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By Emily Friedman. First published in Hospitals & Health Networks Daily on August 6 2013
People have been arguing about care at the end of life for decades. We now have hospice, palliative care and physician-assisted suicide (the latter is legal in Montana, Oregon, Vermont and Washington), but the battle goes on. The questions are, "What's best for the patient?" and "Why can't we get there?"
In 1973, Dax Cowart (birth name Donald Cowart), a 25-year-old Air Force Reserve pilot in Texas, was checking out a tract of land that he and his father were considering buying. Unbeknownst to them, a gas leak had flooded the area with highly flammable propane, and when they turned on their car's ignition, the resulting spark caused a giant fireball.
They were both horribly burned. His father died on the way to the hospital. Cowart refused treatment in the ambulance, saying, "Can't you see I'm a dead man?" But the hospital where he was admitted chose to honor his mother's wishes over his own. He ended up blind, without hands or ears, and scarred over most of his body. He endured unwanted treatment for nearly a year; during most of that time he suffered in agony. He did not receive sufficient painkillers. He attempted suicide several times, but did not succeed. Through it all, he kept asking for an end to treatment and honoring of his right to die.
In the end, he became an attorney and a fierce advocate for patients' rights, a passion he continues to follow.
In 1989, an 86-year-old Minnesota woman, Helga Wanglie, broke her hip, was hospitalized, then suffered a series of medical reversals that ended with her being in a persistent vegetative state. Her physicians suggested that life support be terminated. Her husband refused, saying that she had always said she wanted everything possible done to keep her alive. I have also heard that she had said, "Only God can take a life." (How that squares with artificial life-support technologies is an interesting question.) The case went to court, where the judge rejected the hospital's claim that further treatment (including life support) was futile, and named her husband as her surrogate decision-maker. She continued on life support and died of multiple organ failure on July 4, 1991.
In 1995, baseball legend Mickey Mantle died of metastasized liver cancer, two months after receiving a liver transplant. The procedure had been controversial on many levels, including questions about whether he had been jumped to the front of the transplant line (there is no evidence of this) and whether he should have received the transplant, given that there was evidence that his cancer had spread (this question was never resolved). There were reports at the time that the transplant team implanted the liver even though the spread of cancer was obvious because, in the words of one physician, after removing his diseased liver, "We couldn't leave him like that."
There was another candidate for the liver prepped and waiting in an adjoining surgical theater. I do not know what happened to him or her.
Around the same time, my friend Kelly came to me in tears, saying that her aged, demented grandmother had received cardiopulmonary resuscitation more than 50 times in the week before she died in a nursing home.
We may think, "Surely these were anomalies, even then." But they weren't. "And surely we have progressed since then." Have we?
As I write this, former Israeli premier Ariel Sharon continues on life support in a hospital, more than seven years after suffering a massive stroke that left him in a persistent vegetative state. Although certain stimuli produce "significant brain activity," according to his physicians, there is no indication that he ever will return to consciousness. His family, however, wants the present situation to continue.
Similarly, Nelson Mandela, Nobel laureate and former president and hero of South Africa, remains in critical condition in a hospital, with conflicting reports about how he is doing. There was a court filing stating that he was in a persistent vegetative state, but that was later dropped. Meanwhile, apparently his family is quarrelling over where he should be buried, even as they insist that he is doing better.
On June 9, an article in the South African Sunday Times stated, "It's time to let him go."
A colleague of mine lost his best friend to aggressive multiple myeloma this spring. The hospital called while the man was in his last days at home, saying that his physicians wanted to do another scan. For what? To count the cancer sites? His family refused, and he died 72 hours later.
The same desire for just one more scan was expressed in May by some of the physicians treating my friend Martin's father, Sam, who was 94 years old, severely diabetic and suffering from hypertension, a bad heart valve, atherosclerosis and half a dozen other conditions. Shortly after his umpteenth hospital admission, Sam suffered a massive stroke. He could no longer speak, swallow or move. Unfortunately for the would-be scanners, his cardiologist nixed the procedure. There was also talk of moving him to a nursing home, where, it can be assumed, he could be kept around with artificial nutrition and hydration for heaven knows how long. His cardiologist also made short work of that. Sam was placed in palliative care and died peacefully, surrounded by his family, three days later.
