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.
In 1969, my dad was being treated for cancer (smoking related). On being told of the probable positives and negatives of further treatment (3-9 months more of life under brutal treatments)and considering the further financial drain on the surviving family, my mom, who loved him dearly, basically invented hospice care on her own: it didn’t exist in 1969. She brought him home, got a nurse neighbor to administer pain meds (graduating to morphine), and he died at home in peace and among his family. I am still amazed by her courage and wisdom.
20+ years ago my Dad passed from Cancer.. melanoma(he also had asbestos poisoning)he was “cut” on several times..all saying “we think we got all of it” the last was in November,the following May he had a seizure(my Mom thought maybe a stroke)i’ll never forget when they brought the pic’s of his head..and they counted 15 tumors…they told him radiation was a 10/15 percent chance of shrinking the tumors..he did it..it burned his entire head,his hair fell out,lost his apatite ,he kept having seizures and while having these..he and my Mom would fight about calling 911…he only stayed in the hospital(after being admitted after a seizure)a couple days and went home to die,THAT IS ONE OF THE HARDEST THINGS ONE CAN DO…WATCHING ONE OF THEIR LOVED ONES SLOWLY DIE,he lasted until July..after..my Mom’s doctors HUNTED my Mom’s body TRYING to find CANCER, unfortunately COPD will will take my Mom…MY doctors don’t understand WHY i don’t do preventive (hunting) medicine…I’ve already donated my body to science-UC Davis Medical Center-the big “C” i know it’s there..everybody has it…only…i’m not going looking(hunting) if i get sick/in pain..i plan on managing it with HEROIN !!! on the 1st try i’ll either go out with a bang!!! or be so HIGH!!! i won’t care i’m sick!!! now..after watching my Father slowly die…i get to do the same with my Mom…just my story and feelings and..i’m not afraid of what’s next…
A physician friend, Lee Lipsenthal, died last year. He wrote a book in his last months and here is an interview about that time and his work. May we all go as gently.
http://www.youtube.com/watch?v=3UIFbOfWwYE&noredirect=1
I commend you on a beautifully written article. I agree with your philosophy on the dignity of choice in death. However, I disagree that it is often the patient who demands heroic intervention. I have personally witnessed three occasions in which the patient and family expressly requested no invasive care or heroics, or were not consulted at all. The families and the patients were devastated by the invasion and the ensuing misery.
I am a doctor of chiropractic. I recognize that you are a medical doctor, and that you have a differing philosophy of health from myself. Putting that aside, the rights for our own lives and health choices are under siege today.
Great writing, I will say from a medical doctor! Well done.
I enjoyed every bit of the article. It is both pleasurable and informative!
i am a 46 year old retired registered nurse and a stage 4 cancer victim. this is so timely to me even though i agreed with the doctor’s views before i got cancer. this is the best article i have ever read, all should read!
Couldn’t agree more, am also a physician and when my father suffered multi-infarct dementia we took him into our home where he eventually died after several years without ever being hospitalized. At the end of of his life his only medication was a morphine patch, his internist though about my choices and agreed. His death was peaceful with the family all around.
Wonderful article! We treat pets better than humans. At least they can be euthanized. I’m sending this to my relatives to read so they know what I want. They already do know and hope this helps them remember.
Thank you, thank you, thank you!! As a former medical technologist, I have seen my share of needless suffering. I even tried to encourage a patient dying of hepatitis that he could refuse to let me draw his blood. He wouldn’t do it, and I was forced to needlessly draw blood for a lab test. He died less than 8 hours later. With a dying (and dearly beloved) mother-in-law and dying father, I have found it nearly impossible to convince my family not to allow heroic measures.
Death is inevitable. Long suffering just prior to death is not.
I too am a no-code unless witnessed and there is a reasonable PROBABILITY to recover to full pre-event capacity. Otherwise, it is literally “off to Heaven”. My Advance DIrective refuses futile care and places all finacial burden on those who initiate/maintain it. Since I am a full organ donor, the sustainment until harvesting is NOT excluded. BUT NOT A SECOND LONGER. As a Christian Pastor-Teacher, my destination is clear, the path to that “place” is fraught with changes and challenges, but I am one who believes clearly in the Higher Power of God, Who has a purpose for everyone [whether they out of a negative use of Free Will choose not to do it]. In closing, Death with Dignity should be the highest of Standards, no one should be forced to endure “futile care”.
