I urge everyone to read “What Broke My Father’s Heart” in the Sunday New York Times Magazine, a superb first-person narrative by Katy Butler http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html?ref=magazine
Butler describes how our money-driven medical industrial complex has begun to dictate how we die—even if we think we have done our best to make our wishes known.
Here are a few excerpts:
My parents “had signed living wills and durable power-of-attorney documents for health care. My mother, who watched friends die slowly of cancer, had an underlined copy of the Hemlock Society’s “Final Exit” in her bookcase. Even so, I watched them lose control of their lives to a set of perverse financial incentives — for cardiologists, hospitals and especially the manufacturers of advanced medical devices — skewed to promote maximum treatment. At a point hard to precisely define, they stopped being beneficiaries of the war on sudden death and became its victims.”
I would add: Be careful of what you wish for. Too many Americans set out to “beat death” without realizing that death is not the worst thing that can happen to you:
“Thanks to advanced medical technologies,” Butler writes, “elderly people now survive repeated health crises that once killed them, and so the ‘oldest old’ have become the nation’s most rapidly growing age group. Nearly a third of Americans over 85 have dementia (a condition whose prevalence rises in direct relationship to longevity). Half need help with at least one practical, life-sustaining activity, like getting dressed or making breakfast. Even though a capable woman was hired to give my dad showers, my 77-year-old mother found herself on duty more than 80 hours a week. Her blood pressure rose and her weight fell. On a routine visit to Dr. Fales, she burst into tears. She was put on sleeping pills and antidepressants.
“My father said he came to believe that she would have been better off if he had died. ‘She’d have weeped the weep of a widow,’ he told me in his garbled, poststroke speech, on a walk we took together in the fall of 2002. ‘And then she would have been all right.’ It was hard to tell which of them was suffering more.”
That was in 2002. Five years later, in 2007, he was still alive, a prisoner in a body kept alive by a pace-maker.
Butler continues: “A few days before Christmas that year . . . my father developed a painful inguinal (intestinal) hernia. My mother took him to Fales [the family’s long-time physician] , who sent them to a local surgeon, who sent them to a cardiologist for a preoperative clearance. After an electrocardiogram recorded my father’s slow heartbeat — a longstanding and symptomless condition not uncommon in the very old — the cardiologist, John Rogan, refused to clear my dad for surgery unless he received a pacemaker.
Without the device, Dr. Rogan told me later, my father could have died from cardiac arrest during surgery or perhaps within a few months. It was the second time Rogan had seen my father. The first time, about a year before, he recommended the device for the same slow heartbeat. That time, my then-competent and prestroke father expressed extreme reluctance, on the advice of Fales, who considered it overtreatment.”
Now Katy’s father is too stroke-damaged to argue with Rogan, and the decision falls to her mother who is “anxious to relieve my father’s pain, exhausted with caregiving, deferential to doctors and no expert on high-tech medicine. She said yes. One of the most important medical decisions of my father’s life was over in minutes. Dr. Fales was notified by fax
“ Fales loved my parents, knew their suffering close at hand, continued to oppose a pacemaker and wasn’t alarmed by death. If he had had the chance to sit down with my parents, he could have explained that the pacemaker’s battery would last 10 years and asked whether my father wanted to live to be 89 in his nearly mute and dependent state. He could have discussed the option of using a temporary external pacemaker that, I later learned, could have seen my dad safely through surgery.”
The surgeon implants the pacemaker. Medicare pays him $461 and the hospital a flat fee of about $12,000, of which an estimated $7,500 goes to St. Jude Medical, the maker of the device.
“And so my father’s electronically managed heart . . . became part of the $24 billion worldwide cardiac-device industry and an indirect subsidizer of the fiscal health of American hospitals. The profit margins that manufacturers earn on cardiac devices is close to 30 percent. Cardiac procedures and diagnostics generate about 20 percent of hospital revenues and 30 percent of profits.”
