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Excerpt From

Who's Right? (Whose Right?): Seeking Answers and Dignity in the Debate Over the Right to Die

Preface

By C. Everett Koop, M.D. Sc.D.

THE HORN FAMILY AND THE KOOP FAMILY were inter-twined for multiple reasons back in the 1940’s and 1950’s. I was a surgical resident at the hospital of the University of Pennsylvania and Dr. Robert C. Horn was the surgical pathologist. Naturally we were thrown together a lot and became not only professional colleagues but also close personal friends, as did our wives. We had our children at about the same time and it so happened that Robert Horn, Jr. was born about the same time as Allen Koop, the first child for both of us. So, I knew Robbie Horn as he was then called as a growing child who was a friend of my oldest son, Allen. Our families were together frequently until my life took me from the hospital of the University of Pennsylvania to the Children’s Hospital where I became the surgeon-in-chief in 1948. Dr. Horn moved to the Henry Ford Hospital in Detroit where he was pathologist to the hospital. He died prematurely in 1976. As what frequently happens to families who meet in academia, we grew further apart geographically, and social contact was more difficult. We did manage to see each other periodically either in one another’s home or at vacation spots. But in general, I didn’t know much about what was going on inside the Horn family until I heard that Rob Horn had contracted Lou Gehrig’s disease or amyotrophic lateral sclerosis. From that day to this, he and I have grown closer as I have come to understand him and his thinking and have learned to love and admire his family.

I am unabashedly pro-life and can argue that position from the point of view of human rights, civil rights, ethics, morals, and religion in spite of the fact that my pro-life stand delayed my confirmation as Surgeon General for eleven months. Rob Horn was the first person who made me really under-stand personal choice in these matters. Why? Because his choice was also mine? No. But because although he made his choice he fully believes in and supports other choices by other people in the same position. During the years of his disability, I think I detected Rob’s belief in his choice to be reinforced constantly (in spite of how he feels on what he calls the bad days). There are so many things I’d like to discuss with him but the difficulty he has in his role in the conversation keeps me from it.

One question I’d like to discuss with Rob Horn is what role did the attitudes around him play in his decision. Perhaps he doesn’t know because he stresses so much the role of the attitude of the afflicted on decision making.

I think in pondering the situation, Rob — careful, analytical thinker that he is would have come to this conclusion: "I made my choice based on a number of things but probably underlying them all was the reality that no one around me thought I had a life not worthy to be lived."

So, you who read this book who have cognitive skills and are of sound body consider carefully your attitude about those whom you call the disabled. Do they detect by your words, your deeds, innuendo, overheard conversation, body language, that you have concluded their lives are not worthy to be lived?

This attitude is responsible for such an enormity of social ills. Expressed before WWII probably first by Binding and Hoche — a physician and a jurist in Germany — led to the progressive destruction of defective babies, the mentally ill, those with tuberculosis, those with incurable diseases, and eventually even amputees of WWI who were no longer useful to the Reich. All because they had, in the minds of Binding and Hoche, lives individually and collectively not worthy to be lived. It is probable that from these small beginnings came the Holocaust.

The attitude — of life not worth living — led to the Eugenics Movement in the United States in days gone by, fueled the early interests in physician assisted suicide, and led to the support of euthanasia, and it certainly led to the sad state of affairs in the Netherlands in regards to euthanasia during the last decade or more.

When the frail, the infirm, the disabled, the chronically ill realize that those around them think their lives are not worth living, then they become depressed, think of suicide, assisted suicide and euthanasia. None of these remarks are to be construed as taking anything away from Rob Horn’s decision. He remains the most courageous person I have ever known.

I wish everyone who contemplates a decision such as Rob had to make would read this book; even more, I wish physicians ready with the easiest and quickest way out would be compelled to read it. Had I put this book together I would not have included a chapter by Derek Humphrey whose requirements for a life worth living are inordinately high and one whose defeatist attitude is so far from being uplifting. The fact that such a chapter is here is one more tribute to Rob Horn and his fairness and his deep understanding of choice.

My prayer for you, Rob, is that you will have the faith and courage to sustain you, that your family and close friends know in some way that they are contributing to so many who have accomplished what they thought was impossible because of your example.

—C. Everett Koop, M.D., Sc.D.

"Partial Text of Chapter"

1

The Power of Choice

The Right to Live

and the Right to Die

by Robert C. Horn III

One thing I do know: For me, a physical disability is preferable to a mental one. In This Far and No More, an ALS victim, who eventually succeeded in obtaining assistance to end her life, discusses the relative "merits" of ALS and Alzheimer’s. Although her internal debate remains inconclusive, she writes wistfully of a disease where you would not be aware of your steady physical decline. Not me. My progressive deterioration was frustrating and depressing in the extreme but I’ll still take that over losing my capacity to reason, to analyze or to remember. For, as the remarkable Dan Quayle — remember him? — misspoke in one of his innumerable verbal gaffes, "What a waste it is to lose one’s mind." Indeed!

My mind, such as it is, has been my salvation. It still is. I am no brilliant thinker but I do enjoy the world of the mind, which is only appropriate for someone who has spent his entire life in school, either studying or teaching — and always learning. I am interested in and curious about, an unceasing flow of books I am anxious to delve into and a number of topics I would like to write about. My mind is my means of setting goals and striving to achieve them.

My area of expertise and teaching responsibility as a college professor was international relations with a specialization in the Soviet Union and Soviet foreign policy. Several common themes ran through all the courses I taught. I emphasized — ad nauseum, I am sure, to my students — one of these in particular because it is crucial to understanding how and why states in the international arena behave and interact with each other. It is also an essential consideration in policy making. At least it should be — see, for example the discussion in Robert S. McNamara’s book on American policy in Vietnam, In Retrospect: The Tragedy and Lessons of Vietnam. It is equally important, I think, in interpersonal relations. That theme or issue is perception.

What the study of perception in world politics teaches is that so-called "objective reality" is actually the subjective perception and interpretation of situations, events, interests, and other actors by various decision makers in every state and other entity. States pursue their interests based on their particular perception or view of reality. That, in turn, is shaped by the complex interplay between a whole range of factors and considerations, including geography, economic strengths and weaknesses, history, ideology, military capabilities, the political situation, and various intangibles such as national character. All of this means that in order to understand why the old Soviet Union or the United States, or Malaysia, Israel or Ecuador, took a certain foreign policy action, you have to put yourself in "the other guy’s shoes." You have to see the situation through his eyes, understand that state’s perception, its perspective.

