8
WHAT OPTIONS HAVE BEEN USED IN THE PAST TO HASTEN DEATH?

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Now that we have seen how an intolerably suffering patient might make a decision to hasten death, we need to examine the methods by which this has been done in the past. There are some methods that have produced real problems and others that have led to relatively peaceful and certain deaths.

Any person who has intolerable suffering and who wishes the end of life to be hastened has already recognized the first turning point and has substituted comfort care for attempts to cure.

What can be done beyond that if suffering persists intolerably at the second turning point, when a person feels that death is preferable to continued living?


METHODS USED IN THE PAST THAT ARE OFTEN UNSUCCESSFUL OR PROBLEMATIC


  1. The use of a gun or other violent method to commit suicide is at times a choice patients think of when they do not know what else to do. Too often the attempt does not succeed, and aftereffects on surviving family and friends make this painful emotionally.
  2. The use of carbon monoxide from automobile exhaust in a closed garage has been used for many years as a method for ending life, but it frequently fails. While it is true that carbon monoxide in a high enough concentration is lethal, there are too many occasions in which people attempt this method to end suffering only to find that a variety of mechanical and logistical problems frustrates their attempt, and the attempt simply makes them sick or produces brain damage without ending life.
  3. Stopping eating (starvation) has been very slow and protracted as a means of ending life. Although persons with terminal illness who have tried this method have lost weight due to reduced food intake, the avoiding of food in order to end life has been drawn out and difficult emotionally for both patient and family. However, discontinuing of all fluids, thereby inducing terminal dehydration, has been a successful option, as we shall see later in this book.
  4. Euthanasia is so clearly illegal in the United States that it is not considered here as an option in this country—although some physicians or nurses witnessing great suffering do it secretly, and distraught family members have also resorted to euthanasia by one method or another. Euthanasia is an overt, physical act, such as that of a physician who administers a lethal injection of some sort, that ends the life of the patient at that very time. Euthanasia is different from physician aid-in-dying, as practiced legally in Oregon, in that the physician in the latter instance does not actually perform a physical act that causes death at the time; instead, the patient must himself or herself perform the actual physical act (e.g., ingestion of a lethal dose of medication or performing the physical acts necessary to end life with helium [see Chapter 9 on helium]). I believe that euthanasia, as performed in The Netherlands (see Appendix C), should become a legal possibility for patients in the United States, but that is not going to happen anytime in the near future.

SUCCESSFUL MEANS BY WHICH SUFFERING HAS BEEN SHORTENED AND DEATH HASTENED


  1. Withdrawal of unwanted treatment and procedures. The stopping of any intrusive or unwanted therapy has been part of the basic change of approach at the first turning point—a result of the decision to render comfort care only. Unwanted measures can include artificial nutrition or a respirator. Discontinuing treatment has been discussed in the chapter on comfort care, and has been a self-evident first step. There is no legal or ethical problem when a competent patient or a duly appointed agent of an incompetent patient refuses unwanted treatment.
  2. Administration of morphine and sedating medications in whatever large doses are necessary to relieve the intolerable suffering. At times, this has meant that life is shortened by the medications needed to produce relief.
  3. Voluntary refusal of all hydration (fluids) leading to terminal dehydration and an earlier death. To be successful, this needs to be accompanied by a doctor’s administering any needed medication for distress or pain.
  4. Aid-in-dying from the physician in the form of prescribing barbiturates to be taken by the patient (physician aid-in-dying). This is the approach that has been used legally in Oregon.
  5. The use of helium. This is a new mechanical means of hastening death that has not necessarily required physician involvement.

The first three options listed above are generally regarded as legal in any jurisdiction, but the last two have legal issues, as we shall see. In this chapter, we shall describe these options in more detail except for withdrawal of unwanted treatment, which has been covered earlier in this book, and the discussion of helium, which is covered in the next chapter.


INCREASING DOSES OF MORPHINE

In the chapter on comfort care, we addressed Marie’s situation in which she discontinued unwanted treatment after the first turning point was defined. (You may recall that she had rejected continued tube feedings when her cancer of the esophagus was no longer able to be checked in any way.) Her case pointed out the important role of increasing doses of morphine used to control general restlessness, anxiety, and any possible sensations of thirst—in addition to controlling her pain. In Marie’s case, the large morphine doses necessary were associated (probably) with an earlier death, but they allowed her last few days to pass in relative peace since the morphine put her into a somnolent state in which she was largely unaware of her distressing situation.