Interesting that just days ago the British Heart Foundation announced it recommends the public perform chest compressions over mouth-to-mouth. What exactly is the risk of breaking the ribs or sternum when performing chest compressions? I expect its quite likely for the layman. (http://www.bbc.co.uk/news/health-16222183)
Thanks for this wonderful article. As a physician who takes care of the critically ill, this paradox is too obvious among many of the patients who enters our rooms attached to a jungle of tubes, wires, monitors, and machines. I really believe the fault is in the misperception at the societal level, that modern healthcare can deliver on miraculous things. There is no doubt that we have progressed to the point of performing small “miracles” over the past century, but the human body and all that ails it, including time, remains beyond our understanding and control.
“Doctor, please do whatever it takes! Don’t hold anything back! Bring him/her back.” is a sentiment I often hear. It sounds easy enough (?), but the key things there is that those things we don’t hold back, can involve weeks of being stuck on the bed, developing sores and superinfections, a tube in every orifice and cavity (chest tubes, abdominal drains, bladder and rectal tubes, central lines into the great vessels, a breathing tube, brain monitors…), loss of consciousness or a state of delirium and anxiety that can be frightful at the time and persist after critical illness, machines to function for you lungs and kidneys, and medicines to force your heart to work hard to keep the body flowing with blood and oxygen. If we learned that our particular patient believes that the ends justify the means, the issue and concern often becomes what are we bringing the patient exactly “back” to. Will I be able to feed myself, articulate, walk even, or wipe myself, or will I have live under the complete dependence of family or strangers, unable to speak, or be confused and afraid…. These things that we see as medical professionals on a regular basis are probably the reasons we choose to tread lightly on the level of invasive and heroic care, and keep in might the goal ahead if we go though such things…. Indeed, most of us value our independence and intellect, such that if those are unlikely, no amount of interventions should be pursued. Futility by the way are defined by the patient’s goals, and most I would say the goal is not just to have a pulse and a breath… Indeed, for most of us in the health profession, I think we are of the side that the ends does not always justify the means….
I’m not sure whether it is the influence of the media and medical shows that we all laugh at the unrealism of it all, or whether it is self-imposed by physicians unwilling to admit their helplessness, but it is quite true in my experience that most of us who work with the critically ill would not want to have such things done to ourselves. The medical community has many a conferences educating ourselves and discussing the ethics of medical care, but rarely have I seen such discussions or education efforts with the public. We have done such a wonderful job of promoting our successes, but a poor job of educating the world on the reality that the human body is still beyond our understanding and absolute control.
Thus, I was very appreciative of seeing this poignant and articulate article by Dr. Murray, not in a medical “journal”, but in the mainstream. If at the least it instigates families and loved ones to talk about what they would want if afflicted with a catastrophic illness, just that, is a big leap forward…
As the executive director of an organization (Compassion & Choices of New York) which works to improve care and expand choice at the end of life, I found this wonderful article extremely compelling,informative and insightful. All health care professionals who care for seriously or terminally ill patients should read and reflect on it with the hope that it will result in better communications with and treatment of patients at the end of life.
Ten years ago my father was diagnosed with lung cancer. He opted not to accept any treatment after watching several of his brothers and sisters suffer for months with radiation / chemotherapy and still succumb to their diseases. My father was 68 years old at the time of his diagnosis and said he did not need to live forever and would rather enjoy his last days with family. He came back home and lived for over two years without any further treatment, after the doctor told him he would likely live six months. He was very happy in those last few years. Sadly, however, when he started to decline, my mother could not handle the thought that he would die in their home and had him admitted to hospital. Within a week of being admitted to hospital my father passed away. Before he died he told us “dont be sad, I had a good life and got what I wanted in life, which was to have a family.
One of the reasons I left ICU nursing….we spend too much time and money prolonging and increasing the pain of death, rather than restoring health. Everyone who has read about the miraculous recovery of a 20 year old thinks the same is possible for their 80 year old loved one…
As a physician, I read your article with interesting, waiting for the citation from which you obtained your summary of how all physicians die. Perhaps I missed it, but my guess is this is an article based on your opinion of how people should die rather than a report of how physicians actually choose to die. If the former, please allow me to avoid your medical practice, because I wish to have everything (within reason) done.
Physicians tend to choose the best possible care and physician for their condition. The average person reading your article would not likely know the difference between high technical competence and simple charisma and self confidence. The risk then becomes premature acceptance of a terminal condition when in fact there is hope. This is especially true now that there are so many medical journals and current research articles that it is difficult to be confident that there truly is no hope.
