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.
Thank you for confirming that the decisions I made with my mother when my Grandmother fell I’ll and passed. After fighting to keep my Dad as long as possible with stage IV pancreatic cancer, learning his mother had it 6 years later almost destroyed me. Preventing her from living out her last ads with a bag and I.V. tubes was so much better. We changed doctors at the last minute when he was angry we didn’t opt for the bag. I said how long will it give her? A month, and the chance for infection and pain? No answer. We all have to die. I hope I get the chance to do so with dignity.
This is a very timely article indeed. I read the piece in the New Old Age Blog of the NYT, and in the interview you, Dr. Murray, spoke of how the practice of medicine has changed. I wonder if you are referring to the profit-model or medical heroism? In any event, I think it is important for people to see that doctors are making a much different decision for themselves than what is provided to most patients.
For some reason, perhaps the way that Medicare reimbursement is structured, procedures are only “successful” if they prolong life – but everyone dies. What about palliative care and hospice referral? I feel that hospitals (not doctors, particularly, but rather the business side of health care) have lost sight of the patient’s needs.
It is hard for me to understand why we spend so much time and money on procedures at the end of life when often there is no chance of improving the quality of the patient’s life. Ask anyone you know if she would like to go to a nursing home later in life – you will hear a resounding “no.” It is not pleasant, to say the least. Even still, we are performing measures that take the patient away from a “natural death.” Nursing homes have become the go-to warehousing system for people who are simply old and suffering from age- and/or illness-related conditions that do not allow them to live alone. To be sure, this is not for the patient, but for us. We are too afraid to let go. In my opinion, the money spent on nursing home care would be much better spent for home health services. This is what the patients want and it is a fraction of the cost of long-term care. The medicalization of dying is a frightening thing.
I hope that with this awareness that seems to be rising among everyone about quality of life, end of life choice, and the reality of nursing home “living,” that we can all make more informed decisions about how we choose to live out the end of our days. Thank you for the wonderful piece.
Several people have commented that they can’t make these kinds of tough decisions in a stressful, emotional moment. I agree. We should not wait until something happens to think and talk about this with our families! I’m 26 and healthy, but I have a living will and have discussed my wishes with my family. I’ve also spoken with my mother about her own preferences (I’d be her designated power of attorney), and I’m prepared to carry them out.
Express and document your wishes for end-of-life care today, and ask your parents, partner, etc. what they’d want you to do if you were in charge of their care! Don’t wait until you find yourself in the moment!
How sensible. To die with ease and not worry about getting an extra day here.
Well done for writing this so others can see another perspective that’s not so aggressive.
… best.
APPLAUSE…APPLAUSE…APPLAUSE…As a R.N. of 30 years in just about every area of hospital nursing I can’t tell you how many times I said I would have, “No intubation” tatooed on the roof of my mouth and “No C.P.R.” on my chest. I give thanks daily for Hospice Care and for Morphine drips. I’m 74 and have a 92 year old mother in Assisted Living. I thought it was totally absurd to have a tree trimming party in the living room of her facility with all these “dying” faces trying to sing Christmas carols when we should have been having a discussion around how best to move into an acceptance of death and dying as part of living and giving ourselves the gift of a peaceful realization of death. I’m sure my mother will hold on and fight with every agonizing breath to her last asking, “What did I do to deserve this?” I will not be proud of her for doing so. My mother-in-law lived to 102. The most the doctor could tell my wife was, “She forgot how to die.” I pray God that I don’t.
These cases your article discusses are all ones where it is pretty clear that the ultimate outcome for the patient is fairly imminent death and it is just a question of how long and how much that patient is willing to undergo to improve his/her odds of a little more time. But what about cases like my father’s? He had congestive heart failure as the result of a heart attack, but did well despite that for 10 years. Then he had a stroke, but had little in the way of residual effects. However, the CHF did continue to progress after the stroke. There were hospitalizations for dehydration, and a bleeding ulcer which successfully resolved those conditions. I worry that instead of treating the dehydration and the ulcer, some might take your blog post to mean that those conditions shouldn’t have been treated at all and my father should just have died instead of going on for another year or so in each case in tolerably good health. At the end, the CHF caused kidney failure and my father opted for hospice care. But I would have hated to see him die from dehydration or a bleeding ulcer one or two years before the CHF progressed to the point where there was no available treatment.