Morphine is an old but still frequently used medication. Many physicians feel that if they could have only one drug to treat end-of-life distress, it would be morphine; generations of doctors have successfully given it in increasing doses when the usually prescribed doses do not suffice to relieve pain or distress in terminal illness. In this setting, the dose of morphine has been ethically and legally pushed to the point necessary to relieve distress, even if life is shortened by hours or days due to the respiratory depression that morphine may cause. Many dying patients have had their dying eased in this manner. Using morphine in this setting is an appropriate and compassionate move by the physician and remains one of the important legal options for such patients.

Physicians have recognized that in patients who have chronic pain and who are already receiving large, steady doses of morphine, the amount of increased morphine necessary to relieve suffering may be great. With prolonged use, patients develop a tolerance not only to the pain-relieving characteristic of morphine, but also to the side effects of morphine, such as depression of respiration.


THE DOUBLE EFFECT RATIONALE WHEN INCREASING DOSES OF MORPHINE HASTENS DEATH

When morphine is used in large doses with the intent of relieving severe symptoms in the terminal patient, and when death is hastened by some hours or days by these large doses, physicians have in the past relied on the “double effect” rationale to justify the action. As you discuss end-of-life options with your doctors and nurses, you may hear this term, which is why I have included it here. The double-effect rationale holds that it is ethical to use doses of a medication that will most likely shorten life if the intent is solely to treat severe symptoms. Some physicians and ethicists, however, have argued that it is probably hypocritical not to acknowledge what is being done and not to call it physician aid-in-dying.

Charles Baron, a professor of law at Boston College and an expert on end-of-life problems, opposes the use of the double-effect rationale as the basis for allowing hastened death under the guise of relieving symptoms.1 He feels that if we are really opposed to euthanasia, we would not permit physicians to hasten death “incidentally” with large doses of pain medication, and he does not believe this rationale is good for our legal system, society, the medical profession, or patients. He does not oppose the use of morphine in large doses to relieve suffering, but wants us to be clear in our thinking about what can happen with large doses and not hide behind double-effect justification—which he regards as convoluted.2

Garrick F. Cole, a Boston attorney who is also an expert in end-of-life issues, feels that it is a distortion to use the concept of double effect.3 He feels it is unnecessary to go beyond our already accepted use of potentially dangerous medications with side effects when the goal is to relieve symptoms, and the use is an informed one. Cole points out that if the patient wishes to, and needs to, run the risk of side effects of a given medication, such as morphine in large doses, and if the medication is needed for the welfare of the patient, the physician can go ahead with the administration of the medication. He contends that we do this all the time on the basis that the side effects of treatment are ethically and legally acceptable if the risks are known and accepted. Cole regards the double-effect doctrine as unnecessary and argues that if the physician is using very large doses of morphine to control severe symptoms at the end of life and if the physician and patient would at the same time be gratified by a hastened death, there should be no legal or ethical problem with admitting these goals openly. He sees this as a more honest approach as opposed to utilizing the doctrine of double effect and not admitting that an earlier death would be welcomed.

However, for a physician to admit openly to using morphine at the patient’s request in such a dose that death will probably be hastened puts that physician, at least in the minds of some, in perceived legal jeopardy, and few physicians want to do this. So, although doubts about the validity of the double-effect justification have been expressed by some, most physicians in practice, including myself, are comfortable with it. This dilemma of double-effect justification for shortening life would be solved by allowing the physician and patient to shorten life openly when suffering is intolerable and unrelieved—with legal protection and guidelines of Oregon-like laws in all jurisdictions (discussed in Appendix B). Hopefully, this will come about in the next decade.

In the meantime, we should be careful not to get too hung up about intent if this results in less good care for the suffering patient. Rod McStay at Methodist Hospital in Houston points out in an extensive and scholarly monograph that “the current alternative to using the double effect principle as a legal justification . . . is the under-treatment of pain for patients that are unresponsive to typical levels of medication. It would be an unfortunate consequence if scrutiny . . . about clinical intentions resulted in inadequate palliative care for patients.”4 In the article, McStay was speaking primarily about terminal sedation (see the following section), but the same reasoning applies to the use of high doses of morphine for intolerable symptoms.

Along the same line, Timothy Quill states, when discussing the double effect in his book A Midwife Through the Dying Process: Stories of Healing and Hard Choices at the End of Life, “Our primary intention was to relieve his suffering, not to cause his death, so we were still operating under the confines of the ‘double effect.’ Yet, in reality, relieving his suffering and easing death had become one.”5 One should not have to choose between the two.

