Who decides when medicine prolongs dying, not living?

Doctors at Gundersen Lutheran, long a pioneer in ensuring that the care provided to patients in their final months complies … Continued

Doctors at Gundersen Lutheran, long a pioneer in ensuring that the care provided to patients in their final months complies with their wishes, ask a terminally ill patient how staff members can help her be comfortable. (Sher Stoneman)

The Spirited Atheist is back, after a break for obligations associated with impending book publication. One of the most irrational news developments I missed last month (there were so many) was President Obama’s abandonment of a modest, commonsensical proposal to allow Medicare to pay for voluntary consultations between patients and their doctors about end-of-life care. This was a cave-in to the extreme religious right, which takes the absurd position that merely talking with your doctor about this subject constitutes a “death panel.”

In my book Never Say Die: The Myth And Marketing of the New Old Age, I discuss the huge gap between Americans’ wishes about end-of-life care, as expressed in numerous public opinion polls, and what actually happens in too many instances–futile, expensive, often painful procedures performed on people too sick to leave the hospital alive–much less survive with a decent quality of life. Ninety percent of Americans say they want to die at home but only 20 percent do so. Half of Americans die in hospitals and another 25 percent in nursing homes, after a long period of suffering from chronic, incurable conditions that finally become untreatable. An astonishing one out of five die in intensive care units, often unconscious, isolated from loved ones and hooked up to machines that do nothing but prolong an inevitable death.

This happens partly because of the natural human tendency to procrastinate about addressing painful subjects with relatives and partly because doctors are often too pressed for time–and too uncomfortable with death and dying themselves–to respond when patients do bring up such issues. Just try to get a straight answer out of an oncologist, as an 89-year-old friend of mine did when her doctor advised another course of chemotherapy even though her cancer had metastasized to her brain. “Doctor,” she asked, “what chance is there that I’ll have a few months more of life that I can enjoy with my family?” He replied, “We can’t know these things.” She replied, “No, but we can use our common sense,” and declined further treatment. She died a month later in hospice, surrounded by her children, grandchildren and great-grandchildren. What if she hadn’t been clear-minded enough to to speak for herself? What if her children, out of love, guilt or a combination of the two, had subjected her to treatment that she wouldn’t have wanted? That is what advance medical directives are intended to prevent.

Voluntary consultations with doctors are not about physician-assisted suicide–or about denying aggressive medical care to anyone who wants it. They could, however, be the first step for adults who want to make their wishes known, in a legally binding way, before a crisis arrives. A conversation with a doctor might encourage people to go home and have conversations with either their spouses or adult children about what they do, and do not, want to have done to them medically if they are unable to speak for themselves. In most states, not only a living will but the designation of someone else as a health care proxy–a person legally authorized to make medical decisions if the patient is unable to do so–is needed.

There are two basic positions about medical care as the end of life approaches. The first is, “Do everything–no matter what.” The second is, “Do everything possible only if there is a reasonable chance of my recovering.” Only a third of Americans, in a fascinating survey conducted by the Pew Center for the People and the Press, say they would tell their doctors to “do everything” regardless of the likelihood of recovery. Yet only 30 percent of Americans now have living wills and even fewer have named a health care proxy. And more than 40 percent of adults have never even had a conversation with their parents about what either parent wants.

So why is the religious right so opposed to providing a forum in which such conversations might begin? Leon Kass, a conservative bioethicist and chairman of the President’s Council on Bioethics under George W. Bush, is a longtime opponent of living wills because “it’s preposterous to think that we can have the kind of foreknowledge to cover the myriad of circumstances in which we may find ourselves. Nor can you accurately pass judgment on how you’re going to feel about your life in a different circumstance…No kind of legal approach and no kind of medical approach are going to take the place of a loving, prudent, caregiver on the spot.” And what if there is no “partner,” prudent or otherwise–as is the case for most women over 80? Of course it’s preposterous to assume that we can know exactly how we will feel about every unknown circumstance in the future, but there is much we do know.

My mother knew, when she was in her 70s, that she never wanted to die attached to machines in an intensive care unit. She wrote down her wishes, appointed my brother and me to act for her in the event that she cannot act for herself, and–thanks to her–we are in no doubt about what to do. Her views at 90–when she is obviously much closer to death–have not changed at all. I hold the same views. I also know that I would never, if I had Alzheimer’s disease, want to undergo major surgery on, say, my heart and prolong a life that could only be a continuing descent into darkness. I may not know exactly what I would want in every conceivable circumstance, but I know a great deal about what I would want in most circumstances. To say, as Kass does, that because we cannot control everything, we should not try to control anything, is an insult to human intelligence and reason.

