Death comes for us all, and the desire to ease into that death is as ancient as humankind. The idea that sometimes it is better to die quickly and in control of that death-rather than linger in pain and misery once impending death is certain-has troubled yet comforted humankind. In Doctor, Please Help Me Die, author Tom Preston, MD, presents a thorough overview and discussion of end-of-life issues and physician-assisted death in America. Doctor, Please Help Me Die traces the history of patients seeking relief from suffering at the end of life and discusses how cultural and professional customs have inhibited many doctors from helping their patients at the end. Preston shows how most doctors fail their patients by not discussing dying with them and by refusing to consider legal physician aid in dying-ultimately deceiving the public in their refusal to help patients die. He discusses the religious, political, and legal battles in this part of the culture war and gives advice to patients on how to gain peaceful dying. Preston presents a strong argument for why every citizen who is dying ought to be extended an inalienable right to die peacefully, and why every physician has an ethical obligation to assist patients who want to exercise this right safely, securely, and painlessly.

DOCTOR, PLEASE HELP ME DIE

By Tom Preston Janice Harper

iUniverse, Inc.

Copyright © 2013 Tom Preston, MD
All right reserved.
ISBN: 978-1-4759-6379-3

Contents

Acknowledgments....................................................ixIntroduction.......................................................xiChapter 1 A Short History of the Right to Die.....................1Chapter 2 Framing the Issue.......................................20Chapter 3 From Hippocrates to Lasagna.............................50Chapter 4 Physician, Heal Thy Patient.............................73Chapter 5 Medically Managed Dying.................................90Chapter 6 Professional Imperatives................................111Chapter 7 Legal and Political Issues..............................127Conclusion.........................................................139Recommendations....................................................150Notes..............................................................161Index..............................................................173

Chapter One

A Short History of the Right to Die

IF TO KILL IS a cruelty because it robs one of life, what does it mean to rob a person of death? Society has long grappled with the question of whether it is morally acceptable for physicians to end the suffering of someone who is dying. But I ask a different question here: Is it morally acceptable for physicians to refuse to do so? If a physician can ease a person's suffering and make his or her final moments of life endurable and peaceful by helping the patient die, is it wrong to refuse to do so? Could nonaction be a greater cruelty than action when someone's pain is agonizing and readily ended by medication or other help from his or her physician?

Consider the case of Heracles. Heracles, or Hercules as he is more commonly called, was the half-god son of Zeus and the beautiful, mortal Alcmene. Zeus endowed his son with superhuman strength, an attribute that made him a rather troublesome child but nevertheless enabled him to conquer pretty much any challenge he was presented. When Heracles found himself in a bit of a mess for slaughtering his family (his superhuman strength surpassed only by his superhuman temper, a temper brought on by madness inflicted by his vengeful stepmother, Hera), he was punished by having to endure a series of superhuman feats. He strangled a lion, traveled to hell and back, killed a multiheaded hydra monster, and accomplished several other highly unpleasant, dangerous, and seemingly impossible tasks that, through brute strength and unwavering persistence, he managed to pull off with seeming ease. But for all the painful trials Heracles had overcome, none was as great as enduring the horrific agony of death. Tricked into donning a beautiful cloak that had been soaked in a powerful poison that burned the flesh off anyone who wore it, Heracles screamed in agony the moment the lethal robe touched his skin. He flung off the robe, but alas, all his flesh came with it, skinning alive the man of superhuman strength. Suffering unbearable pain, the immortal god demanded his son help him die.

"You are asking me to be your murderer," the young man answered, refusing to comply with his father's dying command.

"No," Heracles replied, "I am not. I ask you to be my healer, the only physician who can cure my suffering."

But his son refused to help him. Powerless because the only healer who could help him refused to do so, Heracles was forced to die slowly and in great agony. Unable to withstand the pain any longer, he ordered his funeral pyre built. Once it was done, he threw himself into the flames to end the excruciating torture. To burn alive was preferable to the agony of suffering any longer.

Flash forward to the twentieth century, and a woman of ordinary strength confronts the pain of dying. "I am now about to make the great adventure," actress Clara Blandick wrote in 1962, when she was slowly dying with severe arthritis. "I cannot endure this agonizing pain any longer. It is all over my body. Neither can I face the impending blindness. I pray the Lord my soul to take. Amen." Setting her pen down, the eighty-two-year-old woman, immortalized thirty years earlier as "Auntie Em" in The Wizard of Oz, dressed in a beautiful blue gown with her hair perfectly set, lay down on her couch, and took an overdose of pills that her doctor had prescribed to treat her constant pain. She covered herself with a golden blanket and died, surrounded by her favorite photos and press clippings, commemorating a life well lived, with no regrets. Like Heracles, Clara Blandick didn't want to die, but neither did she want to endure a slow agony from severe arthritis that only death could cure.