A physician runs a very low likelihood of being criminally charged with murder when using the double effect rationale, but the risk is not zero. Ann Alpers, JD, assistant professor of medicine in the Program in Medical Ethics and the Division of Internal Medicine in the Department of Medicine, University of California, San Francisco, wrote a detailed scholarly paper on the risks incurred by physicians as they attempt to relieve suffering at the end of life with heavy doses of medications, especially those that are “closely regulated by state and federal law.”6

Pointing out that a crime usually has two basic elements: A criminal act has been performed, and it has been intentional, Alpers searched the legal literature for all instances of “criminal investigations and actions brought against physicians for care, particularly pain control, at the end of life.” She eliminated situations in which the physician “showed gross or culpable departures from the ordinary standard of care,” focusing rather on the narrowed subject of pain control at the end of life in which the double effect doctrine might be relevant. She found that “even though criminal prosecutions of physicians [for giving such heavy doses of medication that life was shortened] are still rare, they have become more common in the United States within the past ten years.”

Alpers found (since 1990) “a total of at least twenty-three investigations of professional caregivers, eight indictments, four murder trials, and two physician convictions. One set of convictions (for attempted first-degree murder and second-degree murder) was reversed on appeal.”7 (See the extensive note at the end of the book for a discussion of this interesting case.) All the cases involved an informant who reported concerns about how the patient died. Alpers noted that these “prosecutions arising from care of the dying and attempts to manage pain in the terminally ill fall into three broad categories: withdrawal of life-sustaining treatment and any accompanying use of pain medication; the administration of morphine or other analgesics and sedatives; and terminal care that includes the use of a potentially fatal agent, such as potassium chloride, insulin, or chloroform.”

As I looked at these cases, some common threads seemed to stand out. I thought physicians were less likely to get into serious legal difficulty if they met the following desirable criteria:


  1. The patient was competent to make the medical decision voluntarily to withdraw unwanted treatment at the end of life and to have medication in whatever doses necessary for relief of pain and/or distress.
  2. The patient asked for these actions in a written advance directive, such that, if the actions took place later at a time when the patient was no longer able to speak for himself or herself, a properly designated medical agent was able to make such decisions, acting in the patient’s best interest.
  3. The use of morphine or other distress-relieving drugs—in whatever dose was necessary to control the symptom(s)— occurred in situations in which these drugs were clinically necessary to relieve pain, distress, or agitation that was otherwise uncontrollable.
  4. The physician was extremely clear in the written medical records as to exactly what he/she was doing and why, detailing how the actions were requested by the patient voluntarily (either directly or through an appointed agent), how they were in the best interests of the patient, how there were no other reasonable options, and how the actions represented the only compassionate course.
  5. Families were totally informed and understanding of, and agreeable to, what the physician was doing and why.

When these criteria were met, it appeared that the risk for criminal prosecution was very small and truly negligible for any physician who withdrew treatment and administered symptom-relieving medication in large doses to a dying patient with unrelieved suffering.

Further, it appeared to me that the physicians who avoided running into trouble with prosecutors and court actions used very standard pain-relieving or sedating medications, and did not utilize medications that paralyze muscle action or directly stop the heartbeat. These medications in my opinion are not required for the relief of pain and/or distress at the end of life.

The unfortunate thing is that even when the physician acts in a way that is highly unlikely to bring any legal action, he or she may still worry about risk and as a consequence undertreat end-of-life pain and distress. The specter of legal sanction hangs over the head of any physician who uses large doses of pain-relieving medication, even when the statistical likelihood of sanction is remote.


VOLUNTARY REFUSAL OF HYDRATION, ACCOMPANIED BY PHYSICIAN-ADMINISTERED SEDATION AS NEEDED

Voluntary refusal of hydration is a possible next step. Refusing fluids leads to dehydration, which, in turn, produces somnolence. The somnolence can be further aided by physician-administered sedation, as needed. If necessary, the patient is put to sleep and kept in this peaceful state until death, which usually occurs in a matter of days. All of this is completely legal when done for the relief of intolerable suffering.

Patients have a right to refuse fluids just as they have a right to refuse unwanted medical treatment. To give fluids against a competent patient’s wish could be considered battery. Physician and family should support such a decision by the patient and point out to all caregivers that this is a legal right.

Deliberately refusing hydration is a decision patients have used successfully in the past, and it is a procedure that is having increased use. (Note that this refusal of hydration is more effective than starvation, which is not a good way to hasten death because it is slow and difficult.) Particularly in patients who already have considerable biochemical abnormalities due to terminal illness, the stopping of all fluids can clearly bring on an earlier death, sometimes in a matter of only a few days and almost never longer than ten (depending on the person’s condition).

Many people die with dehydration as part of the normal disease process of a fatal illness that prevents taking food or drink.8 Dehydration in such cases is expected and can be accepted as part of a natural way of dying. There is no medical mandate to provide hydration in terminal patients, since hydration may simply prolong dying.

