CHAPTER 13. VOLUNTARY TERMINAL DEHYDRATION

13.01 Voluntary Terminal Dehydration; Introduction

13.02 Historical Development

13.03 Case Histories

13.04 Thirst and Hunger

13.05 Medical Aspects

13.06 Ethical Aspects

13.07 Legal Aspects

13.08 Practical Undertaking

13.01 Voluntary Terminal Dehydration; Introduction

A previous chapter discusses the use of artificial nutrition and hydration in the end-stages of terminal illness. This chapter addresses a different, but related, subject -- the voluntary forsaking of sustenance as an alternative to physician assisted suicide (PAS).

Unlike PAS, voluntary terminal dehydration (VTD) is perfectly ethical and legal even when initiated by the patient relatively early in the course of a terminal disease simply to avoid living through the dying process. To this extent, unlike terminal sedation which only involves the final few days of life, VTD is much more consistent with the goals of a patient who might ask for physician assisted suicide (PAS) but who knows PAS remains illegal.

Due to the overlap, many of the issues discussed in the previous chapter on nutrition and hydration will be repeated in this one, but in a somewhat different context. In the previous chapter emphasis was on the use of artificial means of maintaining sustenance when the patient was no longer able to take oral food and fluids. In this chapter, we address the situation in which the patient remains capable of taking oral sustenance but voluntarily chooses not to do so in order to achieve an earlier and more controlled death.

Before discussing VTD, it is well to review some of what has been said about care in end-stage situations, especially as it relates to the discontinuation of artificial nutrition and hydration.

Summary of previous chapters related to voluntarily foregoing artificial sustenance:

1. Discontinuation of nutrition does not lead to hunger except in the first few days before and until chemicals called ketones build up in the blood.

2. Discontinuation of hydration does not produce true thirst, although a sensation of dryness of the mouth often is reported as "thirst." The evidence this is not true thirst is extensive and shows the ill feeling is not relieved by giving fluids intravenously but is relieved by wetting the tongue and lips and proper care of the mouth.

3. It is both ethical and legal for physicians to treat any suffering the patient might experience after choosing to voluntarily stop eating and drinking without requiring the patient to take nutrition orally or artificially. Not to do so would in fact be morally unjustified.

4. It is both ethical and legal for physicians to treat any suffering the patient might experience after choosing to voluntarily stop hydration without requiring the patient to take fluids orally or artificially. Not to do so would in fact be morally unjustified.

5. In addition to causing a dry mouth, dehydration is likely to cause the patient to become confused and then to slip into a comatose state before death. This is not specifically associated with pain or suffering and is generally accepted as a peaceful way to die.

6. Most health care providers who have extensive experience in treating dying patients report death due to dehydration tends to be less troubled and less symptomatic than death in a patient receiving artificial fluids.

7. The methods of giving artificial sustenance are all associated with potential risks in the form of pain and suffering. These are not so great as to preclude their use when otherwise indicated, but do give reason for the patient to decide against their use in the final hours and days of life.

8. In the end stages of terminal illness, there is little reason to believe artificial sustenance prolongs life. This is in contrast to VTD in which patients choose to voluntarily stop sustenance early in the course of a terminal illness specifically to cause a quicker, controlled death.

9. Foregoing of artificial sustenance by a patientís family is emotionally very difficult. In contrast, when asked, most end-stage terminally ill patients do not choose artificial sustenance if the risks and benefits are adequately explained.

10. Society values the preservation of otherís lives and tends to treat the provision of food and fluid as basic rights of the patient. This tendency, however, is in conflict with more modern theories which stress autonomy, the right of the patient to make decisions for himself or herself.

11. Traditional religions have tended to support the need for artificial sustenance for the incapacitated patient in the past, but in recent years have come to accept the right of the individual or a surrogate to forego its use. [Note, this may or may not be true with regard to the patientís right to refuse oral food and fluids, in which case religions tend to vary a great deal.]

12. From an ethical point of view, foregoing artificial sustenance is not a problem. When a patient has the ability to make decisions and requests it not be employed, it would be unethical to insist on its use.