The heart of the religious right’s opposition to advance planning for end-of-life care is its disdain for human reason. It should be noted here that most mainstream religions have no objection at all to living wills, although many do oppose phsyician-assisted suicide–or any other kind of suicide.)The right to refuse treatment is viewed by nearly all religions in a very different light from suicide. I do favor the right to physician-assisted suicide (and will write more about this subject in future columns), but this has nothing to do with the kind of advance directives that my mother has drawn up to ensure that her medical care reflects her values. As Oregon’s physician-assisted dying law has demonstrated over the past decade, few people will ever avail themselves of the suicide option even in extreme circumstances. But the question of whether we want medicine to be used aggressively to prolong our lives–however unbearable those lives have become–is one that nearly everyone eventually must face.

If more Americans are not encouraged to think about what kind of care they want and to spell out their wishes to doctors and relatives, we are headed for the worst kind of health care rationing–based solely on age–in view of the rising cost of Medicare as the baby boom generation ages. Right now, one-third of the entire Medicare budget is spent on care in the last year of life. According to a study by the Dana-Farber Cancer Institute, an astonishing one-third of the total–much of it in ICUs–is spent in the last month of life. If even a third of Americans decided, after consultations with a doctor and their families, that they wanted to draw up an advance directive like my mother’s, the saving to Medicare would be vast. No, we cannot know exactly when the last year of a life begins, but most of us have a pretty good idea of when the last month is at hand. As my 89-year-old friend said when she declined further chemotherapy, common sense tells you that if you have a cancerous tumor in your brain and cancer in your bones at such an advanced age, it makes sense to spend your remaining time saying good-bye to the people you love instead of injecting more nausea-inducing poison into your body in an effort to live an extra week or month.

Among the boomers, there is a pervasive fantasy that we will drop dead of a heart attack at some point in our nineties, preferably while making love, skydiving, or climbing a mountain. Wouldn’t it be pretty to think so? In reality, most of us will endure a long period of disability, either mental or physical, before death. It is up to the individual, insofar as possible, to take responsibility for decisions about end-of-life care and not relegate the choices to an impersonal institution, a doctor, or even to a relative whose values may be very different. The time to think about these matters, and talk about them with medical professionals as well as loved ones, is when we are well–not when we are already sick. As for those who believe all such matters are the province of God alone, they are welcome to rely on the mercy of the God who presumably decreed that Alzheimer’s, Parkinson’s and the many other age-related killers and mind-destroyers were part of his divine plan.

Susan Jacoby
Written by

  • WmarkW

    Gee, Susan, couldn’t you have made your return a little less of a downer?

  • lepidopteryx

    A dear friend of mine recently passed away – we lost him to cancer. He had taken chemo years before, gone into remission, and it returned. When it did, the doctors told him that more chemo would add, at most a few months to his life, and that during those few months, he would have three to four days of feeling like hell for every day he had of feeling decent. He decided that it wasn’t a good enough trade-off, and opted for a hospice team and palliative care at home. He died in his sleep, in his own bed, with his beloved dogs beside him, about a month later.

  • amelia45

    Good for you and thank you, Ms. Jacoby.My father died at home, electing to have no further chemo or radiation when cancer returned; treatment promised a few months of misery. We had Hospice help – a wonderful organization who brought help and peace to my father’s leaving and our staying. My mother told my sister and I how far she wanted “extending life” care to go. Being Catholic, she wanted cured what could be cured, or even tried. But, she did not want feeding tubes or oxygen masks when that was what was required to live on and on and on, with no real cure for whatever her final disease was. She had alzheimer’s disease and knew it, but hoped her heart would give out first. It didn’t – she lived to her early 90’s. If you live in Georgia, you can get information about planning for end-of-life care and designating an agent for health care by going to http://www.critical-conditions.org. This organization has a booklet available in lots of places across Georgia. It is free to Georgians but costs $15 for non-state residents.