So what, you might well ask? Is this somehow relevant to the matter at hand or just some extraneous lecture pulled from a musty file? Simply put, the study of perception reminds us that there are different ways of looking at the same issue, event, problem, or situation. And this is true at all levels of life, from the global to the personal. The linkage between perception and living life is that we act on what we perceive. In other words, our perception, or perspective determines how we live. This makes the discussion relevant for my life, indeed for all of our lives.

What is my perspective, then, on my life? Not oversimplifying the question very much at all, it comes down to that old conundrum: Do I see the glass as half full or half empty? Before the diagnosis of ALS, I had always viewed the glass as half full. I was an unabashed optimist, albeit tempered with a certain degree of realism. But how about now? Admittedly, there is not much to like, and a great deal to find intolerable, about my current situation. It is difficult, to say the least, living under the sentence of a terminal disease, knowing that I will not get better, only worse. I have to try to avoid reflecting on longer-term concepts of time, such as "never" or "forever." They are psychologically painful. Physically, I’m a mess. I can’t do anything for myself, have virtually no workable muscles and can’t move. It is frustrating and maddening to be so absolutely helpless and so totally dependent on others. If my head lolls to one side or the other, as it often does, it stays there unless and until someone notices and props it up again. If an arm slips off the armrest of the wheelchair, it will just dangle by my side until someone retrieves it.

There is ample evidence to think the glass is now at least half empty. Well, it almost is, but not quite. There is more to life than physical ability. There are the mental, emotional and spiritual abilities or worlds to consider as well. In these worlds, I haven’t changed; I am still a vibrant, healthy and independent person. I can think, reason and analyze, remember, read, write, learn and communicate. I can love, feel happiness and sadness, be enthusiastic, get angry, have highs and lows, feel joy. I can believe, hope and have faith. This adds up to an extensive list of things I can still "do" in spite of my disease.

This brings me back to the question of my overall perspective of my situation. I am convinced that what I have left is more valuable than what I have lost. I believe that the things I can do are more important than those I can’t. The key for my psychological well-being is to focus on what I can do, my abilities, rather than on my disabilities and limitations. To dwell on the latter is to wallow in grief and self-pity. Such wallowing is, for me, sometimes unavoidable and occasionally even necessary. But to concentrate on the former is to invite optimism, achievement and new opportunities.

All in all, I would say that the glass has lost some of its water but it is still half full. In the game of life, it all comes down to how you keep score. If dying is losing, then we are all losers because we are all terminal. The game makes no sense. A far more meaningful basis for scorekeeping is the quality of life. Quality rather than quantity or longevity. How do you assess quality? That very much depends on perception. Quality is not determined by the normal bumps in the road which every-one experiences. In life, as the bumper sticker crudely but truthfully states, "Shit happens." Indeed it does! Mary Chapin Carpenter sings about the fact of life that sometimes you’re the bat and sometimes you’re the ball, that "sometimes you’re the windshield and sometimes you’re the bug." I have always liked the way Judy’s brother, Don, has expressed this basic truth: "Sometimes you eat the bear and sometimes the bear eats you." If you can’t deal with the naturally occurring and inevitable downs, the game of life is not for you. You have to accept the bad with the good. Most of us have learned to do that. We have also learned that, as I told the girls on my soccer teams, the test of our character is how we respond to adversity and setbacks, losses, disappointments, and defeats.

My response to ALS has run the emotional gamut. And gauntlet. I have experienced despair, fear, resignation, anger, and the dashing of unrealistic hopes, amid a torrent of emotions. Some time ago, I arrived at an acceptance of my condition and of reality. My "psychological problems" now relate not so much to my physical limitations or the fatal nature of my disease per se, but rather the additional responsibility I have caused to those closest to me. On the other hand, I have been surrounded by so much unconditional love that it is overwhelming. Especially by Judy. But from so many others, too. My favorite passage in the Bible has long been from First Corinthians. Paul wrote to the church in Corinth, "If I speak in tongues of men and of angels, but have not love, I am a noisy gong or a clanging cymbal." Well, no gongs or cymbals here! Family and friends are the instruments and reflection of God’s love and I am continuously uplifted by them. They demonstrate that, as Paul further wrote, "Love bears all things, believes all things, hopes all things, endures all things." That passage means even more to me now. It has become very personal and very real.

There have been studies which show that social support, as opposed to social isolation, positively correlates to longevity in terminally ill patients. This doesn’t surprise me at all. From my own experience, I can testify that social support like Judy and I have received also positively correlates to QUALITY of life. That is even less surprising. Where does all this leave me? Fundamentally, I believe that I am as close as I will ever be to achieving, or being granted, the serenity so eloquently expressed in the Serenity Prayer by Reinhold Niebuhr: "God give us the grace to accept with serenity the things that cannot be changed, the courage to change the things which should be changed, and the wisdom to distinguish one from the other."

I love that prayer! I also think it fits my situation absolutely perfectly. I HAVE to accept my disabilities if I am going to keep on living. There is no alternative, except, I suppose, insanity and I am not quite ready for that. I definitely REQUIRE the courage to do all that I am capable of in my life. Finally, I also NEED to be able to distinguish what I can change in my life from what I can’t. All of this adds up to the need to focus on things I can do and not to dwell on those I can’t.

"Partial Text of Chapter"

3

A World Perspective

on Euthanasia

by Derek Humphry

Derek Humphry founded the Hemlock Society in l980 and the Euthanasia Research & Guidance Organization in l993, both nonprofits providing information about assisted dying, and working for law reform. He has written 13 books, six of them on euthanasia, the most famous being the best seller, Final Exit. His web site is www.finalexit.org.

WITHOUT DOUBT, ONE OF THE GREAT SOCIAL debates early in the new Millennium will be over euthanasia. Is it moral? Is it necessary? Is it the ultimate civil liberty?

During the last two decades of the old century it had become plain that public opinion worldwide favors the right to choose to die when faced with unbearable terminal suffering — and to get medical help to do so. The Judeo-Christian churches reject the notion of artificially hastened death as vehemently as they oppose a woman’s right to choose an abortion.

Politicians of the right generally follow the church policy, whilst those left of center tend to support legalization of cautious, voluntary, justifiable euthanasia. So that we all know what I am talking about, let me first spell my definitions of these controversial words:

Passive euthanasia: merely means disconnecting an obviously dying person from their life-support equipment and letting nature take its course. This procedure is either legal or acceptable almost everywhere.

Voluntary euthanasia is when a patient asks for death to avoid further terminal suffering. A doctor injects lethal drugs into a vein. Only legal in the Netherlands and Japan in certain circumstances.

