Questions about quality of life are often raised at times when patients are seriously ill and receiving intensive life-sustaining treatments. It is important to appreciate the relationship between quality-of-life evaluation and the use of life-sustaining treatment.
3.3.1 Question Five—Do Quality-of-Life Assessments Raise Any Questions Regarding Changes in Treatment Plans, such as Forgoing Life-Sustaining Treatment?
Although quality of life can be compromised in many ways, we propose three terms to distinguish forms of compromised quality of life that raise important ethical questions: (1) restricted, (2) severely compromised, and (3) profoundly diminished. Each of these has implications for clinical decisions.
1. Restricted quality of life describes a situation in which a person suffers from significant deficits of physical or mental health. Their ability to perform one or more common human activities is restricted by those deficits. In the presence of such restriction, the one who has the deficits, or observers, form an opinion about the worth of a life restricted in that manner. Clearly, as noted previously (see Section 3.0.5), opinions of the person living that life are determinative, even though they may differ significantly from the opinions of observers. Persons such as amputees, paraplegics, those with learning disabilities, etc, may consider that they have good quality of life, despite the deficits. It is one of the goals of medicine to support and enhance a person’s restricted quality of life
EXAMPLE. Ms. Cope, the diabetic patient who has multiple medical problems, considers her life, although restricted, to be valuable and worthwhile, whereas some observers may judge otherwise.
2. Severely compromised quality of life describes a form of life in which a person’s overall physical condition has seriously and irreversibly deteriorated, whose range of function is greatly limited, whose ability to communicate with others is minimal, and who may be suffering discomfort and pain.
EXAMPLE. A very demented 85-year-old man is confined to bed with severe arthritis, persistent decubitus ulcers, and diminished respiratory capacity. He must be fed by tube and requires heavy pain medication.
COMMENT. This description differs from the former (1) in that the patient, while still sentient and reactive, has essentially lost the ability to communicate any personal evaluation of his or her experiences. The experiences are, to an observer, those which most persons would consider undesirable and wish to avoid. Also, we use the word “compromised” rather than “restricted” because, for the most part, “restricted” patients can participate in some or many activities of ordinary life; “compromised” patients are hardly capable of participation.
EXAMPLE. Mr. Care suffers an anoxic episode of 15 minutes after cardiopulmonary arrest. After four weeks, he has not recovered consciousness. Physicians believe he is in a vegetative state.
COMMENT. Profoundly diminished qualify of life describes a situation in which not only communicative abilities are lost but also the neurological capacities to process sensory input and mental activities. We use the term “profoundly” to indicate a deep and enduring loss. In this situation, only observers’ opinions contribute to deliberation about the value of such a state (absent some prior expression by the patient). Some commentators believe that there is no quality of life, because the patient is incapable of the neural activities that generate satisfaction; other observers maintain that life as such, regardless of quality, is to be valued. These considerations are relevant to the clinical diagnosis of vegetative state which we discuss in Section 3.3.3.
We note that most persons, if given the choice, seem to consider severely compromised (2) or profoundly diminished (3) quality of life undesirable. Studies suggest that most persons, when asked their opinions about such conditions, view them as “life not worth living” or “life worse than death.” Thus, when there is no evidence of personal opinion to the contrary, it is not unreasonable to judge (2) and (3) as objectively undesirable. This is a cautious assumption, because studies suggest that persons often decide differently when imagining a situation than when they actually face such a situation. Further, we do not take this assumption alone as the basis for any decision that would lead to termination of treatment and the death of the patient. The conditions explained in Topics One, Two, and Four must also be weighed in making a decision about what constitutes proportionate care (see Section 3.3.5).
et al.. Validation of preferences for life-sustaining treatment: implications for advance care planning. Ann Intern Med
3.3.2 Severely Compromised Quality of Life
Patients whose condition fits the criteria for severely compromised quality of life may be dependent on life-sustaining interventions. The ethical question is whether it is ethically permissible to discontinue life-supporting interventions because the patient has a severely compromised quality of life.
