The Most Difficult DecisionThis 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 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 days, weeks, or months away? Or should you take control of the situation and resort to some form of euthanasia, which in its modern-language definition has come to mean "help with a good death"?
Today the euthanasia option--or the right to choose to die--comes in four ways:
Passive euthanasia. Popularly known as "pulling the plug," it is the disconnection of medical life-support equipment without which you cannot live. It could be a respirator to aid breathing, a feeding tube to provide liquids and nutrition, or even the sophisticated use of certain drugs to stave off death. There is not likely to be much ethical or legal trouble here provided that you have signed a Living Will and also a Durable Power of Attorney for Health Care--they are also known as Advance Declarations--that express your wishes. (More on these later.)
Self-deliverance. Taking your own life to escape the suffering. This method does not involve any other person directly, although a loved one or friend should ideally be present. It is legal in all respects, and widely accepted ethically.
Assisted suicide. You get lethal drugs from somebody else, usually a physician, and swallow them to cause your death. It is legal for you to do so, but at present it is a felony for the person who supplied the drugs or took any action physically to help you. Despite the present criminality of assistance, this procedure is gaining increasing ethical acceptance. In 1996 two U.S. appeals courts ruled in favor of physician-assisted suicide, making it likely that this is the modified form of assisted death which will be adopted. But the U.S. Supreme Court quickly squashed that and the appeals court were overruled.
Active euthanasia. Death brought about by a physician's injection of lethal drugs. This procedure is illegal and, despite the necessity for it in certain cases, has limited ethical acceptance in the medical profession. It is already available in the Netherlands but is probably more distant in America.
Often, persons who have not properly thought these situations through claim they are not worried about a bad death because they have a Living Will and the plug can be pulled at their behest. Probably so, but roughly half the people who die in Western society are not connected to life-support equipment in their final days, so relief by that way is not an option.
Before we go any farther, let me say this: If you consider the God whom you worship to be the absolute master of your fate, then read no more. Seek the best pain management available and arrange for hospice care.
If you want personal control and choice over your final exit, it will require forethought, planning, documentation, good friends, and decisive, courageous action by you. This book will help in many ways, but in the last analysis, whether you bring your life to a quick end, and how you achieve this, is entirely your responsibility, ethically and legally.
The task of finding the right drugs, getting someone to help or at least be with you, and carrying out your exit in a place and in a manner that is not upsetting to other people is yours. Suicide, even the most rational and justified version, the sort we are talking about in this book, is not something other people are anxious to be involved in. It is best to seek the help of family or the closest of friends.
If you have not already done so, sign a Living Will and have it witnessed, but not by anybody who is going to gain from your other will dealing with your estate. A Living Will, which has nothing to do with property or money, is an advance declaration of your wish not to be connected to life-support equipment if it is judged that you are hopelessly and terminally ill.
Or, if you are already on the equipment because of an attempt to save you that has failed, a Living Will gives permission for its disconnection. By signing, you are agreeing to accept the fatal consequences.
Make sure you get the particular Living Will form that is relevant to your state. They all differ in small details. Strictly speaking, the Living Will of one state or nation does not apply in another place. But carry it when you are away from home, because any sensible physician would recognize it as a valid statement of your wishes. A valid Living Will is likely to survive a court challenge because all American states recognize them and the U.S. Supreme Court has given them its blessing.
But remember this: A Living Will is only a request to a doctor that you not be kept needlessly alive on support equipment. It is not an order. It may not be legally enforceable. But as your signed "release" of his or her responsibility, it can be a valuable factor in the doctor's thinking about how to handle your last hours. The Living Will gives the doctor a measure of protection from lawsuits by relatives after your death. And it gives you a measure of control and choice.
A more powerful 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 or care is planned, then he or she will turn to the next of kin; you are considered incompetent. Now, if the family member is confused, or has different ethical values than you, that may not work well. You may end up getting medical attention of the sort you did not want when you were rational.
With the medical 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 the kind of treatment--or dignified death--that you desire. A doctor must get the approval of the person (also known as surrogate or attorney-in-fact) that you have named. This is especially important if there is disagreement in the family about what to do. The surrogate person has the absolute right to make the final decision, although only if you are too ill to make it yourself.
The medical Power of Attorney is legally enforceable, whereas the Living Will is not. It may seem like a man using both a belt and braces to keep his trousers up, but experience shows that if you care about a good death you cannot be too careful.
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. It does not empower anybody to assist in your suicide or provide euthanasia. Since 1991 the Patient Self-Determination Act, passed by Congress, requires all federally funded hospitals in the United States to advise patients of their right to make out any Advance Declarations their state has. Some hospitals supply this information efficiently; others do not. So it is absolutely necessary for you to sign these documents when you are healthy and get copies into your medical files, your private files, with your attorney if you have one, and with the person who is to be your surrogate decision-maker. Also, hand copies to some or all of your adult children.
This book is chiefly about self-deliverance, assisted suicide, and euthanasia, which the Advance Declarations do not cover. But undoubtedly the very existence of two properly signed declarations would influence health care workers if a question of hastening a death arose. Membership in a right-to-die organization, and having read this book, are at present the two most powerful demonstrations a person can make of sincere beliefs in assisted dying.