13. Legally, the competent patient has a clear right to refuse artificial sustenance.

14. Legally, if the patient loses the ability to make decisions, those people who are responsible to take over decision-making should follow the previously expressed wishes of the patient. This is best done through an advance medical directive.

15. Medically, many health care providers still resist foregoing artificial sustenance. This probably stems primarily from misinformation about the resultant suffering and about its legal acceptance.

13.02 Historical Development

Over the years, individual patients have occasionally refused to take food and water at various stages in the course of a terminal illness on a voluntary basis. At times families and the medical profession have fought these refusals with forced feeding or involuntary insertion of feeding lines. At other times the patientís desires have been honored without hostility, but without much fanfare lest the caretakers be held accountable for not doing more to prevent an earlier death. In the last few years, however, and with the increasing discussion of PAS, a number of reports, many very well written, have been published describing voluntary refusal of food and fluids as an alternative to suicide.

Two articles of particular importance appeared in the medical literature in 1993. The first was in the April issue of a relatively new and at that time obscure journal, the Journal of General Internal Medicine with the title "Accepting Death Without Artificial Nutrition or Hydration." It was written by Robert J. Sullivan [8 J Gen Intern Med 220-224 (1993)] from the Duke University Medical Center and reported the history of a 78 year old woman with cancer of the uterus who refused surgery for a blockage of her intestines and later refused to take food or fluids by either natural or artificial means. She repeatedly asked for physician help in dying, but this was refused. Fourteen days after stopping intravenous fluids she requested narcotics to "relieve boredom and help her sleep," although she made no claim of experiencing pain. The medication was given until she died fifteen days later, although at no time did she complain of pain or any other discomfort.

In the discussion which followed the report, the author noted dehydration in the dying patient typically induces few neurologic symptoms initially, but eventually leads to confusion, weakness, and lethargy, which then eventually progresses to obtundation and coma. "Experience suggests that these patients slowly sink into unconsciousness over a period of days without complaining of pain or discomfort .... One recurrent physical complaint related to the absence of oral fluid intake is a dry mouth, which can be relieved with swabs, sips of fluid, or sucking on ice chips. Thus, from the available data, it appears that systemic dehydration induces little pain or discomfort provided the mouth is kept moist."

Sullivan also noted "[i]n contrast to the intense discomfort associated with semistarvation, total starvation is associated with euphoria. Instead of pain, food deprivation may induce analgesia. Mental function is maintained throughout a fast, with lethargy, apathy and irritability encountered only in the terminal phases."

The article concludes with the following observation:

Based upon the case presented and upon the available literature, it is possible to predict with some assurance the clinical course of an individual dying with dehydration and starvation. The majority of persons who embark on this course will be debilitated from an underlying illness that has robbed them of bodily fat reserves and thus reduced their ability to survive. Even then, death may not come quickly. By utilizing water generated in the metabolism of remaining adipose (fat) tissue, they may sustain circulatory function for a remarkable period of time. When significant adipose stores are present and renal (kidney) function is well preserved, as can be encountered in healthy individuals who suffer a massive stroke, survival without food or water can continue for weeks.

Fasting individuals will not be likely to experience pain induced by fluid or food abstinence. Indeed, mild euphoria can be anticipated, accompanied by an increased tolerance for pain. Absence of oral fluid intake will produce a dry mouth, which can be relieved with ice chips or swabs. Problems with excessive secretions, edema, or incontinence may be alleviated.

Worthy of particular attention is the potential for inadvertent induction of discomfort through amelioration of ketonemia. (Acids in the blood produced by carbohydrate withdrawal) The administration of even small amount of carbohydrate can block ketone production and rekindle hunger. Intravenous mixtures of 5% dextrose (sugar) and water provide amply carbohydrate to cause this metabolic shift. It is senseless to continue fluids after a decision has been made to discontinue food. If any sustenance is provided by vein or by feeding tube, it should be tailored to the full nutritional requirements of the patient and constantly monitored to ensure comfort.