There are misperceptions about dehydration and its symptomatic effect on the dying patient. If a normal, healthy person forgoes fluids, extreme thirst and distress is indeed soon experienced. This is not true in the dying patient, who experiences dehydration quite differently. When a patient is close to dying, the illness and the dying process impose a form of auto-sedation in which all the senses are dulled, including the sensation of thirst. Insufficient understanding of this phenomenon leads dying patients and their families to discount unnecessarily this avenue as a possible option at the end of life.

Dehydration per se does not have to be a distressing state. Lethargy and somnolence are symptoms of dehydration, and somnolence may be helpful in that it reduces awareness of distress. Dehydration may bring about increased production of endorphins, chemicals in the body that are helpful in that they may be an important cause of this reduced awareness. As for dryness of the mouth, meticulous mouth care can counter this problem, and other symptoms arising from the underlying fatal disease process can be treated effectively with sufficient doses of medication.

Nevertheless, the medical literature has contained many discussions in the last twenty years concerning the question of the patient’s reaction to dehydration—is it detrimental or beneficial to the patient’s comfort? The arguments on both sides were well reviewed in 2001 by Diana McAulay, a staff nurse in England.9 I believe the pendulum has swung clearly in the direction of believing the somnolence and lethargy associated with dehydration to be beneficial to the dying patient—actually easing the dying process. More hospice workers and palliative care experts are coming around to this opinion,10 and this shift in opinion definitely fits with my own experience. I have personally attended many dying patients during four decades of practice of internal medicine, and I have never seen the bad consequences of dehydration painted by those who speak against this option for the dying patient—as long as proper oral care and other indicated comfort measures and sedation are effectively carried out.

When competent terminal patients elect to shorten suffering at the end of life by voluntarily refusing hydration, they must be able to participate in medical decision making and make an informed and voluntary choice in favor of the option. They must elect to forgo all forms of oral and intravenous fluid intake other than the tiny amounts necessary to deliver medications, and they must understand that the withholding of fluids is to be complete and is to continue until the time of death, unless they reverse the decision early in the process while still able to do so. This understanding is mutually developed by both the patient and the physician as a rational medical decision that is documented in the medical record.

Concurrently, the physician and nurses must agree to see the process through to the end, and they must act to prevent any symptoms of distress the patient may experience. For symptoms that might be arising from the basic fatal disease itself, there is a spectrum of medication that can be appropriate. Pain medication is continued as necessary, and for agitation and/or anxiety, antianxiety medications are effective. When heavy duty sedation is required in order to bring about a peaceful state, the barbiturates are available. They can be used intravenously in a continuous, concentrated, slow infusion to provide the desired state of unawareness. This is done in a dose sufficient to relieve all distress with the dose being increased until the patient is asleep and peaceful—a procedure described as terminal sedation.

Two barbiturates can be used. Pentobarbital sodium (Nembutal) solution is rapid in onset and short in duration. Thiopental sodium (Pentothal) is an ultra-fast-acting barbiturate that has been used extensively for short, general anesthesia or for the induction of anesthesia. The effects of both these drugs can be sustained by continuous infusion under the direction of the physician. By concentrating the drug in a very small amount of fluid, the desired dehydration is not significantly interrupted. Specific details of this procedure have been described for physicians,11 and other standard references discuss the pharmacology and preparation of these medications.12 Propofol is another drug that is commonly used for prolonged sedation.13

In this situation, the physician is not constrained ethically by any particular maximum dose of the sedating drugs. The physician is able to use barbiturates in increasing doses, if needed, to the point of producing sleep and complete unconsciousness. The necessary amount of medication is administered continuously until the patient’s death.

When using this option, the physician commits himself or herself to the use of these medications in sufficient doses and assures the patient and family of this commitment. However, this assurance, with which most physicians agree in principle, is often not carried into practice. In spite of the fact that it is now commonly agreed that ethically and legally the proper dose of medication for a patient at the end of life is that dose of medication that properly relieves the pain or distress, insufficient doses of medicine still are utilized all too often, either because of outmoded principles of pain therapy that are ingrained in the physician’s reactions, or because of a simple lack of knowledge as to how to treat extreme distress.