Physician-assisted suicide is when a dying patient asks a doctor for lethal drugs to be taken by mouth. This is legal in the Netherlands, Germany, Switzerland and the American state of Oregon. As to whether there is a right — legally or morally — is by no means a purely American or Dutch debate, although it’s in these two countries where debate is loudest and progress has been made.

It has its own peculiarities in the United States connected to the lack of homogeneity in a huge US population of 265 million, absence of universal health care, and a daunting number of states with a complex variety of laws governing the subject. And in the Netherlands social progress and reform in general is so far out in front of the rest of the world that it is not easy to use their actions as a test model.

But there are also some forty organizations around the globe fighting in their respective nations to educate and legitimize some form of aid in dying. With the exception of India, Colombia, and Zimbabwe, they are all located in highly developed countries. A few fortunate nations do not have the problem — at least legally. Switzerland’s laws have permitted assisted suicide since l937 provided it is for the relief of terminal suffering and carried out for compassionate and altruistic motives.

The Swiss Academy of Medical Sciences opposes doctors actively helping patients to die but it nevertheless supports the principle and practice of ‘double effect’ — administering morphine to relieve all pain despite the risk of accelerating death. In a population of seven million, there are between 100-120 cases of assisted suicide every year in Switzerland. Doctors carry out some twenty of them; family and friends effect the rest. There has never been a prosecution.

Although discretion on this matter has been prevalent in their country for a long time, many Swiss realize that they possess a precarious right which opponents would not hesitate to strike down. Consequently, in the last twenty years two right to die organizations have sprung up; the largest, EXIT, has more than 60,000 members — three times the size of the Hemlock Society in the USA.

"Partial Text of Chapter"

9

The Oregon Death with

Dignity Act

Fact versus Conjecture

by Peter Goodwin, M.D.

INTRODUCTION

The debate about physician-assisted suicide (PAS) has been intense and adversarial. An issue so important, so charged with emotion, and so at variance with long held ethical and dogmatic beliefs must continue to generate intense discussion in a democratic society such as ours. However, that part of the discussion which deals with the practical application of PAS should be factual, and based on the results of implementation of the Oregon Death with Dignity Act (The Act). We now have two years of experience since implementation, and facts should now supplant conjecture.

I intend in this essay to explain why I was in the forefront of efforts to make PAS a legal option for those terminally ill patients who qualify under the Act. I shall discuss the provisions of the Act and describe my involvement in caring for terminally ill patients who requested PAS in conformity with the Act. I shall show how that experience, supplemented by an analysis of the Oregon Health Division’s report of the results after two years of implementation of the Act, confirms that the Act has been measurably successful.

PERSONAL

I have been a family physician for almost fifty years. At my medical school care of the dying had no defined place in the curriculum, and in most schools in the U S the same was true until very recently. My ignorance inevitably led to errors. They were errors of neglect and of avoidance, of inadequate treatment of symptoms, especially pain, and of failure to communicate. These errors were almost universal among my colleagues.

My first wake-up call came in the late 60’s when a married couple together in my office asked me to help the husband to die. He was suffering severely from cancer that had invaded his spine, causing paralysis from the waist down, loss of bladder function and constant severe pain. The cancer was resistant to all forms of treatment. I still have a sense of desolation because of the blundering inadequacy of my response.

Years later I cared for two dying patients at home. Both had strong, close support systems. One had daily help from the religious community to which he belonged. Family members from whom he had been estranged came to assist in his care, and regained intimacy. The other had a granddaughter, a nurse, who coordinated care from devoted family members. I made frequent house calls, and observed how different the dying process was from what I observed in hospital. The contrast was startling. At home a sense of acceptance and love, in hospital usually a distancing and a loss of personhood, often with both patient and family kept in ignorance. I realized that the medical establishment was all-powerful in a hospital setting, and that physicians were often ignorant, and worse, uncaring of the needs of dying patients and their families .

The experience that finally persuaded me that dying patients needed more power to influence the way they died was in caring for a man in his late 30’s with pancreatic cancer. After all treatment options had been exhausted, he asked me, with his wife present in the room, to help him to die. By then he was emaciated, vomiting frequently, and suffering unremitting pain. Later his parents came as well, to demonstrate their support for his decision. I believed that his request was entirely rational. My attempts to help him and yet remain within the law were ineffective, and he died an agonizing death. Hospice would surely have relieved much of his suffering, but he was reluctant to have hospice involved. His wife’s anguish at the manner of his death and my impotence in the face of a law which then prohibited me from mobilizing all the resources that he desperately needed, impelled me to work to have PAS made legal.

I was of the opinion that the Medical profession was not ready then to deal meaningfully with requests for PAS from dying patients who desperately wanted that option. I joined the Hemlock Society, from which I have since resigned, and learned that a small group of individuals, independent of the Hemlock Society, had come together to attempt to place a citizen’s initiative on the Oregon ballot to make PAS a legal option for qualified patients. I joined the group. During the next eighteen months we painstakingly drafted the proposed ballot measure, incorporating many safeguards, and reaching consensus on issues on which we initially disagreed. As an example, a minority considered the option of voluntary euthanasia, the injection by the physician of a lethal dose of medication into the dying patient’s vein. I opposed this option for three reasons: firstly because of my personal discomfort with the proposal; secondly because I believed that the support of the proposed legislation by at least a substantial minority of physicians was essential, and the result of an informal poll of about thirty family physicians I conducted in Oregon showed that while half supported PAS, none supported euthanasia; lastly because I felt that the scope of the law needed to be clearly limited.

The ballot measure was narrowly approved by Oregon voters in November 1997. Two years later the measure was again voted on, and this time approved by a 60% majority. Legal challenges had been rejected, and the Oregon Death with Dignity Act became law. In 1999 the Oregon legislature added several amendments to clarify definitions and rectify some ambiguities.

THE OREGON DEATH WITH DIGNITY ACT

The Act allows an adult terminally ill resident of Oregon with a life expectancy of six months or less who is mentally competent, fully informed and acting voluntarily to request from his or her attending physician a prescription for a lethal dose of medicine to end life. The physician may legally provide the prescription if all the provisions of the Act are satisfied, or may refuse the request. If the physician refuses, the only requirement of that physician under the Act is that records be transferred on request if the patient establishes care with a new attending physician. The attending physician must ensure that the patient is indeed terminally ill, capable of making rational health care decisions and that the request is made voluntarily. The patient must be informed of the diagnosis and prognosis, and of alternative treatments, including comfort care, hospice care and pain control. The attending physician must ask the patient to involve family members and must assure the patient that he or she can with-draw the request for PAS at any time.