This story is the same here in Canada. I know of 2 doctors who accepted their acute and untreatable situation, and they lived well for the time that was granted them.
There is a vast amount of ignorance among patients regarding the suffering they will endure when taking extraordinary and futile measures to forestall a fatal diagnosis. Christopher Hitchens, an otherwise highly intelligent man, wrote an essay in the December Vanity Fair detailing horrific treatments he endured for esophogeal cancer, without ever seeming to make the connection that he had signed up to be tortured into the grave, sacrificing the peace and tranquility of his last days. It does not require bravery to walk away from these treatments, it requires bravery to endure them if the patient has any clue of what’s in store. They don’t and no one enlightens them. Doctors must do this. Instead, too often they prolong death and suffering rather than extending life. The problem is particularly horrific in regards to children with certain cancers known to be fatal. The parents refuse to stop and the children are powerless in their care. The results are often barbaric and this is something the AMA should address. Please consider writing a book on this subject. And thank you for this article. It’s a great help.
Thank you for this sensitive and insightful article. I am sharing it with my friends and family.
Please add my thanks for this article to the list – and to Paula Span of the NY Times for directing me here.
The woman’s movement brought us choice. Choice allows for abortion. Society has gone along with taking away the life of a yet to be born fetus. And yet we still resist allowing those at the end of life the choice of when to end their lives. Strange. Those with little time are often forced to wait often in agony. Why are the terminally I’ll denied choice?.
Why not allow for dignity to those who are suffering? Dying with dignity.
I thank Ravi Krishnappa for his thoughts.
It might best be put in a context of personal choice though. There is a delicate line between a person being quite recoverable with proper rehabilitative therapy and a person whose life becomes sheer torture if they are forced to go on living.
I’m “elderly” myself and have spoken with many people in my age range who really don’t want to be kept alive no matter what. But there are those who don’t think that way. Some feel they owe agreeing to extreme measures because otherwise they would be denying “the sanctity of life”.
I wouldn’t remove their right to suffer terribly and struggle into Death’s welcoming doors. I might find it horrific that they want to do such a thing but I prefer to leave that choice to them.
Ok. Absolutely! An opportunity to experience points of veiw on allowing the prolongation of death.
opponents of pro-death are rallying to give life as a privilege of only the healthiest; If your illness causes monetary gains to medical insurers then pull the plug. If your in a comatose state let me run you to the light…if you’re going downhill please tie an anvil on quickly… Well guess what beat the life into me…break all my ribs…duck tape my plug…and give me back up generators so no current is lost..but I respect anyones opinion..doctors save lives and or doctors save yourselves…what’s the point of medicine if you waste its benefits… Are you not worthy of it?
A very important and pertinent write up. In my cardiology practice, when an otherwise healthy patient of 87 yrs walks in with a cardiac complaint like angina, I am always happy for such a guy. In my mind I congratulate him for having heart disease (and not cancer, stroke, kidney failure etc). Usually cardiac diseases are “clean” diseases, not much pain, some breathlessness which can be treated, no eating problems etc. And if you are very lucky- sudden death in sleep ! What more you want in life -and death?
The main gist of the problem narrated in the article is about finding -as the Zen people say- “the middle path” and I as a cardiac physician feel privileged to help my patients find that middle way. We have resuscitated many almost “dead” patients alive and done emergency balloon angioplasty procedures and sent them home walking, so all heroics are not bad. Many are, and in drawing that fine line between them lies the art of medicine.
Thank you for this gift to all of us.
I highly recommend a book published in 2010, A BETTER WAY OF DYING, by Jeanne Fitzpatrick, M.D. and Eileen M. Fitzpatrick, J.D.
I’ll just put here the blurb from the book cover, which says it all.
