This article is dedicated to a former patient of mine. He described himself in our initial meeting as “acerbic, sardonic, sarcastic and irreverent Can you handle that?” I think he would have liked this article. But if you can’t handle it, maybe stop here.
Like most of you, I spent a lot of the lockdown enjoying comedian Sarah Cooper’s savage tweets of Donald Trump on Twitter. Whether it was “How to Medical” or “How to Testing,” her hilarious approach resonated with tens of thousands of followers.
So what, you are asking, does this have to do with palliative care?
For decades, we have known about the benefits of palliative care. First, we learned that when a palliative approach is provided to patients earlier, they live longer. Then, we learned it improved quality of life for patients facing a life limiting illness. Then we learned it actually saves the healthcare system money and resources that can be reinvested back into other areas of the system. And most recently, a study in Ontario showed how palliative care can reduce ER visits, hospital and ICU admissions in patients with noncancer diagnoses (BMJ, 2020). Like our prime minister, we just keep on learning.
Atul Gawande once wrote: “If palliative care was a drug, we would patent it.” So why are patients not demanding better access to palliative care and why is government not shoveling money into one of the few areas of medicine that actually simultaneously gives better care and a return on investment (ROI)?
The answer is: palliative care has a public relations issue.
Now most of you in the field will immediately chime in and say “Oh yeah, we are dealing with that. We keep telling people that palliative care is not just about dying.”
So, uh, how’s that working out?
The stats in Canada are not so good – please see my article in the Medical Post on the federal government’s current (lack of) Action Plan.
The stats are also not good in Ontario, according to Health Quality Ontario’s 2019 report (HQO).
Clearly, this particular messaging is not resonating well with either the public or government. Since Senator Sharon Carstairs identified access to palliative care as an issue in her 2010 report “Raising the Bar,” we have lost a decade of actually moving forward and improving access. Countless thousands of patients have died without access to high quality palliative care. Unfortunately, you probably know some of these patients.
So, what can we learn from Sarah Cooper?
People like to laugh, even the dying ones. Some of the best and funniest patient encounters I have ever had have been with patients facing imminent death. Flowing tears, bellyaching laughter. Rather than dwell on the inevitable, they choose to look on “bright side of life” (whistle if you wish here).
So, you can imagine how I felt when Healthy Debate recently printed my article on hospice funding in Ontario and used the notorious “sad hands” to illustrate the article that have become synonymous with palliative care (ed. note: sorry about that, big guy). Frankly, I can’t think of a more depressing way to promote palliative care, can you? It’s no wonder no one wants to discuss goals of care or advance care planning. You would need an antidepressant just to get through it.
How do we fix palliative care’s PR problem? We may already have the answer, sitting right under our noses.
Dr. Denise Marshall, from McMaster University, once proposed a “public health approach” to palliative care based on her experiences in Ireland. One example was funny beer coasters placed strategically in pubs to encourage patrons to have advanced care planning discussions. Love them or hate them, at least people talked about them.
If we can teach people to wear seat belts and condoms (separately, together is not recommended), why can’t we teach them about advance care planning and the benefits of palliative care? And given how quiet things have been with public health in recent years, I am sure they are looking for some work to justify their existence.
Here’s another example. Check out how New Zealand teaches parents to talk to their kids about Internet pornography.
Just like their approach to COVID-19, Canada can learn a lot from New Zealand.
So maybe, we need a similar approach here in Canada when it comes to palliative care?
Imagine this: instead of constantly nagging people that palliative care is “not just about dying,” why not have some fun with it?
Imagine if Marvel’s Deadpool, Canada’s very own R-rated superhero (played by Vancouver’s Ryan Reynolds), decided to do public service announcements about palliative care? Clearly the irony of someone who can’t die teaching us about dying is simply too delicious to ignore. If only Ryan would put down the Aviation gin and leave Hugh Jackman alone.
Or consider messaging like this video about insurance on “dumb ways to die.”
And for those who still can’t embrace the “death and dying” approach, I give you Monty Python. During a global pandemic, well, that just writes itself: https://youtu.be/DscJ5PFkZxQ
Palliative care started in the 1960s with Dame Cicely Saunders in St. Christopher’s Hospice in England. It began when she decided that dying patients deserve the same high-quality care other patients enjoy. Palliative care gets its name from Dr. Balfour Mount, an urologist (pun intended) who created Canada’s first palliative care unit in Montreal (in your face, Manitoba). Despite numerous attempts over the years to distance itself from death and dying, palliative care continues to be associated with the grimmest of reapers.
So, I submit to you, constant readers, that rather than run screaming away from its association with death and dying, I am suggesting that palliative care “lean into the curve.” Clearly what we are doing is not working. All the data and studies show that access to palliative care remains poor. Government remains at best distracted and at worst disinterested despite the clear benefits to patients, families and the greater healthcare system.
The time has come to try a different approach.
I mean, we can continue to bang our heads against the wall but the National Football League has clearly shown us what that will accomplish (CTE, chronic traumatic encephalopathy, for the non-medical readers). Einstein has thoughts on our current approach too.
Even if you hate this idea, you just proved my point by reading and responding to this (that’s why there is a comments section below). We need to get people talking. As Christopher Walken reminds us, “we need more cowbell.” I say we oblige him.
(I’ll be super disappointed if nobody gets this Easter egg in the comment section).
So just like Kathy Kortes-Miller’s book tells us that “Talking about death won’t kill you,” neither will palliative care shrivel up and melt away if it finally admits that death and dying are part of the plan. And maybe we can have some fun while we are at it.
