How Do you Want to Die?

Via Zite I found the article How Doctors Die by Ken Murray and was surprised to find it one of the best I’ve read on the issue of end-of-life care. The context is that of how Doctors typically forgo extreme measures in the face of terminal diagnoses, and often reject the type of care we routinely provide to our patients as “not for us”. While the article lacks hard data on the prevalence of these attitudes or behaviors, I have to say this viewpoint is consistent my experience of learning my colleague’s beliefs and how I now personally feel about ICU care . And I’m someone who is interested in trauma and critical care as a career…

Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds–from 5 percent to 15 percent–albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.

It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.

Significantly, Murray discusses what “doing everything” can mean. Sadly, most people equate caring for their family member with asking for maximum care when they are sick or dying, but doctors know, and poorly communicate, that maximal care is often painful, expensive, and too often futile.

Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.

To administer medical care that makes people suffer is anguishing. Physicians are trained to gather information without revealing any of their own feelings, but in private, among fellow doctors, they’ll vent. “How can anyone do that to their family members?” they’ll ask. I suspect it’s one reason physicians have higher rates of alcohol abuse and depression than professionals in most other fields. I know it’s one reason I stopped participating in hospital care for the last 10 years of my practice.

This situation of futile care is sometimes referenced with some some gallows humor as the chee chee. Why are we unable to communicate to patients that often the treatments that we can provide aren’t something we’d chose for ourselves or for those we love?

Murray blames everybody involved:

How has it come to this–that doctors administer so much care that they wouldn’t want for themselves? The simple, or not-so-simple, answer is this: patients, doctors, and the system.

To see how patients play a role, imagine a scenario in which someone has lost consciousness and been admitted to an emergency room. As is so often the case, no one has made a plan for this situation, and shocked and scared family members find themselves caught up in a maze of choices. They’re overwhelmed. When doctors ask if they want “everything” done, they answer yes. Then the nightmare begins. Sometimes, a family really means “do everything,” but often they just mean “do everything that’s reasonable.” The problem is that they may not know what’s reasonable, nor, in their confusion and sorrow, will they ask about it or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether it is reasonable or not.

This isn’t entirely fair to the patients because the major reason they make this decision in these circumstances is that they are totally ignorant of the implications of their choice, and we as doctors, and in general as a society, fail to show people what the end of life looks like with maximal interventions. Murray is right, but this is more our failure to communicate realistic expectations, and frankly the loss of paternalism in medical care to protect patients from the good intentions of their family. It used to be the doctor wouldn’t ofter the choice if he or she felt it was futile, now patients are given choices, endless choices. And while it’s certainly a practice more respectful of patient and family autonomy, in these circumstances it may result in worse outcomes for the patient as doctors may feel that any advocacy for the patient may smack of paternalism.

These situations put us in a very difficult position, as ICU or critical care docs, we’ve often only just met these patients and their families.

The trouble is that even doctors who hate to administer futile care must find a way to address the wishes of patients and families. Imagine, once again, the emergency room with those grieving, possibly hysterical, family members. They do not know the doctor. Establishing trust and confidence under such circumstances is a very delicate thing. People are prepared to think the doctor is acting out of base motives, trying to save time, or money, or effort, especially if the doctor is advising against further treatment.

Murray’s style for dealing with this actually comes off as slightly paternalistic, but I’m not sure I disagree with it:

When I faced circumstances involving end-of-life choices, I adopted the approach of laying out only the options that I thought were reasonable (as I would in any situation) as early in the process as possible. When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly. If patients or families still insisted on treatments I considered pointless or harmful, I would offer to transfer their care to another doctor or hospital.

Not many doctors would actually go so far as to transfer a patient over disagreements with a family over futility. That’s actually pretty brave. Most would likely just buckle under, follow the family’s requests, and try to bring up the discussion again once each subsequent effort has failed. This has been my general experience with ICU care.

I really like this article but I think more than just patients and doctors are at fault. Our society sucks at dealing with death and dying. In our mass media you don’t hear stories about how people die with dignity or die in hospice, you hear about the miracle cures, the people that come out of the comas, and, due to medicine’s desire to promote itself, examples where our most aggressive care has been most successful. It’s like how you only hear about lottery winners, if you devoted the same amount of TV time to every loser, no one would play the lottery.

There are three things I would like to communicate to an audience interested in this topic and I wish people as a whole understood.

First, “doing everything” is not pretty. I think there are certainly instances in which families should advocate doing everything for their loved one but it must come with a educated cost-benefit analysis. For instance, consider a 20-year-old with multiple injuries from a motor vehicle collision, with a head injury, now on a ventilator, low presenting glasgow-coma motor score, and minimally responsive. This is a patient I would encourage a family to give every opportunity to heal and recover, even if that means placing central lines, keeping him on a ventilator, catheterizing the bladder, placing rectal tubes, total parenteral nutrition, and pursuing aggressive therapies when there inevitably are ICU complications such as line infections, pneumonia, sepsis, and multi-organ system failure. Younger people heal, their trauma mortality is quite low, and they also have a many, many more years of productive life if you can help them heal.