“Advanced directives and living wills have improved our ability to dictate end-of-life care, but even these cannot guarantee us the dignity of a natural death. Designed by two sisters – one a doctor and one a lawyer – who draw on decades of experience, the five-step Compassion Protocol outlined here offers a simple and effective framework for leaving caretakers concrete, unambiguous, and legally binding instructions about your wishes for your last days.”
Thank you for this essay. My family unwittingly robbed one of my grandmothers of a peaceful end by allowing doctors to hospitalize her and give her IV antibiotics for pneumonia when she was 92. She survived the illness – but only in a limited sense: too weak to sit up or to speak, confined to bed, blind and diabetic. She died of pneumonia at 96. Her son, my father, is 75 and has emphysema. He’s has made it very clear that he doesn’t want heroic measures for that disease. I’m his healthcare proxy. But I’ll need the help of a compassionate physician to know when to say “no.” He’s been intubated twice, briefly and with his consent but before I could reach him (he lives almost 2,000 miles away from me), for exacerbations of his emphysema and he’s made it home, worse for the experiences, but still plugging along. I need a doctor’s guidance and support ….
I’ve been an RN for 31 years, mostly in psychiatric and two years in hospice. I often work on an Alzheimer’s unit. The people are end-stage, not “when Mom forgets” but when all adult functioning is gone. People look vacant/terrified/terminally agitated, often violent. Some are DNR, some are not, but no one seems to have the luxury of a heart attack- they slowly fall apart from the dementia and it is a constant struggle to have people accept that their demented loved one has a terminal illness and no quality of life. I hope to see an article addressing the increasing end-of-life issues for elderly demented people.
I also would never ever want extreme treatment, young or old (I am 58) and have left instructions with my lawyer, my health care proxy and anyone who will listen. I agree that most people who have worked in health care have the same feelings. Thank you for the article.
Thank you for this article. After watching various elderly relatives endure ‘heroic medicine’ (one with full knowledge and consent – the others had it forced on them), I am absolutely terrified that at the end of my life, I will fall into the hands of some well meaning doctor who will ensure that I spend my last days? Weeks? In a state of constant agony. I can only pray that your article gains traction so that when I’m elderly, I can be confident that I will receive appropriate and compassionate treatment – right up until the point when it’s time for me to call a halt and prepare for my final journey.
It isn’t always that doctors observe the choices patients and their families have made……I personally had this to deal with almost twenty years ago. My husband, then ten days past his 65th birthday had opted to have surgery for early prostate cancer, (against my wishes I will add) but his doctors allowed him to persuade them even though he was at high rish as a surgical patient due to his medical history of prior heart attack and obesity. He survived the surgery but on the day he was to be discharged, he had cardiac arrest and there was a great deal of poor communication regarding the status of code methods since the attending surgeon had not had a case for a couple of decades and was not up to what was then current processes. To try to shorten this, we had composed our living wills about five years earlier but the instructions were ignored and even though I was aware that there was little chance of survival if a patient is not resusitated in the first six or seven minutes after arrest….instead he was moved to ICU and subjected to many procedures that were futile to begin with and after ten or twelve hours of this I insisted they get our instructions out of the file and go over them with me so that I could have these futile efforts stopped…..that was heart wrenching and I should not have been put in this position…….there was some lame excuse that state regulations gave them the option to continue those efforts to revive a patient……personally I felt it was CYA-ing and still do —- I did not sue although there was probably good cause but I knew how that goes too, insurance has much deeper pockets and cases drag on forever……I do not regret anything except I should have reported the case to the state BMOE……..
ME
I am concerned about the way in which this discussion implies that one should not try medical treatment to stay alive. There is already so much discrimination against the elderly and this approach just reinforces the strong tendency to discount the health issues of the elderly. When my mother became ill with cancer at age 89, the doctor and nurses actually tried to dissuade her from active treatment. These professionals(as opposed to clinical social workers who are actually trained to help people with social/emotional issues) typically do not have the skills to work with patients to make decisions and support the individual’s(and family’s)process.
