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.
Dr Murray,
I am curious if the cancer or illness you allude to, which you personally will not seek treatment for, only refers to terminal stages of the disease? The decision of whether or not to pursue chemotherapy is often a very difficult decision for patients and their family where there is a chance of recovery (or recurrence, as the case may be) no matter how small. I fear that depicting it as a choice of ‘quantity’ vs. ‘quality’ may be over-simplifying what is in fact, a very complex matter. Also, it is quite possible that someone afflicted with metastatic cancer suffers a great deal of pain and mental disorientation for a prolonged period (instead of gently ‘slipping away’) towards the end, whether or not they have opted to receive medication for their disease.
Thank you for a very candid and insightful article, I look forward to your response.
I find your article not only eloquent, but moving. I wish more MDs would have this kind of candidness and open-mindedness. I don’t find this to often be the case.
The closest I have ever been to a terminal illness was being by the side of my best friend who was enduring treatment for an advanced type of breast cancer. Since she had no family here, and her husband was a bit “out to lunch,” I was basically her main caretaker as far as chemo, radiation; etc.
I felt that she was “forced” by her oncologist to follow through with the entire treatment. I don’t think I would ever be able to go through all that. I think that patients have rights and I wish that as much as we talk about the rights of the unborn, we would have a dialogue in this country about the choices patients should be able to make even if they decide to follow a course of treatment and then choose something different.
An uncle of mine (husband of an aunt) went through torture such as is described. He was in his 80s, but they were “sure” he would survive double bypass heart surgery. He did, but only for a few days.
Please, doctors, share the word. You are trusted. You are believed.
I’m not looking forward to screaming in pain with my last breath, but I know there are ways to relieve pain and maintain a degree of comfort even for the dying. That should be our first choice. All of us.
Thank you so much.
I found it “interesting” that while I was provided with some forms for a Living Will/Advance Directives/etc. at my hospital the last time I was there & asked for them, nobody was willing to witness sameor otherwise help me fill it out or file it anywhere. Perhaps it was just some bureaucratic/legalistic rigamarole, perhaps they didn’t want to “help” as a cost/time&motion/saving measure as has been hinted (or maybe even revenue producing device/rule). Seems we have a long way to go here.
Thank you for this article. I have Stage IV cancer and have been updating my advanced directive. My family has not understood why I am going to refuse certain treatments and why I have put NO CODE. My husband read this article and now understands my feelings.
true quality of life is very important which should go along with the quantity.The last days of my mother was so painful that she was bed ridden for more than one and half due to untreatable neuro complications.The worst part that her cognizance,speech and memory were intact which made her sufferings worse.She was literally pleading for an abrupt end but i postponed the same extending her agony for the very reason that i did not want her to part coz ”she
was my mom”Sometimes relationship overcomes reality.
Rachel, you correctly say that these things are generally complex, when we are talking about active treatment of illnesses. I think that for physicians, our experiences help us to understand the complexities. For the average person, expert guidance is critical. I think that cancer is actually less of a problem than some of the degenerative illnesses that wear a person down, in conjunction with age. The most common problems are where a person’s body is simply worn out. All we are doing is buying time, and often that is at a terrible cost to the person.
I strongly support active treatment of problems that have some reasonable chance of restoring a person to a quality life.
It is precisely this thoughtful approach to death that gives rise to the idea of “death panels.” The politics of death are such that people are encouraged to be as fearful of dying as they are of so many other things they don’t understand. But, rather than encourage understanding and compassion, we have politicians talk about “euthanizing the masses” and the “evil” of assisted suicide. We even have a GOP candidate for president who lies about Holland’s end of life care programs just so he can make points with a few of his unthinking followers. So many Americans are too lazy to think for themselves and let others shape their morals while stripping their innate compassion. Dying is unavoidable. Why do we try so hard to avoid talking about it? Why do we try so hard to make it a fearful experience? Why do we try so hard to find drugs to extend life without regard to the quality of that life?
http://9pillsonline.com/
Thank you so much for this insightful article. I was given the honour of ensuring my mother’s personal health care wishes were carried out. She was a nurse. I know that even in her life, she was watching me from above during those last weeks of her life as she lay there dependent on me to be her mouth. She had an advanced directive which spelled everything out. No tubes, no heroic measures. Although she was too unstable to move to a palliative care hospital, and I could not care for her at home, not only did I fight to ensure her every wish was carried out, but also that she be declared palliative so she could be pain free. It was not an easy fight, but a necessary one. During a lucid moment she thanked me. She passed peacefully, she was content. I am not a doctor or a nurse, but I did learn that if you, in the profession, know not to fight such a battle, why would I? I now volunteer in palliative care. Thank you Dr. for your words.
Thanks for this great article. The biggest challenge is start talking about “death”. It’s not ppl are fear about but uncertainty surrounding it. Also ineffective training among physician and their discomfort in discussing end of life. Nobody is 100% sure what going to happen but still majority of physician know what gona happen but still they don’t tell family about that. Cultural as well their own belief play a major role. Currently more than 60% of ppl in USA died in hospital. Dignity of a person, the most imp things for lots of ppl are lost during end of life.
Thank you for this article. I think it is important to differentiate between no resuscitation and compassionate resuscitation. My mother had been diagnosed with non small cell lung cancer. We questioned the diagnosis for a number of reasons. She had removed her DNR because she was experiencing some improvements and had hope for recovery. In a very sudden turn of events, on a day that oxycontin had been forgotten by her caregivers, she began gasping for breath and the nurses and hospitalists had to be FORCED to intubate her.