Rob McStay wrote an important article on terminal sedation in 2003 in the American Journal of Law and Medicine, and he examines in detail the many legal and ethical aspects of this area of palliative medicine.14 He defined terminal sedation as “the induction of an unconscious state to relieve otherwise intractable distress . . . frequently accompanied by the withdrawal of any life-sustaining intervention, such as hydration and nutrition. This practice is a clinical option of ‘last resort’ when less aggressive palliative care measures have failed. . . . Terminal sedation has been used for three related but distinct purposes: (1) to relieve physical pain; (2) to produce an unconscious state before the withdrawal of artificial life support; and (3) to relieve non-physical suffering.” We can add a fourth purpose: to accompany voluntary refusal of all fluids in situations in which morphine-like drugs and anti-agitation medicines do not suffice to control distress. McStay reports that terminal sedation, according to several studies, usually results in death within two to four days.

In his concluding remarks, McStay states, “Terminal sedation is a legally justifiable practice, supported by established jurisprudence. The U.S. Supreme Court’s tacit reliance on the existence of this practice is based upon long-standing principles arising from law and standards of clinical care.” In McStay’s opinion, “Criminal, civil and administrative penalties, whether related to a patient’s death or to the prescription of controlled substances, are unwarranted. . . . As long as a practitioner . . . does not intend to cause or hasten death, the mere risk of death as a foreseeable consequence is not an unjustifiable risk, particularly with respect to end-of-life care.”


BASIS FOR LEGALITY OF REFUSAL OF FLUIDS AND TERMINAL SEDATION

The primary legal issues involved in voluntary refusal of hydration revolve around the rights of terminally ill patients (1) to refuse hydration in order to end their suffering, and (2) to receive the medication necessary to relieve their suffering. As to the first right, virtually every American jurisdiction now recognizes the legal validity of refusing artificial nutrition and hydration, and competent adults now have the prerogative to refuse any form of unwanted treatment, regardless of the diagnosis and prognosis and of whether the patient is terminal or not. The state supreme court cases that established this right held that its exercise did not constitute suicide and that, under these circumstances, the removal of tubes providing nutrition and hydration did not constitute homicide or medical assistance in suicide.15

As to the second right to receive the medication necessary to relieve suffering, there appears to be general acceptance of the view that one commits neither homicide nor assistance in suicide if, as an incident of an otherwise medically appropriate plan of palliative treatment, one administers medication that reduces the duration of the dying process. Both elements of the procedure— the right to refuse forced hydration and the right to obtain effective medication for the treatment of distress—seem to have a claim to constitutional protection,16 and in a growing number of jurisdictions, this acceptance is taking the form of legislation that explicitly codifies this legal position.17

This legal right to refuse any unwanted treatment, including hydration in all forms, is often not sufficiently appreciated by patients. I hope that the conscientious and informed physician, therefore, would discuss this when informing patients of their options. This sequence of patient-elected terminal dehydration brought on by refusal of hydration, accompanied by effective treatment of symptoms by medication (including terminal sedation when necessary), is underutilized as a means of assisting the dying because its legal basis is so poorly understood by patients and their physicians. Persons who have felt that the procedure meets their needs but whose doctors are not experienced in it (or object in some way) have had the option of asking for a consultation with or transfer to another physician who will consider this approach with you. It is a rightful option for the adult patient who is able to participate in medical decision making. Your doctor will be practicing according to accepted standards of good medical care if he or she helps you when you have elected voluntary withdrawal of all fluids. If you are not able to participate in decision making and have a properly appointed agent (proxy) for medical affairs, it also is the right of that agent to refuse hydration in your name.

The guidelines for making such decisions, discussed in the previous chapter, apply appropriately if you are participating in voluntarily refusing hydration.


PHYSICIAN AID-IN-DYING USING LETHAL DOSES OF BARBITURATES

The experience of friends of mine illustrates some of the reasons patients have used this method of hastening death.

I was not Jim’s physician, but was a friend of his and his wife, Diane. I paid them a visit during the summer more than a decade ago, about a year after Jim’s initial diagnosis of prostate cancer and surgery. When Diane ushered me onto the screened-in porch, Jim was in a comfortable chair and stood up to greet me, but with considerable effort. He moved very slowly and from time to time winced with evident pain in his back. Jim steered conversation immediately to the great problems he was having with pain and weakness— ending life at a time of his choosing was on his mind.

He told me, “What is ahead is a lot more pain, and it’s going to take a lot of that pain killer to make it bearable. I’ll be a zombie. And I’m already weak as a pup—more so every day.” Jim feared losing control of his life. His horizons had already been constricted to the porch and the adjacent living room where a hospital bed had been installed.

Ten years later, Jim’s widow, Diane, was going over her husband’s death with me after I had asked her if we could talk about this again. “Jim was so straightforward about it, so open about what he wanted. He and I had had a good understanding about life and its problems, and neither of us was going to go behind the other’s back.” This was true, she said, when that last, final problem arose—prostate cancer.

