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.”
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?