That said, I have observed codes training hospitals where there truly was no hope, yet some benefit was gained by allowing the resident to practice placing a central line. And occasionally a miracle occurs and the patient who was thought to be hopeless recovers.
The answer is not necessarily less treatment, but more humane application of that treatment and more unbiased information about that treatment for the patient without making him or her feel guilty for wanting to live.
Failure to pursue state of the art treatment reminds me of the lost art and knowledge gained by autopsies. True, it cost money, but it also improved our medical knowledge in general and clarified cause of death in specific cases.
The solution to high medical costs (which are the 800 pound gorilla in this room) is not less medical treatment when it is needed, but preventing the need for that medical treatment in the first place by proper diet. Check out ForksOverKnives.com for a better alternative to dying.
Wonderful article, and the responses illuminate the nerve this has indeed touched. As a nurse for 25 years, and APRN for 15, I was also disenchanted with working in the ICU. Too much effort and expense at the end of life when patients had already been smoking, drinking and overeating for their entire lives. Yes, education and healthy lifestyle are important, and as healthcare providers – let’s teach. Proper diet is not the solution to everyone’s death. As an elder law attorney said “The risk of mortality is holding steady at 100%”. I have seen patients dying at home who were in so much pain, I would not want my dog to die that way. Families can be so overwhelmed by taking care of a severely demented, severely ill family member that they go beyond their wits end. Not everyone will have a good death at home, but many more will not have a good death in the hospital. I absolutely agree that the general public does not know anything about what it means to be intubated, the risks vs. benefits of CPR, or kept alive with artificial hydration and nutrition. Everyone wants a good life, and without exception, I can say that everyone wants a good death. The definition of a good death has been, unfortunately, sold to patients and family as heroic measures that always cure, are always good, and always produce a miracle. Dr. Murray has started a conversation that will hopefully continue to enlighten the public about the realities of dying without an informed advance directive.
People need to trust in the experiences of the doctors who deal with death on a daily basis.
Some like Steve Jobs and others have said that death is ultimate evolution’s solution in everlasting life; that death is necessary in the circle of life.
Then why is it that we have so much difficulty in accepting death?
It is because we as a specie attained the most desirable byproduct of evolution – love. That is, dying greatly hinders our capacity to love someone and that severance causes pain, and so it is our evolutionary instinct to fight it off as much as possible. Death is not acceptable because of love.
To contrast this, imagine a family of a victim desiring nothing but the capital punishment of a criminal. There, we welcome death.
However un-natural it is to recommend death, doctors should not be afraid to stand up to a family that refuses to accept. Doctors with their vast experience are the best to know WHEN to recommend this.
And upon such trusted recommendation, people must realize that allowing death is also loving.
Thank you for bringing forth all these interesting ideas and for the opportunity to offer mine.
I have two points to address. One is that I see a discrepancy between the subject of the article and its title. Nowhere does the article list, let alone describe or discuss in any detail, how physicians choose and ultimately die. Based on the title, I expected to see at least some such analysis. Perhaps the title should read “How physicians NOT (normally) die,” namely in ICUs, after all possible hopes for cure have been exhausted, in horrendous debt, unbearable pain, in fear, undignified, like so many of us and if in fact this is the case for them.
The other point is about expressing how I would like to die. That is, healthy, relatively young–although my friend Tom keeps (lovingly) reminding me that this boat already left the dock, aware of my surroundings, aware of how wondrous death really is, in control of my bodily functions, relatively painlessly, at home in my wonderful bed, or away, perhaps in a beautiful place, with a friend or alone, but in peace. As it stands, there is no way this culture would allow me to do that. Sadly, I know not one physician who would openly consider touching a death wish like mine. Our culture wants us alive. Among other things, dead people don’t work and generate taxable income, or pay taxes. Dead people do not generate employment which in health care is rather substantial. Yet physicians, seems to me, have access to means not made available to their patients, which is what I thought the article was about. To be sure, I would gladly trade ten years of being healthily alive at risk of becoming terminally ill or permanently dependent from others for a chance to choose how to die.
I was impressed with the article, it makes perfect logical sense. About 15 years ago a dear Canadian friend died of incurable pancreatic cancer. He knew he was never going to be young and healthy again. He chose not to endure chemo and radiation and countless hours in treatment centers. His wishes were to be made comfortable when the time came. during his last two years he did what he wanted, he played golf, traveled and enjoyed his friends.