The attending physician then must refer the patient to a consulting physician knowledgeable about the patient’s disease, who must confirm the diagnosis and prognosis, and verify that the patient is capable, is acting voluntarily, and has made an informed decision. If either physician is of the opinion that the patient’s judgement may be impaired by mental illness, including depression, the patient must be referred to a psychiatrist or psychologist for determination of competence. Only if the patient is capable of understanding and making health care decisions can lethal medication be prescribed.

The patient must make two oral requests for PAS, separated by at least fifteen days. A written request must also be completed by the patient, in which the patient confirms that he or she is fully informed about the diagnosis, prognosis, the medication to be prescribed and risks associated with its use, the expected outcome, and feasible alternatives. Also, that the request is being made voluntarily, and that the patient knows that the request can be rescinded at any time. The request must be signed by the patient in the presence of two witnesses, who declare that the patient appears to be of sound mind, and not under duress, fraud or undue influence. There is a waiting period of fifteen days from the time of the first oral request, and at least two days from the date of the written request before a lethal prescription can be given to the patient. Because participation by pharmacists is voluntary, as it is with all participants, the attending physician must call the pharmacist to confirm that the prescription will be filled, and inform the pharmacist of the purpose of the prescription. The attending physician must recommend to the patient that there be a responsible individual present when the medication is taken.

All steps must be fully documented in the patient1s record, and the attending physician must include a note that all requirements of the Act have been satisfied. The attending physician who writes a prescription to end life must send to the Oregon State Health Division completed copies of the prescription, the patient’s written request for medication to end life, the consulting physician’s report, and the mental counselling report, if performed. In addition the attending physician must complete a special health division form detailing the documentation in the patient’s record, or agree to make relevant parts of the record available for inspection by the Health Division to determine compliance with the Act.

10

To Be or Not to Be

by Helynn Hoffa

I WOKE UP TO DARKNESS and the rhythmic sound of a machine. I had no idea where I was or what was happening to me. I tried to turn but couldn’t move. Fear rose up in my throat. I didn’t like not knowing what was happening. I called out but got no answer and I panicked. I realized that my 60 year old body, afflicted with polio since the age of 8, was in an iron machine of some sort with only my head out resting on something.

I called out again and an authoritative voice said, "It’s not morning. Go back to sleep." Bewildered, and not knowing where I was or the circum-stances, I just started screaming. In no time, my room was crowded with hospital personnel. It took some time for them to calm me down. To my horror, I found I was in an iron lung and the rhythmic machine was helping me breathe. Two weeks later, I went home in an ambulance with my iron lung on a truck. They set up the lung in the living room and mirrors were placed strategically around the head of the lung so I could see through the house from the front door to the back door and into the back yard. This vista helped to keep me from feeling penned in. I could also see the television from this angle.

The machine had port holes where a nurse could reach in and care for me. I was using the bedpan, taking bed baths and having my sheet changed through these port holes while the iron lung kept running. It was all very awkward and exhausting. I was getting more restless as the weeks wore on. I was not in a familiar position, lying flat on my back, with my body in an iron tube, my head resting on a table outside the tube, my neck encased in a plastic sleeve creating the needed barrier to maintain the pressure I needed to breath. I hated it.

I decided to turn off the machine and get out for short periods of time trying to breathe on my own for as long as I could. This meant shutting off the machine, sliding it open, and having the bed table pulled out from the tube. Next the sleeve around my neck was loosened and my body was pulled toward the foot of the bed table so my head was pulled past the sleeve and the metal ring. Now I was fully on the bed table of the iron lung. Then I had to be turned over from my back on to my stomach so I could be propped up on my elbows. This "propped up on my elbows" posture has been familiar to me for most of my life. I didn’t know if this was harming me or not but I was determined to keep it up. I had to have some feeling of being out of that machine or I thought I’d go mad.

That gave me a feeling of freedom which I wanted very badly so I’d get out of the machine for breakfast and stay out until after lunch. Then I’d get put back in and sleep the afternoon away because I was totally exhausted from the ordeal. These afternoon naps affected my night sleep cycle so I was up half the night, thinking unpleasant thoughts, remembering the dark times in my life and feeling despair haunt me.

That began the long battle between the machine and myself. For a year and a half, I wanted to die rather than to live like that. I figured it was just asking too much of me but there was nothing I could do about it. Already, the polio had left me a quadriplegic and I had spent my life in a wheelchair.

Surely, this was asking too much. It reminded me of when I first had polio and couldn’t even turn my head. I’d lie upstairs in my bed listening to my friends playing outside in the summer evening. I didn’t understand what had happened to me but I was deter-mined to get out even if it was in a wheelchair. When I finally did get out, my friends were happy to see me and included me in their activities. In the fall I went to third grade. The teacher was most helpful and I could now use my right hand to do my homework. Children adjust more easily than adults. I’m not saying it was easy but it was certainly easier than getting used to the iron lung.

My parents heard about Warm Springs, Georgia as a place for treatment for polio patients because Governor Franklin D. Roosevelt of New York State had polio and he went there for treatment. We didn’t have the money to send me so the Kiwanis Club offered to pay my way. That Christmas I went south to Georgia where I stayed for a year taking the treatments. The Roosevelts came down several times while I was there and I remember one morning I was seated on the steps leading into the water when President Franklin D. Roosevelt swam over and sat down beside me. I can still remember the hot Georgia sun blazing down on us and the cool air rippling the blue waters of the pool. He was a big man and I thought he was handsome. He asked me about my parents and then asked me what I wanted to do when I grew up. "I don’t know. I don’t guess I can do much." He looked at me and smiled and said, "If I can be elected President of the greatest country on earth even though I am in a wheelchair, you can do anything you want." "I want to be an archeologist," I said a little hesitantly. "Then do it, "he advised. Needless to say, I idolized him and his words kept me going through many a dark day but not all the dark days. Not even a hero’s words could get me through some of the despair I experienced as I grew to womanhood.

When I was in my twenties, I attempted suicide. I came back to consciousness in Queens Hospital in Honolulu. I had gone to a prominent surgeon to get some work done on my right foot. My toes were curling under and made it difficult to wear high heels. He looked at me with a gleam in his eyes.

With my polio, I was a surgeon’s dream. I told him repeatedly, I wanted nothing else done besides my foot. When I came to, my right hand was in a cast. He had "stabilized" my thumb. My left arm was in a cast because he had operated on that elbow. I was furious, to say the least. Unable to use my right hand, which prior to the surgery was fully functional for me, I could no longer work effectively as the editor of the Hawaiian Sportsman magazine and sports reporter for the Honolulu Star Bulletin.

