Death is not a sexy topic. It doesn't involve REBOAs or ECMO, just dying people. And I have the length of this article to convince you that sometimes dying is actually the right thing to do.
Death is important. A lot happens to you during your life, but you only get one shot at death. Your patients, like you, are going to die.
This article gets happier, I promise. Where our patients have trusted us with their lives for many years, they are now increasingly distrusting us with their deaths. The media are realizing we do things to people that they may not want, and there is a flurry of books being published, mostly written by doctors, talking about looking after patients at the end of life.
Patients are increasingly saying maybe doing everything isn't actually what they wanted. This has led to several professional societies trying to address this. You've seen all the choosing wisely campaigns. They're basically saying, “Don't do things that aren't going to help people.” These campaigns are only required because we're obviously not choosing wisely.
Death is a Procedure
It's fair to ask, “What does this have to do with me? I'm an emergency physician, an intensivist”—the displacement argument. “Primary care physicians are better placed to talk about this because they know their patients.” This is almost always the case but ignores the special privilege of acute care physicians, that we are often called to the gurney or bedside of dying patients because dying patients often look like sick people. It's pretty difficult to die in acute care facilities without first passing through the rapid response team activation criteria. This means that we are often present 24/7 to arbitrate sick v. dying unlike our palliative care colleagues.
The way society has been exposed to dying people has changed significantly over the past thousand years. Many more people died from diseases now preventable, and families were often present during deaths at home, with spiritual support predominating. Then physicians screwed it all up. We took people away from dying in their community with their family and their pastors, put them in hospitals, and gave them medications to sleep and painkillers so they died “in comfort” as we deemed it. Death was no longer a natural process. It became a medical procedure.
Think back. Had you ever seen a dead person before medical school? We built a mystique around what dying people look like, and this feeds a lot of things. Think about the language we use to talk about death, the euphemisms we use to avoid saying the dead word. We say people “passed on” or “went to a better place,” and you hear these in family conversations to the point that you think, “Do they even know what I'm talking about?”
I moved to New Zealand almost 20 years ago from a conservative London teaching hospital where it was rare to say anything that might offend a patient. After two weeks in New Zealand, I was in my first family meeting with a senior colleague to inform the family of a patient with severe traumatic brain injury that he was not going to survive. The neurosurgeon was 20 slices into the MRI, explaining in incredible depth what the caudate was and talking about the EEG.
It was clear this family did not know what was going on. My ICU senior touched the knee of the father of this patient, and said clearly and directly, “His brain is ****ed. He is going to die.” I was shocked that he used that word. This approach was something I had not seen before, but the father shook my colleague's hand and thanked him for explaining it in a way he could understand. They turned off the machines and allowed him to die.
The Conveyor Belt
Death trajectories—the path we and our patients take toward our final days—have been well described. A quarter of patients in an average general practice in the United Kingdom will die from cancer, and as they do, they deteriorate over time. Others have chronic relapsing diseases with a gradual decline in baseline, punctuated by intermittent acute deteriorations after which they recover, but they never return to baseline. These intervals are often marked by hospital admissions and get closer together as they deteriorate further.
Another third die from frailty and old age. One in 10 will die from a sudden significant event like trauma. But when we meet many of these people for the first time, they often look the same (trauma aside). We have little idea where these patients are in their trajectory, whether someone is dying from an irreversible process or has many years of life left. We also have little idea what the patient or his family knows.
This leads to differences in the way we address people. Take the patient to whom something bad happens and who will die unless you do something. Appropriate medical intervention aims to return them to baseline, to resume their role as a responsible tax-paying member of society. But what often happens is that your patient had already been deteriorating for some time, and by intervening you've just delayed his death a little. His quality of life was poor, a lot of money has been spent, and the outcome hasn't changed: He died. The problem with doing everything is it ignores context; those insisting on it are often best placed to understand the implications, and no treatment is free of side effects. The converse, that treatment limitation may be perceived as a failure, is not what we were trained to do. Realistically we frequently limit what we do; we don't refer everyone with severe deteriorating lung function for a heart-lung transplant.
We are often fighting the critical care conveyer belt where the sickest patients who present prehospital are transferred to an emergency department and inevitably carried through till they reach the ICU, often via radiology or an OR. What happens at any of these stages is determined by the clinical environment the patient is in, and the ICU is the ultimate destination of the dying unless someone actively intervenes.
We physicians have different viewpoints reflective of the culture, our colleagues, and the mentality of our profession. What drives a surgeon is not what drives an emergency physician or an intensivist. The way we look at things determines whether we will delay or prevent death, and it has a big impact on what happens to our patients, even if they are unaware of this because much of our cultural bias is unspoken.