As often happens when prostate cancer occurs in a relatively young man (he was in his fifties at the time), the malignancy was aggressive in nature. He had had a prosta-tectomy and subsequent hormone treatment, but only five months after the initial surgery, discouraging evidence appeared that the growth had spread. Diane recalled, “At the time of the surgery, he had a positive outlook, but soon it was clear he was not going to make it. The cancer invaded his body too much and was in his bones. It was beginning to cause a lot of pain.”

Diane told me that Jim’s response to his situation was influenced tremendously by the sort of person he had been. “He had had a life he wanted and was a take-charge person. He was not controlling, but was very clear about what he wanted and did not want at the end of his life. He didn’t want to be helpless.” She said that being incapacitated and weak was anathema to Jim, and he wanted to die soon while he was still relatively peaceful and in control. He and Diane had talked things over carefully. Having drawn up a living will and signed a medical proxy statement, he gave his wife the legal authority to speak for him if he became unable to speak for himself.

Diane said that Jim’s wish to end his life was not just a matter of pain control. Pain management could be dealt with fairly well. Jim was getting regular visits from hospice, and he had various comfort measures, support from the family, and supervision of his pain medication. He was receiving good amounts of major narcotics to relieve the pain, and not long after our visit, he went to a continuous intravenous morphine drip that took away most of the pain. So, it was more than the pain itself. The amount of medication required left him feeling totally without energy and somnolent, and he became almost unable to get out of bed. This was what he dreaded—losing control and being forced into indignity. He wanted to choose how he died, and not the least of his wishes was to spare his wife and family a prolonged ordeal. As Diane described this, tears came to her eyes, even ten years after the fact. She loved Jim then and still does. “You know, even now I seem to miss him more each year.”

Diane said that some weeks after I had made my visit to Jim that last summer of his life, he had accumulated a supply of Seconal sufficient to end his life, and he had chosen a date on which he would take the capsules. Their grown-up children and a physician nephew, Scott, were informed and were asked to be present. Watching Jim go through his final weeks had been painful for all of them, but they understood what he wanted and did not disagree with his wish.

Diane described the last day. “Jim took the medication in the early evening. We were all there. He started swallowing pills as quickly as he could, but it was slow going and after only several minutes he said, ‘I can’t take any more.’ I’m not sure how many he took, but within five minutes he was asleep.” Diane said, “After an hour or so, I didn’t think it was going to work, so I went to the other room. He had not taken enough of the pills.”

However, Jim, watched by his physician nephew, remained completely unconscious. Diane recalled that Jim’s breathing became somewhat noisy after an hour or so, which must have been due to his not clearing airway secretions— but there was no distress on his part. He was unaware of anything. His breathing and heart action stopped in the early morning hours, and Diane described all of the family gathering around. They decided not to call Jim’s doctor at 2:00 am, and all went to bed except for Scott who remained in the room with Jim until morning came. Diane did not sleep, but said she felt relieved. “We all did.”

When morning came, the doctor was called and came to the house at around 7:00 am. He filled out the death certificate, certifying that Jim had died from metastatic cancer of the prostate as the underlying disease—which was true. Diane related that later that day the children went through all the family pictures and made a collage of Jim’s life. They were at peace with what happened. Except for being somewhat drawn out for the family and seeming at one point to Diane and Scott not to be working, Jim’s death was the death he had wanted. For him the distress and suffering were over after the first five minutes.

“Was there anything you would have done differently?” I asked Diane.

“No. It’s about choice and respecting Jim’s choice. It’s really about him.”


CHARACTERISTICS OF SECONAL AND NEMBUTAL

Ten to twenty years ago most doctors, if they gave a patient in Jim’s situation prescriptions for Seconal or Nembutal, would have made the total dose six grams, usually prescribed in multiple prescriptions that added up to the total desired, and usually accumulated by the patient over a period of time. If this happened in the last few years, Jim would have been given a larger dose (nine or ten grams) and his death would have occurred more quickly. Doctors have found that no one who takes and retains that dose lives beyond twenty-four hours, and most will die in the first hour. Another action that would be different if this approach were used now would be that the barbiturate capsules would be pulled or cut apart and the powder emptied into a few tablespoons of applesauce or some fruit juice. Physicians who have assisted patients in this way have found that the medication is more easily and rapidly ingested as a powder mixed in a vehicle, such as applesauce or juice, rather than as many individual capsules, or the barbiturate might be obtained in a liquid form which can be drunk readily (although bitter).