They said that because she had lung cancer, she should let go. They wanted her to die, helplessly turning blue, gasping for breath. I witnessed this, standing by her side. In the 48 hours that she was intubated, she was conscious. She was able accept and to come to terms with her impending death, receive several religious sacraments of the sick, said good bye to her family and removed the intubation. She was able to die in dignity, with some sedation. She was comfortable and surrounded by family. Kind and compassionate dying, as opposed to an ugly desperate event. There can be a difference.
Terrific article, very thought-provoking. You have done a great service by sharing your experience. Thank you so much.
This article is great. Other professions often will not apply to themselves what they sell to their clients. My Mother and Father both died with medical issues, however, they passed on peacefully without the application of today’s medical solutions. My eldest son died in severe agony as a result of a doctor’s decision to operate in an effort to prolong his life. Which do I choose? You be the judge.
I consider this the best synopsis I have ever read on this subject of end of life care, and wish it were a mandatory read for every adult in America. Please take the time to go through it. Bear in mind that in America, in deference to almost any other western industrialized nation, we spend the vast majority of our healthcare dollars in end of life treatments that are for the most part ineffective in significantly sustaining life and which often lead to increased suffering.
I have seen statistics from reliable sources showing that we spend 90% of Medicare dollars on 10% of Medicare recipients, and that 90% of that is spent in the last three months of life. Oh what wonderful things we could offer at a much lower total price if this trend could be reversed. While America is often cited as spending many times per capita more than these otherwise comparable countries, the graphs documenting the expenditures don’t become divergent until after age 52, and don’t become widely different until after retirement age. Most other civilizations at that point switch to supportive care for their elderly, rather than cutting edge technologies like we do.
Decisions on these issues are going to have to be addressed by the American public soon, or we will bankrupt ourselves with medical expense without having any healthier population to show for it. Bear in mind these decisions need to be voluntary on the part of families and individuals after careful detailed counseling, never something imposed by governmental regulations, or so called “death panels.” As the old country song says, we say we “all want to go to heaven, but nobody wants to go right now.” We need to know when to let nature take its course. Withholding or terminating hopeless life support is not “playing God” – using it is!
Mark
Thank you for your courage. Beth here from middlescapes. I am currently assisting my mom, a 90 year old WWII veteran, in her dream to die at home where she feels comfortable and safe. It isn’t always easy but it sure feels right. It is wonderful to know there is so much support for sensible acts of kindness regarding the inevitable end of life.
Maybe we need doctors to lie in way, that 5% to 15% happened because of the patients were willing to fight against the odds. The more people that fight, the more people now can be a blessing to future generations, maybe even their own decedents with the same genetic predisposition.
Sadly, years ago I watched my father and younger brother ‘rot’ in convalescent care.. I knew then that I did not want to go that way.. A few years back when the Terri Schiavo debacle was going on in Florida, I went and got ‘Do Not Resuscitate’ tattooed in red letters on my chest above my heart. About 2 months ago I had an arterial blockage and had to go in hospital for a stent. I was surprised and pleased about the way most all of the hospital staff I encountered accepted my tattoo and choice, from the Cardiologist on down.. After a brief ‘are you sure’ conversation with the Cardiologist he ordered a DNR bracelet to wear along with my hospital ID bracelet.. I told them all, ‘If you even think you’re going to resuscitate a vegetable, let me go!”
My commendation to Dr Ken Murray for his excellent article which was reprinted in the current issue of Utne Reader..
Great Read… and food for thought.
Just…thank you. Beautifully done.
I am a nurse and my own mother died 4 months ago at the ripe old age of 86 of a glioblastoma. The tumor was an incidental finding when my sister and I (both nurses) asked the Primary Care Physician to please do a carotid study because our 86 year old Mom who was sharp as a tack was beginning to have bouts of memory loss. When we called the PCP office three weeks later to get results (PCP was on vacation) the office advised us of “critical results of 90% blockage in her left carotid artery”. We immediately went to see a vascular surgeon who was more concerned about the “tumor” in her brain. The vascular surgeon arranged for an immediate MRI with contrast and assisted us in seeing a neurosurgeon the next morning. When Mom learned of her diagnosis she was in denial but also refused surgery. She was given three months to live without any intervention and she continued to live a full and active life including bowling and playing Bingo up to the week before her death. She collapsed on a Thursday getting ready for bowling and fell into a coma, dying peacefully three days later (exactly 30 days after her diagnosis). I was able to support her decision because I knew that an 86 year old with a blocked carotid artery would likely die of other complications had we moved forward with surgery. She died as she lived; with Dignity. Thank you for your very touching article. I will be sharing with my colleagues.
Though Dr. Murray didn’t include it, I would bet that many doctors have access to the medications, used in Oregon and Washington, that could hasten the dying process peacefully and with dignity. Unfortunately the rest of us do not have these civilized death with dignity laws available but can access information and support for a peaceful death– in our own homes — through the not-for-profit, volunteer organization, the Final Exit Network (www.finalexitnetwork.org). Refusing treatment may not be available to everyone as an option but there is no prohibition against hastening one’s own death when suffering becomes intolerable but it is important to know how to do it and have trained guides at the bedside when it happens.
I would bet that doctors also have access to the medication that can provide a peaceful death, as terminally ill people in Oregon and Washington have under their Death with Dignity laws. For those of us who don’t have that access the not-for-profit, volunteer organization, Final Exit Network, can provide information and support, at the bedside, to its members with severe chronic or terminal illnesses who find their suffering unbearable (www.finalexitnetwork.org).