When the cast came off and I found my stabilized thumb unusable, I had to learn how to hold a pen all over again, and how to type without using the ineffectual thumb. My deadlines came and went and my career was at a standstill for several months all because of an over zealous doctor. I decided life wasn’t worth living. I had had enough. Fortunately, I bungled a suicide attempt. When I woke up in Queen’s Hospital I tried to find the words to explain my actions to my beloved Mother and Father. It was futile. Rather than the escape which I sought, I found my life more complicated than ever. How do you tell your family you don’t want to live anymore? By my attempt, I hurt a lot of people who had devoted their lives to me. They couldn’t understand why I had attempted it and I had no reasonable answers for them. And now I was once again faced with another physical hardship, the iron lung, adding more anguish to my life.

Pondering this while the iron lung heaved air out of me, memories flooded me of all that I had accomplished in my life from a wheelchair. I remembered fondly the seven years I lived in Hawaii yet I never saw another person like me in a wheelchair. Yes there were plenty of disabled veterans and I knew there must be some other disabled people on the Island but I never saw another wheelchair outside of a hospital setting. I soon found out that the Orientals hide their disabled in their houses, being ashamed of having some-one who is not perfect in the family; and the Portuguese believe the disabled have the evil eye and stay away from them for fear of being bewitched. It was the first time I had experienced discrimination and I remembered how it made me feel very uneasy.

In spite of this, a contingency of fishermen from Pokai came to me and asked if I would help them get a breakwater built, "The winter storms wreck our fleet every year," they said, "We need a breakwater to stop the waves." "I’ll try," I said. I wrote an article outlining their problems and presented it to the Army Engineers at a meeting in City Hall. To my surprise, the breakwater was built and a small plaque put up at its entrance with my name on it. Even the drone of the iron lung couldn’t take away the good feelings I still have about being able to have helped so many of the local fishermen and their families.

My parents worked for the Navy and decided to transfer to San Diego Naval Station. I would have stayed in Hawaii but I wasn’t earning enough money to hire help for both the house and me so I went with them. It was not easy to leave a place where I was well known and recognized for what I did do from a wheelchair and go to a strange city where I knew no one, and was just another disabled person in a wheelchair. I became involved in Episcopal church work, becoming a member of the Franciscans. My job was to coordinate the Women’s Guilds and teach junior high Sunday School. I also opened an art studio, teaching children on Saturdays and adults on weekdays.

Even though this kept me busy for quite some time, I soon began to feel like I was just spinning my wheels. Despair reared its ugly head once again and I developed a case of anorexia and got down to fifty-four pounds. My doctor despaired of me and predicted I wouldn’t live beyond three months at the rate my illness was progressing. I just simply didn’t know if it was that I couldn’t or wouldn’t eat.

The doctor suggested that Mother hire a Nurse’s Aide to come in and take care of me in the afternoons. She and Dad both worked, and I was alone a lot except for a neighbor who came in to give me lunch. Mother hired a young woman named Wilma Lusk and told her it would be a temporary position. Wilma and I have been together now for over thirty years. She and I have been through a lot together. I saw in Wilma a way to get out and about. She learned to drive and Mother bought her a little car just big enough for the two of us and she started back to college. I now have another caretaker named Karen Jasinski who has been with me for three years and we have become close friends.

Southwestern Community College was built on the urging of myself and two other ladies in Chula Vista. I feel it is one of my most important achievements. On their twenty-fifth anniversary, during graduation, they gave me a plaque and an honorary Associate of Arts degree, of which I am very proud. I was now in my forties and still living at home. I felt the need to be out on my own and grow up, so to speak. Wilma and I moved out to San Diego State where she finished her education and got a Bachelor of Arts degree in Art History. Living at the college was fun and our apartment was always crowded with youngsters. It was an exciting time to be in school during that period of social unrest in the sixties and we were in the thick of it.

I was doing fine and my health was good, so we decided to move to La Jolla and go into the printing business. I would be the bookkeeper and take care of the business end and Wilma would operate the press. That way we could earn some money and take care of ourselves. We mostly printed pamphlets and paperbound books for professors and "mouse cards" for a laboratory doing cancer research. We also did a lot of Buddhist papers for the group that Wilma belonged to.

The post polio syndrome, which I knew nothing about, crept up on me slowly. I just knew I was getting weaker. My friends said it was because I was getting older and there was some truth in that, but friends my age were not losing muscle strength at the rate I was. I knew it had to be something else and if there was anything I wanted to do I had better do it before it was too late.

So I decided I’d take one last fling and go to England. My nephew, Larry, my mother, my cousin Peggy and Wilma planned our trip. Whenever Wilma and I got a few dollars together, we’d pay for something on the trip. This is where the press came in handy. It took us a year and a half to get our part paid for and we went for five weeks doing the trip on a shoestring but having a wonderful time. We didn’t all do the same thing. Larry, Wilma and I hired a camper and camped for two weeks doing our cooking and staying in farmers’ fields. The one thing we all did together was the canal boat trip. With all of us sharing in the expenses, that too was reasonable.

When I returned home, I was very tired and went to a neurologist. After treating me for three months, he told me I was losing muscle power so fast that I had Amyotrophic Lateral Sclerosis and not long to live. He was well noted in this field and his diagnosis could have been correct, considering the symptoms exhibited, but he, like others, just didn’t know about the post polio syndrome and how ALS and post polio syndrome appear to be similar in many respects.

For several months I put my affairs in order, expecting my life to be over shortly. And then the day came when the doctor told me I didn’t have ALS but the post polio syndrome. No one had known about the post polio syndrome until it happened to a number of us as we aged. I wasn’t prepared for an extended deteriorating life. After months of reviewing what I had accomplished in my long life with polio from a wheelchair, it was a severe blow to learn that now it was not coming to an abrupt end but would drag on slowly. What would I do with the rest of my life? Was this a cruel joke or a reprieve? I read in a magazine for the disabled about a small keyboard operated by a stylus that would connect to my regular computer making it easier to operate. I ordered one. It was just the thing and now I was back to writing. I asked a friend of my nephew’s, Gary Morgan, who was the journalism director of a community college, if he would help me write a book. I needed someone to look up the data because I couldn’t do that. Together we co-authored the book, Yes, You Can. It dealt with the whole spectrum of life for the physically handicapped. It gave some purpose to my life and kept me busy. It was published by Pharos. I then decided to independently try a novel, Golden Shores, which was published by Paradigm.