He died peacefully.
I have made my wishes known to do the same should I be put in a similar situation.
Excellent article. It’s a shame that we had all the “death panel” garbage from Palin and her friends last time around during the election campaign. What a perversion that was.
Hi Dr. Murray,
Thank you for sharing your perspective on the subject. I must admit that I teared up a little while reading this article. Though I think it’s just because I am afraid of losing my loved ones. I can’t even imagine what you went through while writing this and recollecting on deaths you’ve seen. I really appreciate that you shared because I plan to work in healthcare, and I know that I will have to deal with death being a frequent guest in this line of work. Now I have a better idea on what to expect when it comes to providing extraordinary measures.
Thanks,
C
As a child this topic was constantly brought to my attention. My mom was writing her book on Medical Ethics and End-of-life decisions. At the same time, I watch my brilliant, elegant grandmother die a humiliating and slow death from dementia. I had come to the same conclusions as this writer, but, of all things in life, I was diagnosed with Multiple Sclerosis a few years into college. Now here’s my point.
MS has taken my entire identity from me (architecture, music, long distance runner and ski racer), and when I think that it can’t take more, it does. I have had so many of those humiliating and ‘unhuman’ experiences that I had watched my grandmother suffer. Those moments when you realize that there is another thing you can’t do without someone near by, because you never know when that fall will happen (sprained back falling down a flight of stairs), or when you will choke on your pills (dysphagia), or my favorite… pouring a boiling pot of water over your hand and not noticing(neuropathy).
So, one would think that I would still hold the same view on death, but then how do I know when its time to give up? To avoid the pain, drug side effects, new losses, 6000$ in meds a month, and a full time job showing up to doctor appointments. Many the doctors appoinments, tests, and treatments are torture. Then I realized that 80% of the drugs and treatments are actually helping me, and that, in fact, new medications do come out. I am like a child on Christmas morning when I get something back that I thought I had lost forever. You never know when the next new thing will give you back another piece of your identity that you had mourned for gone. I have decades left of these expensive and sometimes awful treatments, but if I give up now, who knows what else I could have gotten back.
“The answer is not necessarily less treatment, but more humane application of that treatment and more unbiased information about that treatment for the patient without making him or her feel guilty for wanting to live.”
Amen, and can we please add, “OR die”?
For those all hopped up about all the “death panel” claptrap from the conservative right last year, THIS is what was actually under discussion. NOT some board of experts deciding who would get treatment and who would not.
my sister died of rx pill overdose and was resuscitated (after an entire day of respiratory distress causing hours of O2 deprivation) by emergency personnel. 7 days doctors held her back from plummeting blood pressure, and renal failure, but she remained in coma until she emerged into a semi- vegetative state. doctors told my family that they’d they’d never seen a patient like her ever recover, but there were other, less scrupulous “doctors” who really wanted a patient they could experiment on, who gave him different advice, and promises– even going so far as to suggest that they could recover her brain function and bring her back but without her addiction problems. it’s been 6 years since that happened, the only thing that’s changed about my sister’s condition is that her teeth now stick all the way out bc she can’t pull her tongue into her mouth, the back of her head is sloped, bc she can’t sit up, and she spends a lot of time heavily sedated, and/or strapped to her bed so she doesn’t suffer seizures, or flail around and hurt herself. my parents divorced after 30+ years of marriage, and i haven’t spoken to my father in 5 years.
A sobering and important article.
It’s true that not all people and their families jump at the desperate chance to destroy remaining life in order to save it. Sadly, I feel those who do, are often victims of our culture in the west.
Mondern western culture is so avoidant, so obsessed with image, beauty, and the denial of pain, suffering. People are terrified of dying, because such subjects have become foreign to them. I feel many of our currently typical ways of trying to deal with death do more harm than good. We basically avoid the subject and pretend death isn’t real, right up until the moment comes. Then we compress all of our shock, confusion, and grief into a brief period just after death happens. We ritualize that period with a loathsome character. Sadness, depressing dress codes, nothing but focus on loss and tragedy.
Then, after this all too brief period of dealing with the reality is ritually over, we’re supposed to “move on” and not think about it any more.
Is it any wonder that people are incapable of dealing with death? Add in to that, the malaise many people already feel about their lives having little meaning today, and it gets worse. People have had community stripped from them by isolationist trends in culture. They often no longer feel work or achievement is meaningful. They’re left will little besides a consumerist pop culture and nearly mindless traditions to try and feel that their time has been worthwhile.