In the setting of dehydration and starvation, death can occur from a multitude of causes. Arrhythmia (irregular heart beat), infection, and circulatory collapse due to volume depletion are common terminal events. The clinical course of each should be rapid and, ideally, not associated with perceived discomfort by the patient.

Based on this clinical report and a review of the literature, it is likely that prolonged dehydration and starvation induce no pain and only limited discomfort from a dry mouth, which can be controlled. For individuals carrying an intolerable burden of illness and disability, or those who have no hope of ever again enjoying meaningful human interaction, the withdrawal of food and fluid may be considered without concern that it will add to misery.

Later in December of the same year an article was written by Drs. Bernat, Gert, and Mogielnicki in the prestigious Archives of Internal Medicine entitled "Patient Refusal of Hydration and Nutrition; An Alternative to Physician-Assisted Suicide or Voluntary Active Euthanasia." In this article the doctors suggested that "educating chronically and terminally ill patients about the feasibility of patient refusal of hydration and nutrition can empower them to control their own destiny without requiring physicians to reject the taboos on PAS and VAE (voluntary active euthanasia) that have existed for millennia."

In this article the authors stated:

1. "There is no disagreement that physicians are morally and legally prohibited from overruling the rational refusal of therapy by a competent patient even when they know that death will result."

2. "There is also no disagreement that physicians are allowed to provide appropriate treatment for the pain and suffering that may accompany such refusals. In other words, physicians are morally and legally required to respect the competent patientís rational refusal of therapy, and they are morally and legally allowed to provide appropriate treatment for the pain and suffering involved. Physicians also are morally and legally required to abide by such refusals given as advance directives."

3. In differentiating VTD from euthanasia, "[p]atient refusals must be honored when they represent the rational decisions of competent patients even when physicians know death will result. There is no moral requirement to honor patient requests when physicians know death will result and there may be legal prohibitions against doing so."

4. The authors maintained "a preferable alternative to legalization of PAS [and euthanasia] is for physicians to educate patients that they may refuse hydration and nutrition and that physicians will help them do so in a way that minimizes suffering."

5. "The failure of the present debate to include this alternative may be the result of ... an erroneous assumption that thirst and hunger remain strong drives in terminal illness, and a misconception that failure to satisfy these drives causes intractable suffering."

6. It is the consensus of experienced physicians and nurses that terminally ill patients dying of dehydration or lack of nutrition do not suffer if treated properly.

7. "Caregivers experienced psychological distress due in part to the failure to understand the distinction between killing and letting die, and the social implications of withdrawing or withholding food and fluids, particularly because of its symbolism as communicating lack of caring. However, if the distinction between killing and letting die is based as it should be on patientsí requests vs patientsí refusals, these latter considerations lose their force."

8. Clinical experience with severely ill patients suggests the major symptom of dry mouth can be relieved by ice chips, methylcellulose, artificial saliva, or small sips of water insufficient to reverse progressive dehydration.

9. Unlike PAS and euthanasia, VTD "is recognized by all as consistent with current medical, moral, and legal practices. It does not compromise public confidence in the medical profession because it does not require physicians to assume any new role or responsibility that could alter their roles of healer, caregiver, and counselor. It places the proper emphasis on the duty of physicians to care for dying patients, because these patients need care and comfort measures during the dying period. It encourages physicians to engage in educational discussions with patients and families about dying and the desirability of formulating clear advance directives."

10. "The patient who refuses hydration and nutrition clearly demonstrates the seriousness and consistency of his or her desire to die. The several-day interval before the patient becomes unconscious provides time to reconsider the decision and for the family to accept that dying clearly represents the patientís wish. Furthermore, the process can begin immediately without first requiring legal approvals or other bureaucratic interventions. Thus, it may allow the patient to die faster than PAS or VAE (voluntary active euthanasia), given the delays intrinsic to bureaucratic process."

11. "The most pressing need is to dispel the myths about suffering caused by dehydration and to publicize as widely as possible to both physicians and their terminally ill patients the availability of PRHN (VTD) as a means of shortening the dying process. Educational efforts should be directed to physicians, who are often ill-informed on this matter, as well as the general public. The emphasis on research and education on symptomatic treatments to relieve suffering during dying is fully compatible with the traditional and appropriate role of the physician as caregiver and comforter."