Perhaps it is understandable that I had a profoundly negative reaction to the recently adopted slogan of a specialty oncology provider chain: "Care That Never Quits."
In a 2010 survey, Singapore's Lien Foundation found that the United States and Canada were tied for ninth among the nations surveyed in "quality of death." (The United Kingdom ranked first and India, last.) I was surprised that the United States did that well, although it was no shock that Britain was leading the pack. It is, after all, where modern hospice was born. And, as the great health policy analyst Rudolf Klein has observed, Britons tend to be fatalistic, whereas ours is "a perfectability of man" society. We don't tend to give up without a fight.
The problem is, of course, that sometimes — perhaps even often — the health care system won't give up on a patient, even when the patient has had enough. Dax Cowart must be wondering how long it is going to take before that changes.
Why can't we — patients, families, providers or any combination thereof — let go?
The reasons are multiple, complex and difficult.
Lack of advance directives. I have never understood why all of us don't have them. The last survey with which I am familiar found that only 42 percent of Americans have formally executed these documents, and I suspect that if we parsed that out by age, the curve would lean heavily toward older people. That's not surprising; young people don't spend a lot of time thinking about death, and that's just as well. On the other hand, Terri Schiavo, who was the subject of a nasty 15-year battle over life support and the futility of future treatment, entered a persistent vegetative state when she was 26.
An advance directive can ask for anything, up to and including "Give me the works." It is not a death warrant. It is an expression of wishes. It can be changed easily by the person who has executed it. And although hospitals routinely ask patients if they have such a document, they cannot require them to execute one, and that is appropriate in a free society. I guess.
That is, unless, unlike me, you have not seen the consequences of the lack of an advance directive, and the nether world into which that plunges patient, family and provider alike.
Providers don't necessarily honor advance directives, anyway. This is not exactly a secret. There is great complaint about "government running health care," but I sometimes think that attorneys are running it. If someone has executed a legal document, stating that he or she does want this and doesn't want that, it should be honored. Nonetheless, providers almost always consult family members or others about what should be done. In most cases, that works out. In other cases, guilt-ridden children or greedy in-laws or whoever can say, "Oh, no, that's not what Matilda wanted," and everyone is left in a quandary.
Anyone who has been through this comes out of it with less trust in providers.
Abandonment. It isn't just a matter of legal wrangling; there is a visceral undertone to it all. And that is a fear of abandonment. Patients are afraid of being abandoned by the health care system, lost in a terrible fog of pain, unmet needs and disinterest. Providers are loath to give up on patients; they haven't been taught to do so, and it goes against everything they were trained to do — that is, to cure. Pitted against incurable, terminal disease, they still want to fight on. It is completely understandable — and can be terribly damaging.
Who defines futility? Ethicists have been engaged in debate about this since dirt. The views at either end of the spectrum could hardly be further apart: On one end, there are those who argue that only the patient can declare that further care is futile (which is, of course, a bit difficult if the patient is in a persistent vegetative state). On the other end are those who believe that patients who are severely mentally ill, demented, comatose, or simply very old and frail should be denied care. (After all, during World War I, the German government declared that the institutionalized mentally ill were "useless eaters" and put them at the bottom of the food rationing priority list; most of them died of starvation.)
This question is, indeed, a toughie. Should patients who are demented, permanently comatose or dying get "the works"? Should those in intractable pain, for whom no available medication is effective, but who are not terminally ill, be allowed to die? What about a younger person who has developed dementia or another condition that is eroding his or her brain, although his or her body may survive for decades?
Involved in all this is the convoluted role of hope. Patients and families do not want to think it's over. Our belief in the "perfectability of man," our infatuation with technology, our belief in our ability to change fate — all this feeds hope. And most providers believe that there must be something else that can be done, that miracles happen, that medical progress might come to the rescue (hence, the sometimes ridiculous offers of participation in clinical trials to patients who are hours from death).
When baseball legend Ted Williams died, his son had his corpse placed in cryogenic freeze in the hope that at some future time he might be revived.