I believe in a culture more balanced with its treatment of life and death, the prospect of death would (should) be a galvanizing experience. Scary, yes, but bracing. Knowing a specific end point is coming allows one to have real control over what course their life takes and what they do with the time. When we hear that someone has a year, or two years to live, we often react by thinking how tragic that is… how little time. That’s not true. That is a lot of time, in human perception. It’s just that we’ve grown used to wasting time without realizing it, doing nothing, or selling our time to others and not getting anything in return for it outside of base survival.
Alison: After all the heart-wrenching stories among the comments, yours touched me most. I’ve recently retired after 30+ years of practice as a critical care RN. I wish I had kept a journal of cases and experiences that mirror yours. I bailed out because I simply could not face or endure the inhumanity. I could no longer abide the attitude of physicians who put their fear and ego above the welfare of patients and their families. I’m sorry that you, your sister an all your family have suffered at the hands of what, in the end, is really an inhumane system. The pain and suffereing are as ripples in a pond, touching many and, eventually, touching all. Bless you and yours.
My Mom had been diagnosed with esophageal cancer, stage 3. The doctors recommenced surgery, which basically removes the esophagus and attaches the stomach where it used to be, not fun. She also had kemo and radiation treatments. Before the surgery a feeding tube that was placed directly in her stomach so she could receive nourishment after surgery since there would be time needed to recover. Well the feeding tube started “leaking”, which caused her to get ill from all the food that was escaping into her gut. After a week of her in the hospital, and not getting better, she had emergency surgery to have a gastric lavage..it was awful and she suffered greatly. She did recover from the lavage, and she continued her treatments, but with great cost and pain and suffering. She passed away 18 months later. Her last few months were very difficult, and I don’t think the treatment was worth it at all, not to mention the “extra” suffering from the botched feeding tube. Her experience convinced me back then NOT to go through any of this , if I were ever to be in a similar situation, and this article confirms my thoughts on the matter.
In Feb of 2007 my father was diagnosed with oral cancer (a silent killer). In Dec of 2008 he passed away. What transpired in between was a journey of courage, persistence and Persons RIGHT to fight. A curable cancer that did not spread started with a 16 hour surgery that was “successful” and the tumor removed with negative margins. What followed was standard protocols…chemo, radiation and shots to avoid dry mouth… just three months after all of this, the cancer came back with a vengeance and he lost his voice. His last year he was fed through a peg tube. He walked almost daily up until the last month despite Doctors suggestions to prepare us for palliative care. My father, only 60 and in excellent fighting spirit was disgusted that his wishes weren’t well received. We began changing Doctors and new treatments were effective but too late. What pursued was a persistence fight to beat the disease because it was his “choice”. Doctors gauge the Patient and his ability to fight but they weigh that against their own ability and knowledge to help the Patient. Some just don’t believe in it despite what the Patient wants. I took my father to 100′s of doctors appointments (mostly local), a dozen blood transfusions, 4 surgeries, dozens of x-rays, pet scans, chemo and radiation treatments. In the end he lost the battle because his gut basically died. It was fairly painless for him at the end but, in some ways I was relieved to see him be at peace. He didn’t have to fight anymore. I would have helped him fight more if he wanted because for the Patient, my father, to know that someone is fighting for you and by your side through most difficult time in their life was more important that telling him to give up and accept death because it was easier and more comforting for everyone. This concept was beneath his comprehension. He thought it was a way out for Doctors not to do more. It was simple he wanted to go on his terms. A persons total clinical status is critical to the fight… my father had no other underlying chronic diseases which put him in a position to fight. His main surgeon told me once that he had seen so many cases in his life and that overtime he was humbled by this disease. He said that He’s cured the impossible cases for some very lucky Patients and lost Patients that he thought would be an easier case like my Dad’s, the unlucky ones. The reality is that no one knows what the outcome will be and that’s why we must give Life a chance and test our own desire to live and face our fears. We may not escape a bad outcome but surely we can ALL be true to the cause of science and all its promises to heal the wounded. Three years ago, I was petrified of death, today I acknowledge it as an inevitability for all but I wouldn’t throw the white flag if diagnosed. Diagnosis does not equal death. I would fight as long as my mind wanted to. I believe my Fathers death made me stronger… it made me realize whats important, Life. That Life worth living defined by me and its quality might suffer some along the way but its the cost of battle for the chance and hope to be free of a deadly disease and my own fears. Ultimately, we are all tested.