One year later, in the July 20, 1994 edition of the Journal of the American Medical Association, Dr. David M. Eddy, a superb writer, beautifully described "A Conversation with My Mother," a woman who chose to end her life at age 85 by voluntarily refusing to take nutrition and hydration. Although not suffering from a terminal illness, she had had a wonderful life and faced many problems ahead. She didnít want to suffer through her future and didnít want to be remembered in her suffering. Instead, she wanted to control her death, and, with the understanding of her family, she did. In describing the self-termination of her life, Dr. Eddy concluded his article saying:

I had always imagined that when I finally stood in the middle of my parents' empty house, surrounded by the old smells, by hundreds of objects that represent a time forever lost, and by the terminal silence, I would be overwhelmingly saddened. But I wasn't. This death was not a sad death; it was a happy death. It did not come after years of decline, lost vitality, and loneliness; it came at the right time. My mother was not clinging desperately to what no one can have. She knew that death was not a tragedy to be postponed at any cost, but that death is a part of life, to be embraced at the proper time. She had done just what she wanted to do, just the way she wanted to do it. Without hoarding pills, without making me a criminal, without putting a bag over her head, and without huddling in a van with a carbon monoxide machine, she had found a way to bring her life gracefully to a close. Of course we cried. But although we will miss her greatly, her ability to achieve her death at her "right time" and in her "right way" transformed for us what could have been a desolate and crushing loss into a time for joy. Because she was happy, we were happy.

"Write about this, David. Tell others how well this worked for me. I'd like this to be my gift. Whether they are terminally ill, in intractable pain, or, like me, just know that the right time has come for them, more people might want to know that this way exists. And maybe more physicians will help them find it."

Maybe they will. Rest in peace, Mom."

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More recently, Lori Montgomery, reporting in the Detroit Free Press on November 20, 1996 [as circulated on the internet] noted that voluntary refusal of food and water was being advocated by a small, but growing number of hospice leaders as "an option desperate people can exercise now, without a court ruling and without a prescription."

Explaining the process as a combination of medically accepted legal rights, including the right to obtain medical treatment for any experienced suffering, she went on to note potential drawbacks, such as reluctance of caregivers to take part and the time requirements of one to two weeks.

But hospice workers were more enthusiastic, noting the lack of suffering and the tendency to produce "the kind of gentle, peaceful passing that so many people say they seek."

In the article, the author quotes the executive director of Hospice of Boulder County, Colorado, Connie Holden, as saying: "I would like to see us promoting this as a better and more autonomous option" to lethal prescriptions. "I've been around a lot of people who have chosen it and it's not painful. The main thing people have is thirst. But you can counter that with ice chips."

As to the time requirements, she noted "[t]he Hemlock people groan when you say this takes a couple of weeks, but that might not be any slower than trying to find a doctor" who will help a patient who wants to die.

Noting Eddy had received over 100 letters from people who read the article about his mother discussed above and then worried his motherís experience may have in fact been somewhat unique, the article goes on to quote Ira Byock, a Missoula, Montana, specialist in end-of-life care writing in the American Journal of Hospice & Palliative Care that "[v]irtually any patient with far-advanced illness can be assured of dying -- comfortably, without any additional distress -- within one or two weeks simply by refusing to eat or drink."

In the same article, Byock reported on 32 hospice patients who chose to stop eating and drinking. Of these, one-third said they never felt hungry or thirsty. Another third said they felt hunger, but it quickly subsided. Two-thirds felt thirsty, with 38 percent saying thirst plagued them throughout their final days, but all reported relief through oral care and small sips of fluids.

In the end, research shows the dehydrated patient's organs fail, leading to dizziness, confusion and a "deepening somnolence with the person often described as having Ďslipped away.í"

13.03 Case Histories

The two cases discussed above by Drs. Sullivan and Eddy are not unique. The following discussion of cases, often unidentified, may also be helpful to the reader.

