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.
*Photo courtesy of patrick.ward04.
Like many other respondents, I’m interested in any data on physicians own EOL choices. Haven’t found anything in the literature, but perhaps I’m using the wrong keywords. My email:
lisamull@aol.com
Thanks for this blog!
Thanks for this article. All of us who treat patients can relate similar stories- of a family that refused to let a loved one go, only prolonging their suffering. End of life decision-making should be mandatory for all- or at least everyone who is on Medicare.
A very thought provoking and appropriate article. I made my Advanced Health Care Directive some 13 years ago, and have explicitly stated that I do not want any Heroic life saving measures done to me. I want to go peacefully and possibly painfree….
A great blog and article which perhaps maybe of our colleague physicians should read. While I did my ICU rotation I know for a fact that all our Consultant doctors on the unit told us the juniors that they would refuse going on a ventilator or having CPR unless a known reversible reason. Very inspiring article and thank you for it.
I want to “go gently” too! Compassion and Choices (www.compassionandchoices.org) continues to confront the end of life issue. Their explanation of the Voluntarily Stopping Eating and Drinking (VSED)process bears investigation and consideration for achieving an end of life in a peaceful and dignifies manner. As discussed by Alexander Onopchenko on 1/21/12, “life is a 100% fatal condition” that we need to recognize and accept.
JWFoster says:
“In King County, Washington State, the ‘save’ rate for witnessed prehospital cardiac arrest is close to 50% – that’s walk-out-of-hospital alive.”
I keep seeing people cite such numbers, without any reference to authoritative believable evidence.
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Circulation. 2007 Dec 18;116(25):2900-7. Epub 2007 Dec 10.
Effectiveness of bystander-initiated cardiac-only resuscitation for patients with out-of-hospital cardiac arrest.
“the cardiac-only resuscitation yielded a higher rate of 1-year survival with favorable neurological outcome than no bystander CPR (4.3% versus 2.5%), and conventional CPR showed similar effectiveness (4.1%).”
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Curr Opin Crit Care. 2011 Jun;17(3):219-24.
Improving bystander cardiopulmonary resuscitation.
Bradley SM, Rea TD.
SourceDivision of Emergency Medical Services, Public Health – Seattle & King County and University of Washington, Seattle, Washington, USA.
“Summary estimates indicate that bystander cardiopulmonary resuscitation (CPR) can improve the chances of out-of-hospital cardiac arrest survival two-fold to three-fold.”
Are you advocating that people with no CPR survive at a 25% rate, as implied by this? Surely not. More likely 4% to 8-12% range, which a ton of studies would support, as does this study. But that is NOT walking out of the hospital.
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Circulation. 2001 Nov 20;104(21):2513-6.
Dispatcher-assisted cardiopulmonary resuscitation and survival in cardiac arrest.
Rea TD, Eisenberg MS, Culley LL, Becker L.
SourcePublic Health, Seattle King County, Department of Medicine, University of Washington, Seattle, USA. rea123@u.washington.edu
“Using no bystander CPR as the reference group, the odds ratio of survival was 1.45 for dispatcher-assisted bystander CPR and 1.69 for bystander CPR without dispatcher assistance.”
Translated into english, if you have CPR, you have about 1-1/2 times the chance of survival if you don’t.
This was from Kings County
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Circ Cardiovasc Qual Outcomes. 2010 Jan;3(1):63-81. Epub 2009 Nov 10.
Predictors of survival from out-of-hospital cardiac arrest: a systematic review and meta-analysis.
“Data were extracted from 79 studies involving 142,740 patients.”
“The aggregate survival rate of Out-of-Hospital-Cardiac-Arrest (7.6%) has not significantly changed in almost 3 decades.”
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Perhaps you have access to more secret information on the “miracle in seattle”, but it appears to be a secret to the doctors practicing and publishing there, too.
Hearing this message coming from a doctor, I feel compelled to sent my thoughts of gratitude and admiration. Thank you for the truth. I want to die like a doctor. I’ve seen the miracles of modern medicine as well as the horrors created by over treatment. It’s so difficult to know when to turn off the intervention. I will feel stronger about my conviction that in old age, less can be more.
How right this doctor is. Patients go kicking and screaming and refusing to let go, which makes their deaths a very costly affair indeed. Doctors go calmly. Never mind that a horrible nurse almost ruined it by reporting this good doctor for letting another doctor go calmly. Nurses are vile, they know nothing about medical science and they are lacking in compassion. Doctors are soooo good. Better than nurses. Better than patients. Better than anyone else. I am damn sure that if a life-prolonging treatment costing millions of dollars were to be made available with good quality of life results, then any human with the capacity to afford it (especially doctors) would jump on it. Doctors are more likely to afford it than most of their patients, who will post undignified, vile comments and ruin the serenity of this blog. Like I just did.
so am I to understand that with out-of-hospital cardiac arrest – its best to do “nothing”? What would you suggest a partner do if one witnesses their loved one experiencing an attack?
wow . a chilling read . I think I will get a “no code” tattoo, now .