I was so engrossed in the books I didn’t realize my health was deteriorating. My right hand had weakened so much I could no longer hold the stylus. Nor had I the money in invest in a computer that could accommodate my special and diminishing capabilities. After having used an IBM electric and then a computer, I found it difficult to dictate what I wanted to write. I needed that "hands-on" feeling which is not present in dictation. I am still writing occasionally but it goes slow and awkwardly. My latest books, memoirs of my life in a wheelchair, have not found a publisher which discourages me. I was a writer all my life for magazines and newspapers; I was editor of the Hawaiian Sportsman. I’ve had some success at writing and it is difficult to accept that my work is no longer finding an outlet.

I can do less and less for myself as the post polio syndrome advances. I can no longer feed myself or do other simple things. There are times when I am discouraged and wonder if it is worthwhile going on. But that all seems so cowardly.

I’ve had a full rich life in spite of my handicap. I am sure there may be more ahead of me that can be as rewarding and fun as what I have experienced in the past. For every ray of hope and optimism there is doubt and despair following close on its heels. I have found that the doubts outweigh any positiveness I can muster up, especially in the dark nights when I can’t sleep and my situation seems overwhelming. When other people can’t sleep, they can get up and walk around, get a drink, and read a book until they feel sleepy again. I just have to lay here staring at the ceiling surrounded by dark-ness, unable to move during these endless nights. It is at these times that I don’t really want to go on. Why should I tolerate all this pain when I wouldn’t have to?

I know there is no getting better. Each plateau I find myself on is a lower one. With post polio syndrome, exercises are of no help to build and maintain deteriorating muscles. In fact, exercise is not advised because it tires me out too quickly. However, I have found the massage which includes range of motion techniques keeps my muscles and joints from stiffening. If only the ill effects of post polio syndrome would not continue to grind away at my body, making just plain living harder and harder, perhaps I wouldn’t feel so discouraged at times. This sure progression of being able to do less and less is not easy to deal with because it takes away hope for a better future. The lack of money exacerbates many of the problems handicapped people face. The state doesn’t let us have enough to live on. The state gives a disabled person a small stipend and if we earn any extra money, the state deducts that same amount from our measly stipend, which hardly seems fair when we are trying to make a go of it. By doing this, the state perpetuates handicapped people living below the poverty level. There has to be a better way; one that would encourage the handicapped people to work and con-tribute when we can. This would help build self esteem and give us a feeling of earning our own way in society. To have to take hand outs, to have to fight institutions and political powers, to have to beg for everything needed for our upkeep, not only lowers our self esteem but leads to depression as well. And depression leads to suicidal thoughts and desires.

True, there are jobs a handicapped person can do depending on the disability and the availability of work. Work is often times found for the men-tally challenged by the system and for the very brilliant, accommodations can be made at universities and in laboratories. But for the vast majority of us, who have just average intelligence, there isn’t much emphasis on placing us in the workforce or allowing us to supplement our stipend without penalty to raise our standard of living. We are forced to work, under the table, so to speak, and we don’t like having to do something illegal just to make a dollar.

Something should be done about this in the legislature, but I don’t know how to go about it. I don’t understand why the legislators don’t see that it costs less to keep someone at home than in a skilled nursing facility. I, for one, would rather die than be warehoused. Post polio syndrome brings a lot of pain with it, as well as diminishing abilities. I have no tolerance when it comes to pain and even though I take pain medication, it never seems to be enough. I have a fear of taking too much medication to quiet the pain and slipping into a coma. Being in a coma is totally unacceptable to me. So I live with pain, some days better than others.

It would be so easy to put an end to it and then something snaps in my brain that pulls me up with a jerk and says, "Don’t feel that way. There are days that are good. You have friends who would be hurt by your passing." I noticed that people who say that suicide is a selfish act are never the ones who have contemplated it. I’ve also noticed that these people end up giving me a lecture on religion or the law in case I am unaware of the taboos against suicide. There are many debates now concerning assisted suicide and people have very decided opinions on the subject. It’s not easy to come to any universal conclusion because it is such an individual choice. It is not a subject to be taken lightly and I don’t. Yes, there are times when I want to be dead but they are followed by times when I am glad to be alive. And so the seesaw goes on.

As it stands today, I do not choose to die but tomorrow I may. Circumstances change, sometimes abruptly, and we should have the right to terminate a life that has become intolerable. Can an individual make this decision freely, given current societal constraints? Suicide is against most religious principles. This creates a strong ban against it in our society and makes it difficult for both the religious and the non-religious person to make a decision to end their life, regardless of the circumstances under which they are living. They feel suffering is ennobling to the soul and welcome it.

Doctors, trained to save lives, find it difficult to participate in a termination. It is against their Hippocratic Oath. So the medical field is naturally against this procedure with most doctors being reluctant to even discuss the issue. Before people make a decision about suicide, they should discuss the diagnosis and prognosis of their illness or condition with more than one doctor to clearly understand the situation they are facing. It behooves us to make sure we are not just going through a period of despondency, which we all do at times.

As long as I have my mind I want to be able to make the decision for myself. I have an over riding fear of lying in a coma and not being able to make my own decisions. I do not want to be resuscitated and live in a coma for years, so therefore I have made a legal document, stating what is to be done, if such a case should arise. I want no heroic measures taken to keep me alive.

Up until now I have been skirting the issue, avoiding the worst case scenario where the pain is unbearable and life has but a short time to be lived. When the point is reached where the pain can no longer be kept under control with a morphine pump and life is a living hell, then I think the patient has every right to ask his or her doctor to help put a merciful end to it. It serves no purpose for a person to live in agony when it can be alleviated. Death comes to all of us sooner or later. This is just bringing it a little sooner, in a merciful way ending the extreme suffering.

I had a friend, Gordon, with post polio syndrome who bought a gun and said he would take his life when it got too bad. But one morning he found he couldn’t lift the gun anymore so his way out was gone. His doctor would not aid him. He said to me, "Isn’t it strange that we don’t let our dogs or our race horses suffer but we expect our loved ones to endure the pain." He died a long lingering death gasping for each breath.

It would be so easy for a doctor to just order an overdose of pills and it would be all over in a few compassionate minutes. I don’t want what happened to Gordon to happen to me. When things get too bad, I want a doctor’s assistance, so my life can end peacefully. I feel I have a right to that decision. It’s my life, not someone else’s and I should have some control over it and its end.

"Partial Text of Chapter"

15

Euthanasia — Considering

Death Over Life

A Psychologist’s Perspective

by David R. Cox, Ph.D., ABPP

BEEP..BEEP..BEEP..BEEP.." My pager was sounding and lit up with a telephone number followed by the code 911. Emergency. I got up from the Board of Directors meeting into which I had just settled and reached for my phone. "You’ve got to come quick. They say my father burst an aneurysm and may not make it. I need you..." I received calls like this before, especially when working full-time in hospital settings. However, this time, it was different. This time, I was responding to a call from my wife...