Where do you get the documents? From a good stationery store, your primary-care physician, local hospital, or call the state medical society. Nowadays most attorneys, when drawing up your financial will, will ask if you also would like Advance Declarations. This service is worth a few dollars extra. You could also contact Partnership for Caring, 1620 Eye Street NW, Suite 202, Washington, DC 20006. Phone: 202-296-8071. Fax: 202-296-8352. Hotline: 800-989-9455 (option 3). E-mail: pfc@partnershipforcaring.org
A Warning
Some lawyers and concerned groups advocate signing an Advance Declaration that contains many caveats and conditions under which they may take effect, a whole "laundry list" of your medical provisos so that every possible illness is embraced. This seemed a good idea at first, putting in writing which medical conditions were important to you and under what medical state you wanted to be allowed to die. But experience has shown one serious flaw in the "I want this and I don't want that" type of Advance Declarations. What if you are dying of a condition not mentioned in your document? It is impossible to think of every possible way in which death may come. Disputes have arisen between hospitals and patient-surrogates because a particular illness or injury was not spelled out in the document, whereas many others not relevant to the patient were.
My advice is to use those Advance Declarations that your state has approved which make simple and broad statements to the effect that you do not want "heroic measures" carried out merely to keep you alive in a clearly terminal condition. It is a mistake to think that these Advance Declarations are absolutely foolproof: academic studies have shown that many doctors either are ignorant of them or disregard them. To get them respected it is sometimes necessary to be noisy and threatening. Tell the doctor or hospital executive who is being uncooperative that your lawyer will be in touch with them tomorrow to initiate a lawsuit. That usually wakes them up to their responsibilities.
Once these documents are completed, you are ready to plan and tackle the other aspects of bringing your life to an end if and when the suffering in your view justifies it.
Shopping for the Right DoctorIf you are interested in the option of assisted dying at life's end, good rapport with your doctor is extremely useful. It is important that your doctor know your views on dying and death so that he or she is forewarned. This way there will be one believable witness around who can testify to a rational decision made well before health problems became critical and distracting. This may influence possible inquiries later on by the police and coroner's office.
Therefore, unless you are perfectly satisfied with your present doctor, and both of you are on the same ethical wavelengths regarding issues of death and dying, you should now shop around for another.
Have you directly tested your present doctor's views on right-to-die issues? Don't take any chances. Just because a doctor is a nice person, appearing to be very caring, does not automatically mean that you share religious views and cultural values. Find out. The perfect opening gambit to test views on passive euthanasia (allowing to die) is to arrive at the doctor's office with your completed Living Will and Durable Power of Attorney for Health Care. Present these documents and candidly ask if they will be respected when the time comes for you to die.
One way to ask the next question about assisted suicide would be to say, "Doctor, you've heard they've passed a law in Oregon allowing physician-assisted suicide under certain conditions. If that was law here, would you help me to die?" With the question framed this way, you are not going to embarrass the doctor by asking if he or she would break the law for you.
Make your own careful judgment from the answers you receive as to whether this is the right doctor for you. Do not be influenced by kindly and well-meant remarks such as "Don't worry. I won't let you suffer," or "Leave it to me. I've never let a patient die in pain." This sort of response is too vague and general to be relied upon. It may only mean that you'll be "deluged" with narcotic drugs for the last days of life if they happen to be extremely painful. (That "knockout" procedure, known as "barbiturate or terminal sedation," may be acceptable to you. Fine. But some of us want to be able to say good-bye to the world in a manner of our choosing.)
Pin the doctor down. Would life-support equipment be disconnected once it was realized that there was no hope of recovery? Would such equipment be used regardless of a prognosis of hopeless terminal illness? Having opened up the subject with these basic (and legal) questions, then address the matters where the law unfortunately is less clear. Tell the doctor that you have read this book, that you are a supporter of a particular right-to-die group (if you are), and ask directly if lethal drugs would be supplied to you in certain compassionate, terminal circumstances.
The doctor's reply to this tough line of questioning may be an outright rejection on religious or legal grounds. Or it may be hedged because of the complications of the current laws, or ignorance of them. The doctor does not want to be trapped. Today more and more doctors--particularly the younger ones--have taken the trouble to read and think about euthanasia. Thus, a few will give you an outright assurance of direct help should it be needed eventually. The number of doctors who think progressively on this subject today amounts, surveys show, to at least 50 percent, so there is hope that your approach will be well received.
You have to judge from the nature of the answers to your questions whether this is the doctor for you. Of course, if the Advance Declarations are scorned, or there is ignorance of them on the part of the doctor, you need to change immediately.
Call your local hospitals and ask for their physician-referral service. If that doesn't work, look up the medical society of your county or state in the telephone book and call them. Get the names and numbers of five or six doctors who are reasonably close to you; also, if you have any particular health problem, ask for their specialties. And don't forget to check with your health insurance company on whether these doctors are on their acceptance list.
Continues...
Excerpted from Final Exit (Third Edition) by Derek Humphry Copyright © 2002 by Derek Humphry. Excerpted by permission.
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