July/August 2008

feature article

Choosing To Die

When life has gone on too long, some hasten the inevitable approach of death

By Wendy Underhill

Anyone can choose to die. It’s not easy, but we can pull the plug on life at any time, through any of a number of admittedly gruesome maneuvers: a sharp blade to the wrist, a handful of pills, a pistol at the head. These are sudden, violent and private occurrences, usually triggered by dramatic events or undertaken by deeply troubled people. But what of those who are very ill and living in constant pain, who see death approaching, and wish to speed its progress—or maybe those who, having lived and lived for a very long time, are now ready to die? How might they hasten the inevitable, with support from others, and without undertaking the violence of suicide?

Such was the case with Gilbert White, a professor emeritus of geography at the University of Colorado, who chose death by ceasing to eat or drink at the age of 94. Once a prolific author, he no longer wrote, and his prodigious memory was beginning to err with names, a loss he felt acutely. Walking had become increasingly difficult, but he had no life-limiting physical maladies, no terminal illnesses.

For some years before his death, White had made it clear that when he ceased to be useful to other people, he wasn’t willing to linger. One evening in September 2006, his widow, Claire Sheridan, brought home a packaged dinner. White ate half of it, put down his fork, and said “I'm just not going to eat any more,” she says. “I thought he meant the food, so I answered 'It isn't very good, I can hardly eat it either.'” He responded, “No, dear, I mean anymore.” He then explained that he hadn't been hungry for a year—he ate only for sustenance—and that the time had come. “I hope I have things to do on the other side,” he said. “I've done everything I need to do here, and I've tied up all the loose ends.” Thus he came to his extraordinary decision, one that shocked many of his friends who knew him as an outward-looking, people-oriented man. White was no recluse or misanthrope, but rather a man who focused on connections and on making the world a better place—he didn’t a likely candidate for hastening death.

Though Sheridan was stunned and heartbroken, she says he seemed more like his old self after he verbalized his decision; he was in charge again, which gave him the dignity he needed in the process. “I knew it would be difficult to watch him become even more frail and that it would seem surreal, which it did,” says Sheridan. “But Gilbert was a man of his word and a man of action. He needed to do what he felt was right.”

From the moment of his decision, White took in only water, one Dr. Pepper, and ice chips. The word went out to friends, and forty or fifty visitors arrived in the next ten days to say their goodbyes—a painful and baffling process for most of the visitors. Sheridan remembers that she couldn't imagine life without him, but she felt it was his choice, not hers, and she was committed to supporting him. She, in turn, was supported by her family and faith community. On October 6, 2006, he died.

For some, this example of voluntary death may seem shocking, even ethically bizarre. Catholic doctrine is especially strong in prohibiting any choice in the matter of causing or hastening death. Even for those who don’t have a creed that restricts end-of-life choice as inherently wrong, few would consider doing what White did.

But choosing to hasten death as it looms near is not uncommon, and voluntary dehydration seems a frequent choice. Ninety-nine year old Harry Dowson of Denver had no physical ailments save a slowing of his gait, but “he was tired, he was done, he was finished,” says his niece, Janet Beardsley. “He'd lived his life, and there was nothing that was going to kill him soon”—so he took matters in his own hands, ceasing to eat in spite of the vehement protests of his furious wife. He died in three weeks. At the age of 89, Alma Gilbert planned her funeral right down to the flowers, then stopped eating until she expired. It took longer than she expected, and friends were concerned that the funeral date she’d chosen might be set too early.

What do we call it when someone stops eating, and others support it? Until recently, the common term was “assisted suicide,” one that was promoted—some would say “sensationalized”—in the 1990s by Jack Kevorkian, MD, the infamous “Dr. Death.” After Kevorkian claimed to have helped more than 130 people end their lives via lethal injections, he was tried and convicted in Michigan for second-degree murder in 1999. He served eight years of an 11- to 20-year sentence before being released in 2007 for good behavior. Now, the more value-neutral phrase “aid in dying” is used, to avoid some of the stigma associated with the word “suicide.”
It’s not legal. “Assisted suicide”—the statutory language still used--is specifically prohibited in all but one state, Oregon. In most states, including Colorado, a specific statute addresses assisted suicide, and in all states, euthanasia—the deliberate causing of another person's death for an apparently benevolent reason—is classified as homicide.