I was diagnosed with stage 3 gastric cancer at age 57. After enduring three months of chemo there was no improvement so surgery was postponed to allow three more months of chemo treatment with a different concoction.
During the second round of chemo I caught a cold and had to hospitalized to get the infection under control, but that mix shrank the tumor and surgery was planned to completely remove my stomach and a bunch of lymph nodes. For you medical people, I’m told my surgery was like a Whipple procedure.
The surgery went well and after a couple months recovery it was back on chemo for another three months. Well that third round just about done me in and I spent another week in the hospitable while they pumped me full of fluids with an IV, while trying to find food I could eat and hold in. Since then it’s been pretty good. Doctors said no more chemo for fear of killing me.
From what little I know, I would call my experience a little worse than average. Things didn’t go perfectly and it was extremely painful, but I survived. I have to eat small meals 8 to 10 times a day to keep from starving and many night I have to sleep setting up. (No valves to keep food in its place) That gets old.
I could not have ask for better care. The surgeon and hospital staff were wonderful caring people. My oncologist was/is amazing and I still see him every six months to keep an eye on things. Oh yeah, this was my second time with cancer. The last time was over 20 years ago. That one wasn’t nearly as bad; only surgery and radiation.
Friends watching this take place commented they don’t know how I tolerated all the months of chemo, procedures and hospital stays. A few said that after seeing my ordeal they would not do it and would just live out what ever time they had left. At that point I have to tell them that while it was no picnic, it really wasn’t all that bad; considering the options.
With the type and stage of cancer I had, the odds of survival were 50% that I would last two years and 30% that I last five years. If I had to do it all over again tomorrow, I wouldn’t hesitate. If I had to do it again at 80, maybe not.
It’s been just two years. Now working on three, four, five. . . .
I would like to add one thing about cancer treatment that a doctor friend told me when I was first diagnosed: “If you are diagnosed with cancer, find a Designated Cancer Treatment Center that specializes in your type of cancer and get a referral to the best doctor at that clinic.” Sometimes you only get one shot.
In my case that advice probably saved my life. I’ve included a link to a site listing Designated Cancer Centers at the bottom of this letter.
You may have the most caring doctor in the world but if he isn’t a specialist for your type, he’ll understand your wanting a specialist and probably be relieved you ask for a referral.
http://cancercenters.cancer.gov/cancer_centers/index.html
Adding another family story, my 88 year old mom had a debilitating stroke that left her unable to swallow or communicate and little use of her limbs. After a week in the hospital with constant care, fluids pooling in her arms along with ever increasing collapsing blood vessels, my brother and I made the decision to remove the minimal life support rather than perforate the stomach for a feeding tube, move to a constant care facility (which we had already secured)and continue her misery. The nurses were encouraging with our decision, then the doctor came by, had a sit down with us and told us that this action “borders on euthenasia.” But he then added: “But if it were my mom, I would do the same.” I have thought about that many, many times in the last 14 years, but always come back to the same conclusion – that my brother and I were right to make a decision and to make that decision. We have had no regrets to protect her from her non-life beyond that point. Go in peace.
Good article, but it fails to mention the other options. I have met many people on line who cured their fatal cancers by the use of vitamins, herbal remedies, changes in diet, etc.
Dr. Irwin Stone talks about the use of Massive Doses
of Ascorbate in the Control of Leukemic Mortality
http://www.whale.to/cancer/stone.html
Smoker’s Scurvy:
Orthomolecular Preventive Medicine in
Cigarette Smoking
Irwin Stone, P.C.A., F.A.I.C., F.I.A.P.M.
http://www.seanet.com/~alexs/ascorbate/197x/stone-i-orthomol_psych-1976-v5-n1-p35.htm
The Budwig Diet Revision
http://members.shaw.ca/duncancrow/Budwig-diet-revision.html
THE CURE OF ADVANCED CANCER BY DIET THERAPY:
A SUMMARY OF 30 YEARS OF CLINICAL EXPERIMENTATION
MAX GERSON, M.D.
from Physiol. Chem. & Physics 10 (1978)
http://www.doctoryourself.com/gersonspeech.html
ANOTHER WAY OF LOOKING AT THE TREATMENT OF CANCER
http://www.doctoryourself.com/cancer_2.html
Fantastic, and hopefully life-changing article for some! Thank you for putting it out there for us all.
