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.
(Reference)
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
- These can often all mean the same thing. Every province, region, centre, and healthcare provider will word it differently, but do not be afraid. It does not always mean you are imminently dying. Symptom and pain management can be very helpful at any stage in a cancer diagnosis, whether you are curable or terminal. It’s best to consult to your palliative care team which can help you understand options.
Palliative care
- Someone can be palliative for one year or 30 years. It is NOT end of life, but a way to manage symptoms, goals of care, and quality of life. It can be provided anywhere, including in a hospital, in the community, or at your home. It is also important to know that palliative care does NOT make death occur sooner and it does NOT mean there is no hope. In fact, it can actually give more hope and improved quality of life. You can even come off of palliative care. For example, someone who might require and organ transplant can be palliative, then no longer need that care once they get their new organ.
Resource: I highly recommend reading this Canadian Virtual Hospice article on palliative care.
Respite care
- Respite care is a time for your caregivers to get a way and have a break. We all know caregiver burnout is real. Respite care allows someone to help care for you while your current caregivers get a break. Remember, it is important for your caregiver to take a break and that we all need to ask for help sometimes.
End of life care
- End of life care is care when you are close to death. How do you know when you are close to death, though? There are physical signs your body will show. This is more of an aspect of hospice care.
Hospice care
- One usually enters hospice care when they have six months or less to live. You can have in home hospice care, or stay in an actual hospice if you don’t want to die at home. This is often more comfortable than dying in a hospital. It provides a home-like stay while having all the healthcare needs you might require.
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:
- What do you mean by palliative care?
- How do you (or the institution) define it?
- Why is it going to help me?
- Are you talking about supportive care, or going to further the discussion to end of life or hospice 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.
Remember:
- Palliative care DOES NOT mean death!
- Palliative care isn’t bad
- You may only get a referral to palliative care and that’s okay; sometimes they just want to meet you
- Respite care and hospice care are different. Hospice care is often offered when someone has less than six months or three months to live. Respite care is giving your caregivers a break, time for them to rest and regenerate
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!