Money. One of the other ongoing debates concerns the fact that most health care spending is on those in the last year or six months of life. Well, duh — would you prefer that we spend it on those who are perfectly healthy? (Although what with cosmetic surgery, hair transplants and other procedures that are, in fact, largely performed on healthy patients, I'm sure that sum is not inconsiderable.)
Whatever the numbers are, the fact is that our current reimbursement system pays providers for treating the dying, rather than letting them pass in peace. A recent survey found that patients in the last six months of their lives see an average of 10 physicians. That does seem to be a bit much.
One element in all this last-minute spending is likely defensive medicine, reflecting the need of nervous physicians to avoid being accused after the fact of not doing enough to save Granny. The Helga Wanglie case, even after nearly 25 years, haunts American medicine.
It's obviously a sensitive issue; I remember, years ago, being incensed when a publication listed advance directives under "cost-control strategies." That's not what they are designed to do, even if it is often a positive side effect. But if we lump cost-containment in with the right of patients to determine the clinical circumstances of their deaths, we will further alienate populations that already are suspicious of the health care system, and we will most certainly dampen enthusiasm for executing directives.
As George Gramelspacher, M.D., director of the palliative care program at Wishard Memorial Hospital in Indianapolis, has said, "To have a patient dying of metastatic cancer spending three to four days in the ICU in the last weeks of life is not only costly, it's wrong."
I should add that with bundled reimbursement and the return of capitated payments looming on the horizon, there is the possibility that patients will be shoved into end-of-life care a bit too quickly, just as there have been complaints that DRGs have shortened hospital stays too much. But that can be dealt with, and the equation at this point is heavily weighted in the other direction.
The family factor. There is also the huge issue, which I have encountered time and time again, of family members not being willing to accept a loved one's death and trying to prevent it from occurring, even if that is what the patient wants. Putting Dad in cryogenic freeze is — thankfully — a rare event, but demanding that providers do everything is not. Sometimes it is guilt over not having spent enough time with or paid enough attention to the person who is now dying; sometimes it is a product of old angers; sometimes it is about money; sometimes it grows out of pre-existing conflicts with other family members. And if the patient does not have an advance directive, then, of course, the situation can easily become a free-for-all, with providers caught in the middle.
Politics. An earlier version of the Affordable Care Act contained a provision — which I supported and still support — paying physicians a whopping $50 to discuss end-of-life decisions with patients and to provide information about advance directives. As many physicians already do this, one could hardly have predicted that it would produce a firestorm. But opponents of the law, led by former Alaska governor and vice presidential candidate Sarah Palin, attacked this clause for creating "death panels." Accusations that the federal government was attempting to kill Granny once again echoed through the land, and the provision was dropped from the bill.
Although this particular fight was just one battle in the war over the ACA, there is no doubt that politics and policy have hindered appropriate end-of-life care in this country. Modern hospice was inaugurated in Britain in 1967, but it was not until 1982 that the U.S. federal government even stuck a toe in those new waters. The limited Medicare hospice benefit enacted that year was to sunset in 1986; instead, it was made permanent. But limited it is. Hospice patients are not supposed to live more than six months, which requires physicians to take on the role of seer. And in many cases, including, most famously, that of writer Art Buchwald, even severely ill hospice patients can live longer than that.
Furthermore, the epidemiology of hospice patients is changing. Although the benefit originally focused on cancer patients, most hospice participants now have other diseases, often chronic ones. That makes it even more difficult to predict how long they will live.
On top of all that, the majority of hospices in the United States are now for-profit enterprises, which is a far cry from the faith-based tradition that birthed the concept long ago.
Longer stays, patients who are not as acutely ill and the requirements of the market, among other factors, have combined to increase hospice costs considerably in recent years, thus putting the benefit on the radar of cost-minded members of Congress.
The other end of the spectrum. This discussion would not be complete if it did not mention the other end of the spectrum: patients who insist on termination of treatment when they likely could be healed, or at least could go on with acceptable quality of life. Why do they do this? At the head of the list is intractable pain, with which millions of people live. In some cases, there is little that can be done; in most others, providers are simply not allowed, or are afraid, to use drugs that would be far more effective. Heroin is one.