Also, the artificial separation between active treatment and palliative care that funding sources create, is not in line with what people with terminal illnesses often prefer…the opportunity to obtain treatment while also receiving comfort care. This discussion about “death with dignity” seems to be very “black or white,” whereas dealing with illness, death and dying is rarely a black or white process.
There are a few enlightened people actually creating an environment for people diagnosed with terminal illnesses, in which a community of caretakers, professional and lay, is available to support the individual and family on a journey that can incorporate active medical intervention, pain management and other palliative care that one now finds primarily in a Hospice environment. I do hope we can move away from the kind of moralizing that pushes people to make absolute choices while moving through life, illness, and death.
A clue is in the original question ‘do you want everything done?’ mentioned in the article. A pretty hard question to say ‘no’ to. I agree that better and earlier communication should help to pave the way for dignity, whatever the actual circumstances. But the apparent gap between what doctors can and do allow others to go through compared with what they themselves choose (with their fuller knowledge and observational experience) should mean that they are loudly campaigning, not writing rather self-congratulatory articles about it. Please do more than this!
This is an excellent article. I worked in hospice as a social worker for several years and it was more than enough to convince me of your point of view. I’ll take quality of life over quantity any day. More people need to be aware of what medical interventions actually mean and their potential problems.
The key here is informed consent. Medical professionals, as you’ve pointed out, know what they’re up against, what their options and chances are, and can make an intelligent choice about whether treatment is warranted. Most of us don’t have that background knowledge to bring to bear on an emergency situation. We have to rely on honest counsel from the professionals in front of us, but can also – as you’ve also suggested – do our best to remain calm enough to hear that counsel without prejudice.
Your article is important, and I will be sharing it widely. Thank you.
When the importance of end of life discussions was brought up during the health care legislation process the cry of ‘death panels’ drowned out the voices of reason
Intriguing article on a very complex issue. Certainly with illness that is clearly terminal despite the best treatments it should be an easy decision to not over treat. But usually there is much more grey area then this in these critical care situations.
Many childhood cancers have a very high (and long) remission rate today (some are even curable) because we have worked so hard to “over treat” them in the last couple decades. A process of trial and error has meant life for many, when death was once certain at a young age.
There are no easy answers and no one has a crystal ball. For my part, I try to communicate as often and clearly as possible with my patients and their families in the ICU. To not only respect the wishes of the patient, but to also temper unrealistic expectations with the harsh reality that death comes to all of us. Dignity and respect.
Knowing that orthodox allopathic medicine offers nothing but pain and suffering for those diagnosed with cancer, with a dismal success rate, I, too, would pass on their nostrums. I would instead head straight off to the Burzynsky Clinic. Dr. Burzynsky is despised by the high priests of cancer because the success rate of his non-toxic therapies put them to shame. There are many alternative therapies available to those who seek them. To go home to die seems a somewhat defeatist approach to me. It is based on ignorance of one’s options.
My mother was eventually diagnosed with bladder cancer. She was originally told of the horrors of having a stoma then someone told her about radiotherapy. After 6 months of radiotherapy she was given the all clear. Till the checkup scam (thats not a typo). Palliative care should be given its real name; the drug-selling industry. Mum wasn’t all clear because chemo only deals with symptoms. The cause is never treated because what would be the point of the billions spent in makings drugs? Mum was advised to have chemo. I begged her not to but my family persuaded her that the consultant knew best. I begged her but she said she didn’t have the courage to go against his advise. I took her to the same hospital my friends mother was being treated in. and watched as they pumped steroids into her veins to trick them into taking the poisonous drugs. I had to leave her overnight but left Frank Sinatra and Henry Mancini with her. I picked her up the next day in my open top Wrangler and drove her home with the wind in her hair. She died suddenly alone 4 days later from a heart attack. They forgot to mention that chemo can cause blood clots. She died around 5pm having just made a meal. We found her at 11am the next day. I already knew before I got there and had called the police who broke in and made all the arrangements. They also knew the system. I didn’t. But that was my mothers last lesson to me.
