Three months earlier, my friend Jaime had received a new liver, perhaps from someone a lot like Stephanie.
Appendix 4:
Assisted Death
Assisted death is the act of giving a dying person the means by which that person can kill himself. There are many terms for assisted death: assistance in dying, aid in dying, physician-assisted death, death with dignity. All of these are more accurate terms than assisted suicide. I choose the term assisted death; the act is emphatically a choice, yet nothing like suicide as we generally understand it.
The word euthanasia means “good death.” Euthanasia is the act of killing a person or animal out of mercy, because the person is hopelessly suffering or terminally ill. Euthanasia is legal in several countries, but in most cases it is more exactly physician-assisted death. The choice is consciously made by the dying person rather than by a doctor or proxy acting independently.
I live in Oregon, the first state—and one of the first governments in the world—to make assisted death legal. Assisted death is now legal in the states of Washington, Montana, Colorado, New Mexico, Vermont, and California, as well as several European countries, Canada, and Australia. By the time this is published, I suspect the list will have grown. The Netherlands, Belgium, and Luxembourg allow a form of euthanasia or physician-assisted death for people who are not terminally ill but experience “unbearable suffering.” In the United States and Switzerland, the situation is the opposite: a person must be terminally ill but need not express unbearable suffering.
In Oregon, you must be expected to die within six months, be at least eighteen years of age, and be making the decision for yourself. The most common two reasons for choosing assisted death in Oregon are cancer and amyotrophic lateral sclerosis (ALS). A person must make two verbal requests at least fifteen days apart, and also a written request signed by two witnesses. At that point, the person is given counseling on palliative care and hospice. The law requires that the person can take the medication independently, even if other people are in the room. The drug used is usually Seconal, or secobarbital sodium.
Canada recently passed a medical-assistance-in-dying law after years of heated discussion. A person must be over eighteen years of age, mentally competent, have a “grievous and irremediable medical condition,” and be able to give informed consent. The grievous condition does not have to be terminal, but it has to be advanced and irreversible, and the person must be at such a point that “natural death has become reasonably foreseeable.” A written request signed by two witnesses is submitted and followed by a “10-day reflection period.” The law also requires people to be capable of consenting in the moment of death: they must sign a form just before the procedure stating they have had a chance to change their mind and want to continue. In Canada, the doctor administers the medication, either by mouth or intravenously. (Almost everyone chooses the injection.) The drugs are a combination of midazolam, an antianxiety drug that makes people sleepy, a little lidocaine to numb the vein, followed by propofol, an anesthetic that puts people into a coma. Finally, the doctor administers rocuronium, which causes paralysis. In virtually all cases, the heart stops within a few minutes.
For any action, we can ask: What is the intent? In the recent past—and in certain places and conditions today—assistance in death may be a response to a lack of necessary care. But in the West, we are more likely to suffer from an excess of complex care. Intention is the best way to judge the morality of a choice in such ambiguous conditions. Being ready to die because of illness or disability is not the same as the desire to die. Turning toward assisted death is a way of accepting reality.
Autonomy is an important value for almost everyone, and lack of autonomy is one of the most common reasons for making this choice. I find it ironic that people will support a person’s autonomy throughout an illness and deny them the right to choose how the illness ends. If we believe that people must take responsibility for their own lives, moment by moment and day by day, we must allow people the room to make choices even if we think they are making a mistake. Each of us will face death eventually. Can any of us be so certain about its outcome that we can tell another how to behave at such a momentous time?
The most important aspect of the issue is whether we can accept the real conditions before us. Can we face the very difficult choices life may bring? Can we allow others to face those difficult choices in their own way? A young friend of mine spent two years caring for her husband after his diagnosis of ALS. He had been a vigorous athlete, a rock climber. By the time he was in his mid-thirties, he was confined to a wheelchair and required almost total nursing care. He arranged for assisted death, but then—like many people—held on to the drugs for a time. One day he told his wife that he didn’t think he would be able to swallow much longer. “Today’s the day,” he said. And it was. Assisted death can allow a person an opportunity that will slip away if he waits: the opportunity to be awake to the choice, to slide into death consciously.
Assisted death is deeply disliked by many medical and nursing professionals. Helping someone to die is simply immoral to some doctors. Other professionals believe that a doctor has no business deciding if a person’s life has meaning and therefore they should have nothing to do with ending it. Some believe that palliative care can ease all the concerns that drive people to this choice. A few believe that anyone making the request to die should be assessed for mental illness. People who work in hospice and palliative care fall on both sides of the issue. Few are without an opinion. (One of the unintended consequences of such laws is that pharmaceutical companies are taking advantage; the price of the needed dose of Seconal approaches $4,000 now, and experts are working on new drug combinations that can be made by compounding pharmacies.)
