Saturday, January 21, 2012

How Doctors die

All my recent upbeat posts on CLL begs the issue that we will all die. We don't get to choose when or of what we die, but he can chose how we deal with the process.

Just like life.

So a quick break from the nitty gritty of CLL to take a look at the nitty gritty of life and death, whether you do or don't have an "incurable" cancer and whether or not you are a doctor.

The following is a provocative article from Zocalo Public Square, an organization that explores a wide range of current and challenging topics in various forums. Good stuff and worth getting to know. Dr. Murray, the author of this article is a thoughtful assistant clinical professor at USC (where I taught for years as a clinical professor) and has written other articles that you can find at Zocalo Public Square.

How Doctors Die

It’s Not Like the Rest of Us, But It Should Be

by Ken Murray

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.

Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen—that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).

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.

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.

The above scenario is a common one. Feeding into the problem are unrealistic expectations of what doctors can accomplish. Many people think of CPR as a reliable lifesaver when, in fact, the results are usually poor. I’ve had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who’d had no heart troubles (for those who want specifics, he had a “tension pneumothorax”), walked out of the hospital. If a patient suffers from severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal, while the odds of suffering are overwhelming. Poor knowledge and misguided expectations lead to a lot of bad decisions.

But of course it’s not just patients making these things happen. Doctors play an enabling role, too. 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.

Some doctors are stronger communicators than others, and some doctors are more adamant, but the pressures they all face are similar. 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.

Should I have been more forceful at times? I know that some of those transfers still haunt me. One of the patients of whom I was most fond was an attorney from a famous political family. She had severe diabetes and terrible circulation, and, at one point, she developed a painful sore on her foot. Knowing the hazards of hospitals, I did everything I could to keep her from resorting to surgery. Still, she sought out outside experts with whom I had no relationship. Not knowing as much about her as I did, they decided to perform bypass surgery on her chronically clogged blood vessels in both legs. This didn’t restore her circulation, and the surgical wounds wouldn’t heal. Her feet became gangrenous, and she endured bilateral leg amputations. Two weeks later, in the famous medical center in which all this had occurred, she died.

It’s easy to find fault with both doctors and patients in such stories, but in many ways all the parties are simply victims of a larger system that encourages excessive treatment. In some unfortunate cases, doctors use the fee-for-service model to do everything they can, no matter how pointless, to make money. More commonly, though, doctors are fearful of litigation and do whatever they’re asked, with little feedback, to avoid getting in trouble.

Even when the right preparations have been made, the system can still swallow people up. One of my patients was a man named Jack, a 78-year-old who had been ill for years and undergone about 15 major surgical procedures. He explained to me that he never, under any circumstances, wanted to be placed on life support machines again. One Saturday, however, Jack suffered a massive stroke and got admitted to the emergency room unconscious, without his wife. Doctors did everything possible to resuscitate him and put him on life support in the ICU. This was Jack’s worst nightmare. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.

Even with all his wishes documented, Jack hadn’t died as he’d hoped. The system had intervened. One of the nurses, I later found out, even reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it, of course; Jack’s wishes had been spelled out explicitly, and he’d left the paperwork to prove it. But the prospect of a police investigation is terrifying for any physician. I could far more easily have left Jack on life support against his stated wishes, prolonging his life, and his suffering, a few more weeks. I would even have made a little more money, and Medicare would have ended up with an additional $500,000 bill. It’s no wonder many doctors err on the side of overtreatment.

But doctors still don’t over-treat themselves. They see the consequences of this constantly. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures. I was struck to hear on the radio recently that the famous reporter Tom Wicker had “died peacefully at home, surrounded by his family.” Such stories are, thankfully, increasingly common.

Several years ago, my older cousin Torch (born at home by the light of a flashlight—or torch) had a seizure that turned out to be the result of lung cancer that had gone to his brain. I arranged for him to see various specialists, and we learned that with aggressive treatment of his condition, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me.

We spent the next eight months doing a bunch of things that he enjoyed, having fun together like we hadn’t had in decades. We went to Disneyland, his first time. We’d hang out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital foods. He had no serious pain, and he remained high-spirited. One day, he didn’t wake up. He spent the next three days in a coma-like sleep and then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.

Torch was no doctor, but he knew he wanted a life of quality, not just quantity. Don’t most of us? 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.

Ken Murray, MD, is Clinical Assistant Professor of Family Medicine at USC.



Blogger Rick said...

