First in a three-part series about palliative care in the Jewish community
TORONTO — When many people think of palliative care, they imagine a frightening, impersonal hospital ward or hospice where patients go to live out their last days.
But doctors and other health-care workers who have devoted their careers and time to this vital field say the common perception is a myth.
It’s an area of medicine that’s more about an approach to care than about its location.
“Palliative care is not a place. It’s a philosophy,” says Dr. Michael Gordon, medical program director
of palliative care at Toronto’s Baycrest Health Sciences, a world-renowned institution in research and seniors care.
“When we talk about palliative care, we talk about symptom management, comfort, and physical and emotional support – making sure the patient is as pain-free and comfortable as possible.”
Gordon has written and spoken widely on end-of-life situations, especially in relation to the elderly.
He’s a member of the University of Toronto’s Joint Centre for Bioethics and is involved in ethics education primarily for health-care providers. “End-of-life care is non-specific, though. The terminal phase of a disease can have a long course.”
In an interview at Baycrest, Gordon said the birth of modern palliative care is credited to Cicily Saunders, a British nurse and social worker who founded the first modern hospice in London, England, in 1967.
In Judaism, however, the concept goes back to the Middle Ages. “Making one’s death as comfortable as possible is not a new idea,” he said.
The biblical commandment, “and you shall return it [a lost object] to him [its owner]” (Deuteronomy 22:4) is seen as the halachic basis of a doctor’s obligation to heal patients. The 12th-century Jewish philosopher and physician Maimonides interpreted this broadly to mean restoring a patient’s body, money and mental health.
For Jewish practitioners in palliative care, the obligation means returning patients to a life that was not full of suffering.
Indeed, Gordon said the relief of suffering using pain management is the hallmark of this area of medicine.
“Palliative care is not part of the acute health-care system. It is away from the hub of active treatment.”
A more recent change in the philosophy behind palliative care, Gordon said, is that it’s now more widely believed that it should be started before the terminal phase of a disease has set in, so people can begin thinking about what they want to do when the end approaches.
“They need to [begin thinking] about the balance between medical intervention and comfort.”
Most people think of cancer when they think of palliative care, but “the next big step is to consider non-malignant conditions [such as dementia] within the realm of palliative care,” he said.
“Chronic disease management offers comfort and care, so patients don’t die in an acute situation. When we can see the end of a trajectory, we can probably [help] avoid suffering.”
Dr. Harvey Chochinov, director of the Manitoba palliative care research unit at CancerCare Manitoba, said that he became involved in palliative care because he has always been interested in helping people through difficult times.
“Appreciating vulnerability as part of being human is key to understanding the needs of people facing the uncertainties of illness and declining health. This is especially true near the end of life,” Chochinov said.
“Doing research in palliative care gives me an opportunity to study these issues. The more we understand the connections between the physical, psychological and spiritual dimensions of approaching death, the better we are able to care for patients and their families.”
He said he’s been asked innumerable times if his work is depressing. His response is that “not being able to right a wrong is depressing… hopelessness and futility is depressing. Palliative care is none of those things. It is about trying to improve the quality of life for patients and their families for whatever time they have remaining.
“There is a vast difference between dying well and dying poorly. Good care can decrease pain and suffering, and [can] change the memories that will be carried by bereaved families for the rest of their lives. No doubt, the experience of working with extremely ill patients and their families can be challenging, but people working in palliative care do so because they like to make a difference at a time when that difference can be profound.”
The philosophy of palliative care upholds certain core Jewish values, he said, “like menschlichkeit and respect for the rights, feelings, wishes and abilities of others. Perhaps that’s why studying dignity at the end of life has had such deep, personal resonance.”
Chochinov noted that Immanuel Kant, the 18th-century German philosopher, argued that everything either has a price or a dignity.
“Anything that has a price is replaceable by something of equivalent value. On the other hand, whatever is above a price and [has] no equivalent has a dignity. The message for health-care providers is that every patient is unique and irreplaceable.”
This idea is consistent with Jewish values, he said, but it’s “by no means exclusively Jewish. Death and dying are issues that transcend religion and race, socioeconomic status and sexual orientation. These issues touch everyone – patients and health-care providers alike. The realization that very little separates us from our patients, I think, underpins the ability to provide empathetic care.”
He said that many people think being admitted to palliative care is a death sentence, “but without trying to sound morose, being human carries a final prognosis. That said, if life must end, why not strive to live the best quality of life possible until life runs out? People are often admitted to our program and discharged home once their symptoms are under better control.”
Chochinov said that most medical schools across Canada offer students some minimal exposure to palliative care, and both the Royal College of Physicians and Surgeons of Canada and the College of Family Physicians of Canada have established an accredited training program.
“However, there is still a long way to go. People should expect more, which means that health-care providers, including doctors, need to learn more about how to deliver quality, comfort-enhancing palliative care.”
Families have to start thinking about discussing end-of-life care with their loved ones, he said.
“Discussions about end of life can be reframed and broadened into conversations about relationships and how we feel about the people who matter to us. ‘I care about you in sickness and in health, and in good times and bad times. What you want matters to me, today, tomorrow, and even when the time comes that you might not be able to speak for yourself, so let’s talk now.’ That strikes me as a gentle way to get started.”
Next week: Who are the palliative care doctors?