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THE SECOND TURNING POINT: MAKING THE DECISION TO HASTEN DEATH

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At the end of life, if you are suffering intolerably even though all comfort measures have been applied, you and your family may feel that dying is preferable to living. If this is the case, you have reached the second turning point: the wish to hasten death. Making this decision can be very difficult, but there are ways to address it systematically.


A TERRIBLE OUTLOOK IN A PATIENT WITH CANCER OF THE TONGUE: WHAT TO DO FOR DAVID?

Quite a few years ago, David developed cancer of the back of the tongue. He was a man in his early sixties who had long been a patient of mine. Although the growth had been treated, it had now returned, and the situation was serious. He was an outgoing person who always seemed to enjoy life, but as he sat in my office with his wife, Abigail, we all were dispirited.

The new and latest recurrence was interfering with his swallowing, and obstruction of his breathing passages was not far off. Further surgery had been considered but was not thought possible. He had had the maximum amount of radiation the area could tolerate, and at that time, chemotherapy for this particular growth was not an effective option. Because we had no definitive treatment that would cure or slow the cancer, comfort measures were all we had to offer, and his death would not be free of suffering.

I had not spoken to David and his wife about my fears, but inwardly I was extremely apprehensive about what he faced. It seemed to me that a very bad death—losing his ability to swallow, choking on his secretions, and having his airway compromised—lay ahead. Principally, I feared that his ability to breathe was going to be severely limited by the increasing size of the cancer mass, which would slowly cut off the air passage to his trachea and would interfere with his ability to handle normal respiratory secretions. This would cause him severe anxiety and agitation. It was not a matter of pain—we could treat pain with the management techniques that were then available. The problem was the distress David would experience as the growing cancer obstructed his airway passages and throat.

David was going to be one of those very occasional patients in a physician’s lifetime practice who, in spite of the best possible care, still suffers unrelieved and intolerable distress, such that the patient prefers death over continued living. The unrelenting misery cannot be sufficiently dealt with by even the best of comfort measures. This situation goes beyond physical pain, which may or may not be present. I was convinced that this was going to be the case with David. He had not at that point said anything about hastening his death, but he was clearly apprehensive about the future.

We sat there for some moments without saying anything. David broke the troubled silence by broaching the subject so far unaddressed. He said, “This whole thing is so discouraging. I want to end my life soon and not go through all that’s ahead. I’ve been afraid to bring it up.”

He had researched his options and told his wife and me that he could end his own life by taking a large dose of Sec-onal (a barbiturate that then was used primarily as a sleeping medication for insomnia). There was another silence, as he looked first at me and then his wife. I knew what he was talking about and knew privately that, if I were in his shoes, I would be thinking the same way. He then informed us that he had accumulated a sufficient dose of the medication. If he took all the capsules he had, within minutes he would be asleep, and within a very few hours his breathing would stop.

David’s statement jarred Abigail. She wanted to support him in any way, but she had never addressed, in her own mind, the thought of his ending his life. I felt unable to advise him on this subject (this was early in my career, and I was still trying to formulate my own position on such a matter), but I told him I would try to relieve his distress as the next few weeks went by, principally by using large doses of morphine to dull his symptoms and awareness. I said that if very large doses of morphine were needed, this might, as a consequence of treating his severe symptoms, shorten his life by some hours or days but that I would use whatever was required to keep him comfortable. I told him that if he decided he wanted to use the Seconal on his own to end his suffering sooner, it had to be his decision and his action.

David’s consultants and other caregivers to that point had done everything right. Throughout the previous several years, he had been seen by multiple specialists at one of the very best cancer facilities in Boston. He was twice brought back to reasonable health by aggressive intervention, but now, when cure seemed no longer possible, he had recognized and dealt with the questions of the first turning point and elected comfort care only. He, Abigail, his cancer specialists, and I redefined the goal of his treatment: We would shepherd him through his dying process with as much peacefulness as possible. All of his caregivers continued to provide meticulous and frequent attention, and as his family physician, I certainly did not pull back from the situation just because we were stopping efforts to cure. David’s psychological needs increased, and they were met in the best way possible by everyone around him. His moderate pain was controlled with strong medication in big enough and frequent enough doses. David had no unwanted tube feedings or intravenous fluids (we had a clear understanding that we were not to use these), and all medications were stopped, except those needed for comfort.

We had addressed all of the big and little problems of comfort care in the best way possible, yet this seriously bad future still loomed ahead.

I was thankful that David had the knowledge and wherewithal to develop the Seconal option on his own, to be used if things went as poorly as I expected. Still educating myself about end-of-life options at that time, I was not sure what I would do had he not raised the issue himself.