  • Linda813

    My dad died two days ago of pulmonary fibrosis. That means that there is scar tissue in the lungs and there is no cure or hope for imporvement. After a bout with pneumonia a few weeks ago he decided that he did not want to fight for every breath anymore. He refused all meds and treatments at the hospital and ended up in a nursing home. He then refused all food and water. He wanted so much to be “put down” and have his suffering ended. He said that he would have never let any of his pets suffer the way that he was suffering. It was a long, slow, painful death for him. I wish, too, that the family did not have to watch all this suffering. Other that starving one’s self to death, I wish there could be a more humane, comfortable, and acceptable way to come to the end of one’s life.

  • PSolus

    Susan,”Who decides when medicine prolongs dying, not living?”Ideally, the person who is dying, with the aid of whoever that person seeks for assistance.Also, ideally, the person who is dying has the right to decide to hasten his/her death, with the aid of whoever that person seeks for assistance, and to implement whatever is necessary to humanely hasten his/her death.

  • WmarkW

    I know this isn’t the point of the article, but I come from a family of good genes, and never had to watch a non-smoking relative die without dignity or before 83.The President really had to delete the consultation provision to keep that distraction out of debate. There are too many serious issues about constitutionality and severability, wildly differing budget projections, and concerns whether promises about recission and illegals getting benefits will come true, that end-of-counseling needs to be detail issue set aside for later.That said, the cost of dying is a very important part of the budgetary discussion along with the moral issues.

  • acebojangles

    This death panel business illustrates an unfortunate truth:For politicians in general and conservatives in particular, controlling the terms of a debate (often to generate and capitalize on fear) is more important than being reasonable or correct. Why win a debate when you can scare people by suggesting that the government is going to kill them to save money?

  • Nosmanic

    Thank You Sasan for taking an issue straight on. For all Christians out there read the bible… literally and while your at it the constitution I’ll know if you did because if you don’t… You’ll argue with me.

  • justsit

    Several posters have mentioned the wonderful end of life care given by hospice, and, indeed, it is extraordinary. One problem that arises frequently, though, is the physician’s reluctance to make a referral until the very last minute. Hospice is most effective when given sufficient time to get to know the patient and loved ones and to make seamless care arrangements. When the physician waits until the patient is actively dying, all hospice can do then is provide pain medicine. It is often up to the individual or family to suggest hospice, as the physician is heavily invested in ongoing treatment. As a former hospice nurse, I can attest to the fact that many doctors are indeed not only very uncomfortable with death and dying issues, they are frequently unfamiliar with the signs of impending death, and overestimate the patient’s life expectancy, sometimes by many months or even years. In hospice, the focus shifts from hope for a cure to hope for comfort, a distinct shift from the medical model, and often unknown territory for MD’s. Then, too, there are sometimes blatant control issues.

  • mrbradwii

    Hmmm, an enumeration of provisions that can be spoken about in a consultation. How much more government can you ask for?Sounds like bureaucracy meets special interests in an effort to find a way to charge different rates for different “services”.Obama was right to remove it in order to remove government interference with doctor and patient discourse.Old people go to doctors a lot. Yearly at least and more when something happens. At each of these events, consultation happens, prognoses are prognosticated and questions asked. To force doctors to account for the free speech that they engage in with their patience and stuff it into government-approved categories for state-approved compensation is ridiculous.Thank you president Obama. One minor win for the future.Speaking of WTF:From my experience with dying family, pneumonia is the killer that upsets all end of life plans. In a nursing home, they’re ill-prepared to handle the curse of pneumonia and make the patient comfortable. Next step is the hospital.Cancer, piece of cake, home hospice situation. Administer meds, say goodbye and wait. 1-2-3.Pneumonia, you need antibiotic drips, fever reducers, and isolation to prevent spreading. i.e. more skilled care and resources. This kind of care needs to be available outside the hospital. And simply must accessible in nursing homes. I also suspect that part of the reason residents are shipped to hospitals is the “score” of how many die at the home.There is going to be a burgeoning market for medical services and the service industry is hamstrung or paralyzed by the current and coming healthcare “systems”. It can’t be this hard to figure out. Lack of competition, price-gouging, incompetence aren’t addressed by any proposal out there.Obama is right, it’s time for all sides to pony up ideas that open up the bottleneck we’ve imposed upon ourselves.