I am a retired family physician. I found counseling patients and families about end of life care very rewarding. And I started this counseling when they were very young: “You could have a car accident tomorrow, even though you are healthy today. if you are unable to speak for yourself and you are unable to feed yourself and on a vent, how long do you want the hospital to artificially breathe for you and artificially feed you?” Usually the patient would think carefully and would definitely want treatment only as long as there was some reasonable hope that he/she would recover the function of speech and self-feeding.
If the medical community were allowed to medicate terminal patients appropriately as determined by the *patient* and the physician, and not the DEA, you’d see a lot of these end of life decisions changes.
What kind of idiot dies in agony if they don’t take the treatment, where as if they take the useless treatment, they get the strongest pain meds they need? Blame government interference in medical decisions.
Uma, your comments only reflect upon you, not anyone else. My experience is that nurses are generally better than almost anyone, certainly better than me. But I’ll say that most doctors are better than most people think, and nurses walk on water, in my opinion.
Lydia, in the case of a loved one going down, CPR is what to do. It is the best we have, it is only unfortunate that in some circumstances, it is given to people to think that it represents great hope of success.
Ralph, trust me and the 100+ doctors that have posted, when we tell you that no gov’t agencies are involved in any way in discussions between patients and physicians. I have never had any contact regarding treatment by the DEA, ever.
Thanks all for the comments!
I have chosen the non-medical route and was delighted with this article’s support of my viewpoint. I have written my inspiring story at pesha.com. and how I have brought out my first DVD album and just about to bring out my first novel in my early 70′s. It helps to have goals. I am also trying to keep off pain killers as long but at times, particularly at night, that is a very difficult decision. I find singing helps when it is the terrible pain. Pesha
Dear Dr. Murray, Thank you. The subjects you have referred to are so far reaching in the current scenario that I am almost wordless. But I think we perfectly understand each other without words. You are welcome to India anytime.
Thankyou for an honest and truthful article. I am taking a copy to my doctor when I return in March following three surgical procedures and two years of chemo – I have already said no more, but my doctors seem to think I don’t mean it !
It’s too bad that a certain politican running for the presidency brought up the straw man of “death panels” when all that was suggested was having intelligent conversations about EOL care. Apprently, like the ridiculous Schiavo situation, people who know little or nothing about particular partients–or even medicine–will try to control such situations according to their distorted beliefs. Thank you for a good article to help redress the balance.
Bravo to Dr Murray for telling it like it is. How I wish there were more like him. My “health insurance” is faith, clean food and water, exercise, rest and laughter. Think of what we could accomplish if millions of lives and billions of dollars were not being squandered on this evil system of creating ill health, masking its symptoms with drugs while creating new problems requiring more drugs and procedures and so on unto death. I honestly cannot fathom why the system is still in existence in its present state.
My dad read part of this article after being given the news that his bladder cancer has spread to his lungs and it is helping him to make decisions that are difficult for all of us. He has taken many positives from it. He said he would like to write to dr murray to thank him for this.
Thanks for this blog. My Mom was a Nurse and was very firm that she wanted to go in peace. She also had all the proper paperwork for that to happen. When she was 84 it was her time. She grew very weak and was admitted to the hospital with a diagnose of cancer. I believe that she knew but did not let on until she was so weak that she wanted the support of the hospital. She went into a coma like state in a few days but I could tell that she was in pain. I asked the nurses if they could up the pain meds which they agreed she seemed to need but they said the doctors had to up the order. It took some perseverance but when I finally got a doctor and he told me that more pain meds might kill her! I laughed at him as I asked if she was not going to die anyways. He did up the order and she died peacefully in her sleep as she had wanted to do.
To me it is not about costs, it is about our dignity as human beings and the recognition that there is a time to pass from this earth.
I worked as a critical care nurse for approximately 16 yrs. I love critical care and being able to save lives with “drips” and advanced knowledge. I moved on to “long term acute care” patients and found out quickly that some times “life” isn’t meant to be “long term”. This a particularly important article for any critical care nurse or even LTAC nurse to read. I’ve seldom seen it so adequately articulately demonstrated and appreciate the efforts of the author. Many critical care nurses suffer from post traumatic stress syndrome and don’t know it. It’s very difficult for someone who actually cares to watch and feel the pain of patients and families as they enter the end stages of life – it should be with dignity and not with desperate pain.