Over the next couple of weeks, David, Abigail, and I met several more times, and each time David reiterated his wish to hasten his death. David was absolutely clear in his mind that a planned death was what he wanted, and his tenacity in this belief reassured Abigail to the point that she supported him in this wish. Abigail had only one proviso: “I do not want to know, David, when you are going to take medication to do this. I love you, and want for you what you want, but you have to do this.” David understood, and gently and courageously told her that he did. I listened to all of this, but did not counsel them about the decision. They came to it on their own.

A few days after that, Abigail telephoned me at 6 am to say she thought David had died. I immediately went to their house and found him looking perfectly peaceful—fully dressed, lying on his side with his hands folded together under one cheek—as if he had simply gone to sleep. He had died quietly by his own hand. I was relieved and so was Abigail. David’s trials were over at a time and in a manner of his own choosing. The only thing I regret about his death now, years later, is that he died alone. Even though Abigail had not wanted to know or be present, many doctors now would encourage her to allow a trusted person to be with her husband when he ended his life.

David was like many at the end of life. After the first turning point had been reached and agreed upon, he had been too afraid to ask his doctor about all the possible options for shortening the period of suffering. Today, your physician may be more aware than I was those years ago. These questions need to be raised in a proactive way.1 However, some physicians still will not raise the subject with those patients who have not been able to broach the issue on their own. Even if the patient is the one to raise the question of hastening death by an overdose of barbiturate, the use of helium (discussed more fully in Chapter 9), or other overt and clear-cut means, the doctor may still evade the question or state frankly that he cannot help. However, with the passage of time, further education, and a more permissive legal environment, this is changing so that the option of hastened death is more often easily discussed in these dire situations.

Properly given comfort care ensures that the overwhelming majority of patients do not wish to hasten death. This is vital to emphasize. Patients are not likely to consider the options for a planned, earlier death until optimal comfort care has been given but is no longer effective. Although vigorously applied pain and comfort measures should suffice to provide a peaceful death in the vast majority of instances, patients and families need to be prepared to deal with the infrequent situation when intolerable distress persists in spite of all usual measures, as was about to happen in David’s case. In these instances, the situation declares itself and is undeniable. Hastening death means ultimate control for some people facing the end of life: the right to determine when and under what circumstances they can end intolerable suffering after all other options have been exhausted.

Hastening death is part of a spectrum of end-of-life care. It is not suicide in the usual sense, in that the principal cause of death is the basic disease process that has brought a patient to the brink of death. Planning a death on one’s own terms does not take away from the causality of the underlying disease.


HOW HAVE DECISIONS FOR HASTENED DEATH BEEN MADE? QUESTIONS THAT MUST BE ASKED

In the following two chapters we shall go over each of the options that have been used for hastening death, but before doing so, we should consider the questions that patients and families have asked in order to decide whether this could be the best course and a proper action.

In the past, others and I have outlined suggested safeguards for any action that might hasten death.2 A series of questions have been asked by patients to be sure rational decisions were made. If the answers to the following questions were all “yes,” then patients and families facing this dilemma probably have been reasonably comfortable and at peace with a planned death. These essential and mandatory questions have been raised appropriately not only by those who wished to discontinue unwanted treatment (in favor of comfort care only) but also by those who sought more aggressive measures for hastening death.

(Note that in the Oregon law permitting physicians in that state to give assistance in dying, many of these questions are codified in the law as formal requirements. The law is discussed in detail in Appendix B. This groundbreaking referendum makes it legal for physicians to aid patients who wish to hasten death under certain circumstances, and numerous safeguards are built in to prevent any abuse. The law applies only in Oregon, although several other states are looking at enacting similar legislation.)

Here are the issues patients in the past have properly addressed with their caregivers when they wished for a hastened death. The first eight relate to whether all other options that would relieve suffering have been considered carefully and judged not to be helpful or possible.