In 1991, Derek Humphry published a landmark book, Final Exit,18 which described in detail how a terminal, suffering patient might end his life with barbiturates. The book, a best seller, did a tremendous amount to bring this option to the public’s attention. The use of barbiturates for this purpose is outlined in the 2002 third edition of that book19 and by authorities in Oregon,20 the one state in this country in which such practice is legal. (See Appendix B.) Physicians in Oregon have commonly used Seconal (secobarbital) and Nembutal (pentobarbital) for this purpose. These capsules are made in 50- and 100-milligram sizes containing the drug as a powder, which is a normal dose for treating insomnia (for which they are practically never used anymore). Pentobarbital can also be obtained in a liquid form in Oregon.

It is well established now that a lethal dose of these two barbiturates is nine grams (90 capsules of 100 milligrams each), but in the last several years many physicians have used ten grams. The Fifth Annual Report on Oregon’s Death with Dignity Act indicates that when ten grams of pentobarbital is used, half of all patients died within fifteen minutes. The ten-gram dose is probably now being used most often. However, nine grams is certainly lethal, albeit the median time of dying is slightly longer (thirty to sixty minutes).21 Doctors have advised that the entire dose be taken within a minute or two since the patient needs to get the entire amount ingested before going to sleep, which occurs very promptly. As noted previously, mixing the powder in applesauce quickens ingestion. In addition to the barbiturate, certain adjunctive (helper) medicines have been used by doctors to facilitate the action of the drug.22

Although the dose of nine or ten grams of secobarbital or pentobarbital has been generally regarded as being definitely lethal in all instances, early in 2005 one person took such a dose and did not die. This is the only failure of which end-of-life advocates are aware, both in this country and in Europe. That person’s attempt at ending his life was observed by competent observers who are clear that he took the entire dose and did not vomit it. The reason for this one exception is not certain but is thought to be related to his having been on another medication that interfered with the absorption of the barbiturate from the intestinal tract.

The shelf life of barbiturates has been a question in the minds of persons who have stockpiled the medication for later use. It is hard to have a dogmatic answer to this question since the expiration date of most medications is a conservative one recommended by the manufacturers (and rightly so). It is probable that many drugs may retain their potency to a large extent beyond the expiration date, or, if there is a reduction in potency, it is a gradual loss over time—but one cannot assure this. I am aware of anecdotal evidence from a number of my colleagues that if a barbiturate is stored in a dry environment at room temperature (not in the refrigerator), it probably retains potency for a few years (maybe five or seven), which I purposely do not define more explicitly because it is impossible to do so with accuracy. It can be said, however, that these barbiturates are generally fairly stable compounds that deteriorate in effectiveness quite slowly. Some persons have used a larger dose if they felt the potency was reduced.


LEGALITY OF BARBITURATE USE

If you live in Oregon, the barbiturate can be legally obtained through your physician (as of the writing of this chapter). In other states, in the past a lethal dose could be secured only by obtaining small amounts of the drug over a period of time from multiple prescriptions, ostensibly for the problem of insomnia. The drug would be gradually stockpiled until a lethal dose was attained. (At present, even with a prescription, such drugs are hard to obtain—see the following text.)

Ending one’s life is generally thought not to be a crime, but assisting someone to end his or her life may put one in legal jeopardy, depending on the state involved. At the present time in the United States, the physician’s prescribing of medication for the purpose of ending life under carefully described circumstances is clearly legal in the state of Oregon (see Appendix B), but outside Oregon, the situation is difficult. In some states, there is simply no statute covering the situation; in others the legality of the action may be in a gray zone. This means that the physician and others who assist in suicide may run legal risks if the action is discovered. The amount of this risk depends on the specific laws of the various states,23 the attitudes of local prosecutors, and the attitudes of other people in the family or circle of friends who may become privy to the event. For this reason, most physicians who have written prescriptions for this purpose have felt that the fewer people who are aware of what is happening, the better—and then only those persons who are in complete sympathy with the planned action. It is fortunate that most of the time a spouse, grown child, or friend has not wished these actions to be known by others to preserve family privacy and patient dignity. A better situation will exist in the future when such actions are clearly legal as a form of end-of-life treatment, and there is no need to have any concerns about the event being more widely known.

Simply being present in the room observing the act has not been regarded by most as “assisting in suicide,” but family and friends should be aware that this is poorly defined. At the present time, the patient must physically perform the act of taking the medication himself or herself, unassisted. Final Exit provides explicit details about these considerations and other details for setting up a planned death.

