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.