In one, reported by Dr. Rousseau in a 1993 article in Clinical Geriatrics entitled "Dehydration and Terminal Illness in the Elderly" the author describes an 88-year-old man with inoperable lung cancer who requested that no artificial sustenance be given when he lost the ability to take oral fluids. The patient was noted to complain of hunger for five days after cessation of oral intake, beyond which his desire for food subsided. His main complaints were of mild nausea and dry mouth, which was relieved with ice chips, and sips of water. Two weeks later, he lapsed into a coma and died.

In a second case reported by a group of doctors headed by Dr. M. Andrews in another 1993 article, this in Postgraduate Medicine, and entitled "Dehydration in Terminally Ill Patients; Is it Appropriate Palliative Care? [93 Postgraduate Med 1:201-208 (1993)] the authors describe a 64 year old man with extensive cancer of the neck, larynx, and tongue who had previously undergone radical surgery. He was awake, alert and oriented upon admission to the hospice but was in constant pain and had difficulty breathing because of marked secretions from the sinuses and fluid swelling the tissues around his trachea. Eighteen days after admission he voluntarily stopped food and fluid therapy. Shortly thereafter the secretions from the sinuses diminished and the fluid swelling around the trachea decreased making breathing less difficult. Discontinuation of food and fluids also appeared to decrease the level of pain, which could now be easily controlled with narcotics. He died quietly with no signs of discomfort 27 days after discontinuing food and fluids.

Somewhat different but also instructive is a description of the death of Bobby Sands, the first Irish Republican Army hunger striker to die. Bobbyís 65-day ordeal was noted to go from pangs of hunger to extreme nausea to loss of eye control, repeated vomiting, rambling, incoherence, convulsions, and coma while he and the other hunger strikers consumed water. A few days after they were no longer able to drink, their symptoms abated and "the doctors noticed a remarkable improvement. The retching stopped. The hunger strikers were able to hold down other fluids. As a result, they seemed more lucid and demonstrated signs of recovery." After they began taking water again, however, their untoward symptoms recurred."

Noticeable in all of these accounts is the relationship of symptoms and time to death after water intake ceases. Starvation without water deprivation requires many months to produce death and produces significant suffering. In contrast, patients who stop all fluids are likely to live approximately ten to fourteen days without significant suffering unless their previous care had produced increased amounts of edema (body fluids). Because these excess body fluids are reabsorbed once the patient stops taking in water, death is delayed in proportion to the amount of excess water in the body when intake is stopped.

13.04 Thirst and Hunger

The absence of significant thirst or hunger is not as well documented in patients who voluntary stop food and fluids in order to control death as in those who stop as part of the end-stages of a terminal disease, but reports like those above tend to show an absence of significant suffering.

Although most people who voluntarily undertake starvation do not stop fluids, the history of total starvation for weight control supports the findings in terminally ill patient that hunger ceases with the build-up of ketones after three or four days of starvation and with little if any effect on mentation.

Surprisingly, what evidence we do have about voluntarily stopping fluids seems to be similar to that experienced when the patient and family choose to forego artificial hydration -- continual "thirst" responding well to local mouth care -- suggesting the symptom experienced does not represent true dehydration and is wrongly being described as "thirst."

13.05 Medical Aspects

Medical acceptance of VTD stems from a series of principles developed in relation to other medical issues but which are also applicable to the situation which arises when a patient chooses to forego sustenance as a means of controlling his or her own death. Luckily, none of these factors are likely to conflict with existing ethics and none require the physician to participate in an act which is outside the law.

Most of these principles derive from basic ethical principle of autonomy, which gives to the competent patient the right to accept or refuse medical treatment based on his or her own personal evaluation of quality of life and the value of prolonged survival. Notably, autonomy does not begin when the patient has a terminal illness nor does it end at any particular stage of illness. The patient is always the final decision-maker. Competent patients ultimately have the right to refuse therapies which physicians recommend for them, even if death will be the result. In addition, competent patients also have the right to make decisions about what they would want done even after loss of decision-making capacity through advance medical directives. [Discussed at length in Chapter 14 of this book]

In fulfilling the patientís right of autonomy, the physician is obligated to play many roles, and also has the right to set some limits.