Sophocles, writing twenty-five hundred years ago, was among the first to address this human tragedy through drama when he narrated the story of Heracles's death in the Athenian tragedy The Women of Trachis. Sophocles understood the desire of dying patients to end their suffering by ending life. "Best by far," he wrote, "when one has seen the light, is to go thither swiftly whence he came."

Sophocles wasn't the only Greek tragedian who recorded the common sentiment. Aeschylus wrote, "Oh that in speed without pain and the slow bed of sickness death could come to us now." Seneca, the Roman stoic, expanded on the theme. He wrote, "The wise man will consider it of no importance whether he causes his end or merely accepts it.... Dying early or late is of no relevance; dying well or ill is. To die well is to escape the danger of living ill."

As these philosophers and dramatists understood, the desire to end suffering by dying quickly is eternal in the history of mankind. Yet the concept of suffering is inextricably woven into a tapestry of beliefs regarding humanity's relationship to the Divine, lacing together the medical and the religious as new technologies raise new questions concerning the changing cultural roles—and powers—of physicians.

A couple years ago I was talking to a legislator who was sponsoring a bill to ban physician aid in dying. I told him how, as a physician, I was distressed to see so much needless suffering at the end of life. He lurched toward me in his seat and asked, "What's wrong with suffering?" As he put it, the concept of needless suffering seemed not just incongruous but unbelievable. I had trouble even replying. Does anyone like to suffer? How could he think there isn't anything wrong with suffering?

To most people, such a question as the legislator posed might appear cruel, even sadistic. But I knew the argument well enough to recognize where he was going with his line of thought. The legislator was of the mindset that people have a duty to share the burden of Christ's suffering and that through suffering comes redemption. As the Catholic writer Joseph Sullivan said, "Suffering is almost the greatest gift of God's love."

The concept of suffering to attain salvation can be traced to the apostle Paul and St. Augustine, who wrote about Christ's love for those who suffered and the need to accept one's suffering as a trial, just as Job suffered his afflictions in silence knowing his Lord would not forsake him. But it has not been until recent years that the concept of suffering has been embraced by the far right as a justification for a variety of deprivations and social sacrifices. It is little wonder, then, that the concept of suffering as divine has been used to justify refusing aid to the dying in the form of physician-assisted death.

What may be surprising, however, is that this very same argument arose over whether women should have anesthesia for childbirth. In yet another battlefield for the will of God, during the mid-nineteenth century, when chloroform was introduced as an anesthesia during childbirth, many physicians and clergy argued that to interfere with the pain of childbirth would be a violation of God's will. They based their argument on the belief that after the fall of the first parents, Adam and Eve, God cast a primeval curse upon humanity, proclaiming, "in sorrow thou shalt bring forth children" (Genesis 3:16). The dispute over whether women should have pain relief in childbirth continued for several years, and effectively ended in 1853 when Queen Victoria took chloroform during the birth of her eighth child.

Lest the reader think the nineteenth-century belief that suffering is divine has no influence on the practice of modern secular medicine, consider the work of President George W. Bush's Council on Bioethics. The council, established on November 28, 2001, by Executive Order 13237, was directed to "advise the president on bioethical issues that may emerge as a consequence of advances in biomedical science and technology." The council's report stated, "Yet human pain, while possibly more frequent and intense than animals', is also privileged in a way that that of animals never can be: our suffering, and ours alone, may perhaps be redeemed."

Moreover, this view is not limited to conservative Christians; Catholicism embraces a similar perspective on the concept of suffering. For example, on July 25, 2011, at a Kansas City conference on end-of-life care, Cardinal Burke, prefect of the Apostolic Signatura, said, "No matter how much a life is diminished, no matter what suffering the person is undergoing, that life demands the greatest respect and care. It's never right to snuff out a life because it's in some way under heavy burden."

And although some Catholic teaching does support stopping treatment that is "extraordinary" or "disproportionate" in prolonging meaningless and burdensome life, under the most orthodox teaching it is never allowable to end life in order to minimize suffering, even when the patient is days or weeks from dying.

Although many people of faith support both medically managed dying and physician aid in dying, the most ardent opponents come from the ranks of those with strong convictions based on religious tenets, predominantly self-described advocates of what is commonly termed a "right to life." In many surveys of demographics, attitudes, and preferences of voters, the element most closely correlated with opposition to physician aid in dying is religiosity, as measured by attendance at religious services and parameters pointing to fundamentalist religious beliefs. Surveys of physicians in several states, and nationally, have found the same, with a consistent core of 25–30 percent of physicians saying that physician aid in dying is unacceptable under any conditions.

Because the suffering of extended, unnatural dying is a new phenomenon, as I will show, society is floundering mightily in dealing with it. We still see—and label—life-ending acts in the old way, which is to say as killing. And yet, in virtually all societies, not all lives are sanctified, with the exception of Buddhist teachings, which hold that all life is sacred, yet nonetheless conclude that assisted death can be justified.