In the Netherlands, between 2 and 3 percent of deaths are the result of physician assistance. Only a third of the people requesting euthanasia received it, either because they weren’t found eligible or because they changed their mind. In a Dutch study, people with qualifying diseases were as likely not to request assistance in dying as to request it. The researchers believed that one of the main drivers for requesting euthanasia was to exert control over death in the only way possible.
Since the law passed in Canada, almost a thousand people have died this way (less than 1 percent of deaths). As in Oregon, most made the choice because of cancer or neurodegenerative diseases. The Canadian law is being challenged on several fronts. It requires doctors who don’t want to participate to refer patients to doctors who will, which is seen by some people as an infringement on physicians’ religious freedom. Patients are challenging the law because it prevents people with chronic disability whose death is not “reasonably foreseeable” from using it. The requirement that a person give consent at the last moment eliminates many people with dementia; some people who did qualify were eventually disqualified because they became too confused.
A discussion of assisted death is not theoretical; each of us may face such a choice, for ourselves or with someone we love. If you are uncomfortable with supporting assisted death for terminally ill people, there are many things you can do. Here, too, your volition is important: Is your intent to control another person, or to ease that person’s suffering? You can volunteer as a companion to a dying person, or help a hospice or palliative care organization provide support. You can also make your own wishes for death and dying clear, an important way to reduce suffering for your family in the future.
The fear has been expressed, in Oregon and in every place such a law has been passed, that the law would be used to prey on vulnerable, poorly educated, or disabled people. Since the law passed in Oregon in 1997, a total of 1,749 people have made use of it; 1,127 people died this way. The average age was seventy-one. Patients were divided almost evenly between men and women, were overwhelmingly white, and almost all were high school or college graduates. Almost everyone died at home, and almost all were receiving hospice care. Most of the people who chose not to take the medicat
ion died from their disease or other causes. Many of the latter group said they were consoled by the fact that they had a choice, and were content to know they could end their life at the time of their choosing.
Note to Readers
The information in Advice for Future Corpses is based on the US health care system and legislation. There are some differences in Australia and New Zealand, including in relation to: the direct cost to patients of hospital care and palliative care; Enduring Guardianship; Advance Care Directives; Voluntary Assisted Dying; and organ donation. There are also differences in legislation in relation to cannabis use and dealing with bodies. Brand names of some medications are different as well, as are prescription guidelines.
The following are resources for readers in Australia and New Zealand.
Australian resources
Australian Centre for Grief and Bereavement: www.grief.org.au
Australian Doula College www.australiandoulacollege.com.au
Beyond Blue: information about grief and loss www.beyondblue.org.au/the-facts/grief-and-loss
Care Search: information about palliative care www.caresearch.com.au
Dementia Australia: planning resource www.dementia.org.au/planning-ahead
Donate Life (Australian Government Organ and Tissue Authority) register.donatelife.gov.au
Dying to Talk: discussion starter resource dyingtotalk.org.au
GriefLine: grief helpline griefline.org.au
Midwifing Death: correspondence course www.midwifingdeath.com.au
MyValues: tool to communicate your wishes for medical treatment www.myvalues.org.au
The National Centre for Childhood Grief childhoodgrief.org.au
Palliative Care Australia: has useful resources on Advance Care Planning, the dying process, palliative care, assisted dying palliativecare.org.au
Planning Ahead: tools for preparing a will, making a Power of Attorney, and appointing an Enduring Guardian planningaheadtools.com.au
New Zealand resources
Better Send Off: funeral resources www.bettersendoff.co.nz
Grief Centre www.griefcentre.org.nz/
Hospice New Zealand www.hospice.org.nz
National Advance Care Planning Cooperative www.advancecareplanning.org.nz
Organ Donation New Zealand www.donor.co.nz
Acknowledgments
I am the student of the many people—friends, family, strangers, and clients—who have allowed me to enter into the extraordinary world of the dying and the dead. Each one has had a unique lesson to teach me, lessons I’ve learned imperfectly and incompletely. But I intend to keep studying.
My agent, Kim Witherspoon, has been a good friend as well as a blunt adviser for many years. I appreciate my editor, Lauren Spiegel, and all the team at Touchstone for steady support and careful reading.
I want to thank Jennifer Stoots for both efficient help with research and solid cheerleading when I needed it the most, Angie Jabine for careful reading, Jeanna Annen Moyer for helping me think through the death plan, and Rachel Wolf for her tremendous patience and humor. Much gratitude to N. Kathryn Moreland, MD, for careful reading and gentle corrections.
Portions of this book appeared in a different form in Conjunctions, Tricycle, and Buddhadharma magazines.
A shout-out to Mark Vanhoenacker, whose lovely book, Skyfaring, cured me of that last bit of fear of flying. I wish I could visit you in the cockpit.
Dennis Potter’s remarkable BBC interview has been excerpted, with slight variations, in many works. The quote used here is from the transcript of the interview as published in Seeing the Blossom by Dennis Potter (Faber and Faber, 1994).
My dear friends: You know who you are. I hope you are there with me when the time comes.
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