Now consider an 80-year-old with similar injuries including a head injury, now on a ventilator, low presenting GCS motor, and minimally responsive. Would you treat them the same? The family loves grandpa, they want him back, they ask that you do everything. However, the mortality of the elderly in trauma is dismal, especially as the severity of injury increases, and their predicted mortality may be as high as 100% at ages > 75 with high (> 50) injury severity scores. A head injury in an older person carries three times the mortality. Every other complication is more likely, including deep venous thrombosis, myocardial infarction, renal failure, sepsis, pneumonia, multi-system organ failure, etc. Meanwhile the patient will have every orifice filled with a catheter or tube, will require invasive procedures like central lines, tracheotomy to tolerate the ventilator, chest tubes to drain the inevitable effusions, dialysis catheters for hemodialysis, etc. Is it ageism to insist a different evaluation of the needs of this patient, or is it compassionate to consider the amount of suffering that will be endured for a vanishingly small chance of survival? If the family asks we will perform all these actions to provide maximal care, but what this article is trying to communicate is that if we as doctors were offered this care for ourselves we would refuse it. And how can we routinely go about providing care that we would never chose for ourselves? It’s because we’ve failed to communicate the indignity and horror that is doing everything. If it were for an 80% chance of survival in a 20 year old it might be justifiable, but for a 2% chance of survival in an 80-year old? With an extremely low probability of the individual ever returning to their prior quality of life? For us that is no choice at all, yet this option is frequently chosen, with the best of intentions, by the families of these patients.

Second, paternalism in medicine was extreme and bad, but in situations like these we’ve replaced it with an excess of choice, which may be worse. We ask patients and their families to make decisions based on information even an expert would have difficulty processing, and worse often offer a menu of care items . People become paralyzed from choice when confronted with too many cereal options, how can we possibly expect them to make good decisions, with so many options, while they are concurrently in emotional crisis? We’re not going to go back to being paternalistic jerks, but we should acknowledge that doctors are doctors because they’re experienced with situations like these, and we have to take a more forceful role in end of life decisions than just presenting options and hoping for the best. I like Dr. Murray’s approach, it offers choice, but with a healthy dose of informed opinion as well.

Third, please, please, please, please, please make a living will, give it to your doctor, communicate your wishes to your family, whatever they may be. If you don’t want this stuff done, make it very clear, and if you do? Well, we can’t stop you from being nuts, but at least it was your choice and not the choice of the system or your family trying to figure out your wishes after the fact. It’s a kindness to your family too, to make it clear what you want so that they don’t have to agonize over whether or not they’ve done the right thing.

And as for me? How do I want to die? Provided it’s a good long time from now I like the way Murray puts it:

If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors.

Comments

  1. #1 Derek in DC
    January 13, 2012

    Honestly, if I could see the end coming, I’d like to say, “Well, I’m toast, but I’d be willing to be a human guinea pig for any experimental cures you’s like to try (as long as I don’t have to pay for them).” I realize it could lead to some… discomfort, but if it might yield any useful information that scientists could use later, it’s certainly something I’d consider. But if I (or my family) were going to get charged for the treatments, well, I did sign up to be an organ donor.

    Office of Human Subjects Research: http://ohsr.od.nih.gov/

  2. #2 Thisbe
    January 13, 2012

    Thinking about this issue makes me SO glad to perform medicine on animals instead of people. We can always offer death with dignity, and people are never startled or horrified to consider it.

  3. #3 Tony Mach
    January 13, 2012

    You bemoan the “loss of paternalism”? So I take it that humanism and enlightenment have been officially declared deceased – enlightenment is dead, long live fatalism. Yes, the common people are just too stupid and any attempts of teaching them are doomed to fail.

    /sarc

    I just think you mistake the humanity with the deniers and cranks you seem to deal with all the time with.

  4. #4 Tony Mach
    January 13, 2012

    And bonus points for mixing up the topic of people who are still able to make an decision with people who aren’t.

    There is a German film called “Ich klage an!” (“I accuse!”) that makes the same mixup. A black and white classic from 1941, I just read a lengthy article on that movie which quite strongly resonated with me (the article, not the movie). Anyone who wants to read it in German, I recommend to search for “Telepolis” and “Ich klage an”. Granted, the agenda of the movie was a bit different than yours – but that does not absolve you to treat that topic with a bit more care.

  5. #5 Tony Mach
    January 13, 2012

    Just one more note: Who wants to read the article should look for “Blick in den Abgrund” and “Es wird ein Signal, ein Weckruf sein!”.

  6. #6 MarkH
    January 13, 2012

    Hey Tony, read for comprehension, not just to erect straw men.

    I wrote, “Second, paternalism in medicine was extreme and bad, but in situations like these we’ve replaced it with an excess of choice, which may be worse.”