But the atmosphere created in this country by the "war on drugs" and "just say no" campaign has made many physicians so paranoid that they do not even effectively use what is available. And some treatments used in other countries are still banned here, due in large part to the irrational fear that patients within days of death might become addicted. So what if they do? They're hardly going to be out on the street mugging people.
The other key factor, which shoots through this entire debate like an arrow, is depression. I still have clear memories of what was said about one of my aged relatives, who at the time was hospitalized with metastatic cancer, hypertension and debilitation from several severe strokes. Her physician had diagnosed her with depression. I asked if she was being treated for that. One of my other relatives replied, "Why? After all, she's got a lot to be depressed about." She died in misery a few days later.
At one time or another, we all have something to be depressed about. But when that illness causes us to give up on treatment that could save our lives, or leads us to make self-destructive choices (such as suicide), lackadaisical attitudes about it on the part of providers or family could well be construed as irresponsibility, if not outright abandonment.
There are other reasons for patients choosing to opt out — fear of fiscal consequences, fear of nursing homes, fear of future pain and so on. And they have the right to opt out. But I think the health care system has a responsibility to help them make rational choices.
No easy answers. There is no question that this is one of the messiest areas of health ethics, policy and practice. There is little black or white; it's mostly gray, shrouded in the basic human fear of death, uncertainty about what is to come, conflicting incentives and outcomes that sooner or later involve loss. Little wonder, then, that the pioneer of end-of-life psychology, Elisabeth Kübler-Ross, toward the end of her life became interested in reincarnation and contact with the dead. A famous Law and Order episode focused on a pediatric oncologist (a very difficult specialty) who embraced spiritualism in a desperate attempt to deal with the deaths of her young, suffering patients.
We must all be sensitive to the subtleties, the multiple layers and the extremely emotional nature of these issues. But that does not mean we should stand by idly while things are done to people we love that we would never tolerate being done to a parakeet.
I have no magic potion to ease the pain that lurks everywhere in the world of the dying and intractably ill and those who care for them. But there are things that can and should be done.
Execute advance directives. Everyone older than 18 should have one. When people say they are too young, I remind them of Terri Schiavo. If people express a fear that they might be "terminated" too soon, I point out the consequences of not having a directive. We should reinstitute the modest payment to physicians for discussing the end of life with patients, and we should train physicians in how to do it. It should be part of the standard medical school curriculum. Use of advance directives should be divorced from cost-containment efforts; if they happen to be traveling the same path, fine. But that is not the point of these documents. And patients who have requested that they be kept comfortable and peaceful once they have terminated treatment should have that wish honored to the highest degree, with the sure, secure knowledge that they will never be abandoned or dismissed as "hopeless cases."
By the same token, we should combat magical thinking on the part of patient and provider alike, to stop the gruesome practice of dragging a dying patient into the ICU or a scanner when the results cannot possibly change the ultimate outcome. Ending perverse financial and other incentives that make this kind of thing attractive should also be a high priority.
Initiate palliative care early. In a widely praised article published in the Aug. 19, 2010, New England Journal of Medicine, Jennifer Temel, M.D., and colleagues reported that early introduction of palliative care (which is not, repeat, not the same as hospice) led patients with metastatic lung cancer to be less depressed and happier with their quality of life — and to live longer. Palliation provides emotional and social support, pain moderation and other services and should not be limited to the care of the terminally ill. In this case, patients benefited from the combination of palliation and oncology treatment more than from oncology approaches alone. No patient should have to live with constant, severe pain — physical or psychological — if something can be done.
Improve access to and practice of hospice. Use of hospice has increased steadily in this country, which is a good sign of change. But improvements are needed. The Medicare six-month limit should be relaxed, unless we want to insist that physicians acquire crystal balls and take up psychic prediction. Monitoring of outcomes should be strengthened — outcomes do matter, even with dying patients. Hospice and palliation should be combined, when appropriate. Incentives that lead to overuse or underuse of hospice should be curbed. And the reluctance of physicians and hospitals to "let go" of patients, even if that is exactly what patients have requested, must be remedied. The fact is that even now, most patients die within a matter of days of being admitted to hospice, when earlier admission was indicated. The entire health care system has to learn that referring a patient to hospice does not constitute failure, "giving up" or abandonment. It constitutes compassion and respect for the wishes of a fellow human being.
