royal College of Physicians and Surgeons of Canada has launched a two-year speciality that started in July 2017. In B.C. the ministry has instituted a practice support program that offers extra training and field resources. A recent practice support program is estimated to have reached 40 per cent of B.C.’s family doctors, Hawley says.
Humbling and inspiring
At 54 my friend Kim was young and did not want to die. The least that we, her friends and family, could do was keep her out of hospital and at home. I could speak from personal experience about the depths of sadness and the heights of grace – a weak hand squeezing thanks, a subtle witticism expressed quietly, admissions of fear in the darkness.
But Namarig Ahmed, a palliative care nurse working with Toronto’s homeless, says it much better. “I often prepare for an emotionally taxing day. Inevitably I end up coming away inspired by their level of hope. The work is in its own way deep and beautiful . . . humbling, inspiring. I’ve learned from them how to be more human both as a nurse and as a person.”
Alex Newman is a Faith Today senior writer based in Toronto