Posted on 12/07/2011 1:11:20 AM PST by JerseyanExile
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.
Wow.... The Save Terry, life at any cost crowd are going to hate this article.
It is correct of course. The cost of medical is out of control because of chasing after futile heroic measures during the last 6 months or year of life.
It should be the patient’s informed decision.
I think I would try some of the treatments.
I have Idiopathic Pulmonary Fibrosis, TERMINAL. There is no treatment for anyone over 65 unless you have unlimited funds and can find someone to do a double lung transplant. I don't have the money or desire to undergo that type of radical treatment, so I am doing exactly as you think that you do if you discovered that you were going to die fairly soon.
As a born again Christian, my first priority was to get my spiritual life in order, then I have had no problem enjoying my family and friends.
God has been good to me. I have a great family. My children are well established and have great marriages and children. Grandchildren are graduating from college with highest of honors and getting married. One of my children has been married a Naval Officer for 20 years.
I am on 02 24/7, but I can still drive, work for my daughter several hours a day, go to church every Sunday and a number of things that I can slip over my family.
Even though, I am in the last stages of this horrible disease, I refuse to not have as much quality of life as possible.
You have the drill down perfect!
Sorry for the long post.
Maria
Sorry for your loss. I’ve been there!
Bingo!
Where'd you get that "fact"? Maybe you know to much or to little. ??????
Maybe we go into medicine to figure out what death means. Kind of like how the kookiest docs go into psychiatry. I've never met a psychiatrist who didn't have mental illness of some kind.
Well that covers most of the clichés. most doctors in my group got into medicine because they wanted to help sick people, enjoy an interesting life filled with intellectual stimulation that pays well, status, family pressure but "fear" or death quest isn't even on the radar. I found the craziest doctors are in pain management, industrial medicine, workers comp doctors and those working on federal institutions (prison, Indian reservation, substance abuse clinics).
Coming from a family of docs, it is true in my family. Not only did my parents chose to forego treatment for their diseases but watching them allowed me to come to the same conclusion. I do not want to be poked and prodded and tested and medicated. What I want is comfort care. Palliative care if you will. Treat my pain so that I can continue to function in some reasonable level and then leave me be. Death is not so frightening as the alternatives that modern medicine often provides.
I think this article indicates the opposite: doctors have a much lower fear of death as they deal with it so often.....
If their fear was greater, they would do everything to prolong their lives like most - but they don’t......
But actually, almost all who don’t know what their relationship with God is fear death......
The article is referring to what doctors chose for themselves. The two situations you describe are far different than finding out one has pancreatic cancer. Doctors save others all the time. The offer the best care and treatment and care they can. When it comes to themselves, particularly with terminal diseases (cancers etc) they often opt to do nothing other than live their lives as best they can.
I disagree. It's reality. If you want to fight for life (a life that really isn't life and isn't worth living) then that is your business...but it should also be YOUR money. Not mine. And not the taxpayers. I really don't have an issue helping save lives but when we go beyond the reasonable...so "mom" can carve out an extra month or two at the cost of $300,000...then...I have an issue.
I have an issue 1) ethically and 2) financially. Ethically is a no brainer. Come on...live life and die with some dignity. Financially: Why should my tax dollars go to that...or an increase in my insurance premiums? I'm willing to chip in a little if we can save a life...but if we are just kicking the can down the road a little...count me out.
I don't know anything about that organization or their motives; however, to imply that proper CPR necessitates “someone breaking (the patient’s) ribs,” seems to qualify this article as “pro-death” propaganda.
Your dentist friend is lying to you, or you’re just making up cr#p about cardiac surgery. May I suggest that if you feel a crushing pressure in your chest as you break out in a cold sweat while feeling as if you’re trying to breath threw a pile of sand....... You take some green tea, vitamin D and E, eye of a newt and some meditation. We’ll wait for next of kin to post prayer requests here.
Thank you for mentinoning that people need to talk about what they want. I have a dear friend who carries my advanced directive. I thought about my daughter, the hospice nurse, but decided against it. Family is often too close and one needs someone to advocate for what the patient wants
I want only palliative and life will be just fine
That's something to be proud of.
My parents both rode an ambulance for a long, long time. They made one save of an adult between them, and have always said that CPR is a waste of time, unless the person drops right in front of you. In the case of the save they made, the guy dropped dead, literally on top of Dad. (literally fell on to him. Talk about being in the right place at the right time. Dad told him not to play the lottery ever again....)
Now - kids are a different story. Mom made a handful of saves on kids that stopped breathing. But - with the specific exception I discussed - this story was spot on about adults.
I agree. My 86 year old grandfather wasn’t sick a day in his life that I can recall. He was diagnosed with late stage colon cancer in January. He absolutely refused to enter a hospital. He did not want to be poked, prodded, with tubes in him and with beeping machines around him.
By May he deteriorated drastically and was having hospice care at home. In July we got a call telling use that if we wanted to see him one more time to get there now. We flew down at once.
My uncle, a doctor who lived close to my grandparents, was there when we arrived and the family all had a chance to see my grandfather and speak with him. He was mostly coherent and recognized each of us. We had a chance to express our love to him. I agreed to stay with him and my grandmother for a while to give the others a break. Just before he left, my uncle had some private words with my grandfather and gave my grandfather an injection. I presumed it was for pain.
After a very short time, he passed painlessly and quietly. In the bustle of many family members arriving, the body being removed for cremation, calls to the rest of the family members out of town and the actual grieving, I didn’t have a chance to think.
We had a wonderful, heartwarming memorial a few days later.
When I did have a chance to think, I remembered that injection and thought it would have been so typical of my grandfather to plan it that way. He was a no fuss kind of man and very realistic. Years later, when I asked my aunt about it, she at first denied it...but finally told me that injection was not for pain. My grandfather made my uncle promise that when his time was at hand, no unnecessary life extending measures were to be taken and that when the suffering became too much my uncle would help to end it.
My uncle kept his promise, my grandfather died the way he wanted to, at home, surrounded by his loving family and most of all, he died pain free and peacefully.
I thank my uncle for helping him to go the way he wanted to and my grandfather for not putting himself or the family through hospital decision making horrors.
I had to get MRIs twice a year for couple of years and now only once a year. I'm not diabetic and I did not need any kind of radiation or chemo. I have no dietary restrictions. My doctor told me that this type of tumor doesn't usually begin to spread until it hits 3cm. They found mine at 2.5cm. I was lucky, but I did not hesitate to get the surgery.
I’d like to add that the Will to Live is NOT the same as the Living Will. The Will to Live gives more choice to the patient, and is in keeping with from inception to natural death.
Here’s the URL again:
http://www.nrlc.org/euthanasia/willtolive/index.html
I dont think the article is talking about sudden cardiac events in the younger people. I think that the author is referencing sudden events in the elderly and significant terminal diagnosis in everyone.
Even so, this is a personal issue between the patient and family with medical input. As medical people become more and more, arms of the government (witness the government questions about guns and the reporting requirements which get more onerous by the year, as well as how they, as a group, throw themselves at Universal Health Care.
My uncle kept his promise, my grandfather died the way he wanted to, at home, surrounded by his loving family and most of all, he died pain free and peacefully.
I thank my uncle for helping him to go the way he wanted to and my grandfather for not putting himself or the family through hospital decision making horrors.
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This is a wonderful family story. It becomes a horror when it is Government Policy
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