CASE I. Mrs. A.W., a 34-year-old woman, married with three children, has had a history of scleroderma and ischemic ulcerations of fingers and toes. She is admitted to the hospital for treatment of renal failure. The big toe of her right foot and several fingers of her left hand became gangrenous. Several days later she consents to amputation of the right foot and the thumb and first finger of her left hand. After surgery, she is alternately obtunded and confused. She develops pneumonia and is placed on a respirator. The remaining fingers of her left hand become gangrenous, and more extensive amputation is required. Her renal condition worsens, and it is now necessary to consider initiating dialysis. The attending physician says, “How could anyone want to live a life of such terrible quality?” He asks himself whether dialysis should be withheld and whether the respirator should be discontinued.
CASE II. Mr. B.R. is an 84-year-old man living in a nursing home. He was diagnosed as having Alzheimer dementia 5 years ago. He is chairbound and does not respond meaningfully to human attention. He is often very agitated. He cannot now express, nor has he previously expressed, preferences regarding care. A diligent social worker’s search has not identified any relatives or friends. Apart from his dementia, he is otherwise healthy. However, he is difficult to feed, frequently choking and expelling food. He has been admitted to the community hospital twice in the past month for aspiration pneumonia. One night, he develops a violent cough and wheezing. He has a fever of 100°F. The visiting physician diagnoses aspiration pneumonia. Should he be transferred to the hospital and treated?
CASE III. Robert Wendland suffered serious brain injury after rolling his truck at high speed. He was unconscious for 16 months before regaining consciousness. After 6 months of rehabilitation, Robert remained severely cognitively impaired, emotionally volatile, and physically handicapped. He was able to respond to simple commands, communicate inconsistently on a yes/no board, and engage in simple physical movements, such as drawing circles and a capital R. While he could respond to simple questions, he did not answer the question whether he wished to die. A consulting neurologist described his condition as “a minimally conscious state …[with] some cognitive function” and the ability to “respond to his environment,” but not to “interact” with it “in a more proactive way.” Robert required feeding by jejunostomy tube. After the tube dislodged and was replaced three times, his wife refused to consent to further surgical intervention. Physicians agreed, as did the ethics committee. Robert’s mother and sister insisted that treatment be continued.
COMMENT. In Case I, Mrs. A.W. has a progressive disease and its associated problems. She faces severe physical deficits and long, difficult rehabilitation. This evokes in an observer the judgment, “No one would want to live with such a quality of life.” Of course, Mrs. A.W. cannot verify this observer’s judgment at this time. Many of her problems are susceptible to effective medical treatment and rehabilitation. In addition, she herself has consented to the initial amputations, suggesting her willingness to live with these deficits. Finally, her vital personality before her surgery suggested to the staff that she had the ability to cope with rehabilitation and the difficulties of subsequent life. Even though, at the time of her hospitalization, she seems to some observers to have severely compromised quality of life, Mrs. A.W. should be viewed as a person with restricted quality of life.
In Case II, Mr. B.R. is transferred to the community hospital. The admitting physician, who is familiar with the case, contacts the chairperson of the ethics committee. Because Mr. B.R.’s preferences are not known, and no surrogate exists, the hospital requests a court-appointed guardian. The ethics committee chairperson instructs the attending to treat Mr. B.R. according to medical indications until a guardian can be designated.
Case III is an actual case decided by the California Supreme Court (Wendland, 2001). Mr. Robert Wendland’s condition was diagnosed as “minimal consciousness.” This recent diagnostic term describes persons with severe alterations in consciousness who do not meet diagnostic criteria for coma or for vegetative state. This condition ranges from dim awareness with an intermittent ability to communicate in limited ways to a near vegetative state with little awareness and virtually no ability to communicate. Neuroimaging may sometimes reveal some brain activity in sensory or memory areas. This state falls under our definition of severely compromised quality of life. A reasonable person may choose not to live such a life. However, in the absence of sufficient evidence that this patient would so judge, observers, that is physicians, surrogates, and family, cannot decide whether it is a life not worth living.
RECOMMENDATION. In Case I, it is ethically obligatory to continue to treat Mrs. A.W. Significant medical goals can still be attained and, although her current preferences cannot be ascertained, it can be presumed that she favors continued treatment. Many persons do live successfully and happily with such severe restrictions. She will have a restricted quality of life but not severely or profoundly diminished one. The assumption that no rational person would desire to live in this state, justified in Mr. B.R.’s case, is not justified in the case of Mrs. A.W.