Brian...Dr. Murray's essay perfectly describes my attitude and the reasons behind it. My wife has adopted a similar attitude over the years , having sat at the dinner table or listened while in bed as I related tale after tale of the horrors of "futile care" and the misery it brings not only to the patients who receive it, but also to their unwitting friends and family.

I would add an extension to his thesis, which is that I have come to be a minimalist, avoiding unnecessary tests wherever possible as well as any therapy unlikely to have dramatically more upside than downside.

My attitude is that if you don't want or need to know the answer...don't ask the question. This is why for the 5 years of my disease I have minimized lab tests and other investigations such as BMBs and CT scans. I have, as you know, had several therapies for my CLL and will soon embark on another, but even during all of the treatments to date I worked with my treating physicians to minimize lab tests to those that were essential. I have, as a consequence, not agonized over minimal changes in my CBC, nor crowed over stable metabolic profiles, etc.

My next therapy, as you know, will be in the setting of a clinical trial, so I have no real control over the timing, frequency or depth of testing to be done...this will be a new experience for me.

Many people who discuss their disease on the various forums have an approach very different from mine, and often judge their physicians accordingly. I used to judge them harshly, but I have grown wise enough to realize that they will do as they are wont to do and do not want to hear my commentary.

We physicians have had the opportunity to learn for ourselves what we want. Certainly many physicians share an entirely different attitude. No decision is ever right or wrong, but the benefit of learning and hindsight are useful to all people.

I never had the Chutzpah to do what Dr. Murray, to offer to refer the patient elsewhere when the patient or his family requested what I considered futile end of life care, so my nightmare often grew larger with the aftermath of an individual's end of life plight. I did have more than one patient or relative relate that they wished they had taken my advice, albeit too late. I never gloated, I only winced.

Be well,


January 21, 2012 at 12:21 PM  
Anonymous Rick said...

Very good article, Brian - thank you!

January 21, 2012 at 2:29 PM  
Anonymous Anonymous said...

I'll keep that site to hand - thanks, Brian. Alison.

January 22, 2012 at 5:54 AM  
Anonymous Anonymous said...

Thank you for posting that powerful article!

January 22, 2012 at 9:33 AM  
Blogger Wayne said...

Ken Murray's essay is indeed a powerful reality check on what modern medicine is just not yet capable of delivering and a valuable perspective of how we all should integrate the transition of life into the unknown. Our lives are often collections of anecdotes that justify our reasons for doing what we do and who we are. My Father and Mother belonged to the hemlock society because they did not want the end of their lives to mirror some of their friends who had their lives dragged out in disability and pain.

Five years prior to my Mother's death she was diagnosed with an aortal hernia and was told it could be operated on but with 50/50 risk of death. I remember so well her telling me that she decided to regard her hernia as her "friend" as she felt that it would be fast and she would enjoy what years she had left. It burst one night most likely in her sleep.

Dad was not so lucky as he was diagnosed with bladder cancer at 82. His oncologist was insistant about pursuing treatment with radiation. Dad asked me for my opinion as he was leary of doctors and radiation. I deferred to a nurse I knew who worked with the elderly and her opposite opinion was equally as strong as the oncologist's; "don't do it!" she said she had seen too many people suffer from radiation burns to healthy tissue and always a lowered quality of life for those 80 and older. I passed this on to Dad and it was in sync with his gut feeling and so he passed on all treatment to the verbal abuse from his Onc. He went into hospice after 4 years and lived another 2.5 years. Quality of life was pretty good most of the time for 5 of those years. Pain from urination was pretty bad the last year and a half but coincidently his first cousin had been diagnosed with bladder cancer two years after my Dad and he went immediately into radiation chemo etc. and his wife told my Dad that her husband had not had one good day after treatment and died one and a half years later.

While no legitimate claims can be drawn for not treating bladder cancer from two similar and related men, in this instance it sure bears out the validity of Murray's view.

Hospice, by the way, was the most wonderful and humane support my Dad could have hoped for. They were amazed at the fact he remained alive for two years beyond the expected six months as the guideline calls for with terminal patients.

Thanks for this perspective and the work you are doing.
I think you will be surprised in a good way as to the results from PCI in your upcoming Trial. How long it will last - anyone's guess but I for one am enjoying the ride.


January 26, 2012 at 6:35 PM  
Anonymous Anonymous said...

Since the outcome after CPR is so poor, perhaps we should outlaw it.

Throw those well-meaning do-gooders in the clink! That should do it.

For the person who is brought back to like with a defribulator, who is going to tell that patient they'd be better off dead?

February 22, 2012 at 9:54 AM  

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