Thank you Ilene, for your comment on the particular horrors of middle and late stage dementia. In our case we fully recognized the terminal nature of my mother’s disease. We helplessly watched her descend into spiteful hostility, agitation and tears. We heard her repeat, “I wish I was dead” and had no comfort to offer. My frequent and heated requests to sedate her were ignored.
She was lucky. She had a stroke after falling and fracturing her pelvis on Christmas day. Because she had been admitted to the hospital after her fall, she was able to receive palliative care in the form of pain medication. She died peacefully at age 93.
I wish there had been some way to ease the horror of her last year as she wept screamed and begged to die.
Thank you for this special article! As a Midwife I learned quite soon to act with the motto: use as less ( intervention) as possible and as much as needed to keep a mother and her baby safe- safe in a physical, emotional and mental way. With a holistic approach in mind we can only hope that trusted physicians will have support when they need to support their patients on their last journey. They should not have to fear litigation, but be able to act in the pure interest of the patient. Let us hope that common sense and empathy will increase again .
I can verify that Dr. Murray’s thoughts reflect experiences widely shared by professionals throughout the medical community.
As radiologists viewing serial chest x-rays of post-surgical ICU patients of advanced age, we followed these helpless patients, intubated, sedated, and hooked up to an array of machines and devices, through their typical post-surgical pulmonary and cardiac complications to death, often following weeks of agony. These were not isolated cases, and we often wondered if these patients, or their next of kin, had been sufficiently aware of the risk for this outcome before consenting to major surgery so late in life.
One of the surgeons responsible for many of these patients liked to opine that the risk-preparedness of the patient was the only variable, as he himself would invariably counsel for radical surgery, no matter the circumstances.
Shortly after retiring, and following several personal calamities, including chemical addiction, he abruptly ended his life by inflicting a gunshot wound to his head. He did, however, avoid the ICU.
My wife and I both have detailed, carefully hand-written “no code”, “do not resuscitate”, “do not send to ICU” directives. We love life, love each other, love our daughter, and when we die, intend to do so in peace and with dignity. We hope no colleague will betray us in our intentions.
Thank you, Dr. Murray, for again opening this so critical discussion after craven zealots and unscrupulous ideologues had so abruptly slammed the door shut with their flagrant demagogy about “death panels” and “not shovel-ready grandmothers”.
Thank you for this wonderful article; it should be required reading for every medical professional in training and along with the 60 Minutes piece featuring Ira Byock should be widely distributed and read. Hopefully the country will mature politicaly to where we can have a mature discussion about improving end of life care in Medicare and other public programs, although the departure of Don Berwick from CMS makes me less optimistic about this happening anytime soon.
I have practiced many years in the ICU and in the hospital caring for very sick patients. I have witnessed a reluctance or unwillingness of the physician team to point out the very limited positive impact of therapies. As noted in the article, there are a variety of reasons for this including personal discomfort with communicating the information. However, I propose that a partial explanation for this lies in physician training. There was been much written about the model of paternalism related to the patient-physician relationship. This is portrayed as a model whereby the doctor tells the patient what is good for them and they meekly submit. This is less than ideal for obvious reasons; however, the pendulum has swung too far the other way. In many instances, the physician now delivers a menu of choices without the proper risk-benefit information such that even the medically sophisticated patient cannot discern the best choice for themselves. In this model, the physician has abdicated their role, their knowledge and their responsibility to work with the individual for a medical solution that is best for them. The many years of physician training should result in an interpreter of medical knowledge and an advisor to patients in the most difficult of times. Hippocrates recognized the need to “prescribe regimens for the good of my patients according to my ability and my judgment”. The duty to utilize “judgment” when compassionately conversing about the known medical risk-benefit and the patient’s desired outcome should not be discarded in the attempt to be less paternalistic. A model that applies the medical knowledge and judgment of the expert with the goals of the patient has the best opportunity for creating meaningful outcomes.
Thanks so very much for this excellent article.