In Case II, ethical considerations must ascertain what is in Mr. B.R.’s best interest. Because nothing is known about how Mr. B.R. evaluates the quality of his life, any judgment that his quality of life is severely restricted reflects an observer’s assessment of the physical facts as well as an evaluation of living with extreme limitations of physical and mental activity and the painful and intrusive interventions needed to sustain physiological functions. If B.R.’s life continues, it is likely to deteriorate even further. He is likely to suffer recurring episodes of aspiration. Quality of life, then, becomes a relevant ethical consideration which the physicians and any appointed surrogate or guardian must reflect upon in their substituted judgments about his care.
We believe that it is ethically permissible to recommend forgoing treatment for Mr. B.R.’s pneumonia after several episodes have shown this to be the beginning of an unpreventable recurring pattern. Tube feeding has risks of aspiration and infection. Also, clinical studies reveal that patients with advanced dementia who are tube fed have neither any better nutritional status nor any longer survival than patients without tube feeding. A decision to forgo artificial nutrition and hydration can be justified on the basis of probabilistic futility (see Section 1.2.2). However, severely compromised quality of life is also a significant justification for these clinical decisions. There is no moral obligation to assist in sustaining a form of living that offers no perceptible satisfaction but only distress and suffering. It can be assumed that a rational person would not choose such a life.
In Case III, we believe that it is obligatory to sustain Mr. Robert Wendland, as any clear evidence of his own preferences is absent. The California Supreme Court did not authorize the conservator to deny surgical replacement of the feeding tube. Mr. Wendland died before the decision was rendered. Severely compromised quality of life, in itself, is not a sufficient reason to forgo life support; there must also be evidence, such as a written advance directive, of the patient’s preferences.
3.3.3 Profoundly Diminished Quality of Life
Profoundly diminished quality of life is our designation of a situation in which the patient suffers extreme physical debilitation together with complete and irreversible loss of sensory and intellectual activity. By definition, this judgment cannot result from personal evaluation because any person in such a situation lacks the ability to perceive, understand, and evaluate his or her own state.
CASE. Mr. Care, the patient with multiple sclerosis, is living at home. He has a respiratory arrest associated with gram-negative pneumonia and septicemia. He suffers approximately 15 minutes of anoxia before the arrival of emergency services. He is resuscitated, rushed to the hospital, and placed on a respirator. After 3 weeks, Mr. Care has not recovered consciousness and remains dependent on the respirator. A neurology consultant states that Mr. Care has the neurologic signs consistent with the vegetative state and that, while there is some remote chance of a very limited recovery, he believes that Mr. Care is highly likely to remain in a chronic vegetative state. The attending physician recommends that he be weaned from the respirator; his family objects. He is successfully weaned and, after several months, neurology affirms that he is still in vegetative state. At no time in the course of his care has he expressed any clear preferences about his future. Should respiratory support be continued?
COMMENT. Mr. Care is not dead according to brain function criteria. That is, although he has lost, apparently permanently, most cortical functions, he still has brainstem activity, respiration, heartbeat, and many spinal reflexes. Therefore, he is not legally dead (see Section 1.5).
The diagnostic term “vegetative state” must be used with care, particularly when the words “persistent” or “permanent” are associated with it. Current usage recommends that the phrase “vegetative state” be applied to a neurological condition following severe head trauma or anoxic insult. The patient comes out of initial coma but shows no signs of consciousness of self or surroundings. Persons in a vegetative state retain hypothalamic and brainstem functions, as well as spinal and cranial nerve reflexes. Their clinical appearance shows eye movement (but seldom tracking), pupillary adjustment to light, gag and cough reflex, movement of trunk and limbs. These patients also go through sleep-wake cycles, sometimes grimace, grin, groan, seem to weep and utter unintelligible articulations.
This condition can be called continued or chronic vegetative state if it persists for several months (the term “persistent” is no longer favored). Some neurologists use the term “permanent” vegetative state when it is judged to be irreversible. Permanent vegetative state is a neurologic prognosis defined as “a sustained, complete loss of self-aware cognition with wake/sleep cycles and other autonomic functions remaining relatively intact. The condition can either follow acute, severe bilateral cerebral damage or develop gradually as the end stage of a progressive dementia” (Jennett). A prognosis that the vegetative state is permanent can be reliably made after three months for anoxic insult and one year after trauma. The majority of these patients do not require respiratory support but do require artificial nutrition. Other neurologists reject the use of the term permanent vegetative state because it implies prognostic certainty inconsistent with a few well-documented cases of late recovery of consciousness from a vegetative state.