  1. Have all acceptable options for treatment of the basic disease been exhausted? In the case of malignant disease, have further surgery, radiation, chemotherapy, hormone treatments, and other possible basic treatments that aim to cure or at least improve the patient’s condition been considered? (This does not mean that every possible treatment should be offered or undertaken, but rather those treatments that have a reasonable chance for success. In an earlier chapter of this book, we address the question of how one decides what is reasonable, a decision that depends largely on the degree of probabilities with which one is comfortable. This is an individual choice on which people will differ.)
  2. If pain is present, has it been addressed with modern techniques of pain control? Very few instances occur in which pain cannot be controlled satisfactorily if remedial measures are aggressive and modern in approach. Specialists in pain control can assist the regular doctor in this effort, and their services should be employed when ordinary pain control measures do not suffice. Rarely should a patient wish for hastened death because of pain that cannot be controlled— although very occasionally this does happen.
  3. Apart from pain per se, one may suffer a high degree of misery and distress that makes one wish for life to be at an end. Have all the aspects of such distress been analyzed to see what can be relieved, and how? Has aggressive action been taken to relieve all the factors that are susceptible to relief?
  4. Have all consultants been called in who might offer some form of relief for the conditions causing the intolerable distress? Have second opinions been pursued in cases of doubt about some issue?
  5. Has clinical depression been ruled out? This question is discussed in Chapter 10. Most people experience appropriate sadness near the end of life, and this is different from clinical depression, which is usually amenable to various treatment measures. If depression seems to be a problem, proper consultation and treatment should be sought since depression may and usually does aggravate feelings of intolerable suffering.
  6. Have all the services offered by hospice, home care programs, social service consultants, and other service organizations been utilized to their maximum? Patients with desperately bad situations that produce a sense of hopelessness can often better tolerate their plight if they have sufficient psychological and physical help.
  7. Has comfort care been applied with intensity and great attention to detail in all areas?
  8. Is the suffering person fully informed about all alternatives?
  9. Has a second physician confirmed that the disease process is in a terminal stage? In end-of-life issues, terminal refers to a disease process that will lead to death in six months. Many people have argued that the right to hasten death should not be restricted solely to patients with terminal disease. They feel that patients who have an intolerable, irremediable disease or condition, such as quadriplegia or the threat of future dementia, which is not terminal, should be granted the same autonomy over the manner and place of dying as is possessed by a terminal patient. This proposition will take time to resolve, and at present most ethicists and legislators do not defend it. Therefore, I am staying with terminal disease as being a proper criterion for hastened death, although hopefully in the near future, a broader and more liberal position will evolve—a change I would support.
  10. Is the patient competent to decide? For Alzheimer’s disease and other forms of dementia, we need better answers that will probably require legislative action, but this will take time. I presently have no good answer for hastened death in dementia since the voluntary hastening of death requires the patient to have the mental capacity to make an informed decision and to carry out the act himself or herself, and that—by definition—is usually impossible with Alzheimer’s. It is difficult for such a patient to determine a time for hastening death since, by the time things are obvious, the patient is often beyond the point of being able to carry out the desired measures. In 2005, I participated in an attempt to work out some guidelines for this particularly difficult problem with a group of physicians, attorneys, and lay persons in the Boston area.3 An essential question to address is the matter of “precommitment.”4 How can (with respect to hastening death) a present competent self have the authority to bind with an advance directive aimed at a future noncompetent self? What if the incompetent self wants to continue to live? With which self should family and doctors side? There is no easy answer. In Chapter 11, we discuss further the use of a special advance directive for Alzheimer’s disease and other forms of dementia that, if enabled by new legislation, could help resolve this dilemma.
  11. Is a person contemplating hastened dying fully informed and understanding about what is involved in a hastened death? Is the decision clearly and completely voluntary?
  12. Does the degree of suffering warrant ending life prematurely? Is the suffering intolerable? The definition of the amount of suffering that is intolerable is a subjective one for which people will have different answers. What is intolerable for one person may not be for another. This is as it should be, and the definition of intolerable suffering should be left to the individual. It does not have to involve intolerable pain since other problems can cause suffering: fear of pain, fear of losing control, loss of dignity, generalized discomfort and distress, profound weakness, persistent and severe nausea, and other symptoms that may take away any sense of quality of life. What is important is the amount of suffering perceived by the patient.
  13. Does the suffering patient believe there will be minimal deleterious effects on the survivors from a decision to end life in a planned, hastened way? The answer to this question in most instances depends on the degree to which family and friends have been prepared for the act of hastening death. When a hastened death occurs, there is the possibility that survivors will have feelings of anger, guilt, or regret— all of which at times may be severe. However, if survivors understand ahead of time the reasons for the hastened death, these feelings should be minimal or nonexistent. The primary feeling usually is one of relief that the suffering for their loved one is over. When discussion about the act ahead of time is possible, this is most often all that is necessary to enable survivors to feel comfortable. Sometimes, however, people choose to proceed in secrecy when they know or suspect family members are opposed, but it is better to try to “talk it out” ahead of time so that survivors can be understanding and supportive.
  14. Has every effort been made to have the physician closely involved in any move toward a planned, hastened death? Although some doctors will not be supportive because they believe for legal, ethical, or religious reasons they cannot advise about options for hastening death, patients are often surprised by the empathetic response from their doctor when the subject is broached. Involvement of the personal physician is tremendously reassuring to the patient, but unfortunately legal constraints are a big consideration when the physician thinks of having any role in a death that goes beyond simply withdrawing treatment, using large doses of morphine to treat severe symptoms of distress or pain, or treating symptoms in a patient who has elected to forgo fluids (a means of hastening death that we discuss later in this book). The physician in many jurisdictions can arguably be potentially liable legally if he or she actually assists in a suicide or discusses options for suicide with the patient in a manner that appears more advisory than merely informative. The line here may be a thin one, and the physician needs to exercise caution to avoid crossing it. The cautious physician, wishing to remain on the safe side of the law, will probably provide factual, historical information rather than deliver instructions or advice prospectively as to what should be done.
    Many physicians may perceive legal risk (even in situations clearly within the law) and thereby are reluctant to discuss the matter. If sufficient information cannot be obtained, you have every right to change medical care to a doctor who will support your wishes in whatever legal ways he or she can. Hopefully, however, you have already ascertained earlier in your relationship with your doctor his or her general feelings on this matter.
  15. Lastly, patients have had to decide whether they feel morally and ethically at ease with hastening death. No one should press their own values on a patient. There are people who, for religious or ethical considerations, feel they could never purposely end their own life. Many believe that no one other than God has the right or power to decide when life begins or ends. A decision to hasten death would be very difficult for such a person. Each person should have the right to make a decision that is consistent with his or her own beliefs, and no religious organization should have the last word.