Katy Butler learns that it is not uncommon for pacemakers to be implanted in patients whose bodies have already outlived their minds. She also leans that pacemakers can be deactivated. But when her mother asks the doctor who had implanted it to deactivate it. He says he is morally opposed.
Then Katy’s mother asks for her help. She agrees.
“Over the next five months, “she writes, “my mother and I learned many things. We were told, by the Hemlock Society’s successor, Compassion and Choices, that as my father’s medical proxy, my mother had the legal right to ask for the withdrawal of any treatment and that the pacemaker was, in theory at least, a form of medical treatment. We learned that although my father’s living will requested no life support if he were comatose or dying, it said nothing about dementia and did not define a pacemaker as life support. We learned that if we called 911, emergency medical technicians would not honor my father’s do-not-resuscitate order unless he wore a state-issued orange hospital bracelet. We also learned that no cardiology association had given its members clear guidance on when, or whether, deactivating pacemakers was ethical.
“(Last month that changed.” Butler adds. “The Heart Rhythm Society and the American Heart Association issued guidelines declaring that patients or their legal surrogates have the moral and legal right to request the withdrawal of any medical treatment, including an implanted cardiac device. It said that deactivating a pacemaker was neither euthanasia nor assisted suicide, and that a doctor could not be compelled to do so in violation of his moral values. In such cases, it continued, doctors ‘cannot abandon the patient but should involve a colleague who is willing to carry out the procedure.’ This came, of course, too late for us.)”
Read the whole story: http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html?ref=magazine and find out how Butler’s mother claimed her right to choose how she died.
I just finished a Fathers Day post about this excellent essay.
http://www.newshoggers.com/blog/2010/06/living-well-dying-well.html
The comments thread at the Times is overwhelmingly supportive of the writer and someone furnished links to sources for the recent professional guidelines for deactivating pacemakers.
I thought the Times Magazine piece was thought provoking in many ways. Clearly there are the issues of care coordination, the right role of specialists, and the role of money that makes many “professional” decisions suspect.
However, what about the supposedly self-regulatory nature of the “profession?” Maybe I’m off base but shouldn’t there be disciplinary action taken by medicine against a cardiologist who refused an appropriate request for an assistive device to be deactivated?
If an attorney were to so violate the wishes of a client (as expressed by the appropriate spokes person for the client), wouldn’t he or she at least be called before the profession for possible censure or sanction?
I am very concerned that physicians claim professional status – by which they mean that they should be allowed to self regulate and make important decisions about their work in ways that other workers are not permitted. However, as far as I can tell they fail to live up to the true status of a “profession” by policing themselves.
Worse, we have all succumbed to a slowly decaying moral standard of professional behavior where a great deal of behavior that is just wrong is accepted as business as usual.
Ritht say of Justice Brandeis once said: “death and litigation.” Most physicians would agree.
John–
Just read your post. IT’s excellent, and the news about patients’ rights is very important.
The short poem at the beginning of your post is wonderful
Yes John. Wonderful post. However, the “Implantable cardioverter-defibrillators, or ICDs, can impose a particularly heavy burden on terminally ill patients, continuing to send electrical shocks as the patient dies” had send a chill down my spine.
It is said that forcing tube feedings and IVs on dying patients can make the last days of their lives more uncomfortable. Why is it hard to let a patient go without eating? They feel that they are starving, according to those dying feeding tube patients that survived.
I made sure the nurses kept the feeding tube filled for my dad. I didn’t want him to feel that we were starving him to death, on top of giving him the wrong medicine (Risperdal).
Christopher–
I agree.
But as you’ll see at the end of the post, newer guidelines say that a doctor who doesn’t want to deactivate the pacemaker has an obligation to involve a doctor who is willing to carry out the procedure.
This, I think is the answer. (As long as the doctor is expected to do this in a timely fashion.)