  • haveaheart

    “…common sense tells you that if you have a cancerous tumor in your brain and cancer in your bones at such an advanced age, it makes sense to spend your remaining time saying good-bye to the people you love instead of injecting more nausea-inducing poison into your body in an effort to live an extra week or month.”After my mother died in a wonderful hospice facility, I spent a couple of years volunteering in that facility. I saw many, many people die just as Susan describes above, with their families and friends around them. I also saw many people who had no family or friends but who were able to die as though they did because hospice care gave them love and respect in addition to painkillers and great food.One of the most moving things I experienced while working there was the amazement on the faces of visitors who would look around the beautiful facility and say, “Wow, I’d love to be able to afford this when my time comes…,” at which point I’d explain that everyone was welcome because Medicare would pay for those who couldn’t afford the cost.Quite simply, it is phenomenally cheaper to maintain a dying patient comfortably in a hospice facility than it is to keep the same patient in a hospital bed. This is fiscal sanity that the tea baggers should understand.Furthermore, for all their raving about a “nanny-state” making all the big decisions for citizens, they can’t fathom a scenario in which we let people decide for themselves how much or how little treatment they want or how they want to die.That hospice and palliative care options exist for people but aren’t routinely discussed by their doctors is criminal. The medical profession doesn’t like to acknowledge “failure,” and for many oncologists, pulmonologists, cardiologists, etc., death constitutes failure of treatment. This kind of absurdity then contributes to the reluctance of patients and their families to try and discuss palliative care as a viable option.Americans — the dying and their caregivers alike — are hungry for information about death: what to expect, how to manage pain, what to talk about with the dying person (or, if you’re the dying person, how to talk about death with your loved ones). Yet the religious right slaps down those medical professionals who would relieve the sick and dying of their anxiety simply by talking with them.Everyone dies. Most people are not lucky enough to have death come quickly or while they’re asleep. So dying is a critically important discussion that everyone needs to have with their physicians and potential caregivers.Yet, by minimizing the options, the tea baggers are guaranteeing that terminally ill patients will be able to continue suffering right up until the last treatment has failed. After all, it’s their right as Americans to live their lives to the last drop. They’re entitled to those last weeks or months of agony and misery, and, by God, the Tea Party will make sure they get what they are owed.

  • Farnaz2Mansouri2

    Susan,Thank Non, you’ve returned. The bottom line is how to get these God-forsaken religionists out of Congress, the Court, the presidency.Couldn’t they go to my country, Iran? Or, perhaps, Saudi Arabia, whose Constitutions (such as they are) synchronize with their agendas?The Constitution is supposed to protect me from Christians dominating my reproductive choices and death, is it not?Can one get them out of one’s bedroom and bar them from one’s hospice?

  • Counterww

    Susan uses this as an excuse, as a radical atheist, to attempt to demonize those that believe in God and somehow we are responsible for suffering of those that are coming to end of life decisions.The issue is not the belief in God and how it relates to those decisions, it is educating people on what THEY want when the end of life occurs in numbing pain where there is little to no hope in beating the disease that has taken over, or that your body is just too old, or the mind is demented etc etc. I have experienced this with a loved one , the mother of my wife. All I can say is that it comes down to making these decisions you have to plan them before you become incapacitated as the laws, hospitals, and institutions just don’t always follow through even when your intent in a written document is plain .I am disappointed in Susan’s politicizing this and attempting to blame the religious right. Being a believer I can tell you she is mistaken and obviously does not get out to talk to believers about this topic.

  • Farnaz1Mansouri1

    Hi Counterww,I don’t quite understand why you’re upset with Susan on this. What she says is true. I recall the controversy quite well. What exactly are you taking issue with?Frankly, I’d like to see a column on the barbaric conditions operating in some hospitals, but I suppose that has nothing to do with religion. ?

  • slowe111

    Thank you Susan for bringing this topic into discussion. I wonder how much of our shared national medical expenses are used to keep un-recoverable patients barely alive for a few weeks or months or even days at HUGE expense that we ALL pay for via insurance pools or Medicare? Follow the money. Is there an incentive for hsopitals, doctors, pharmaceuticals etc. to keep these patients alive as revenue streams? Whare are the economics of this issue? Are dying patients being “used” to balanace the books?

  • YEAL9

    Bottom line: Morphine solves most of the issues.

  • onofrio

    Will it solve you, Yeal, in your ledger domain? Or ab-solve?