Those who have had some indecision on this last point have benefited from remarks made by Bishop John Shelby Spong, Episcopal Bishop in the diocese of Newark, in a keynote address to the Hemlock USA (predecessor to End-of-Life Choices, now Compassion and Choices) meeting in San Diego on January 10, 2003. He said, in part:

“I believe that if and when a person arrives at that point in human existence when death has become a kinder alternative than hopeless pain and when a chronic dependency on narcotics begins to require the loss of personal dignity, then the basic human right to choose how and when to die should be guaranteed by law and respected by our communities of faith. . . .

“In the course of our history, we Christians have never left the power to die exclusively in God’s hands. Rather we have fought religious wars in which people were killed quite deliberately . . . The records of history show that Christian rulers in ostensibly Christian nations, aided and abetted by the prevailing religious hierarchies of the Christian churches, have shown no reluctance whatsoever in claiming the right to take the power of life and death from God’s hands and to place that power squarely into their own very human hands. . . .

“When medical science shifts from expanding the length and quality of life and begins simply to postpone the reality of death, why are we not capable of saying that the sacredness of life is no longer being served, and therefore Christians must learn to act responsibly in the final moments of life? . . . Do we human beings, including those of us who claim to be Christians, not have the right to say ‘that is not the way I choose to die’? I believe we do! . . .

“I think this choice should be legal. I will work, therefore, through the political processes to seek to create a world where advance directives are obeyed and where physicians will assist those who choose to do so, with the ability to die at the appropriate time. I also think the choice to do this should be acclaimed as both moral and ethical, a human right if you will. . . .”

You may take comfort from these arguments of Bishop Spong if hastening death is being considered. There is no reason for religion to stand in the way of the autonomy that is deserved. Being religious and believing in autonomy at the end of life are not inconsistent positions.

In the past, when these questions discussed in the last few pages have all been addressed individually and each has been resolved with a “yes” answer or at least has been properly considered, patients who faced intolerable and unrelieved suffering were able more easily to make a decision as to whether they should undertake a course of action aimed at hastening death.


SUMMARY OF ARGUMENTS FOR PLANNED, HASTENED DEATH IN THE INTOLERABLY SUFFERING PATIENT

The death with dignity movement has regularly come under attack from some who use questionable logic in their opposition to physician aid-in-dying. The following points can be considered in countering their criticisms.


  1. The right to choose the time and manner of your dying is a matter of personal autonomy. Case law (the body of court decisions that sets precedent) in this country usually supports concepts of autonomy of the individual.
  2. At the end of life, if you choose to hasten death in a terminal disease, you are freely exercising a choice and preference. Nothing is forced. People who choose not to hasten their deaths are under no pressure whatever to do so. The Oregon law very explicitly guards against this, effectively so, and there has been no abuse in this regard. In the same way that proponents of the option of hastened death do not impose their beliefs on others, those who do not wish this option should not deny the right to others who do.
  3. Hastening death should be an option only when suffering is intolerable and cannot be relieved by usual treatment. It is considered only when all else has failed. The need for hastened death is an extremely occasional one because comfort care is now so advanced and improved. There does, however, remain the very infrequent situation in which the suffering patient justifiably can request assistance in ending life.
  4. The Oregon experience (we address this in detail later in Appendix B) indicates that there is no rush of patients to avail themselves of this option. The number of people who have used the law remains very small in comparison to the overall death rate. No abuses have been observed by state authorities in Oregon, and there is no evidence that legalization of physician aid in dying creates a “slippery slope” of abuse of this option.
  5. The experience in Oregon has shown that legalization of physician aid-in-dying leads to improved overall care of the dying, such that now Oregon leads all other states in several important measurements of the quality of comfort care.5
  6. Assisting a person in ending life should be considered part of the spectrum of treatment for the dying patient. For those whose intolerable suffering cannot be relieved, ending life can be the most humane and compassionate treatment.
  7. There is no inconsistency between being a devoutly religious person and favoring legalized aid-in-dying.