Oregon passed its “Death with Dignity” law in 1994 that permitted physicians to prescribe, but not administer, life-ending medications. Previously, California and Washington both saw comparable measures fail by narrow margins; Oregonians learned from those campaigns how to structure the law with sufficient safeguards to pass. Those safeguards ensure that patients--not caregivers, medical providers, or family members--are in full control of the process, ostensibly preventing any malicious intent.

Specifically, the patient must make two verbal requests separated by 15 days to the physician, plus make a written request that is witnessed by two people who are not primary caregivers or family members. He or she has the right to rescind any requests, and must be able to self-administer (that is, swallow) the medication. The patient must also be diagnosed with a terminal illness with a life expectancy of less than six months; the diagnosis must be certified by a second physician, who also certifies that the person is mentally competent; the attending physician must educate the patient about available palliative options; and the doctor must ask the patient to tell next-of-kin about their request for a lethal prescription.

On the legal front, Hawaii, California, Washington, and Vermont have seen recent attempts to pass laws similar to Oregon's. Compassion & Choices, a nationwide, 30,000-member non-profit organization, has advocated for such legislation, and all laws that promote excellent end-of-life care and the rights of the terminally ill to personally control the dying process. Compassion and Choices is the offspring of a merger between the Hemlock Society (aka End-of-Life Choices) and Compassion and Dying, the two previous major entities in the choice-in-dying movement. It now has headquarters in Denver and Portland, Oregon.

The issue of aid in dying is now increasingly framed as a question of personal choice at the end of life. In Colorado, a significant end-of-life bill was enacted in 2006, when Colorado's legislature passed, with very little opposition, an amendment that protects physicians and others against prosecution for manslaughter if they prescribe pain-relieving medications to terminally ill patients--even when those medications may shorten life. Without this protection, doctors may have been reluctant to fully alleviate pain for fear of prosecution. The amendment specifically bars aid in dying.

And in May this year, a bill was passed by the Colorado House and Senate and sent to the Governor for signature that would allow the state's Attorney General to review cases of hospital mergers was prompted in part by end-of-life choices. A pending plan to transfer sponsorship for three hospitals now managed by the Exempla Healthcare System in the metro Denver area to the Sisters of Charity of Leavenworth Health System, a Catholic entity, has raised the question of whether certain medical practices, especially those involving reproductive and end-of-life decisions, would be continued at those hospitals.

Once the transfer is complete, these hospitals will follow “Ethical and Religious Directives for Catholic Health Care Services” (ERDs) that “provide normative guidance and ethical direction to health care providers in a Catholic-sponsored health care setting.” One small part of the ERDs states “The free and informed judgment made by a competent adult patient concerning the use or withdrawal of life-sustaining procedures should always be respected and normally complied with, unless it is contrary to Catholic moral teaching.” Euthanasia or “assisted suicide” is never acceptable under the ERDs (or under Colorado law, for that matter); the ERDs recommend that “dying patients who request euthanasia should receive loving care, psychological and spiritual support, and appropriate remedies for pain and other symptoms so that they can live with dignity until the time of natural death.”

The ERDs are clear that pain relief is essential: “Patients should be kept as free of pain as possible so that they may die comfortably and with dignity, and in the place where they wish to die.” This section has limits, however, and those limits come into play when the “double effect” of using medications that reduce pain and therefore, incidentally, hasten death, are involved: “Since a person has the right to prepare for his or her death while fully conscious, he or she should not be deprived of consciousness without a compelling reason. Medicines capable of alleviating or suppressing pain may be given to a dying person, even if this therapy may indirectly shorten the person's life so long as the intent is not to hasten death. Patients experiencing suffering that cannot be alleviated should be helped to appreciate the Christian understanding of redemptive suffering. “

Advocates from Compassion and Choices fear this means Catholic-run hospitals will not honor some requests for adequate pain relief from patients or their families. The bill, if signed by the Governor, will not affect the transfer of Exempla hospitals to the Sisters of Charity, but would allow the Attorney General to review similar deals in the future for “material changes” in patient services.

