End-of-life care: ‘If dying is inevitable, why do we have such a difficult time with death?’
Key Takeaways
The first palliative talk I went to as a practicing physician opened with a slide displaying a pie-chart labeled “Scientific Study on Death.” The legend showed orange representing people who live, and blue representing people who die. As you can imagine, the pie chart was entirely blue. The whole thing was meant to be a joke, but that slide made a real impression on me: 100% of us die. What an incredible statistic.
If we all die one day, then why do we, as physicians, have such a difficult time with death?
The fear of failure
There is obviously no straightforward answer to that question. I think, as humans, it’s only natural to fear death. But I also think that we, as physicians, have been taught to save lives, so death feels as if we’ve failed. That’s why most of us became doctors, isn’t it? We entered medicine to save lives and to help people. But what if I told you, sometimes, by focusing on saving lives, we’re actually hurting people?
When we fail to recognize that a patient is dying, we may be depriving them of quality time with loved ones and comfort care.
"By failing to recognize death when it is inevitable, we could be contributing to complicated grief among their friends and family."
— Courtney Manser, MD, CCFP
And by avoiding these difficult conversations, we are not allowing patients to have a say in what they want their end-of-life to look like.
Studies have shown that palliative care does not hasten death—in fact, in some cases, it may actually prolong it.[]
Recognizing and communicating signs of dying
As a palliative physician, on more than one instance I have had a patient urgently referred to me that was activity dying—and yet the family was not aware. Granted, sometimes this is due to denial, because it is so difficult to accept a loved one is dying. However, I encountered cases where the family was simply not told.
I once walked into a room with a patient with Cheyne-Stokes respirations, and their family was told she had been transferred for active rehabilitation. She died less than 24 hours later. To say that this death was traumatic for all involved would be an understatement.
Many of my palliative care patients who did not receive a clearly explained prognosis do not have cancer, but rather a chronic, life-limiting illness such as COPD or CHF.
Many of these patients, when faced with the decision to be admitted to ICU or to remain comfortable at home, choose to stay home. Some don’t, but the point is that it should be entirely the patient’s decision to make.
This is the key to these conversations: The patients themselves should be well informed so they are able to express their goals of care and wishes. This is so important, because research shows that difficult conversations allow patients to maintain autonomy, dignity, and quality of life.[]
A lack of end-of-life training
Knowing this is true doesn’t necessarily make anything more clear. Is it that we can't recognize when someone is approaching the end of their life? Or is it that we have trouble communicating the truth?
Unfortunately, it may be a bit of both. One study found that most often, physicians overestimated the time that a patient had left to live.[] As well, a national survey from the John A. Hartford Foundation found that almost half of the surveyed physicians didn’t know what to say when discussing end-of-life care, and under a third said they hadn’t had any formal training regarding end-of-life discussions.[]
"The bottom line is that we don’t always communicate well regarding these difficult end-of-life discussions, and when we do, we’re not always right."
— Courtney Manser, MD, CCFP
Although palliative and end-of-life training has improved in medical schools and residencies over the years, we still have a long way to go.
Making time for difficult conversations
Discussions are always best done before a crisis occurs. If a patient has a life-limiting illness, their wishes should be known by their entire care team. This involves initiation of the discussion, clarification of prognosis, discussions of end-of-life goals, and establishment of a treatment plan.[]
The discussion should go beyond advanced directives and instead focus on fully exploring a patient’s overall goals of care and what quality of life means to them. This way, when a decline in health or acute illness occurs, there is a plan in place, and everyone, family included, is on the same page.
It’s also important to communicate the normal signs and symptoms of dying to a patient’s loved ones. In healthcare, we rarely use the words “normal” and “dying” in the same sentence. But dying, as we all well know, is a normal part of life.
When it’s expected, communicating the signs in a calm and confident manner can help alleviate stress and worry from family and loved ones. As a physician, I believe that giving people the choice of their future care through open communication can help them feel empowered at a time in their life when their disease has taken away so much.
We all have to navigate death at some point among our patients. Death does not equate to physician failure, and ignoring it will not make our patients live forever. It's time we all make these discussions a priority.
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