In honour of National Hospice Palliative Care Week, Providence Health Care palliative care physician Dr. Lauren Daley tackles some prevalent myths about end-of-life care.
The following is from Dr. Daley’s blog, Talk Dying to Me:
Misconceptions about palliative care can prevent people from accessing a service that will make them feel better, and may even help them live longer. It’s time to demystify some of these commonly held beliefs.
It wasn’t long after I started working as a palliative care doctor before I realized that palliative medicine is largely misunderstood. Many people think they know exactly what palliative care is. Unfortunately, what people think they know is often inaccurate and based on myth rather than fact. These common misconceptions about palliative care can instill fear and anxiety in those being introduced to palliative services for the first time.
Welcome to the bane of every palliative care clinician’s existence.
I’m hoping this post will open your eyes to what palliative care is, what it isn’t, and why it should matter to you.
Before we move forward, I invite you to discard the visions of butterflies and quilting circles that surface when someone mentions the words hospice or palliative care. Palliative care is many things, not just holding hands with dying people and singing Kumbaya.
For those of you asking, “Why should I be concerned about expanding my view of palliative care?” I get it. Palliative care is not a particularly sexy area of medicine. It rarely gets a nod from prime time medical dramas – (come on Shonda Rhimes) – probably because it doesn’t conform to society’s romantic vision of doctors and nurses saving lives under harrowing circumstances.
What people don’t realize, is that saving deaths can be as valuable a pursuit as saving lives.
So, why should you care about palliative care?
I can’t guarantee that you’ll need a cardiologist, or an onocologist, or any other ‘ologist in your lifetime. But you know what I can guarantee? You will die. 100% of you will one day die, and therefore could one day benefit from palliative care services.
So listen up! This is your business as much as it is mine.
#1: “Palliative” is not a euphemism for dying.
It’s an idiom people love to use. “Haven’t you heard? He’s palliative…” Or, as other health care providers sometimes say to me, “What are you doing here? She’s not palliative yet.”
Such phrases are often whispered ominously. Perhaps out of fear that they’ll summon the Grim Reaper. (Please note, I am not in cahoots with the Grim Reaper).
I’ve decided that people rely on the word “palliative” because they’re afraid of the D-word. They’re afraid of saying “grandma is dying,” or “my patient will die.” Instead, they settle on using “palliative” as a euphemism for dying. Just one of many euphemisms attempting to soften the blow of common D-words like death, dead, dying, died, etc.
Palliative actually means “to cloak.” To protect. In medicine, this translates to alleviating suffering caused by a serious illness. Central to this is the management of pain and symptoms. As you can see, the term “palliative” actually has nothing to do with dying or being dead.
Not surprisingly, when we use “palliative” as a euphemism for dying, people become fearful that they are closer to death than they probably are. The focus shifts to dying rather than living. This may discourage access to palliative services intended to help people live as well as they can for as long as they can.
To summarize, calling another person “palliative” makes zero linguistic sense, is entirely inaccurate, and can cause harm. You should probably stop saying it. Palliative care providers everywhere will thank you.
#2: Palliative Care and Hospice Care are two different things.
(*the following is specific to Canada, and may not reflect policies in other countries)
The terms “palliative” and “hospice” are often used interchangeably. In fact, they have distinct meanings. The key difference between “palliative care” and “hospice care” lies both in the issue of prognosis (how much time a person has to live) and goals of care (how much an individual is willing to go through for the possibility of more time).
Access to palliative care is not dependent on prognosis or goals of care. Someone could have a life expectancy of years and want all kinds of life-prolonging interventions, and would still benefit from relief of symptoms related to their illness.
Access to hospice care, however, is dependent on a prognosis measured in months, and goals of care that align with a “hospice philosophy.” This means an individual is at a point in their illness where they want to focus exclusively on comfort and quality of life, rather than prolonging life.
#3: Palliative care is not cranking up the morphine until grandma stops breathing.
Nope. Nope. Nope. We absolutely do NOT do this. This would be considered manslaughter, and while I do strive to be a bit “edgy,” committing a felony is not my idea of a good time.
I’m stunned that some people think killing patients with morphine is the bread and butter of palliative care. I’ve even heard of other healthcare providers perpetuating this urban legend, which is shocking and disappointing.
While opioid management is a big part of palliative care, we strive to titrate opioids in a very judicious way. Our priority is to balance adequate pain control without causing harmful side effects (including untimely death). In fact, my biggest fear is accidentally overdosing someone with an opioid I’ve prescribed. I agonize over getting the dose just right.
So please don’t fear opioids prescribed to manage pain or shortness of breath caused by serious illness. The medications we prescribe in palliative care are thoughtfully considered, and offered with the sole intent of alleviating distressing symptoms.
To put it bluntly, we take this stuff seriously and 100% do NOT want to kill you with morphine (or by any other means for that matter).
#4: Accepting palliative services does not mean you will die sooner.
Quite the opposite, actually. There is a lot of evidence to suggest that early integration of palliative care alongside disease modifying therapies (i.e. chemo), actually makes people live longer. It should come as no surprise that when people feel better, they do better clinically. They can tolerate potential life-prolonging treatments more effectively. Their energy isn’t wasted on pain, or breathlessness, or vomiting their guts out. They have more capacity to do things that bring them joy and make life worth living. Isn’t palliative care rad?
#5: Palliative care is not amateur hour.
Palliative care is not all handholding and showering you with compassion (although that’s sometimes part of it). Believe it or not, palliative care doctors actually went to medical school and know how to keep people alive too! The foundation of palliative medicine is the delivery of impeccable physical care, grounded in patients’ individual goals and wishes.
What does that mean?
Let’s say you have cancer and are receiving chemotherapy and radiation. You become very sick with an infection as a side effect of your treatment. Palliative care clinicians can investigate and treat your infection so you can go on to have more cancer treatments… if that’s what you want.
Have heart failure, but don’t want to die of your pneumonia? We’ll treat your pneumonia and continue to manage symptoms related to your heart failure… if that’s what you want.
Have kidney troubles but don’t want to die from your acute GI bleed? We’ll manage your GI bleed, and help you navigate whether or not starting dialysis is right for you… if that’s what you want.
Have chronic lung disease and are sick and tired of being sick and tired? Don’t want to prolong things any more than they already have been? We’ll make sure your wishes are honoured, and will work to alleviate your symptoms so you can have a peaceful dying experience… if that’s what you want.
See the common thread here? Palliative care is all about you! It’s about the type of care you want to receive. Of course, we’re here to guide you along the way and help you make informed medical decisions, but ultimately, you’re the boss.
Some might call palliative medicine, just good medicine.
Read more of Dr. Daley’s insights into the world of palliative care on her website, Talk Dying to Me.