Let’s be serious for a moment. If caring for patients at the end of life has taught me anything, it is the bravery and grace they model for the rest of us. The vast majority of patients want to talk about death and dying, they just need to know we are open to having these discussions and that we will be there with them through the good times and the inevitable bad times too. Is that too much to ask?
It is often said we live in a “death-fearing society.” If we, meaning the palliative care community, can’t talk about death and dying, then who can?
The comments section is closed.
Palliative consideration utilizes a group way to deal with help patients and their guardians. This incorporates tending to viable necessities and giving loss advice. It offers an emotionally supportive network to help patients live as effectively as conceivable til’ the very end.
Palliative consideration utilizes a group way to deal with help patients and their guardians. This incorporates tending to viable necessities and giving loss advice. It offers an emotionally supportive network to help patients live as effectively as conceivable til’ the very end.
This article is refreshing. When palliative care is confused is confused with fears and crises around not-so-palliative deaths then everyone is stuck in fight/flight and mute on the topic of death. Humour, play and fun lifts us out of stuckness and drama and begin to regulate and function with relatedness and flexibility. We need to “play” with death – and this needs to be a new cultural norm.
Thank you Cherie, I take refreshing as a compliment. The opposite would be a bit gamey….
More cowbell Yess! (one of my fave SNL) says it perfectly :-) As a patient partner/advisor in several end of life initiatives (and author of Death Kills..and other things I learned on the internet) humour is my modus operandi. (I often quote my hub who said, “if you die before me, I’m never talking to you again.”) But never was humour/light-heartedness as relates to this tricky topic of palliative care,end of life more evident than in my experiment: I take a Whiteboard with me with a fill in the blank: “I want to ___ until I die.” Neither a bucket list nor something aspirational but rather a reflection on what small thing brings joy, comfort, happiness. Every single participant smiled when completing a board – even tho it was about dying (Darren, one day, perhaps you, too, will fill in the blank :-) I am puffed with pride that thematic results are now published! https://doi.org/10.1007/s40271-020-00435-6 ..
Thanks Kathy, your whiteboards are famous.
You are so very close with the cowbell.
Who is the band and what is the song?
Don’t Fear the Reaper by Blue Oyster Cult.
Love the article…we need more humour…thanks for your voice.
Ding ding! We have a winner!
Dr. Cargill, as an aging and long term care planning specialist I send you huge kudos for this article. Trying to get Canadians to face the need to plan for long term care (a hair-tearing-out experience at times) is a cake walk compared to convincing people to plan for end of life. I will adopt your strategies when educating about advance care planning.
Thank you!
Thanks Karen.
Kudos for what do.
I simply share what I find works for me. And given the average length of stay for LTC is 2 years, we are not that far apart!
Loved the humour throughout your post! I agree wholeheartedly with all your points. When my husband was dying of pancreatic cancer, in Toronto, he received excellent in-home visits and support from a palliative care doctor, daily IV nurses, an occupational therapist, and a social worker. When he needed a hospital bed, bedside commode, wheelchair, etc., these were provided free of any extra charges. This level of care should be the norm for everyone, everywhere. I dedicate much of my writing and publishing to advocating for “cultural comfort” around the topic of death. Now with Covid-19 in the picture, I can only imagine that at-home care planning AND advance directive discussions with one’s physician and loved ones should be on everyone’s agenda. Thank you for your article. (See some of my books and blogs at journeysendbooks.com.)
Hi Julie,
Glad you enjoyed the article, and I’m glad your husband got good care.
Sadly, not everyone does get that care. Please see my article about the postal code lottery of palliative care.
Thanks for the link!
Perhaps when people start accepting that they are going to die when and if the time comes for palliative care is seen to be needed they will demand a more positive approach to how the patient is dealt with both physically and psychologically
Above all the need to be assured that they will not b allowed to suffer pain once it becomes too severe.
The present system in the UK leaves that until even the medical staff can bear that pain any longer
We do live in a death fearing/denying society. Yet we all die, it is part of the human condition.
Great article! I am looking forward to exploring some of these resources
Thanks Brenda. Make sure to check out the links in some of my previous articles as well!
We need more laughter about death. Waiting to hear Deb Kimmett from Napanee area @ comedienne who is doing a night with local hospice ,as a fundraiser. It as postponed due to Covid.
Thanks Janice.
Exactly. The more we make death and dying a taboo subject, the more we prevent the conversations that are necessary for better EOLC.
I wholeheartedly agree that we need to tweak our approach. I look forward to hearing some suggestions so that we can get on with promoting end of LIFE and perhaps redirect some of the community and corporate support that seems to be set on auto pilot towards kids. (Maybe the WE scandal can send a wake-up call!)
Thanks Philip.
I have written many times about how we neglect end of life care in medicine.
We all die. It’s a fact. That’s why we need to make sure patients have access to high quality palliative care.
Ok, this is an article that should stir some debate :)
Look forward to your questions, comments and maybe even a gratuitous insult or two.
Fantastic article. As a hospice nurse I completely agree. We can avoid discussing death for sure, but we cannot avoid experiencing it. So, why pretend and make the inevitable harder than it can already be?
Thanks Shani.
In an effort to broaden the acceptance of palliative care, we may have done it a disservice. I feel we can still talk kindly and compassionately about death (sometimes sarcastically) but we need to talk about it nonetheless.