    Basically, I said here was one instance in which paternalism may have saved patients pain and anguish. Paternalism in medicine in the 50s and 60s was so extreme that doctors wouldn’t tell patients their diagnoses, offered no alternatives, and made very important decisions for people without consultation with the patient or families. That was bad. However, the opposite is not necessarily a cure. Doctors that don’t offer any input, that act simply as service workers, doing whatever anyone asks are also bad. Think Michael Jackson. You need a balance between patient autonomy and medical expertise and experience. You need to be able to tell people “no”, and that essentially requires you to make the decision for a patient against their wishes , but in their best interest. A patient may ask, “can I have 100 more percocet?” No. “Can I have yet another surgery on my face because my body-dysmorphic disorder tells me it’s still messed up?” No. “Can you put me under with propofol so I can sleep?” No. Is it paternalistic to decide that these things aren’t good for you and we won’t do them? Yes. Is it medically appropriate? Also yes.

    Murray’s balance I thought was right. He offers the options of benefit to the patient, and puts his foot down when his expertise led him to believe treatments are futile or would cause excessive pain, despite the family’s wishes.

    And it’s not that people can’t be taught or learn what they need to know to make a choice. But we know that offering too many choices is paralyzing. We also know that in these situations emotions are going to cloud people’s rational minds. We also know that it takes us over a decade to train and our expertise is of value. Those three things together mean that passively offering options to patients or their families is a disservice.

  7. #7 JustaTech
    January 13, 2012

    Several years ago while visiting my grandmother she made a point, as soon as I walked in the house, of pointing out where she kept her DNR (the fridge and her nightstand). She was in very good health at that time, but she was adamant that she did not want any “heroic” measures taken if she stopped breathing in her sleep or anything else sudden like that.

    It didn’t stop her, about a year later, from having a heart valve replaced (which did require a few hours in the ICU), but it was clear that she had put a lot of thought into her death, and wanted to be sure she went on her own terms as much as possible.

  8. #8 Rob OC
    January 13, 2012

    Mark,

    Thank you for this great post and the link to Ken Murray’s
    article.

    I’ve worked in acute medicine (ICU/Anaesthesia) now for nearly 16 years in Australia.

    Honesty, simple explanations and frequent talks with family and the other treating teams go a long way. The time invested is well worth it in providing good outcomes for all parties.

    As you know, this often means salvaging a dignified death after a period of highly invasive treatment. Sometimes, the limits of what we can do with intensive care need to be demonstrated to a patient’s relatives.

    They need time to process their grief and recognise that
    their loved one isn’t going to get better. We’re treating more people than just the poor person in the bed.

    Sadly, it seems that the limits of medical art and science need to be demonstrated to our non-acute medical colleagues on a regular basis. You’ve probably started your mental list of specialities or specialists who are stubborn, incredibly unrealistic, or both.

    It is a form of medical denialism. Given how it taps into
    fears of death, dying, and challenges the competence of a physician or surgeon, it can be extremely difficult to deal with.

    I have never heard of a case of a patient being transferred to another intensive care unit in response to family demands for further treatment. Second and third opinions can be had, and medical consensus is usually – but not always – obtainable.

    Critical care physicians see a lot of death and dying.
    It is up to us to make sure that appropriate palliative care is provided once effective treatment is no longer possible.

    Sometimes this is the most difficult, but most rewarding aspect of what I do as a physician.

    Rob.
    Longtime reader, first time poster

  9. #9 Stan
    January 13, 2012

    I want to go peacefully in my sleep like my grandfather, not screaming and crying like the passengers in the car with him.

  10. #10 doug l
    January 14, 2012

    OD on euphoric painkillers.

  11. Wow! I had no idea that doctors prefer no treatment. But I suppose they’ve seen the costs of trying to prolong life, and they don’t want to pay that price.

  12. #12 Ken Murray
    January 24, 2012

    The author, here.

    Thanks for the post on this website! Also for the many thoughtful comments.

    Most gratifying is the discussion that is taking place, here and elsewhere, on this important topic.

    MarkH, your interpretation of what I wrote is gracious, and pretty much right on the money.

  13. #13 Tony Mach
    February 4, 2012

    Just thought this might be relevant and insightful to this discussion – and slightly less knee-jerk:

    The Value of Making Treatment Decisions for Oneself
    http://videocast.nih.gov/Summary.asp?file=17089

    Respect for patient autonomy implies that patients should make their own treatment decisions. Yet, in some cases, the steps required to allow patients to make their own decisions pose risks to them. These cases force us to consider how important it is for patients to make their own decisions, and the extent to which the value of making one’s own decisions can be balanced against other values.

    The program, which involves presentation and discussion of an actual case that occurred at the NIH, should be of interest to all individuals involved in clinical care, as well as those interested in important issues in bioethics.

    Presenter: John Park, MD, NINDS

    Discussant: Dan Brock, PhD, Director, Division of Medical Ethics, Harvard Medical School

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