The clinical signs of vegetative state, such as open eyes, limb movement, yawning, and sleep-wake cycles lead observers, particularly family, to interpret these noncognitive behaviors as signs of consciousness. Because these signs persist after the diagnosis of vegetative state, family members are sometimes confused about the prospects for the patient’s recovery.
A further complicating factor is that some patients do recover consciousness from a vegetative state. The clinical diagnosis of “minimal consciousness” is made when there is intermittent evidence of self or environmental awareness, verbalization or simple but reproducible responses to commands or questions. Nevertheless, patients who display minimal consciousness remain significantly compromised and severely disabled. Although therapeutic and rehabilitative research is ongoing, little is known about how to effectively treat this condition. The case of Robert Wendland illustrates the confusion and controversy about minimal consciousness (see Section 3.3.2).
Care must be taken not to mistake a vegetative state for another neurologic condition known as “locked-in state.” In this latter condition, lesions in the midbrain paralyze efferent pathways governing movement and communication but leave consciousness intact. Thus, the patient is conscious and aware but unable to respond or communicate because of paralysis. Neurologic consultation is required to make a differential diagnosis.
R. Medical aspects of the persistent vegetative state—a correction. The Multi-Society Task Force on PVS. New Engl J Med
. 1995; 330(21):130; 330(22):1572.CrossRef
et al.. The minimally conscious state: definition and diagnostic criteria. Neurology
B. The Vegetative State: Medical Facts, Legal and Ethical Dilemmas. New York, NY: Cambridge University Press; 2002.
B. The persistent vegetative state. Resolving Ethical Dilemmas: A Guide for Clinicians. 5th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2013: chap 20.
COMMENT. Compare this version of Mr. Care’s case with Ms. Care’s condition as described in Section 1.1.1 where his death is imminent. In that situation, the judgment that further intervention will not achieve any medical goals justifies the decision to discontinue mechanical support. That judgment is based upon probabilistic futility. In this present version of the case, Mr. Care is neither dead nor imminently dying. If his pneumonia resolves and he can be weaned from the respirator, he will not recover from his underlying disease, nor is he likely to return to mental functioning sufficient for consciousness and communication. On the other hand, if respirator support is removed, Mr. Care may breathe on his own and continue to live in a vegetative state.
RECOMMENDATION. In our judgment, a confirmed diagnosis of persistent vegetative state contributes to an ethical justification to discontinue respiratory support and all other forms of life-sustaining treatment. This recommendation should be made to the family and their agreement secured. We argue that the conjunction of three features of this case justifies such a decision:
No goals of medicine other than support of organic life are being, or will be, accomplished. We do not believe that this goal alone is an overriding and independent goal of medicine. While life-sustaining interventions, namely, respiratory support are not literally “futile,” no other medical intervention can benefit the patient. See Sections 1.2.2 and 3.3.4.
No preferences of the patient are known that might contradict the assumption that he would wish medical support for organic life discontinued. Usually, a surrogate judgment of the patient’s best interests would substitute for their preferences. However, in the state of apparently irreversible loss of cognitive and communicative function, the individual no longer has any personal “interests,” that is, nothing that happens to the patient can in any way advance his or her welfare nor can the individual evaluate any event or circumstances. If no interests can be served, life-sustaining interventions are not mandatory.
The patient no longer has the neurologic/experiential capacities to feel satisfaction (or dissatisfaction) with his state. The subjective element of qualify of life, namely, satisfaction, is absent.
The conjunction of these three ethical arguments, drawn from medical indications, patient preferences, and quality of life, justify the conclusion that physicians have no ethical obligation to continue life-sustaining interventions. When no interests of the patient are served, no medical goal other than sustaining organic life is achievable, and there is no evidence that the patient would choose continued life, no duty to continue medical support exists. Other reasons, such as the family’s desire to await the arrival of distant relative or forensic issues, might justify continued support for a limited time. Finally, if a surrogate or family insists on continued support of a patient in vegetative state, contextual features such as excessive use of resources, moral distress of staff, or other burdens on the institution may lead the institution to seek relief. Ethical arguments in favor of such relief are found in Section 4.5.