Jumping on the next plane, we flew to New York and rushed to the hospital. My father-in-law had been a walking time bomb. For years, he had cardiovascular problems as well as an abdominal aortic aneurysm. It was amazing that he had not passed away within five minutes of the burst aneurysm. Somehow, emergency medical technicians had gotten on the scene rapidly enough to keep him alive. When we arrived at the hospital, he was in emergency surgery. The hours and days that followed took me through an experience with my own family quite similar to those that I had been through on numerous occasions before with others.

The fact that this occurred the week I had promised this chapter was especially uncanny. The 72 hours that ensued following my being paged took myself and the rest of our family through the gamut of emotion — anxiety, fear, fantasy, depression, prayer and eventual resolve that I have seen on numerous occasions. This time, though, I wasn’t there simply as an outsider — a relatively detached professional — but, rather, as a family member with the mixed blessing of understanding all of the medical and psychological issues with which we were all trying to deal. This time, very personal feelings had to be weighed in with what usually was provided as a compassionate, yet objective professional opinion.

END OF LIFE ISSUES AND EUTHANASIA

Euthanasia. These days the term, and act, is at least openly discussed. Most of us in the medical professions know that for years it was not spoken of even though the act certainly occurred. Euthanasia as a concept and act has significant implications to many individuals and families. It may be perceived by some as the act of an irrational individual, by others as rational suicide and by yet others as murder (when it is assisted).

It is not my intention to sway the reader in one direction or the other with respect to "right or wrong". In fact, I’m not entirely certain that I yet have a firm stance on this. I see "both sides" of this issue in my professional work and understand the perspective from which persons argue pro and con. I understand the multitude of reasons that a person might consider ending life, decline medical care, or go the other direction and decide to fight a condition "against all odds". These are not easy problems with which we grapple, regardless of the decision that is made after careful consideration. And hope-fully, one does give such a weighty issue careful consideration. My hope is that by sharing some of the issues that I have had occasion to help patients and loved ones consider, and now dealt with from a much more personal perspective, the reader will understand the very difficult thought process that is required of a person, their loved ones, and the medical professionals, taking a considered approach to life versus death.

As stated, this thought process is not required solely of the individual who is ill or injured. It is also required of the healthy loved ones and medical professionals in that person’s life — for they must deal with the topic even if they are given no significant say in the matter. They may have to live with the decision, though the decider of fate has since passed away. Or they may be forced to take a more active role, whether through emotional pleadings from others or medical/legal requests or mandates.

Why a Psychologist?

The work of a psychologist is commonly misunderstood. Mention that I am a psychologist and many people respond by "Oh, I could use your advice" or "Oh, no...I’m not crazy, am I?". But psychologists do much more in our health care system (and elsewhere, for that matter) than many people realize. My work as a psychologist has not been limited to helping people with "difficulties in living", as might be portrayed to the public on the television show Fraser or the older Bob Newhart Show. Neither has it concentrated solely on those with severe mental illness as depicted publicly in popular films like One Flew Over the Cuckoo’s Nest. Rather, in addition to my office, my work has taken me from intensive care unit to locked psychiatric unit, to jails to pediatric wards and elsewhere. Patients with a variety of problems, to a large degree directly related to medical illness as opposed to a purely "mental ill-ness", have either been referred to me or sought out my assistance. Although many of life’s difficulties do not require medical attention, relatively few serious illnesses or injuries are free from psychological difficulties. It is with those people who have emotional and physical ailing that I have worked most.

Within this realm, I have had many occasions to interact with people debating the decision of life versus death. The issue of death has come up in a variety of ways. Suicide is not an uncommon issue of discussion in my line of work. In fact, most of the patients that I have evaluated and/or treated have struggled with this at one time or another. They may be desperately emotionally stressed and see suicide as their best, or at least seemingly simplest, solution or escape. Many survivors of traumatic injury or serious illness wonder, "Would I be better off dead?" Some other patients are not struggling with whether to bring on their own death, but have already faced death acutely through heart-stopping cardiopulmonary arrest or severe brain trauma from an automobile accident. Yet others have to face death on a daily basis as they fight life-threatening cancer or autoimmune disease. They all confront death, their mortality and the very real and practical issues that exist in deciding if life is worth living. "Would my family be better off with-out me?", "You call this living?", and other such struggles are voiced silently or out loud as they try to make sense out of their current condition, their future (if they decide to have one) and the stresses of living with terminal ill-ness, chronic disability or presumed ineffectiveness and unimportance.

The "Mind-Body" Dichotomy

Over the years my work with a variety of patients has ranged from those with severe problems such as schizophrenia and other conditions traditionally viewed as "mental illness" to others whose primary diagnosis is traumatic brain injury or a cancerous brain tumor — conditions generally viewed as "physical illness". I have come to firmly believe that the distinction between mental and physical illness is a false one. Not only is it false, but it is also misleading and seriously detrimental to individuals as well as society as a whole.

It has led to a perception that there is a dissociation between physical and emotional well being, and in so doing has led to a socially acceptable denial of the responsibility one has in regard to how one’s behavior and emotion effects one’s physical health. As well, it has led to neglect, within society and the medical community, of the serious effects that physical ailments can have on one’s emotional and behavioral well being. This is not to deny that there are issues that are psychological (mental) processes relatively (or perhaps entirely) free from physical "illness", but rather the two are inexorably intertwined and therefore to totally separate them is a critical mistake. Mental processes are not predetermined, biologically-driven events over which we have no control — and therefore need claim no responsibility. The physical and mental interact and are interdependent. Just as an automobile engine requires both gasoline and an engine to operate, the human body requires both mental and physiological processes to "operate" as we know it. The problem comes in measuring whether or not these aspects — mental processes and physiological processes — are functioning, and functioning properly.

What of the Spirit?

Let’s make this scenario more complicated yet.

In addition to the physical and emotional status of an individual, I believe that the spiritual well being is equally, if not more, important in one’s life. Spiritual issues almost invariably come up in my practice, as people either struggle to find meaning in life or explain their faith as one reason they are able to go on living despite exceedingly difficult circumstances. It is common for me to hear from my patients with brain tumors that their faith keeps them fighting the cancer. It is also common to hear from survivors of traumatic brain injury, or others with chronically disabling conditions, that the injury or illness has left them with a new-found positive perspective in life — with a renewed and revised sense of the priorities in life. They frequently indicate to me how they now see the importance and value of things previously minimized or dismissed (such as relationships and time with people) and the relative unimportance of "worldly" material items. I give thanks to my patients in this regard, as they are constant reminders to me of the priorities in life that are so easily overlooked or taken for granted by those of us who are relatively "well".