For all the resistance to physician aid in dying, there is an equally strong—indeed, far stronger—social tide toward embracing it. Today, everyone old enough to have watched a loved one die—a family member, friend, or even a casual acquaintance—knows the all-too-common and persistent agonies of dying. And physicians, whose stock in trade is to observe, know only too well the rigors of dying. For many patients, modern medical methods—in particular good comfort care with painkillers and treatments for other symptoms—can provide relatively peaceful ends. In these cases, there is no need for assisted death; it will come gently and in its own time.

But for those modern medicine fails, no amount of comfort care can alleviate the agonies of death. Far worse, while modern medicine may fail to help some people, it may instead extend the agonies of death by artificially extending life. And running the treacherous rapids of the dying process is not something anyone would wish for oneself or for a loved one. Yet it is indeed an issue that humanity has long grappled with, perhaps no better summed up than in six simple words from Shakespeare, famously penned in Hamlet: "To be, or not to be, that is the question."

Of course the existential struggle that the bard referred to spoke more to the sufferings of heartache and calamity than the ravages of dying flesh, yet the question of whether one ought to "take arms against one's troubles" when those troubles be the agonies of death have long bemused audiences through literature and theater, particularly throughout the twentieth century, when modern medicine made it possible to diagnose terminal illnesses at an early stage, prolong the lives of the dying, and discretely and painlessly end suffering with medicine.

Karen Ann Quinlan and Nancy Cruzan

Leaping forward several hundred years, we find the troublesome issue no more resolved than it was in antiquity, much less during Shakespeare's time. The emotionally evocative issue of whether a person should be allowed to die became a powerful social concern in the mid-1970s when the celebrated case of a young woman brought to public light what it means to keep someone alive through life support.

In 1975, Karen Ann Quinlan was a twenty-one-year-old woman who fasted for two days and then went to a party, where she ingested a combination of drugs and alcohol. By the end of the evening she had fallen into an irreversible coma, eventually deteriorating to a persistent vegetative state with no possible hope for recovery. When it was clear their daughter would never regain consciousness, her parents requested the hospital disconnect her life support and allow her to die. The hospital refused, so the Quinlan family—who were devout Roman Catholics—took their plea to the courts, asking that they be allowed to disconnect their daughter from the respirator.

But the Chancery Court denied the Quinlans' request, ruling that the question of whether to stop life support was a medical and not a judicial concern. The court then went one step further and took away any rights the parents had to make medical decisions regarding their daughter's care on the grounds that they were allegedly too traumatized to make reasoned judgments. With that decision, the case quickly turned from a tragic but private family matter to a sensationalized legal and social debate that made daily newspaper headlines and became fodder for nightly talk shows. Never before had the question of what it means to extend life through technology been so openly discussed, and now it was front-page news.

"The case was the first one to draw the attention of the country and the courts to the problem of being a prisoner in a helpless body, supported only by medical technology," John Fletcher, director of the Center for Medical Bioethics at the University of Virginia noted. "Death is not something that just happens to most people. Nowadays it's death by decision," he added. "Every one of those decisions is a direct descendant of the Quinlan decision."

After the Chancery Court ruling, the Quinlans took their case to the New Jersey Supreme Court, which reversed the Chancery Court's decision and ruled that Ms. Quinlan be disconnected from all life support. In reaching its decision, the court noted that were she competent to make the decision, Karen Ann Quinlan would have the right to decide for herself whether or not to sustain her life through medical technology, even if doing so led to her death.

Following the State Supreme Court ruling, Ms. Quinlan was disconnected from life support, with the exception of continued feeding. But despite expectations that she would die quickly once disconnected, she lived for another ten years before finally succumbing to pneumonia in a nursing home in 1985.

Meanwhile, another young woman, a once-lively twenty-five-year-old reduced to a vegetative state following a car accident in 1983, lay in a coma. Nancy Cruzan was a young Missouri woman whose parents fought for years, like the Quinlans, for their daughter to be allowed to die. When the Missouri Supreme Court ruled that the state's right to preserve life was absolute and her parents could not remove her feeding tube, her family took the case to the US Supreme Court.

Although the court upheld the lower court's ruling in respect to Ms. Cruzan, it made a finding that continues to shape patients' rights in respect to treatment and death. The US Supreme Court ruled that people who have the capacity to reason and make their own decisions do have the constitutional right to refuse treatment. Although that 1990 ruling did not help their daughter, the Cruzans found further evidence shortly after that their daughter had told others that she would not want to be kept alive artificially if she were ever in such a state. After presenting their new evidence to the state, the state of Missouri allowed the Cruzans to disconnect their daughter's feeding tube. After nearly eight years of unconsciousness and without the capacity to think, Nancy Cruzan died peacefully at the age of thirty-three.

(Continues...)

Excerpted from DOCTOR, PLEASE HELP ME DIEby Tom Preston Janice Harper Copyright © 2013 by Tom Preston, MD. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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