How Doctors Die

[MBombardier]

My sis-in-law sent me this. I think it is really good, and expresses my sentiments exactly.

How Doctors Die

It’s Not Like the Rest of Us, But It Should Be - 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.

[Deb]

Great post, Marliss. I sent it to my family. I totally agree with it!

[Kari]

Love,
Kari

[Robin]

Marissa....

That was beautifully written and beautifully said!!!

Robin

[Lesley]

Marliss,
As a geriatric OT I spend a lot of time with patients in pain who hung on and on, and prayed to die. When they asked me why they had to suffer, and couldn't just go I had nothing to say. They were right. There was no reason on earth for them to suffer like they did.

My kids know never to allow any "heroic measures" on me.

[JLH]

I remember long, long ago my Dad saying to my aunt and uncle "no heroic measures" for my grandmother. I thought he was the worst person in the world. Then I grew up.

My brother (power of atty) has asked for a DNR for my Mom in her assisted living place. They asked her when she first arrived and she said, of course, she wanted whatever it took to keep her alive. That was then, this is now. She has very severe hip pain from a fall and surgery (but not replacement which she should have gotten) and also dementia. She is 95 and a half. There would be no quality of life.

It hurts so much to write this.............

[Stanz]

I'm sorry, Joan, she's lived a long life and is loved and that speaks volumes, IMO.

[MaggieRedwings]

Wonderful posting Marliss and I totally agree. The heroics and cost of it can be devastating to both the patient and the family. Just go quietly into the night.

Love, Maggie

[starfire]

I can't even express how much I agree with that post.

Love, Shirley

[Brenda]

Beautiful, thank you for posting.

Brenda

[Martha]

I too agree wholeheartedly with this article. I've thought before how ironic it is that most people truly want to die with dignity when their time comes, and not just be kept alive at any cost, and yet when it comes right down to it, the "system" and our human desire not to lose our loved ones causes us to want to do everything possible to keep them alive, no matter what.

Joan, my mom is also a few months over 95. She lives in a retirement center near my sister--first she and Dad were in independent living, then shortly after Dad died Mom moved to assisted living, then in Sept. she was moved to the dementia unit. Her dementia isn't bad, but she is clearly having memory problems, and was having a hard time managing herself in assisted living. Her physical problems are not severe--chronic pain from arthritis and osteoporosis are her major problems, but the memory thing: it's really hard on her to keep waiting for her sisters or her mother to arrive (they already passed away) or when she discovers for the nth time that Dad is dead, and she wonders why no-one told her. But other times she's very much in the present.

Growing old is hard, and being the children of people growing old is no picnic either.

Love,
Martha

[tex]

I've thought before how ironic it is that most people truly want to die with dignity when their time comes, and not just be kept alive at any cost, and yet when it comes right down to it, the "system" and our human desire not to lose our loved ones causes us to want to do everything possible to keep them alive, no matter what.

I think you've hit the nail on the head. Everyone wants to die with dignity - but not before they're convinced that it's absolutely necessary.

Love,
Tex

[Sheila]

It is one thing to decide to "fight" your disease, have chemotherapy and do everything possible to gain that "extra" year or two that is promised. What is not said, or at least not adequately explained, is the living horror of chemotherapy drugs when they don't work. Now you have a patient who is not only sick from the chemo but also suffering from cancer that is continuing to grow and spread. How do you know??

A friend has lymphoma and has undergone chemotherapy, bone marrow transplants, had a recurrence and went through similar therapy all over again. It worked again and he is symptom free and has now achieved another year of good quality life. Of course, he went through Hell to get that year but he has the possibility of living to be an old man. He also has the possibility of another relapse. He is willling to take the chance.

When my husband was going through his chemotherapy and getting sicker instead of getting better, I wonder why his doctor didn't call a halt to the infusions. Why he didn't say that Val's cancer was a very aggressive type of a very aggressive cancer? Would he have put himself through that Hell? Hindsight is great. For every patient who has a miraculous result from chemotherapy, against all odds, there is the patient who suffers horribly and dies anyway. Perhaps if you know for sure that you will die regardless of what you do or don't do, making that choice is easier. Where there is life, there is hope and it is hard not to be hopeful.
Sheila W

[tex]

Where there is life, there is hope and it is hard not to be hopeful.

Well said - the ability to have hope, and to understand what it means, is one of the basic things that make us human.

Tex

[Stanz]

Shelia,
There realistically are no rules, no rights, no guarantees with what happens when someone is given what appears to be a death sentence or who is given a sentence with some history of people who have survived a death sentence. I'm sure we all know people who have beaten the odds and I am so sorry for what you have been through and can only try to understand it. There is no justice involved here, cancer strikes the good people and the bad people alike, and there seems to be no justice, no sympathy, people wait for years for the bone marrow registry to find a match, or a partial match, and it sucks.

How many of us here have registered on the National Bone Marrow Registry? We are people who question here. My term of being registered ended last year because I am now over 61 years old. I registered several years ago because my daughters friend/classmate, Christine Pechera - Google that name - was in need of a donor. She used the media to further her cause, she was on TV, she is Filipino, which is one of the most difficult genetics to track and also has a high rate of cancers. Her father is, ironically, an Oncologist, her mom is a nurse, she was one of 4 children. She was a marrow donor when she was a teen-ager and kept her brother alive for another year, her sister has also had repeated bouts with cancer, she was pretty well given a death sentence. So far, the youngest brother is OK.

She found a donor, a partial match who saved her life, and she now has a clean bill of health, it is a miracle. Her donor only registered as a donor because his wife had cancer. He lived in China, he wasn't a likely match, but he was her last resort, before cancer killed her. She has now met her donor and she remains a huge advocate for the National Bone Marrow Registry.

I'm too old now, but I can't think of anything more wonderful than to wake up every morning like Christine's donor does and know that I saved a life. Everyone under the age of 61 should register to be a bone marrow donor. Christine could have called a halt at many times and just given up and died, but that's not who she is.

Althought MC isn't Cancer, those of us who ended up here came here because we question and if we didn't question we would all be doing what our doctors recommended. We didn't give up, we have hope, it isn't the same as cancer, but not completely w/o similarity.