In Canada, the laws regarding assisting in suicide are stricter than in this country, and the definition of assisting in suicide may be broader than in the United States. In November 2004, a seventy-three-year-old Canadian woman, Evelyn Martens, who had been charged with physically assisting two persons in suicide, was acquitted by a jury, but only after many months of preliminary investigation and legal process by the Canadian legal system. This is chilling, even though it occurred in Canada and not in this country, and there are a few similar cases pending in other countries.


AVAILABILITY OF BARBITURATES

If a patient outside Oregon wishes to obtain barbiturates, there are real obstacles. First, there is the problem of availability of the medication from the manufacturers and distributors of Seconal and Nembutal. Even with a prescription, the drugs are becoming exceedingly difficult to obtain. Many drugstores do not carry the medications since their main use now is for hastening death in terminal illness, and drugstore records are increasingly scrutinized by regulatory authorities who look for illegal use. Not only are the medications often not stocked in a pharmacy, they are often not available from wholesale distributors. One of the major pharmaceutical companies that used to manufacture Seconal, Eli Lilly, no longer does so, citing an insufficient market for the drug.24 However, as of 2004, another company has begun producing and supplying Seconal again (Ranbaxy).

Another recent, major potential difficulty in obtaining barbiturates was that John Ashcroft, the former U. S. Attorney General, late in 2001 issued a directive to Drug Enforcement Agency staff that physicians’ prescribing of barbiturates for the purpose of hastening death is to be considered illegal by federal regulation. The case finally ended in January 2006 when the U.S. Supreme Court held in a 6–3 decision that the Attorney General had overstepped his authority.

Veterinary sources were helpful for a few years, but are now less available. Sources abroad have been utilized successfully sometimes, but it is difficult for an individual patient to know where to turn. Street sources have also been used, but these have been dangerous because of the unreliability of the source. Google on the Internet has produced a large number of sites that have information about the drugs, but again, one does not know exactly with whom one is working. Patients who have been successful in obtaining the drugs have done so by asking their own doctors or others in their own local medical community, or by discussing the problem with contacts in the end-of-life advocacy movement (see Appendix A). There has been no one way.

A patient might feel that in view of all the difficulty, some other medication might be used, one that is more easily available. However, there has been no other class of medication that has had the speed and certainty of result that the barbiturates have had when taken in a lethal dose. Many different substances have been used over the years in suicide attempts (apart from end of life), and the results of these attempts vary tremendously. Few persons wishing to hasten death in the setting of unrelieved suffering at the end of life have wanted to risk any uncertainty.


DRAWBACKS TO SECRECY

If you live outside Oregon and your doctor cannot legally participate in hastening death by prescribing barbiturates, he or she will either refuse to help or will invoke secrecy, hoping to avoid legal risk as much as possible. Even though this works most of the time, the secrecy approach has some very real drawbacks:


  1. Consultation with other doctors is usually reduced, and the potential disadvantages of this are obvious.
  2. Anything having to do with the actual act of arranging for the barbiturate’s purchase, preparation, and administration— or with the justification for the use thereof—is necessarily more difficult under conditions of secrecy.
  3. There is palpable anxiety when the doctor, patient, or family members know that anticipated actions can possibly result in legal charges of assisting in suicide. If the circle of those who know about barbiturate use is kept small and is limited to only those persons who are in favor of helping the patient with this option, the secrecy is likely to prevail, in which case there are no undesired consequences. However, this is hard to guarantee. The risk may be almost nil in jurisdictions where there is not an aggressive prosecutor or where the state laws are vague, but there is always some degree of anxiety and persisting fear of legal jeopardy that attends secrecy.
  4. If secrecy were attempted in a case brought to the prosecutor’s attention in the context of possible legal misconduct, the mere fact that secrecy had been attempted might be a plus for prosecutors. They might ask, “If you are trying to defend your action as proper, why did you attempt to hide your action?”

Most of my colleagues who sign death certificates in this situation cite the basic underlying disease as the cause of death, not citing an intentional overdose of a barbiturate (except in Oregon where the physician can be open about what happened). The medical examiner has not been involved most of the time since the patient has had a terminal illness and has been expected to die soon in any event—a situation the patient’s physician normally handled without notifying the medical examiner. Although this is often done (outside Oregon), it is a form of secrecy to the extent that the role of barbiturates is not acknowledged. It is a less than ideal situation when the physician cannot be completely open about what is going on. Even without legislation that clearly gives protection to the physician, these legal risks are low, but they are not completely absent. Physicians will vary in their willingness to assist in hastening death when they do not have such legal protection.

The use of barbiturates to hasten death in situations of intolerable suffering has many associated problems for persons other than Oregonians. The next means of hastening death (described in the following chapter on the use of helium) has dealt with many of these problems because the action can be carried out by the patient without physician assistance or the need for prescriptions.