Considering The Most Difficult Decisionby Derek Humphry
This is the scenario: you are terminally ill, all medical treatments acceptable to you have been exhausted, and the suffering in its different forms is unbearable. Because the illness is so serious, you recognize that your life is drawing to a close. Euthanasia comes to mind as a way of release. The dilemma is awesome. But it has to be faced. Should you battle on, take the pain, endure the indignity, and await the inevitable end which may be weeks or months away? Or should you resort to euthanasia, which in its modern-language definition has come to mean "help with a good death?" Today the euthanasia option comes in two ways: Passive euthanasia. Popularly known as "pulling the plug," the disconnection of life-support equipment without which you cannot live. There is unlikely to be much legal or ethical trouble here so long as you have signed a Living Will and a Durable Power of Attorney for Health Care, documents which express your wishes. Active euthanasia. Taking steps to end your life, as in suicide, handling the action yourself. Alternatively, and preferably, getting some assistance from another person, which is assisted suicide. (Remember, assisted suicide is still a felony.) If you are not on life-support equipment, then the first option is not available to you because there is no 'plug' to pull. Roughly half the people who die in Western society currently are connected to equipment. You may be one of the other half who are not. In this case, if you wish to leave this world deliberately, then active euthanasia is your only avenue. Read on, carefully. (If you consider God the master of your fate, then read no further. Seek the best pain management available and arrange hospice care.) If you want personal control and choice over your destiny, it will require forethought, planning, documentation, friends, and decisive, courageous action from you. This book, Final Exit, will help, but in the final analysis, whether you bring your life to an abrupt end, and how you achieve this, is entirely your responsibility, ethically and legally. The task of finding the right drugs, getting someone to help (if you wish that), and carrying out your self-deliverance in a place and in a manner which is not upsetting to other people is your responsibility. If you have not already done so, sign a Living Will and have it witnessed. Get the one that is valid for your particular state. This document is an advance declaration of your wish not to be connected to life-support equipment if it is adjudged that you are hopelessly and terminally ill. Or, if you are already on the equipment because of an attempt to save you which failed, a Living Will gives permission for its disconnection. By signing, you are agreeing to take the fatal consequences. But remember, a Living Will is only a request to a doctor not to be needlessly kept alive on support equipment. It is not an order. It may not be legally enforceable. But as your signed "release," it is a valuable factor in the doctor's thinking about how to handle your dying. The Living Will gives the doctor protection from lawsuits by relatives after your death. A more potent document is the Durable Power of Attorney for Health Care, which, in different forms, is available in all American states. Here you assign to someone else the power to make health care decisions if and when you cannot. For example, if your doctor is unable to make you understand the consequences of what treatment is planned, then he will normally turn to the next of kin. If the next of kin is confused, or has different values, that may not work well. With the Power of Attorney given to someone in whom you have already confided your general or specific wishes, someone who has accepted the responsibility, then it is most likely that you will get either the kind of treatment-or death-that you desire. A doctor must get the approval of the surrogate you have named. If there is dissent in the family about what to do, the surrogate person (in legal terminology, the "attorney-in-fact") has the final decision. This document is legally enforceable whereas the Living Will is not. The Durable Power of Attorney for Health Care could be the most significant document you ever sign. As of today, however, it works only for passive euthanasia (the cessation of treatment) and does not empower anybody to perform active euthanasia (helping to die). In deciding the Nancy Cruzan case in 1990, the U.S. Supreme Court gave its official blessing to the Durable Power of Attorney for Health Care as the best way to give clear and convincing evidence of health care wishes. As from November 1991, the Patient Self Determination Act requires all federally-funded hospitals in the United States to advise patients of their right to make out Living Wills. To be useful, both documents must be distributed beforehand to everybody likely to be concerned with your final hours. Undoubtedly the existence of two properly signed advance declarations like those just described will influence people when the question of active euthanasia is considered. It demonstrates that you have gone as far as is legally possible today, and that you have given forethought about the nature of your dying. Membership in the Hemlock Society-or a similar organization if you live in another country-is perhaps the most powerful demonstration you can make at present of your beliefs. Once these documents are completed, you are ready to tackle the other aspects of bringing your life to an end. The Hospice Option"Don't consider euthanasia," a friend might reasonably say; "think about hospice." Certainly. There are two types of hospice: inpatient and home hospice. In America you are unlikely to be offered a bed in a hospice facility since there are very few. In Britain and France, a bed is a distinct possibility in difficult cases. Because of population size, distance, and financing problems, the United States has had to go with home hospice. However, there are some good ones. The most precious service hospice offers is respite from the burden of care for a family member or members looking after a dying