CASE. (Continued.) While Mr. Care is in a continuing vegetative state, he becomes anuric and is in renal failure. Should dialysis be initiated?
This version of the case involves an instance of not starting an intervention rather than stopping one already being used. Many interventions are initiated at times when their use is clearly indicated. The achievement of important goals is still seen as possible. When these goals cannot be achieved, and when there are other important considerations, for example, absence of patient preference and severely diminished quality of life, interventions may be discontinued.
There may be emotional differences between starting and stopping treatment. Some physicians find it more troubling to stop an ongoing intervention than not to initiate a new one. The initiation of treatment may sustain some measure of hope. If, despite the physician’s efforts, the patient succumbs to the disease, the physician has tried and done her best. Also, in withdrawing treatment, the physician may feel responsible (in a causal sense) for the events that follow, even though she bears no responsibility (in the sense of ethical or legal accountability) either for the disease process or for the patient’s succumbing to the disease. These personal feelings, strong though they may be, do not alter the ethical judgment that, in these clinical situations, it is permissible to refrain from initiating an intervention and also permissible to discontinue it.
Finally, after deciding to refrain from aggressive therapeutic efforts, new medical problems, such as infection or renal failure, sometimes tempt physicians to initiate therapeutic interventions to deal with these acute problems. This is, of course, irrational, unless the intervention has as its purpose another goal more appropriate to the situation, such as providing comfort to the dying patient.
The terminology “do not escalate” (DNE) is sometimes introduced into this discussion. While apparently intended to slow down or stop the relentless application of nonindicated procedures, the phrase may be confusing and misleading in clinical situations. So many clinical interventions may be in use that can be scaled up or down, that a general term such as “do not escalate” may not provide helpful instruction for house officers and nurses. This terminology should not be employed unless its meaning is made clear: refer to our discussion of cardiopulmonary resuscitation (CPR) (see Section 1.3).
RECOMMENDATION. The decision to forgo support is justified in both versions of Mr. Care’s case. It is the common position of medical ethicists, supported by many judicial decisions, that the distinction between stopping and starting is neither ethically nor legally relevant. It is our position that there is no significant ethical difference between stopping and starting if the essential considerations regarding medical indications, patient preference, and quality of life are the same.
3.3.4 Artificially Administered Nutrition and Hydration
Artificially administered nutrition and hydration refers to a liquid preparation of calories, proteins, carbohydrates, fats, and minerals that are administered to the patient by means of a nasogastric or gastrostomy tube in order to sustain metabolic function when a patient is unable to take solid or liquid nutrition by mouth. It is used to feed patients with head and neck cancers or gastrointestinal disorders, after certain surgical procedures and patients who are comatose, demented, or in a vegetative state.
CASES. Mr. Care has been started on intravenous fluids and nutrients while in coma after his respiratory arrest. Is it permissible to discontinue these measures after he is judged to be in a permanent vegetative state? Mr. B.R. has deteriorated mentally and now lies in a fetal position, showing no response to verbal or tactile stimuli. Should a feeding tube be employed? In both cases, death would ensue from starvation and dehydration unless administered nutrients and fluids are used. Is artificial administration of nutrition and hydration ethically distinct from other life-sustaining procedures such as respiratory support, dialysis, or medications?
B. Tube and intravenous feedings. Resolving Ethical Dilemmas: A Guide for Clinicians. 5th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2013: chap 18.
COMMENT. There has been considerable debate about this issue. Some authors argue that feeding is so basic a human function and so symbolic of care that it should never be forgone. They also note that forgoing these techniques is a direct cause of death by starvation or dehydration, while forgoing other techniques such as supported ventilation allow inevitable death to happen. They wonder about the social implications of a policy that would deprive the most helpless humans of basic human attention. Other ethicists judge that the burdens of a continual life of pain, discomfort, immobility, minimal consciousness, and loss of communication would not be desired by any human, and those burdens so overwhelm benefits of life that there is no obligation to assist in sustaining life. In addition, continued nutrition and hydration may have adverse consequences for the dying patient, such as discomfort of fluid overload, aspiration, or infection at insertion sites. Also, no study has demonstrated that administered nutrition improves nutritional status or prolongs life for patients with advanced dementia, compared to patients who do not receive this intervention. Finally, it is generally agreed that deprivation of nutrients and hydration does not cause the distressing symptoms of starvation in the seriously debilitated patient, and certainly not for patients who have lost the capacity for experience, as in the vegetative state. Also, the dying patient may cease eating because of decreased metabolic requirements.