I read the NYT Magazine article yesterday, and saw, also, a piece on CBS Sunday Morning about news anchor Jan Chorlton’s early onset Alzheimer’s diagnosis.
These were particularly touching because my own father is in the last stages of dementia and is in the Alzheimer wing of a nursing home. He, too, has a pacemaker constantly ticking away that my brother, at the time, thought was appropriate to have implanted even though my father was then declining. My father’s doctor was kind enough to tell my brother to think twice about this decision, but the decision had to be made quickly and he did it without consulting his five siblings.
My brother certainly regrets that decision now, as do we all.
One thing that I would like mentioned in all references to dementia diagnosis is the inadequate screening for thyroid disease and B12 deficiency. Both these conditions must be excluded before an Alzheimer’s diagnosis can be made. The tests usually given, however, have an extremely high false negative rate. Even though information on better tests is readily available online, few doctors have availed themselves of current recommendations.
kitINSTLouis–
I’m very,very sorry that your father also wound up in a body that was outliving his mind.
I’m glad you don’t seem horribly upset or angry with the brother who made the decision. He regrets it as did Mr. Butler’s wife, but a relative can easily feel that he/she Must try to help the patient.
In your case, the doctor tried to warn your brother, which must make your brother feel worse.
But in most cases,
the doctor is likely to be more like Butler’s doctor, and make any relatives feel that they must agree with his recommendation–and that time is of the essence–no time to consult with others.
Often, that just isn’t the case. We should all keep that in mind if we find ourselves in a hospital, serving as a patient’s advocate. Of course, as a layman, it is very hard to know what to think.
But it is worth insisting that the doctor answer the question: “Do I really have to make this decison now? Are you saying that if I wait 8 hours or 24 hours to consult with another doctor and my siblings,son daughter, etc., he/she will die?”
Greg: your statement about dying tube feeding patients that survived is curious. Can you provide a reference?
One of the things I have learned in my years as a nurse is forcing food and drink on patients who are actively dying only adds to their terminal agitation. They do better if they are not force fed, or given food/fluids through a tube.
There is also evidence that dehydration in this stage causes the release of endorphins that create a sense of amnesia and pain relief.
However, oral care, to prevent the mouth from drying out IS beneficial and often overlooked.
Panacea. Thanks for being curious.
It is said that tube feeding has not proven beneficial in dying patients with advanced dementia. However, it has not been proven that tube feeding is not beneficial in patients affected by drug-induced side effects. Patients who are genuinely hungry should be allowed to eat anything they please.
Data suggests that tube feeding is beneficial if the patient has a reversible illness, which is usually not the case in patients who have advanced dementia. Only a person who is actively dying, their body no longer absorbs nutrients and cannot utilize the nutrients for the work of the body. I’ve seen a number of residents in the nursing home this way. They actually refuse to eat.
Malnutrition is the inadequate intake of any of the required nutrients. Causes are the inability in the body, injuries, poor teeth, parasitism, disease, foreign bodies in the digestive tract, tumors, or an increased motility of the digestive tract.
If a human being is not able to obtain food for an extended period of time due to the unavailability of food or insufficient energy intake (being starved), this is starvation.
My father’s lethargy, listlessness wasn’t caused by any disease, it was caused by drug-induced side effects. Of which lethargy and listlessness were only two of them. I didn’t want him to feel they were starving him to death.
Panace & Greg
Panacea–what you say is what I have heard from palliative care stregtists.
Greg– I can well believe the effect of withdrawing food and water is different for different patients. You’re are knowledable enough that I’m sure you did what was best for your father.
But my end-of-life instructions ask that doctors not continue food and water. ..
Panace & Greg
Panacea–what you say is what I have heard from palliative care stregtists.
Greg– I can well believe the effect of withdrawing food and water is different for direction patients. You’re are knowledgable enough that I’m sure you did what was best for your father.
But my end-of-life instructions ask that doctors not coninue food and water. ..