person. Hospice may be able to provide someone for several days, nights, or a week to enable a stressed-out caregiver to take a break. Hospice doctors, who are especially skilled in pain management, make house calls. Essentially, all we are speaking about here is good medical care for the dying. It is interesting to note that Scandinavian countries do not permit hospice to even start up; for them good home care is part of the total medical package provided by their doctors and nurses. Inpatient hospices, where they are available, provide exceptionally skilled nursing care and pain management in a loving environment freed from many of the customary restrictions surrounding normal hospitals. To enter a hospice you-or your family-must agree that death is the certain outcome of your illness, and that you seek care, not treatment. There will be no life-support equipment, such as respirators or artificial feeding, available. Neither will you be helped to die in any deliberate manner. A hospice undertakes to do everything within its power to relieve suffering but makes no guarantees. It all depends on what you mean by suffering. That comes in many forms to various people. Some hospices are run by religious orders or individuals. Others are organized out of humanitarian motives and have little or no religious affiliation. The first thing to check is whether your ethical beliefs are the same as those of the hospice. There might be an embarrassing confrontation at prayer time! Whether or not you wish to die in hospice care-assuming there is one in your district-comes down to how your terminal illness is being coped with, by you and your family. You must also decide whether or not you wish to put yourself into their hands and tough it out to the end, or whether you want to keep open the option of accelerated deathshould suffering become unbearable. There has always been a friendly alliance between many hospices in America and Hemlock. A considerable number of Hemlock members also work as volunteers in hospice. One leading Hemlock member in California was for some years chairperson of her local hospice. This liaison has always been strongest on the West Coast. From what I have observed this is probably because hospice groups there are more likely to be in the hands of people with purely humanitarian motives. On the East Coast hospices are more likely-but not exclusively -to be founded by religious people. Sometimes hospice staff call Hemlock and report that a patient of theirs is asking about euthanasia. We are asked to send out literature directly to this person. On the other hand, Hemlock members in distress sometimes call our headquarters and request the name of the nearest hospice. A geographical guide is maintained for this purpose. Many hospice adherents believe that it is only fear of pain that drives people to ask for euthanasia. They repeat the statements of England's Dr. Cecily Saunders, the founder of modern hospice techniques, that euthanasia is completely unnecessary now that sophisticated drug administration can control most pain. Dame Cecily and other experts agree that there is about ten percent of terminal pain that cannot be controlled. This leaves a lot of people still suffering. More importantly, it is not just pain, or fear of it, that drives people into the arms of the euthanasia movement. The symptoms of an illness, and often the side-effects of medication, damage the quality of people's lives. To take admittedly extreme examples, a person may not wish to live with throat cancer after the tongue has been removed and the face disfigured; or, with abdominal cancer, to be unable to walk across a room without evacuating their bowel. If reading or watching television is the great comfort of life, loss of sight is a tremendous blow if added to the knowledge that death is impending. Quality of life, personal dignity, self-control, and above all, choice, are what both hospice and the euthanasia movement are concerned with. It is the element of personally deciding when and how to die which hospice cannot support. It is too intimate, too individual. Both hospice and euthanasia provide valuable services to different types of people with varying problems. Born in England, Derek Humphry is a journalist and author of ten books. In the second half of his career as a newspaper writer he worked for the London Sunday Times and the Los Angeles Times. The international acceptance of Jean's Way, the story of helping his first wife to die when her cancer became unbearable to her, launched him into a 20-year career in the voluntary euthanasia movement. He was principal founder of the Hemlock Society in 1980 and was for twelve years its executive director, leaving in 1992 to found a "think-tank," the Euthanasia Research & Guidance Organization (ERGO!), which conducts opinion polls and develops and publishes guidelines for assisted suicide for the terminally ill. Derek Humphry can be contacted through ERGO! at 34929 Norris Lane, Junction City, OR 97448. Telephone 503/998-3285. Internet, dhumphry@efn.org. Extracts from Final Exit reprinted with the author's permission from the 1993 Dell paperback edition, $10.00, available in bookstores. Goals and StrategiesTo influence public policy on a patient's right to choose to die by means of physician-assisted dying. To identify public policy issues and conduct ongoing research. To disseminate research findings to policy makers, medical professionals, right-to-die societies, legal and health professionals, legislators, and the public, nationally and internationally. To provide education on all aspects of aid-in-dying. To train various groups on aspects of physician aid-in-dying. To develop guidelines for implementing the most humane means for physician aid-in-dying. To conduct research on existing means of aid-in-dying and their effects on all parties concerned, including legal and health professionals, ethicists, patients and their loved ones. ERGO! Euthanasia Research & Guidance Organization Phone: (503) 998-3285 Fax: (503) 998-1873 Internet: dhumphry@efn.org 24829 Norris Lane, Junction City, Oregon 97448-9559
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