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.
It’s an excellent specimen of its ilk, and a timely
reminder of what those doing the planners have in mind,
so thanks for the OP. However, we here at FR have become
rather sensitized to people who aver “they are only
airing the issues” etc. when they are really advocating
e.g. medical abandonment. It’s not that easy to write
a really short introductory OP about one’s motives for
a post either, so I’m not telling you that you must do
so, but it’s a good idea. *especially* if you truly are
wondering “what does this person mean” as many would
seeing this for the first time, by which I refer to many
who *aren’t* on FR so don’t have the benefit of the
background it provides.
But all too often a DNR, actual or fictitious, means
“DO NOT TREAT”. Nor do I trust those who advocate
withholding *effective* medicat treatment to competently
deliver palliative care.
I refer you to “rlmorel”’s posts on this thread for discussion
of unnecessary medical interventions, which do occur.
My mother’s doctor’s partner did not want to treat my mother for pneumonia. Our discussion got really nasty, on her part. I just said treat her now and walked away. It’s a long story but she did not die that night. So I can say I have seen the enemy and won one battle and I know I can fight again if I must.
Alright, I’ll keep that in mind in the future. I haven’t been on FR all that long, so I’m still learning the general forum culture here.
Thank you!
this sounds about right, because we see the side effects of treatment and chose the “hospice” way: To live life comfortably until the Lord takes us..
My husband retired here to the Philippines rather than the US partly so he can live at home but partly because he doesn’t want a lot of stuff done if it’s his time to go....NO cpr, NO dialysis, NO feeding tube...
On the other hand, my brother is on an expensive chemotherapy medicine for four years that has kept him alive and well enough to work. I advised him to start it although experimental at the time because the studies of stopping the cancer growth were good.
I believe that too. My mom was bedbound for the last 18 months of her life, totally unable to take care of herself. We had her at home with round the clock nurses (not everyone can afford that, I know...nursing care round the clock back then ran around $1200 a week, which is cheaper than a nursing home, but nursing homes can be covered by insurance, round the clock nurses aren't
But I'm talking about forcing on someone an intervention that they would not have chosen for themselves, in the case of my FIL. He didn't want a ventilator, he didn't want a feeding tube. He was 93 years old, and unconcious, but had laid out his "desires" as far as medical intervention way before he was terminal. Quality of life is one thing, forced medical intervention just because we have the technology is quite a different matter, IMO.
It was a blessing that you and your father had that time together. Thanks for sharing.
It does seem strange to me that a positive thing could come out of something so negative, but...it did...
I agree.
My grandmother’s illness was back in the 50 and 60’s when people took care of their families.
Having recently finished medical school I can assure you this attitude is drummed into Doctors. Over and Over again they hear about how much money is spent in the final years of life. In one sense DUH of course in the last 6 months of life. When you are fighting death it's expensive. The thing that's lost is that the experience gained on an 80YO man is excellent training for making sure a 30YO man makes it through if some bug or bacteria or accident should befall him.
Pancreatic cancer is very rare so the analogy isn't very applicable to the things that most people end up in the hospital for. But young people end up in the hospital and they end up in the ICU. Imagine you stop trying to fix all those 80 year olds. Now that 20 to 30 something gets a doctor that deals with 20% of the ICU patients he/she used to. We are going to start losing a lot more young people because Doctors aren't going to have the training and more importantly aren;t going to innovate and push medical technology any further.
Lastly let's take a simple thing like a code. Codes are run all the time in hospitals people get chest compressions and drugs. The simple fact is that more often than not people don't come out of them. Is that a reason not to do them? You do save some people. They are not fun for the person on the receiving end. But if it buys you 2 more years of life then why not. The doctors with the attitude in the article will say oh you're assaulting the person and interrupting the natural process of dying. But the flip side is you could be home and in hours of agony before you die. It's not always peaceful. It's not like you get to pick your death out of a catalog.
I'll get off my soap box but that attitude really gripes me. Why go into medicine at all if you didn't want to try to help people stave off the inevitable. In reality that's all medicine is trying to do is delay death.
Is it possible that for some hospitals they have such a policy but never heard of one. The liability if a hospital didn't give basic care and treatments ordered by the doctor and all things that are not extraordinary would be high. Cha Ching is not something hospitals want to hear in a court. Its the doctor that determines what treatment the patient gets and he does it in writing as part of the patients chart...
If the patient spikes a fever and you think they won't be given aspirin you are way off. If the patient has a bed sore, the doctor orders the treatment and treatment is given....depends entirely on what the doctor puts in writting and they aren't going to hang themselves by being stupid.....(Have know a few doctors that were stupid) but some stupid order is usually not followed, it is reported and verified with a call to the doctor....I had a doctor write an order for a specific medication and I was medicine nurse that day. A call to pharmacy with the med. ordered and pharmacy called the doctor and got the order reversed...
Some times an order is given by mistake. The doctor is usually grateful it was caught by nursing staff or pharmacist...
I’m truly grateful for your comment. In substandard
facilities, however it can have that effect. I’ve heard
of it being discussed by medical professionals who were
as outraged as you were. I didn’t mean to imply it was
a formal policy.
I was able to care for my mother in the last 6 weeks of her life only because I was a nurse...thats not possible for everyone...
May she rest in peace.
God Bless you.....
Every case is different....
I'm so sorry for your loss.
My older sister died..in 2000..of a brain stem stroke. She was also 49!! It broke my heart!!
She was taken off of the ventilator after 24 hrs. Because there weren't any brain waves....and she wasn't "there". No pain, no feeling.....
I understand your post. I've been there, on both sides of the bed.
Regards,
Your post is beautiful. So sorry for your loss of your wife. I can’t imagine the pain, but you have peace knowing you made the right decision for your wife and yourself.
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