Intensivists, my own niche group, aren't good at knowing what our patients' outcomes are going to be. Two remarkable studies found that only a third of patients who were ventilated for more than two days actually walked out of the hospital unsupported. (Lancet. 2009;373:1874; Lancet. 2016;388:1377.) Intensivists high-five when a patient leaves the unit alive, but are largely ignorant about what happens when (or if) he leaves the hospital.
Quality of Life
We and our patients would both benefit from a better system to prospectively determine whether what we do will get someone out alive with a quality of life he would want. One such proposed scale (the HHHHHMM Quality of Life; see table) has seven metrics with a score of 1-10 for each. A total score of more than 35 is deemed an acceptable quality of life. The problem is that this scale is actually for dogs. Vets seem to be pretty good at this sort of thing. We're not.
We systemically overestimate the benefits of things that we do and underestimate the harm of our interventions. Doctors endemically exhibit an optimism bias. One study described patients in a hospice who asked their palliative care physician how long they had to live. There was a massive variation in prediction, almost 10-fold in some cases. (JAMA Oncol. 2016;2:1421; http://bit.ly/2KbpWcl.) But the interesting part was that the variation was correlated with how long the doctor had known the patient. The longer he had, the more likely he was to assume that his patient was going to live a lot longer than he actually did.
When a doctor says, “You are dying. We can give you chemotherapy that may prolong your life, but you're still going to die,” what the patient hears is often something quite different. He is informed not so much by what the doctor says, but what his perception of medicine (often viewed through popular culture) tells him. Media reports on people who say, “The doctor told me I had two minutes to live, and I've just run my 20th marathon” vastly outnumber those where the doctor was right.
The breathless reporting of the “next big thing” also makes it sound like the cure for cancer is only weeks away. This ongoing process informs the disconnect between what the doctor may say and what the patient may actually hear. Consider an awesome paper from the New England Journal of Medicine that found that patients with advanced metastatic lung cancer who received oncology care plus palliative care lived longer than those who received only the former; in this case, palliative care actually prolonged their lives and with better quality. (2010;363:733; http://bit.ly/2G1ld8R.)
In this consideration of making dying better, we should also reflect on how all this affects the surviving family. You might think doing more would be better. An observational study looking at patients who received “life-sustaining” interventions as they died (quotation marks used for irony) found that the odds ratio for significant depression was 1.5 times higher in the family members of the patients who received more invasive treatment. (J Pain Symptom Manage. 2017;53:178; http://bit.ly/2ORP7PU.)
Not Fun for Them
Having considered this from the perspective of the doctor, the patient, and his family, I want to turn to someone we don't like to think about—the health economist. You don't hear much about money in health care, or at least doctors in socialized medical systems don't. Many clinicians would agree that some doctors are wasteful, and should be limited in what they can spend on patients. But many fewer would agree with the statement, “I should be limited in the amount of money I can spend on my patients.”
I suggest that doctors should not be allowed to spend unlimited health care dollars on their patients because we're conflicted. We want the best for our patients, and the best often costs more money. As we tick off the list of diseases we can ameliorate and the organs we can support and as life expectancy continues to rise, the rates of dementia are escalating. Our brain is the last organ left to fail. Doing everything is not financially sustainable for any health care system.
This leads to one of my favorite aphorisms, from Dr. Will Cairns, an Australian palliative care physician: “Two weeks in the ICU will save you one hour of difficult conversation.” We train all doctors to perform CPR. We do not train them all to have conversations about not performing CPR. And I believe that is wrong. We do a lot of things to patients that are fun for us but not for them. We love ECMO, CPR, and helicopters, and we really love ketamine.
We don't like, however, talking about death because it's difficult. Maybe we should consider how we can make dying great again. Think about how you can have conversations with people who are critically unwell and about whether doing everything is actually the right thing to do.
The National Public Radio journalist Scott Simon tried to do this. He live-tweeted from his mother's bedside as she died because he wanted to bring public attention to what happens when people die. Give your patients the death you would want. If you can't save their lives, save their deaths. Stop doing things that are not going to save a life but prolong a death, and ask yourself if what you want to do is in your patients' best interest—and ultimately, yours.
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Dr. Psiridesis an intensivist in the Intensive Care Unit at Wellington Regional Hospital in New Zealand, who in his spare time builds websites and designs logos for Wellington ICU's research department. He has been involved in the design and implementation of Rapid Response Systems in different hospitals in different countries, and is the clinical lead for the New Zealand Health Quality & Safety Commission's national Deteriorating Patient program. Follow him on Twitter @psirides. This article was first presented as a talk at DAS SMACC. Find a video and slides from his presentation athttp://bit.ly/2UkHBCU.Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.