There is a cloud of darkness, misunderstanding, and stigma that surrounds the name palliative care.
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Somewhere, packed inside a box of childhood memories, is a photo of 3-year-old me. Dressed in child-sized scrubs, beaming, as I grasp my uncle’s hard earned medical degree (my name delicately taped over his). With the right amount of hard work and good fortune, I am two years into medical school and on the brink of my clinical rotations at the University of Toronto Mississauga Academy of Medicine.
I am truly amazed at all the incredible advances that have been made in medicine. People with cancer live longer, women are less likely to die in labour, and robotic surgery is no longer science fiction. Friends and family often ask what the most surprising part of medical training is. They often ask what it’s like to be in an ICU or an OR for the first time, and I always thought that would be the biggest deal for me. But it’s not. What I have been most shocked about is our failure to provide people with a dignified ending of their life.
The public has been galvanized around a conversation about the legalization of medically assisted dying, an incredibly important issue. It’s our system’s formal acceptance of a person’s right to die. It’s a step forward – one that I would argue is necessary, but not sufficient, to make dying with dignity the rule, as opposed to the exception. Alone, it applies to a small group within the population of terminally ill patients, and of those, not all will elect to utilize the service. We have renovated the roof of a building with a shaky foundation. That foundation is palliative care – a type of care all patients with terminal and chronic illness should be receiving. The key to helping our patients die with dignity is improving the palliative care we provide.
The World Health Organization defines palliative care as an approach that improves the quality of life of patients, and their families, when faced with the challenges of life-threatening illness. It strives for early identification, assessment, and treatment of pain and other problems – whether physical, psychological, social, or spiritual. Interestingly and notably, it makes no mention of restriction to the final days of life, yet that is what it has come to be associated with. This critical field of medicine has also become synonymous with a lack of timely access to services, delayed referrals by health-care professionals, and limited resources at local levels.
We are doing a disservice to our patients and their families – and I would argue that much of that disservice can be linked to the cloud of darkness, misunderstanding, and stigma that surrounds the name palliative care itself. Perhaps it is my naivety as a student, but I can’t help but feel that it’s time for a change. Palliative care is broken. The goal is to support people as they approach one of the most challenging times they will ever face – emotionally, intellectually, and financially. The goal is to support – so why not call it supportive care?
Some major centres have even played with this idea. The MD Anderson Cancer Center in Texas, a global leader in oncology and palliative care, surveyed physicians to ask if they thought a name change to supportive care could impact referrals. Overall, physicians preferred the name supportive care, and expressed they were more likely to refer patients to a service with that name.
These were not the only interesting results – physicians also found that the term “palliative” more frequently causes distress and hopelessness in patients and families. They then trialed the name change at their own palliative – whoops, supportive – care centre, and actually saw an increase in referrals over a nine-month period. The research and sample size are small, but what does exist suggests that a name change could have a real impact on perceptions, and more importantly, patient access to palliative care.
Our country is on a journey of realization around what it is to live a good life and to have control over one’s destiny. That conversation is happening in many different worlds, and medically assisted dying is one of them. What needs to happen next, as difficult and overwhelming as it may seem, is trying to tackle that shaky foundation. Until we do that, we are failing our patients at their most vulnerable – we are failing to give them a good death. I believe that timely and quality palliative care is a right, not a privilege; it ought to be the rule, and not the exception. So let’s support our patients.
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