@Don Johnson – leave politics where they belong…..not here or on a piece like this.
I have served as a Medical ICU Chaplain, and I couldn’t agree more with this article. This is not to say that there might not be compelling reasons to prolong life (conscious or not) for a horrific time: making or avoiding dates important to family, a chance to say good bye, and such. I have the deepest respect for the doctors and nurses who set aside their pain to help this happen. That said, I can think of ICU staff of whom I say sincerely, I would trust them with my death. God bless them all.
The last time my 100 year old stepmom with severe dementia was admitted to the emergency room and an overnight stay for what turned out to be indigestion, the bill to Medicare and her very good insurance was over $20,000. I was appalled. She had a “do not resuscitate” form at the nursing home and should have had one on file at the hospital. I told them she was a dnr and all the heart tests were unneeded. Then I spoke to her doctor—and he said, that no matter what I said, that probably the hospital would conduct the same procedures if she were to be admitted again. That’s criminal.
My late husband, a physician, died of pancreatic cancer, 5 yrs. ago, at home, 18 months after diagnosis. He did accept aggressive chemotherapy to extend his life, knowing it was palliative only, as long as he was able to tolerate it. After all, he was only 58 yrs. old, had a 14 yr. old daughter in high-school and 2 older sons, one in college. He hoped to see one of them them graduate, to no avail.
Besides leaving us and worrying about how we would do without him, his biggest fear was dying in a hospital. I am glad we were able to grant him his final wish as it was a real comfort to him. However, if I had not been a nurse with an army of nurse friends to help me, we would not have been able to offer him a safe and quality experience at home in his final weeks when he required total care. In reality, hospice offers very little actual physical care of patients. The responsibility falls almost totally on the family’s shoulders and some families are simply not up to it.In those cases, I would not recommend it as the family may end up feeling like a failure.
@Vishal. Thank you. What you wrote adds depth to my developing understanding of life while living with chronic disease and suffering.
Finally, someone saying what I’ve been thinking and saying for the past 10 years or so. Thank you, thank you, thank you, for this article. I also agree with this article. We saw my mother-in-law go through procedure after procedure, surgery after surgery, well into her 80′s that did NOT improve the quality of her life. But cost hundreds of thousands of dollars, maybe a million. I don’t know how much. We never saw one bill or invoice, as it was all handled by her Medicare supplement. My grandkids will probably be paying her bills into their old age.
Agreed. Thank you for sharing.
Very powerful article. Regardless if you included statistics or studies, you told one physician’s story openly and honestly. I truly hope throught social media this article is circulated until everyone has an opportunity to read it. And thank you for articulating my thoughts and wishes.
I agree with everything in this excellent article. However, it is not easy to decide when life has gone on long enough, especially if ending all treatment would make it more painful. I used to think that one could easily say, “Stop treatment and give me lots of pain-killing drugs,” but it isn’t that clear. Should I stop having fluid drained out of my chest when I am told that if I do, I’ll feel as though I am drowning? Should I ignore all my little skin cancers because I’ll probably die before they are very big ? Or will I? I’m costing Medicare money, although not enormous amounts. I live with loving care in a beautiful place, with freedom to think and discuss ideas.
AN EXCELLENT ARTICLE…SO VERY IMPORTANT IN THESE TIMES.
I suffered a cerebral hemorrhage back in January of 1986 at the age of 29 years old, just 9 days after my 6th baby was born. Doctors told my husband that I would be dead in 3 days and, when that did not happen, they told him that I was destined to be a mental vegetable who would never walk again. By the grace of God, I not only got out of the wheelchair 6 months into recovery but went on to attain a B.A. magna cun laude (GPA 3.54) and have since lived long enough to see my 6 children grow up and (so far to-date) the arrival of 9 grandchildren. Had they unplugged my supports during that first 2 weeks in coma, I would not have survived the 27 years since to write this today as a testimony to the fact that we should never give up on life. Former Surgeon General C. Everett Koop was diagnosed at an early age aith Kugelberg Waylander Syndrome which was expected to take his life before the age of 21. He is now in his nineties and has led a very productive life. When he suggests it wise to err on the side of protecting life and further adds it is best to just say no to nursing homes, it seems wise counsel to me indeed. Cherish the gift of life!
I was astonished to read some of the costs involved in providing treatment.