People familiar with the writings of Victor Frankl, the psychiatrist, founder of Logotherapy and survivor of Nazi concentration camps, recognize this theme. Those not familiar with his writings owe it to themselves and their loved ones to read his book Man’s Search for Meaning. Professionals dealing with these issues will hopefully be familiar with that as well as his book The Doctor and the Soul. Dr. Frankl is one of many authors to write about overcoming tremendous odds, severely depressing environments, and ghastly horrors to see the strength of the human soul and the tremendous significance of personal meaning as a reason for being.

"Partial Text of Chapter"

16

What We Should Do

Besides Killing People

by Barry Eliot Cole, M.D., M.P.A.

Administrator, National Pain Data Bank and Pain Program Accreditation,

American Academy of Pain Management

Sonora, CA

I MUST NOT GET IT!

Since when is killing someone who might be nearing the end of life appropriate? Why is killing someone who is suffering from a serious medical illness or even a terminal condition the best that we can offer? What about all of the wonderful technology that now exists? What about all of the new medications that keep coming out on the market? What about the changes in state laws that make strong pain relieving medications more available and lessen the risk for physicians prescribing them?

What has happened to our society and to us that we would enthusiastically look to euthanasia and physician-assisted suicide as the best solutions for the medically ill? With all of the wonderful techniques, skills and medications available for relieving pain, physical symptoms and suffering, the increasing interest in and provision of hospice care, and a desire by most people to put an end to violence, how ironic that we would even consider euthanasia as the best option.

One of the core principles of the Judeo-Christian tradition deals directly with murder. According to these teachings and beliefs we shall not commit murder. "Shall not" is the same as "no," and "do not do this." What part of "no" is not clear? Murdering people is wrong and euthanasia is just another form of murder. Deliberately taking any life is murder regardless of the under-lying motivations. To clean up the fact that murder is somehow not wrong when we perform acts of euthanasia we rationalize what is being done by claiming that "merciful killing" is beneficial. Merciful killing is beneficial for whom? Is it beneficial for the people suffering from unpleasant illnesses or for those who watch loved ones suffering?

I am not naive. As a psychiatrist for two decades it is clear to me that those wanting to die do not need my help in any way. They are perfectly able to jump from high places, cut their wrists, put guns in their mouths, hang themselves, drive their cars into immovable objects and take any number of different household poisons. Physicians have little to offer those bound on self-destruction considering the wide range of readily available means that are highly effective in the community. Physicians and other health care professionals are only able to help those who are ambivalent about dying and desire help. Practitioners cannot be everywhere and importantly cannot be all things to all people all of the time.

Are there other options for the potentially terminally ill beyond killing them? I believe that there are many options available and none of them involve the deliberate taking of life. What drives the desire for an early demise may be the fear that the system is not able to deal with end-of-life care? That when we become too ill we will be abandoned by our loved ones and caregivers, left with broken bodies and in terrible pain that cannot be relieved. Are these the reasons that leave so many people sadly believing that suicide and euthanasia are their best and only options?

LESSONS FROM THE EDUCATION FOR PHYSICIANS ON END-OF-LIFE CARE (EPEC) CURRICULUM

The Institute for Ethics of the American Medical Association developed the Education for Physicians on End-of-life Care (EPEC) curriculum in 1999 with a grant from the Robert Wood Johnson Foundation to educate 750,000 American physicians about palliative care for the terminally ill. While not the only curriculum dealing with the care needs of the terminally ill, the EPEC curriculum has become the most widely publicized and universally distributed program. Many of my ideas come from the EPEC curriculum. Physician-assisted suicide and euthanasia are ancient medical issues. We have not just stumbled on to these topics in recent times. Physician-assisted suicide involves the aiding or causing of a suffering person’s death whereby the physician provides the means to commit suicide, but the patient performs the act of self-destruction. Euthanasia involves the physician performing the life ending intervention, with or without the permission of the patient. It is thought that most physicians receive requests for assistance with dying and such requests are usually signs of patient crises.

For practitioners there are serious legal and ethical concerns about assisting people to commit suicide or actively taking their lives. Practitioners have an obligation to relieve pain and suffering, and to respect decisions to forgo life-sustaining treatment. Rather than rushing to extinguish life, the EPEC curriculum provides a logical approach for responding to requests for assistance with suicide.

Although the United States Supreme Court has recognized that there is no fundamental right to assistance with suicide it has turned the debate over to the individual states to resolve. While the legal status of physician-assist-ed suicide can possibly differ from state to state, only Oregon has made such assistance legal as of 1999.

WHY DO PATIENTS ASK THEIR HEALTH CARE PRACTITIONERS FOR ASSISTANCE COMMITTING SUICIDE?

Some patients suffer a crisis of confidence about the goals of their treatment or the management of their many physical and psychological problems. Others have profound fears about possibly suffering with their conditions and they develop concerns about potentially losing control or becoming burden-some for others. Those who experience depression or high levels of pain may become likely to seek professional assistance in ending their lives. Because of this desperation, professional caregivers must be able to work with seriously ill people and to help them find alternatives other than assisted-suicide.

Many physicians sadly believe that they are not adequately trained to address end-of-life issues. Others are just too busy to provide the comprehensive care necessary to manage patients with serious and life-threatening illnesses. The lack of reimbursement and the need to see large numbers of people in managed care environments causes many physicians to just not address requests for suicide in any way. What is first needed when practitioners are faced with requests for assistance committing suicide is for these practitioners to clarify what the requesters desire. What are the requesters actually trying to achieve? Not every request for assistance must be acted upon. Not every requester is actually making a direct request for immediate death. There may be many other issues to resolve.

Requests must be examined carefully and critically to determine the underlying root causes. These requests involve the provision of education about the legal and ethical alternatives for symptom control, the ability to limit the scope and duration of selected treatments, along with promoting greater levels of physical and psychological comfort. To thoroughly clarify requests for assistance with suicide practitioners must demonstrate their immediate concern and compassion. These are not the "problems" that are adequately explored in the hallway or in five-minute office visits. Practitioners must determine if requesters are motivated to kill themselves because of underlying thoughts (ideation) regarding suicide, direct disease effects, medication toxicity or other issues. For safety reasons practitioners must be able to determine if their patients are imminently pre-pared to