Physician-assisted suicide. This solution has many enthusiastic supporters, and it is legal in four states, with organizations such as Compassion & Choices lobbying hard for wider adoption. I'm afraid I can't agree. I understand the psychology of the idea — it's sort of the ultimate Note from the Doctor; it's formal permission to do yourself in. It reads physicians into the act. And, of course, for physicians, it offers impunity.
First, let me assure you that I did not just fall off the turnip truck. I know full well that what has become known as physician-assisted suicide happens every day, when physicians or others provide patients and families with enough medication to end the patient's life. I also recall a physician telling me that he did it often, and that patients never actually used the drugs; knowing that there was a way out gave them the strength to go on.
I encountered something similar when a close friend was in a hospital ICU following an organ transplant, hopped up on steroids and experiencing the hallucinations that are common in such situations, as well as the labile emotions that steroids produce. I offered to stay up and read to him through the night. He thanked me and said I might get a call. I never did; he later told me that knowing I was available to help led him to put the hallucinations and emotional roller coaster in perspective, and he went to sleep.
But those were private deals. My concern is with the impunity inherent in legalizing assisted suicide. Physicians and, to a lesser degree, nurses enjoy great power in our system, and I worry about rogue members of both professions. Many of this nation's most prolific serial killers were health care professionals, including physician Henry Holmes, who may have killed 200 people; Michael Swango, about whom I have written before; and nurse Orville Lynn Majors, who may have murdered more than 100 patients.
Although I am not saying that every physician or nurse who supports assisted suicide is a potential serial killer — not hardly — I do believe that there has to be both oversight and accountability in such cases. And because there are effective alternatives, I don't see the need for this one.
Jack Kevorkian, whom I also consider to have been a medical serial killer, gassed patients in the back of a van. Perhaps he made a contribution in revealing the terrible suffering of too many severely and terminally ill patients, but I don't think his solution constituted death with dignity.
Private pacts. If there is any more damning evidence of the failure of the health care system to properly care for the terminally ill, this is it. You have no idea how many of my friends have made private pacts to kill each other if they end up facing persistent vegetative states, unending pain or unacceptable quality of life. In many cases, they fear institutionalization in a nursing home. These agreements are unwritten, and my friends make jokes about being on the next plane with a pillow. Other pacts involve helping the ill person commit suicide.
There is no easy way to say this, but these agreements — in which I have not participated, nor do I wish to, although I won't rule it out entirely — reflect a fear of the health care system itself.
I will always remember the words of a physician who was told the story of Sam, the elderly man about whom I wrote earlier in this column. Learning that Sam's cardiologist refused the scan and transfer to a nursing home and insisted that he be placed in palliation, this physician said simply, "Sam was lucky."
When we get to the unfortunate point at which people are so terrified of the health care system that they ask their friends to suffocate them if they get very sick, we have to stop and rethink what we are doing. We have to reassess what constitutes life, the quality thereof, and the role of providers and patients in determining what should happen. As a friend of mine told a group of oncologists concerning his and his terminally ill wife's decision to end aggressive treatment, "Be sure that the lives you save are worth living."
This article is dedicated to Dan Callahan and to the memory of Linde Klein and John Sbarbaro.
The American Hospital Association has issued publications on advanced illness management strategies, which are available on the AHA website (www.aha.org/about/org/aim-strategies.shtml).
Caring Connections offers forms for advance directives for every state and the District of Columbia (www.caringinfo.org/i4a/pages/index.cfm?pageid=3289).
So do the AARP (www.aarp.org/relationships/caregiving/info-03-2012/free-printable-advance-directives.html) and many other organizations.
Make sure your friends and family know your wishes, and designate a health care surrogate decision-maker in case you are unable to express your preferences yourself.
Copyright © 2013 by Emily Friedman. All rights reserved.
Emily Friedman is an independent writer, speaker and health policy and ethics analyst based in Chicago. She is also a regular contributor to H&HN Daily and a member of Speakers Express. The opinions expressed by authors do not necessarily reflect the policy of Health Forum Inc. or the American Hospital Association.
First published in Hospitals & Health Networks Daily on August 6, 2013
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