How shall we die?
Whatever the legislative wrangling, voluntary or hastened deaths are quietly happening everywhere, with and without aid from physicians. Non-Oregonians still have options. Some stockpile pain medications and take them all at once, although that approach is fraught with the possibility of failure. Others elect to give up life-extending treatments. Art Buchwald, the acclaimed humorist, decided to stop receiving dialysis, and opted to enter a hospice. Instead of dying in three weeks as had been predicted, he enjoyed several more months which culminated in one final, funny book, Too Soon to Say Goodbye (Random House, 2006). Buchwald died on January 17, 2007.

Voluntary dehydration has the dubious merit of being available to all, even those who can't swallow on their own or don't have a specific medical treatment such as dialysis that they can stop. Since it takes a sustained commitment to reject food and drink, dehydration cannot be an impulsive act. It also does not involve aid from others (although comfort aid is desirable) and as such is less ethically problematic for most people.

All of those “advantages” however, wouldn't matter if death by voluntary dehydration were horrific. Apparently it is not. What little research there is indicates that death by dehydration is relatively painless and peaceful, if not swift. Studies show that fluid deprivation near the end of life is not agonizing, and in surprising ways offers relief. Dehydration does entail oral discomfort--dry lips and mouth—but this can be managed with mouth swabs, ice chips, and careful attention.

Would anyone choose voluntary dehydration if lethal prescriptions were available? Evidently so. A study published in the March 6, 2003, in the New England Journal of Medicine, showed that during the first five years of the Death with Dignity Act in Oregon, most patients who chose to hasten their deaths elected to use voluntary dehydration, rather than a physician's prescription. Hospice nurses who attended both kinds of deaths rated death by dehydration as somewhat less painful and somewhat more peaceful than death with the help of a physician, although both methods produced deaths that they described as “quite good” on average.

But just saying no to sustenance requires a stiff resolve. John Powelson, an 87-year-old Boulderite, says “I'm in favor of this idea generally, but every time I think about it, I get hungry.” A natural response—and a good explanation for why voluntary dehydration remains a rare choice. (As an aside, his wife, Robin Powelson, is planning on the strategy.)

As is all voluntary death. Oregon's experience with physician aid in dying offers evidence of just how rare it is. A study published in the September, 2007, issue of Journal of Medical Ethics shows that fewer Oregonians avail themselves of this option than opponents had expected: while 545 terminally ill people requested and obtained a prescription in the 10 years since the Death With Dignity Act became law, only 341 had chosen to swallow theirs. It seems that one of the greatest palliative effects of the law has been to give people peace of mind. Knowing that the option is at hand, ready to be swallowed if the pain gets too bad, is often all that is needed.

When the end is near.
For most of us—that is, those of us who aren't Gilbert Whites or Art Buchwalds—all we want is a decent quality of life as the end approaches. How do we assure that? Experts say that we start by learning more about end of life care. Ask your doctor for information; consult with your minister or spiritual advisor; read some of the many, many books that address end-of-life care. Or, surf the 'net: a good place to start is with Caring Connections, a website that offers a wide range of information about end-of-life issues, including medical, financial, legal, emotional and other issues (caringinfo.org).

Then, put your ideas down in writing. You can download a simple worksheet from the Aging with Dignity website (agingwithdignity.org) called the “Five Wishes.” It’s a legal document in 40 states, including Colorado, in which you'll be asked to consider five main areas:

• Which person you want to make health care decisions for you when you can't make them.
• The kind of medical treatment you want or don't want.
• How comfortable you want to be.
• How you want people to treat you.
• What you want your loved ones to know.

Copies can be kept at your doctor's office, in clearly marked files at home, and with close friends or family who may be called on to produce them in the event of a medical emergency. Then, think about the hospitals in your area. In the event of an emergency, will you be taken to a hospital that will honor your wishes?

Compassion & Choices has a client support line (1-800-247-7421, compassionandchoices.org) that can field all kinds of questions, including how to talk to doctors or family members about your wishes, specific laws in your area regarding palliative care and, if necessary, what options exist for hastening your own death.

Or, search out one of the 49 hospices in Colorado (coloradohospice.org). These organizations care for people with life-limiting conditions in homes or in clinics, and provide not just pain management, but life management. With this kind of care, the last days, weeks, or months can be comfortable, and even, for some, a satisfying chance for emotional, spiritual, or mental resolution.