Back in the 1980s I worked as an RN on the MICU at a Harvard teaching hospital. I stayed in health care for some time, but got out of hospitals for 2 main reasons, the first being back troubles, the second that I did not believe in much of what I was compelled to do, like performing CPR on a brittle 93 year-old man with no prospects.
In that environment and in during that period, the teaching imperative and a certain “Why we’ve never tried that but it *might* work!” cynical, disingenuous naivete took sad advantage of patients and family members who were desperate for any glimmer of hope, no matter how hopeless the situation. I felt like I was indeed torturing people.
I would say that the overall situation has improved with the spread and acceptance of legal and and ethical devices like advanced directives that seemed fairly new and strange at that time. However, the situation may only improve on an individual level if someone takes very deliberate care to document their wishes and to enlist family and friends as a body of protectors. So many people still have trouble discussing these issues with people in their supporting groups that they are then subjected to care they never desired when the worst happens.
Having been “in the biz” I feel like I am much better equipped than many folks to ensure that my wishes are respected, but it is still a challenge to get all of the paperwork in place and to make family and friends comfortable with what may be seen as a “pessimistic” attitude. Quite commonly I hear “Oh, if that happened to you (something like lung cancer) you can’t say what you would do.” It’s hard to convince these more “optimistic” people that they are very, very wrong.
And for a lot of people the issue of end-of-life care is inextricably intertwined with personality traits and belief systems, both their own and those of family and friends. Indeed as someone with mild to moderate depression that has been a fact of life since childhood, and someone with beliefs that could variously be called “realistic”, “pragmatic”, “cynical” or “pessimistic”, it can take a lot of work to have my beliefs achieve some credence among more “optimistic” and spiritual relations. And it is a dialogue that I continue to have with myself.
In the end, though, just because I am a somewhat jaded depressive doesn’t mean that I deserved to be tortured in some ICU!
Anyhow, I think your essay is a great help on the “credence” front. I have sent the link to several friends and will soon send it to all of my siblings. Thanks again for this thoughtful work.
What an insightful, thoughtful and important text you wrote! I am sharing it with all my friends and relatives (and that includes my grown-up children). Thank you!
Just read Thanotopsis earlier this evening. This is an appropriate follow up. Well written.
Best thing, in my experience, is to stay away from doctors. Most of them are quacks. From my freshman year of college, it was seventeen years later when a doctor finally diagnosed my heart rhythm issues. The others didn’t believe me, thought I didn’t exercise enough (despite my activity), thought they heard something odd (“oh, never mind”), said I was a sensitive person because I was in the arts, etc. I gave up talking to doctors about it and the one who diagnosed it heard it on his own. My last doctor won’t see me because I currently have no insurance. I am really fed up with their stupid games. When someone ran a red light last February and totaled my car, I refused to go to the emergency despite the recommendation of the first responders. But I didn’t want my car insurance medical used up on a bunch of useless tests. I think I fared just as well doing my own program of physical therapy on myself and seeing a chiropractor. The only point in seeing a doctor was to make sure nothing was broken.
Thank you, thank you, thank you. well written, exactly my feelings. I will send this to all my aging friends, and give a copy to my mom’s nursing home social worker, which is easier that trying to explain why too much is more frightening than too little. One of the most dangerous places for application of unwanted life support is the nursing home – they do not want the stats to reflect a high number of patients dying in home, and are fearful of litigation – and like in hospitals, many staff are really so attuned to prolonging life that they are fearful of allowing death in the door without a fight. Also, fair or not, it carries more weight with some folks as it’s written by a Dr. And I may get a couple of those medallions, too!
A very important question patients and relatives need to ask the doctor is whether he would advise the same treatment should he or his family member be suffering from the same condition (or alternatively, the doctor to sum up his advice in such cases and say whether he would advocate/undergo the same treatment).
I guess in that scenario the problem is pretty much simplified and the decision is easier to take for the family members.
