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Palliative care: It’s not what you think!

By Kirsten Efremov

I’ve been learning and trying to understand palliative care and the misconceptions behind it since 2018.

It’s a fact that 100 per cent of the population will die, and yet we are still afraid to talk about death and disease.

Sadly, some of us will die sooner than others, and as AYAs with cancer, we often face the idea or our mortality earlier in life than most.

When asked what palliative care is, many people associate words of dying, death, end-of-life, hospice, and seniors, when in fact, palliative care is focused on symptom management, living, and improving the quality of life for both the patient and their family/caregiver across the age spectrum.

What if I told you death, dying, hospice care, and palliative care are different? What if I told you end-of-life care was also different? What if I then told you that palliative care is almost like a spectrum and that every disease state can benefit from a palliative care consult?

In fact, in an ideal world, anyone diagnosed with a potentially life-limiting illness, whether curable or not should have at least one appointment or discussion with the local palliative care team so they know someone can be there to help with pain and symptom management.

These misaligned attitudes and gaps in understanding, not just by the general public, but also by health care professional, is why Canadians aren’t having their wants, desires, and needs met when faced with diagnoses such as cancer.

We are a death denying and disease denying society always looking to cash in on the new anti-aging concept and pretending to not acknowledge we might all face a chronic disease at one point in time or in many of our cases currently facing chronic disease.

There are several reasons why this could be happening, including the lack of physician knowledge about what palliative care is, when to refer patients, and how it should be used in tandem with curative treatments.

Did you know: Only 12 per cent of medical students are required to participate in clinical rotations in palliative care and only 18 per cent of physicians in cancer centres are exposed to palliative care.

So let’s talk about it. Let’s get comfortable talking about the uncomfortable. It’s the only way we can change perspective and perception.  Let’s take the big bad world of palliative care and break it down.

Some of these terms are synonymous with each other and the definitions can vary from province to province, region to region, and even provider to provider based on their understanding, funding, and access. However, palliative care should be started at the time of diagnosis along side curative treatments.

Here is what I have found and learned

Supportive care/palliative care/care management/symptom management

Palliative care

Resource: I highly recommend reading this Canadian Virtual Hospice article on palliative care

Respite care

End of life care

Hospice care

At this point you might be thinking well why not just change the name of palliative care? Well, no matter what we change the name to, the same connotations will eventually end up following that word, and once people learn what that is, we will be back in the same predicament.

Palliative care physician Dr. Jose Pereira said, “Waiting to activate palliative care only in the last days or weeks of life, we miss lots of opportunities to improve quality of life of patients throughout their illness trajectories.” Pereira noted one study showing when palliative care is introduced early on in the illness trajectory, “patients lived two to three months longer than those who received palliative care only at the end of life.”

Questions to ask if your healthcare providers bring up palliative care:

Let’s bring light to the words, ask questions, and start talking about the issues we really don’t want to talk about — including how we want to live and die so that we can have the quality of life we want while living with and beyond cancer.

Just because someone is dying does not mean it will happen tomorrow. Palliative care should be started at the time of diagnosis alongside curative treatments. Talking about death won’t kill you, but not talking about death might kill your end of life wishes.


Additional resources:

If you are interested in learning more about palliative care, I suggest listing to the podcast The Waiting Room Revolution where Dr. Samantha Winemaker, and Dr. Hsien Seow, share real-life stories to explain the seven keys to being hopeful and prepared when facing serious illness.

Also, check out Hospice Nurse Penny or Dr. Nadheed Dosani!

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