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.
Expect to see more and more articles like this as Obamacare kicks in and we are all encouraged to forgo that bothersome end-of-life care to make the numbers look a little better.
You read my mind, didn’t you? My thoughts exactly!
See my post at #39...
Once a government runs health care they control costs by reducing lifespan. Like the fake unemployment numbers they politicize the statistics. The UK and Canada governments claim better results than the US. The fairness crowd demands that rich people not be allowed expensive treatments at any price, or be allowed to travel to the US to get treatment.
Remember, boys and girls, 50% of the doctors graduate in the lower half of their class. But this is a doctor playing as journalist.
Supposedly. Unless he is like those liberals who all say they served in combat, won scads of decorations and are against the war. Liberals like this author are big on that.
This is where I see this eventually going (fictional dialog)
Here is what will happen first:
"...I'm sorry sir...we cannot schedule that appointment for you in November 2010 to have that melanoma removed because you have not undergone your mandatory annual counseling after age 65...oh, of course you are right. I know you are only 62, but they did move the age down again this year...we have an opening in three months with the counselors office...would you like that?"
This type of thing is fully expected, but It will not be the people you will be FORCED to talk to in order to receive your care, nor the intentional delays in care that will be the most insidiously evil facets of this, in my opinion. It will be the conversations like this one below that will REALLY illustrate what it is all about:
(END OF LIFE COUNSELOR SPEAKING TO THE DAUGHTER OF A MAN WHO REFUSED TO PARTICIPATE IN HIS "END OF LIFE COUNSELING SESSION")
"...Hi Jan, how are you? I heard your father is resisting counseling. It must be difficult, I know. There just seems to be so much of that lately. I know I am only 40 years old, but I don't understand why people like your father are so opposed to this.
Personally, I went with my mother to her own counseling session. She was pretty angry and initially refused to go. She said that it wasn't right the HCRRA (Health Care Resources Redistribution Agency) moved the age lower by five years without even passing any kind of law or holding any debate, and I said that even though I agreed, there was nothing to do but comply. I had to tell her that the HCRRA and the IRS would begin automatically withdrawing money from her savings account when she was six months overdue, and she said she didn't care. I had to explain that they take half of the money available in her account every month until she either complies or there is no money left. I pleaded with her that her savings money was supposed to be given to me and my family along with the government bonuses to match if she engaged in the counseling and entered EEPSI (Early Exit Program for Seniors and Infirm). I had to plead that we really needed that money, since Tommy is going to college next year.
I thought she was really rude to the counseling agent, who was just a young woman only doing her job. Someone told me they are only hiring young women as counselors now, because the men who were doing it just got angry too easily and shouted at people to just "sign the damned papers". Hm. I tried to tell my mom why they have to do this, but she said they do it just to get rid of old people to save money.
The counseling agent gave my mom a copy of the book "Death is Joy". I read it, and it makes a lot of sense to me. Of course, when I was going to school, we didn't have to read it, but now they have required classes they take every year beginning in first grade.
Suzie is in third grade and is taking the course this year that deals with the chapter on keeping birth rates down, and Tommy is in his senior year where they cover the financial aspects of care for the elderly. He was so excited, he said that since they have implemented this national care program, the number of elderly people has dropped dramatically, so they can spend more money on programs such as monthly equality checks for the economically disadvantaged and reparations for the descendants of slaves. I think it is wonderful.
He asked me why so many elderly people are so selfish and refuse to accept counseling...I didn't really have an answer for him. Hm. Now, don't be defensive, I am not criticizing your father. I am just saying, it is a problem.
They had an hour-long program on PBS about this the other night, and they were saying how the people who are being selfish about this and refusing to take advantage of early exit programs like EEPSI that pay cash to their children (and also pass their savings along to their beneficiaries at a low tax rate) are being so self-centered because they grew up in a time where everyone was self-centered and were interested only in money for themselves. You know, they showed films from the days of the capitalists where there were people who had what they called 'gas-guzzlers", and they used to make so much more money than they needed to live comfortably, so many people were going without health care because they were taking all the money..."
“What is the article suggesting? That I should have left my 37 year old colleague (with two young children) to die on the floor? That I should have allowed my 53 year old neighbor to die on the floor of her kitchen in front of her 16 year old son?”
What are you suggesting? How could anyone, after actually reading the article, have to ask what the article is “suggesting”? Why are you suggesting that the article is suggesting that the article suggests leaving people to die “on the floor” when it suggests no such thing?
You mean, a sudden cardiac event, right?
The range of events for which CPR has even a vanishingly small chance of success is very narrow.
The range of events for which CPR is currently applied is enormous.
Take, for example, the patient found dead in bed at 5am nurse rounds. I have never, in 35 years, seen such a patient successfully resuscitated. Have you?
Have you ever seen one such patient without a preexisting DNR order NOT get CPR?
CPR is subject to more magical thinking than any other medical procedure of which I am aware.
You sound like you agree with the author, but what conclusion would someone come to after reading this section? This supposed "voice of authority" says that in his career, he has seen only one person survive, and that person didn't actually have any cardiac problems, but his heart stopped due to an oxygen shortage.
Words have meaning. If this supposed doctor didn't mean to say CPR is worthless, what exactly do YOU think he meant to say? Substitute any other activity in there for CPR, and the meaning is evident.
Non-medical people are not expected to make decisions about when to administer CPR and when not to.
If a lay person comes across someone who is unconscious, and it is determined there is no heartbeat and breathing, you administer CPR. The chances may indeed be small across the vast range of reasons a person might be found with no pulse or breathing, but do you want to advocate that a 13 year old Boy Scout who has had training in CPR try to determine if it is worthwhile or not?
I would hope not. You would want that boy to do what he was trained to do, as a bridge to letting a professional decide.
You seem to be trying to extract a meaning from a part of the essay, that a complete reading of the essay does not say.
I disagree. As I said, words have meaning. If the author did not mean to use that anecdote of HIS that CPR is worthless, then why did he put it in there?
Exactly. As I read this I immediately thought...Obamacare propaganda. Good propaganda has a ring of truth to it but leads you down the path ‘they’ want you to go. That is all this is and yes, we should expect to see more of this.
Bump for later.
“If I found out I was terminal...”
You are terminal, we all are. Time to get right with God now... :)
I would recommend “Vanity Fair’s” January issue with an article by Christopher Hitchens. In his terrible battle with cancer, he questions whether he would have gone to such extremes to live given the pain and horror of his present life. Sobering and upsetting.
Bookmark,Thanks for posting.
Lots to think about....
Lots to think about....
(For he saith, I have heard thee in a time accepted, and in the day of salvation have I succoured thee: behold, now is the accepted time; behold, now is the day of salvation.)
yes, I remember the agony of the doctors fighting with my mom and me doing futile care on my 96 year old grandmother, IV antibiotics given through a tube in her chest........meetings with the nursing home staff and their attorney who said we would have to get her parents to agree to no treatment...ridiculous.
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