The Vietnam War blessed me with PTSD and exposure to Agent Orange, meaning, in my case, Type II Diabetes. My outside civilian doctors were understanding and thorough. My VA primary care physicians refused to refer me to an in-house neurologist when my legs were falling. She faxed me a note, telling me to see an outside civilian practitioner. My follow-on VA primary, much closer to our home in Crofton, MD, spent six months endeavoring to prove the VA’s decision that I had a cardiomyopathy (an Ejection Fraction of 37) was a bad diagnosis, he kept insisting I had nothing more than a lung problem. After two potential suicide attempts I dropped out of all of the VA medical system, except for my psychiatrist.
I told all my doctors my conclusion: Type II Diabetes would kill me. When, where, and from which specific secondary complications I had no idea. I wanted nothing but pain medication and no heroic efforts to sustain life. And, I want to die at home, not in a hospital suffering from pneumonia I’d contracted from some hospital patient, a condition which would kill me quickly due to the hospital’s lack of good hygiene.
My mother had a living will and when she could no longer breathe, she went into the main hospital in downtown Annapolis. The doctors discovered that both lungs were shot from emphyzema and there were various tumors at the top of both lungs. I never told her about the lung cancer that had returned. Instead, mother said to remove the damn breathing tubes, they were just too painful. The doctor did in accordance with her living will.
I sat with my mother, hand in hand, as she slowly passed from the land of the living. She felt no pain, the poison buildup in her oxygen guaranteed she was feeling no pain. I stayed with her to the end.
Me? My living will, my wife and sons all know my wishes. I’ve told them all to just load me up with pain killers, put on some good TV shows, get me a hoagie now and then, disconnect our home telephone and any calls for me will go to my wife or kids. No pain, that’s all I’ve asked for, no pain.
Congratulations on a well written article on a subject few are willing to discuss. Now if someone would write an article on the importance of having funeral/burial plans made before the need arises. After all since we all die what to do with our remains after we take our last breath. To often this decision is left to distraught family members after the fact. Being proactive can relieve the family and loved ones of this burden.
A great, thought-provoking article. I personally find that many patients and their families aren’t willing to hear that there is no meaningful chance of long term survival from his/her cancer. As Oncologists, we walk a very thin line between being honest and taking away all hope. I try to always establish hope of a good death when I find I must break bad news. Some patients accept the inevitable with grace. Others become angry that I am not encouraging them to “keep up the battle”. I hope that as a society we will have more discussions like this, and help people understand that death comes for all of us.
Another thought shared with me by a great mentor: the Oncologist should heed the words of “The Gambler”:
You gotta know when to hold ‘em,
Know when to fold ‘em,
Know when to walk away,
Know when to run…..
I pray daily that God will guide me as I try to guide my patients through difficult choices.
Well written essay on choice. As a fellow family doctor, I have had many of the same experiences, including the threat of being reported for “murder” for not continuing useless care and honoring wishes of the dying.
There is no right answer for everyone, but there is a right answer for each person. Honor that answer.
Kudos, Dr. Murray.
I understand in case where life is at its end… even though, I cannot be conviced here that there is no chance to take when there is one that could work… My own husband is a defying case of medecine, and no, no priest involved, no magic or whatever… just that the time to end wasn’t his at that moment, even if he spent 3 years to recover in a hospital. And if someone had pulled his pluged then, it would have been a real waste for the world.
As for me, I’m glad that I took the chance that the cancer treatment cured me 10 years ago, instead of having just 6 months to live… Here again, suicide or refusing treatment may be a kind of choice for some, but I’m willing to take a chance on living.
Wonderful article, thank you for writing it and posting.
I’m reminded of a quote Jesus said in the movie, ‘Jesus Christ Superstar’, (I’m not sure if it’s from the bible or not, but I’ve never heard it before),:
“To conquer death you only need to die.”
All doctors and nurses should talk with at least one person who has experienced a NDE and all hospices should employ one to talk with family and patients.