First, it is the physicianís obligation to give symptomatic relief of pain and other forms of suffering to the full extent possible, in order to minimize patient stress that would lead them to consider methods of ending their life.

Second, it is the physicianís obligation to inform the patient in understandable terms about his or her diagnosis, prognosis, risks, benefits, and consequences of the full range of possible available medical interventions, in addition to the likely results of refusing any form of therapy. After so doing, it is also the physician obligation to work together with the patient to establish an overall treatment plan with mutually agreed upon goals derived from the patientís own value systems.

A third factor in the medical approach to VTD is acceptance of the provision of nutrition and hydration as a form of medical therapy which can be refused by the patient. This has been clearly stated by such prestigious bodies as the American Medical Association's Council on Ethical and Judicial Affairs, Code of Medical Ethics, 1997, and by the Presidentís Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.

A further medical consideration regarding VTD is acceptance of the physicianís role in relieving the suffering of a patient even when the patient has chosen to follow a course of treatment different from that recommended by the physician. The fact the physician may consider food intake to be the best treatment for hunger early in the course of VTD does not mean the physician is relieved from the duty to help relieve hunger by other means if so requested by the patient. In addition, this acceptance of the patientís right to choose therapy implies the physician should try to avoid the giving of carbohydrates which would inadvertently reverse the ketone production the patient is relying on to reduce hunger.

Fifth, after having provided the patient with information required to obtain an informed consent, it then becomes the physicianís duty to assess whether the patient has adequate decision-making capacity to make the specific decision at hand. This assessment may, but need not, involve an appropriate consultation depending on the exact situation and whether there is disagreement as to the patientís mental capacity among health care providers or the patientís family members. If there is a legitimate question, critical elements of decision-making capacity which should be evaluated include (1) the ability to understand the medical information presented; (2) the ability to reason and consider this information in relation to the patientís own personal values and goals, and (3) the ability to communicate meaningfully.

More specifically with regard to patient capacity to decide to undertake VTD, some of the factors which are likely to be taken into consideration are the state of the disease process, if full relief from pain and suffering has been achieved, and the realization that a decision to stop food and fluid, unlike a request for PAS, is so readily reversible, thus allowing the patient to change his or her mind if suffering were to occur.

One factor which should not be considered in determining decision-making capacity is the decision itself, the refusal of food and fluid. Patients should not be judged as lacking decision-making capacity based on the view that what they decide (a request for support in undertaking VTD) is unreasonable. People are entitled to make decisions which others think are foolish without being held to have lost decision-making capacity as long as their choices are arrived at through a competently reasoned process and are consistent with their personal values.

[Note: This mirrors the argument some people make that a patient asking for physician assisted suicide proves the patient is mentally incapacitated.]

Although physicians are obliged to honor a patientís directives to forsake life-support therapies, they also have the right to try to influence the patient in a direction different from the one chosen, as long as it is done with respect for the patientís autonomy and not by coercive or manipulative means. In addition, it is ethical for providers to leave food and water at the bedside of a patient who has voluntarily chosen to refuse sustenance and to continue to encourage its intake, unless the patient asks the physician not to do so. In fact, many commentators believe this should be done to document the continuing voluntariness of the patientís actions.

13.06 Ethical Aspects

It is hard for many healthy people to accept that a chronically or terminally ill patient might choose to die rather than continue life, but the rapidly increasing acceptance of PAS by the public bespeaks an increased acceptance of such a choice. For many reasons, the ethics of VTD is still easier to accept than that of PAS.

First, unlike PAS, VTD avoids the requirement of any active outside intervention. This means it can be realistically viewed in its entirety as a suicide which itself is neither unethical or illegal. VTD thus avoids the difficult ethical/legal issue of whether it is improper for one person to help another commit suicide.

Second, because the patient has a prolonged period in which to change his or her mind, one avoids the possibility the decision was made in a moment of irrational thinking, for it gives ample opportunity for reflection and retraction.

