Dr Justin Sanders
Canadians with serious illness are receiving substandard palliative care services, leaving them vulnerable to pain, delirium, psychological distress, and inadequate end-of-life care, Justin Sanders, MD, MSc, chair and director of Palliative Care for the Montreal University Health Centre in Quebec, told Medscape Medical News.
His comments came after a high-profile politician’s family complained publicly following the death of a relative at St. Mary’s Hospital in Montreal. “The eighth floor of St. Mary’s Hospital is a place where humanity and dignity have been forgotten,” said Michelle Bourassa, daughter of Andrée Simard, describing the hospital’s delayed delivery of adequate pain control, sedation, and transfer to the palliative care unit for her elderly mother. Simard’s husband was former Quebec premier Robert Bourassa, who oversaw the implementation of Quebec’s public healthcare system; he died in 1996.
It is “shameful” that the family’s experience is “a daily occurrence across the province,” wrote Sanders in a newspaper editorial last month. “What was being described…was not a failure of care at St. Mary’s, but rather a symptom of a broken system.” He called for “urgent reforms” to ensure better experiences for patients and caregivers.
Dr Ebru Kaya
Ebru Kaya, MD, president of the Canadian Society of Palliative Care Physicians, agreed. “It’s the whole of Canada,” said Kaya, who is also associate professor and program director for the Royal College residency training program in palliative medicine at the University of Toronto. “In Canada, if we look at rankings for palliative care globally, we do very, very poorly, compared to many other countries. There are middle-income, and even some low-income countries who do a better job of palliative care than we do,” she told Medscape.
Canada’s poor ranking comes from a recent survey of 81 countries, in which it placed 22nd for the quality of its physical and mental palliative care. Canada ranked below much less affluent countries such as Costa Rica (4th), North Macedonia (7th), Sri Lanka (16th), and Belarus (21st). (The United States was well down the list, placing 43rd.) Canadians less likely to receive palliative care are children and noncancer patients, said Kaya.
Beyond that, “it’s very patchy,” she added. “If you live in a rural area compared to an urban area, you’re less likely to have it. Also, if you’re vulnerably housed, homeless, incarcerated, or you belong to a community that traditionally has barriers and access challenges to healthcare in general, or if you have language barriers or health literacy issues. So, all that means, essentially, it’s a bit of a lottery.”
No Mandatory Training
Although a shortage of specialists trained in palliative care is part of the problem, there is also no regulatory framework to ensure the provision of palliative care services in Canada. “There are no quality indicators that health authorities have to abide by to ensure that we have even bare minimum palliative care for people who need it,” said Kaya.
There is also no mandatory training of nonpalliative care physicians, meaning many lack competence in delivering basic palliative care, said Sanders.
“There are generalist skills that most doctors are taught, to be able to diagnose or treat a range of conditions for which there exist specialists in that field, but we don’t have that in palliative care, because these skills are not well taught in medical school,” he told Medscape. The result is that many community- and even hospital-based physicians often fail to recognize which of their patients need palliative care and when.
“We’ll get phone calls to the Canadian Society of Palliative Care Physicians from patients or their families who say, ‘I’m suffering or my mom’s suffering, can you please help me?'” said Kaya. “So, I will then go to their clinician, and it’s usually not a problem…It just hasn’t occurred to them.”
Sanders said that what’s unclear to many nonpalliative care physicians is that the medically recognized indication for palliative care is any patient with “serious illness,” which researchers have defined as “a health condition that carries a high risk of mortality and either negatively impacts a person’s daily function or quality of life, or excessively strains their caregivers.” And he said that the initiation of palliative care should be much earlier than most physicians think.
“One of the things I’ve experienced since coming to Canada is that, whereas the rest of the world, certainly the rest of the Western world, has moved on to the idea that palliative care is for people across the trajectory of their serious illness from the time of diagnosis — here it’s all about the end of life. And the problem with that is, ‘What’s the end of life?’ Patients and families are left at the mercy of whatever doctor or clinician is in front of them, saying this is or is not the end of life,” said Sanders.
Sanders previously worked in Boston as associate director of innovation in the serious illness care program at Ariadne Labs, a joint centre for health care delivery innovation at the Harvard T.H. Chan School of Public Health and the Brigham and Women’s Hospital. “Frankly speaking, symptom management is a smaller part of our job. Because symptoms aren’t just things that make you feel bad. They also portend something. They mean something to you. The endless and eternal complexity of our work comes with helping people make it through. Helping people disentangle and make sense of that is a really powerful and important part of our job.”
Individual Efforts Matter
Although many nonpalliative physicians do a poor job recognizing a patient’s palliative care needs, assessing and addressing those needs is even more challenging, said Kaya. “There are standardized tools that we use in Canada that allow us to assess a patient’s suffering. It could be pain, it could be shortness of breath, it could be appetite, it could be fatigue, for example. Physicians also need to know what their limitations are, and when to refer to a specialist palliative care team, and that’s the other step that they sometimes don’t do.”
Kaya and Sanders pointed to weaknesses in the Canadian medical education system, as well as in hospital and political policies, but they emphasized that individual clinicians can still improve palliative care within the existing system. “There are some really good courses out there. The easiest and the most well-known one is Pallium. They have some really basic stuff, to some fairly advanced topics, and it’s aimed at physicians who are from different fields.”
Less than 18 months into his position, Sanders said that his goal “is to really expand access clinically to the outpatient setting and to embed palliative care clinicians in clinics, for instance, so that nonspecialists can start to build some of that primary palliative care expertise. Part of the way people learn this is having someone at their elbow helping them do it.”
Sanders and Kaya reported no relevant financial relationships.
Kate Johnson is a Montreal-based freelance medical journalist who has been writing for more than 30 years about all areas of medicine.
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