The overall premise of this comment – that doctors make better-informed and, it appears, consequentially different assessments of end-of-life interventions in quality of life terms – is insightful and, subject to some of the concerns that others have raised here about the misuse of such a premise, even useful. The asides about CPR, however, are so wrong as to be misleading and, if they deter CPR training or use, dangerous:
- with due respect to Dr Murray, the comment about “breaking” ribs when CPR is “done right” is simply wrong, in at least two respects: first, while rib fractures are associated with CPR:
– while there are indications of a higher rate of injury among, for example, those with osteoporosis or surgical complications, the overall rate is on the order of a quarter to a third (see Hoke RS, Chamberlain D “Skeletal chest injuries secondary to cardiopulmonary resuscitation” Resuscitation. 2004 Dec;63(3):327-38);
– at least some of that rate involves CPR given without any or adequate training, not “done right”; and
– while, again, end-of-life CPR may be traumatic, the Hoke & Chamberlain study indicated a relatively low level of injury – that is, minor fractures, some not readily detectable – and minimal clinical consequences.
- With, again, due respect, Dr Murray’s experience of emergency patients and CPR is an unsound oversimplification: it is generally acknowledged that (a) CPR outside the hospital environment has a low (c 6%) survival rate and (b) data is difficult to obtain, given the exigent circumstances of out-of-hospital CPR, but (c) CPR together with use of ambulance or, increasingly, publicly available defibrillators has a survival rate around 30% (and, again, this figure is likely influenced by poor CPR practice and/or substantial delay in defibrillation).
While realizing that Dr Murray is focussing here on a different question, it is regrettable that these sweeping and unsound statements have been included in such a prominent paper and risks undermining the progress made in community dissemination of CPR.
A very powerful piece, and one we are likely to use in our teaching in the medical school for both students and residents.
I would suggest that if patients knew that doctors felt this way, rather than that we were trying to “deny” something to them or their relatives, it might be much more effective.
I distributed it to our faculty and residents, and some colleagues in Brazil. Here are some of the comments I have gotten back:
Faculty Geriatrician: “I like this Josh. I’d like to add this to our Medicine Across the Lifespan module as we have topics on ethical issues in older and adolescent care and this is a thought provoking and interesting perspective…especially to future doctors! ”
Faculty Psychologist: “Wow, this was an article well worth reading.”
Resident: “This is an amazing article. I know I’m only 32 but the author mirrors my wishes.”
From Brazil:
“That’s a great article, Josh. In my view it addresses beautifully the complexity of a reality that is the same as ours in hospital practice.”
“Great article. I Just read it!”
As a health services researcher in end-of-life and palliative care, I found this to be an excellent (if admittedly anecdotal piece).
Ken, you have done a fantastic job of distilling many of the problems surrounding how people die in this country into a simple formula (“patients, doctors, and the system”) in your piece.
Your focus on the system is especially important. Right now, the default in this country is almost always more care due to a variety of system-based(notably economic/payment incentives, legal fears, and an inability of physicians to talk openly with terminal patients about treatment options and expectations) and person-based factors (religious/ethical views of the patient and family and the personal feelings of physicians regarding their own ability to fight disease).
To improve end-of-life care focusing on the system-based factors will be more effective. By altering the system(to borrow a trite and overused phrased, “shifting the paradigm” in end of life care) we effectively address what might today be considered personal factors, as well.
Anyway, stepping down off my health services soapbox for now. Excellent piece, Ken!
An excellent essay as far as it goes. An essential fact of life that would help protect us from unnecessary heroic measures is stated by the Apostle Paul (II Cor.5:1): “For we know that if the earthly tent we live in is destroyed, we have a building from God, a house not made with hands, eternal in the heavens.” Much of our unseemly grasping for physical life arises from our amnesia of who we are (children of God) and why we are here (to love and serve others as God loves and serves us.
This reminds me of when I was considering LASIK through the military about 6 months ago. I read some of the horror stories, and then it hit me; Why do all the published doctors on LASIK wear glasses?
I thought about that and realized that they do not want their perfectly healthy eyes under the knife, with lifelong issues to follow. The “No More Glasses” is a powerful sales pitch, but my eyes are too important to take a risk, however small. Thank God I didn’t do it!