Third, it sets up a situation of refusal as opposed to a request for intervention. Physicians are not obliged to meet every request of a patient for intervention if the physician believes it is against the patientís best interest, but they are obliged to honor a patientís refusal of care.

Fourth, because physicians do not have to take part in the actual process of death, the medical ethics of assisted suicide is not involved. Instead, physician involvement, if any, relates only to their responsibility for carrying out the patientís request in a humane and compassionate manner. To this end, the patientís pain and other suffering, including dyspnea, can be relieved by administration of sedatives, analgesics, anti-nausea medications etc. in dosages which are not likely to be causally related to the patientís death from the underlying disease and dehydration.

Fifth, based on the findings of the Presidentís Commission for the study of Ethical Problems in Medicine and Biomedical and Behavioral Research, discontinuing medical hydration is ethically acceptable when, from the patientís point of view, it is more burdensome than beneficial.

Sixth, just as it is not morally permissible for physicians to force-feed a patient who has made a rational valid refusal to eat, it is also not morally permissible to feed and hydrate such a patient when he or she becomes incapacitated. If this intent has been clearly stated by the patient, his or her prior rational refusal continues to be decisive.

Seventh, an argument the physician who abides by the patientís rational refusal of treatment "allows the patient to die" is significantly misleading for it implies a physician decision, when it is in fact a patient decision.

13.07 Legal Aspects

The patientís legal right to make decisions about his or her medical treatment is clear, grounded both in common law and the constitutional right of privacy. This right also clearly involves the right to refuse life-sustaining treatment even when the patient is not terminally ill, as long as the decision is made with proper informed consent, is made at a time when the patient is mentally capable of decision-making, and is done without adverse coercion from others.

Although the extension of the right to refuse life-support systems to include nutrition and hydration has been challenged frequently, whenever it has been addressed by the highest court of a state it has been upheld within the common law rights of autonomy and self-determination except for two unusual situations -- when the decision is being made by a prisoner in protest over prison conditions and when parents of specific religious persuasions are making the decision for a child.

In addition, numerous courts have been asked to directly rule on the question of whether medications can be given to relieve the suffering of a patient who directs medical providers to forsake life-support systems, including nutrition and hydration. Invariably, the courts have found giving medications to these patients to be legally permissible as long as they are given with the intent of relieving suffering and not causing death.

13.08 Practical Undertaking

Some practical considerations:

First, it is important for the patient to clearly express to family and caregivers the reasons he or she is choosing to voluntarily stop eating and drinking. The patient should make it clear the decision has been thought through and reached after finding the perceived future with continued sustenance will be more burdensome than beneficial for the reasons stated. This gives the caregivers an opportunity to change the circumstances to the benefit of the patient in the hope of changing the final decision and also gives them a chance to argue for alternative approaches before the decision is carried out. Doing so will help maintain others support through the days and weeks following discontinuation of sustenance.

Second, caregivers should be made aware the only likely complaint will be that of "dry mouth," or "thirst." Such a complaint should not be taken as a desire to drink unless the patient specifically asks to be given water or fluids. Instead, such complaints should be attended to by the use of mouthwashes, removing of mouth debris, brushing of the patientís tongue, gums, and teeth with a soft toothbrush, the offer of ice chips or small sips of favorite fluids, treatment of local infections of the mouth, and use of protective coatings like Chap Stick.

Third, a pact should be made by the patient with his or her physician to use appropriate therapy to minimize suffering during the dying process and to remain available to comfort the patient by physical presence as well as treatment of symptoms, including pain, dyspnea, and dryness of the mouth. This discussion should include making everyone aware small amounts of food and fluids beyond sips of water or wetting of the mouth are inappropriate and will only increase the patientís suffering.

Fourth, care must be taken to insure forced or artificial feedings will not be initiated after the patient loses decision-making capacity. This should be done both through direct discussions with physicians and other caregivers and through the use of written advance medical directives. [See Chapter 14]


Table of Contents Introduction Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7
Chapter 8 Chapter 9 Chapter 10 Chapter 11 Chapter 12 Chapter 13 Chapter 14 Chapter 15 Chapter 16 Chapter 17

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