If we acknowledge that ultimately these costs are paid for by our fellow citizens, then what level of expenditure do people on here feel that, say, an 80 year old, in poor health, has a moral right to demand of their health provider (and felow citizens), towards their treatment. Unlimited or not?
Excellent article. It really makes you wonder what it is about our culture that wants or demands extreme measures in the final days, weeks, or months of our lives. About 4 years ago my wife died after suffering a stroke. I remember quite clearly the neurosurgeon offering an option that he characterized as “saving a life”. That meant a persistent vegetative state with no hope of recovery. Thankfully, her family and I simply accepted that she was dying. This led to the positive outcome of organ donation to set of recipients for her heart, liver, kidney, and pancreas. It is still a very difficult thing for me personally, but it makes me want to buy a “no code” bracelet rather than undergo some extreme action that might leave me incapacitated or lifeless. We need to put more humanity into our standards of care.
A beautifully written piece of inspired and inspiring thinking. Thank you, and thanks to those who have left their comments for others to learn from.I would like to offer a bit of hard-earned practical advice. This applies to those living in Texas, and may apply elsewhere – please check on the law in your own state. However, in Texas, it isn’t enough to have a DNR document on file everywhere, and for your spouse or trusted family member to have your Power of Attorney. Unless the person you trust to have your end-of-life decisions obeyed holds a separate document, a fully notarized Medical Power of Attorney, doctors can over-ride the first two documents if they choose to do so. And don’t forget the Organ Donation card unless that makes you squeamish, in which case you probably won’t have a DNR anyway.
My father had dementia and Parkinson’s disease. His dementia was the worse. My once proud and brilliant father had become a fumbling idiot instead. One day he had a stroke, a bad one. He ended up in hospital with a feeding tube because he could no longer swallow. He could not speak although his eyes would follow you so you knew he was in there. This went on for months and even with the feeding tube he withered away to a skeleton. I think his digestive system was affected by the stroke as well. One day my mother said, “Enough is enough” and ordered the feeding tube removed. It took him two weeks to finally die. No one should ever have to go that way.
How refreshing to read a different point of view from a doctor who also is obviously a humanitarian, and sensible at that. I’ve seen the torture inflicted on so many hundreds of patients while working in the hospitals and hospice, where I eventually was routed out for taking a stand for the patient.
As a race, we simply are so fearful of death that even if the patient wants to be left alone, the family will insist on “doing everything possible” to save their lives. This is such a shameful thing, and the loss of dignity is barely considered.
I had not heard of the “no code” tattoo, and it seems like a great idea. When it’s my time to go, I’ll just take a walk into the distant forest and sit and think about what a great life I’ve had and how much love there is and then just go to sleep with a smile on my face.
My Mother passed in april of 2007 of liver cancer. In May 2006 she went in the ER she had been sick for a week. They did emergency surgery on her to take her galbadder out which should have been a simple surgery. she stayed in the hospital for 3 weeks. running tests after tests. they finally told us her galbladder was infested with cancer and it had done spread to her liver and wasnt able to get a transplant. they said she had less than 3 months without cemo and maybe a year with cemo . she took the cemo. I really hated seeing my Mom is so much pain every little noise bothered her. About a few months before april of 2007 they gave her these pain patches which I didnt know what they was until now. I just figured they would help her. well Not long after she started on these patches she started halusinating and not knowing what she was doing!!! THey had told us 2 WEEKS before she passed away that her cancer was in remision and its startin to look good. Then the worst happend…… any ways PLEASE DONT TAKE THE PAIN PATCHES FOR ANY REASON THERE VERY VERY BAD !!!! thanks for listing …
Folks, thank you for all the comments. I find the personal stories very moving, and I appreciate your candor in posting such personal experiences.
Couple of responses:
Mercedes, I’m sorry you did not get what I was saying about physicians: Their deaths are centered more towards home, and a quiet, painless, peaceful death, surrounded by family. Space limitations prevent me from going into vast details.
Dr. Anderson, you misinterpret what I’ve written. I advocate, and advocate STRONGLY, following a patient’s wishes, even if, in my opinion, they are wrongheaded. You did not see any citations, because this was not a scientific article published in a peer reviewed journal. Trust me when I say that there is a significant body of literature backing up what I’ve written, which were my observations. I find your assertions of “a better alternative to dying” interesting. I look forward to seeing my first 150 year old, but I suspect that dying is going to be with us for awhile.
Marilyn, I also am a former MT(ASCP). Nice to see another.
Ken Murray, MD