"I know we're trained to expect that we'll lose patients like this, that some of them will die no matter what we do, but I feel so guilty. Why can't I stop feeling like it was my fault?"
- Paraphrased from a closed group on social media
As explained in A Profile of Death and Dying in America, part 2 of Approaching Death: Improving Care at the End of Life, the 20th century saw a massive change in the perception of death by people in the United States and some other countries, causing us to approach it in a way that had never been seen in any other time or place.
Before this, "dying — like being born — was generally a family, communal, and religious event, not a medical one. Because many deaths occurred at home, people were likely to care for dying relatives and, thus, to have a fairly personal and direct experience with dying and death." Doctors were not expected to prevent death because they couldn't. The role of the physician was usually to give guidance on what we now call "supportive care" and then wait with everyone else for the patient to live or die. In an era without ventilators or antibiotics or cross-sectional imaging, tools that could help us actually prevent a death were very few.
All of that has changed now. The minority of people in nations with sophisticated healthcare systems have actually been present when someone died. Death is a remote process that we collectively pretend isn't happening until we can't anymore. In the States, at least, we then pretend just a little bit longer. When I rotated through the ICU as an intern, it was truly shocking to me how many people would stand there and watch us perform CPR on their 90-plus-year-old relative, someone who the most raw layman could see had no hope of a decent quality of life ever again; would hear the crackling as we broke her ancient, frail ribs with our chest compressions and yet would insist that we keep going.
In fairness, I think a big percentage of these folks were just in shock. They had probably never made a life-or-death decision in their lives and now were being asked to do so in very stressful, public circumstances. It is this segment of the population that I want to talk about here, leaving aside the small but wedge-issue-driving and therefore well-heard subgroup that believes, they say because of religion, that life is so sacred that it must be preserved at any cost, no matter how horrific the suffering thus created, even when there is absolutely no hope of relief ever coming. Mercy simply never enters into it for them. There is nothing any of us can do to change that mindset, except perhaps insist that those folks work at least 40 hours a week caring for hopelessly ill people who only want to stop suffering.
In any case, many of our fellow citizens just don't have the right frame of reference for making end-of-life decisions. After my first career in the military, this took me a while to understand. Something about writing out your will and designating a recipient for your life insurance when you are 18 or 20 years old really clarifies the mind on this topic. But the majority of folks skip that step and keep delaying it until… well, often until they die and it's too late to say what they want.
To be fair, we've gotten a lot better at preventing, no, delaying death in a very short span of years. Look here at Figure 2 from A Profile of Death and Dying. The World Wars, though a horror for much of the human race, did bring us mainstream use of antibiotics, blood transfusions, competent trauma surgery, chemotherapy, the use of metal plates and fasteners to repair bones. The antibiotics alone were a true miracle of science; before World War II, the leading cause of death worldwide was infectious disease. Now it doesn't appear until #4 on the list and accounts for only 3 of the top 10 causes.
For the first time in history, in the period since my grandparents were born, medicine became able to really significantly delay some deaths with tools available to a big segment of the population. But then somehow we got a little too carried away with the excitement of this development and started to pretend that death was no longer inevitable.
Says Mary Roach in her amazing book Stiff: The Curious Lives of Human Cadavers, "We are biology. We are reminded of this at the beginning and the end, at birth and at death. In between we do what we can to forget."
That sounds pleasant enough, but there's a more insidious side to this change of perspective, and it's one many of us have to contend with every day in the clinic. People have come to habitually talk about death in terms of a fight against an adversary. I am here to say that this is a truly harmful narrative that sets everyone up for heartbreak. How many times have you oncology clinic folks out there heard these?
"She'll make it if anyone can. She's a fighter."
"Don't give up on me, Doc. I know I'm old but I have a lot of fight left in me."
"I need a doctor who will fight for me, not just give up because of statistics."
"I'm so tired, I just want to be out of pain, but I can't tell my family that. It will hurt them so much if they think I gave up the fight."
So in that story, physicians are judged by their degree of skill in preventing death, and patients by their strength in struggling against it. Which means we are all massive failures because, folks, I hate to break it to everyone, but each and every one of those patients is going to die. And even if you are in pediatrics or adolescent medicine, it's going to happen pretty soon, taken on the scale of history.
When we choose to ignore that unchangeable fact, when we let the warm, fuzzy feelings we get from cheering up a patient with a fatal diagnosis by talking about how long they might survive (not belaboring the fact that they'd have to be in the very luckiest 2% of people with their disease), they tell us we are wonderful doctors and we walk back to our computers with a spring in our steps. But then death comes to them like a 2 x 4 upside the head.
We have failed them when that happens, because patients who enroll in hospice not only suffer less distress in their last days but also live longer. We are the experts, we have the best possible chance of giving them good guidance toward that better end. It is our duty to do that, not to strive and ignore with all our beings and then feel like failures when the inevitable happens. That's not only harmful to our patients, but it is a clear-cut path to massive burnout and the loss of our talents from the people we could have served down the road.
So, what can we do instead? There are some pretty simple steps that help this turn out better. We can, in a way that takes into account each patient's culture and beliefs:
Actually talk about death with our patients
Talk about our own deaths to help keep theirs in perspective
Use the words "death" and "died" instead of "passed on" and "passed away"
Make completion of end-of-life documents routine not only for our patients but for the family members who accompany them to our clinics
Acknowledge our own grief and work on our coping mechanisms so that our own repeated trauma doesn't cause us to avoid the topic when a discussion is needed and timely
Support organizations that work to provide practical end-of-life care for everyone in a way that allows them to keep their dignity
Put end-of-life topics and resources in our professional reading rotation so we are reminded to continue improving the way we talk to patients about this important subject
Listen; talk with our patients, not at them, when we discuss death and dying
In parting, some wise words from an experienced pediatric oncologist, Dr Stacy Month:
"The only way to get through it is not to say, 'These are my failures, these are the patients that died'. Rather, if you say. 'This was the situation given to everyone, and these family members are the ones who are going to live on and be successful, productive members of society and not have severe depression the rest of their lives', — then that's a contribution that our team is making."
What ideas can you hand off to our colleagues to improve their discussions of death and dying with their patients?
Please join the discussion below, but if you need to communicate with me offline you can reach me at Medscape-Blogs@webmd.net.
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Any views expressed above are the author's own and do not necessarily reflect the views of WebMD or Medscape.
Cite this: Kathryn E. Hitchcock. Healthcare vs the Grim Reaper - Medscape - Sep 23, 2021.
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