Jewish scholars and Catholic theologians strongly support the moral obligation to provide nutrition for the dying. However, both admit certain specific situations in which this obligation does not hold. Jewish scholars permit refraining from artificial feeding if it causes pain and distress or in the final phases of dying. Catholic theologians have generally accepted the position that administered nutrition and hydration may be discontinued when burdens outweigh the benefits. The Ethical and Religious Directives for Catholic Health Care Services (2004) state “there should be a presumption in favor of providing nutrition and hydration to all patients…as long as this is of sufficient benefit to outweigh the burdens involved to the patient.” In March 2004, Pope John Paul stated that administered nutrition and hydration were ordinary means of care and obligatory, even for patients in a vegetative state. However, in November 2004, he reaffirmed that all decisions about treatment should be based on the benefit/burden assessment of the principle of proportionality (see Section 3.3.5). Changes have been made in the Ethical and Religious Directives that stress the obligation to provide nutrition and hydration for dying patients, but at the same time, the traditional exceptions for treatments that are ineffective and burdensome are retained.
JJ, eds. Artificial Nutrition and Hydration and the Permanently Unconscious Patient. The Catholic Debate. Washington, DC: Georgetown University Press; 2007.
U.S. Conference of Catholic Bishops. Ethical and Religious Directives for Catholic Health Care
. 5th ed; 2009. www.usccb.org/
Ethical Religious Directives. Accessed February 8, 2015.
In our opinion, a decision to forgo administered nutrition and hydration is ethically permitted when: (1) no significant medical goal other than maintenance of organic life is possible; (2) the patient is so mentally incapacitated that no preferences can be expressed now or in the future; (3) no prior preferences for continued sustenance in such a situation have been expressed; and (4) the patient’s situation is such that no discomfort or pain will be experienced by discontinuing the intervention. Although we acknowledge that there is diversity of opinion on this matter, we take the position that, like all other medical interventions, the ethical propriety of nutrition and hydration should be evaluated in light of the principle of proportionality, that is, the assessment of the ratio of burdens to benefits for the patient. Similarly, we support the view that if a patient has formulated an advanced directive that specifically mentions omission of artificial nutrition and hydration in a condition of advanced dementia, such a directive should be honored.
RECOMMENDATION. In our opinion, it is ethically permissible to forgo nutrients and hydration in Mr. Care’s case. He is in a vegetative state with no prognosis for recovery of consciousness and, presumably, lacks experience of any sort. He will not experience discomfort from starvation or dehydration. In Mr. B.R.’s case, opinion would be more divided. Some commentators might note that, while profoundly demented, he is still capable of experience; his continual moaning and restlessness indicate that he is uncomfortable. If discontinuing nutrients and fluids would aggravate his distress, it should not be done. However, it is unlikely that severe pain or discomfort will follow the withdrawal of nutrient support in a patient so deteriorated, and it is likely that death will occur rather quickly. Thus, it is our opinion that nutrition and hydration may be discontinued. The patients should receive all appropriate comfort care measures. Physicians may recommend this to decision makers for these patients.
J. Nonmaleficence. Principles of Biomedical Ethics. 7th ed. New York, NY: Oxford University Press; 2012: chap 4.
R, ed. Palliative Care Ethics: A Companion for All Specialties. 2nd ed. New York, NY: Oxford University Press; 1999.
MC. Advance directives, dementia, and withholding food and water by mouth. Hastings Cent Rep
3.3.5 The Ethical Principle of Proportionality
Previous paragraphs have mentioned the ethical principle of proportionality. Many ethicists endorse the form of ethical reasoning that balances the intended benefits of treatment against the possible burdens. This form of reasoning is sometimes called proportionality, namely, a medical treatment is ethically mandatory to the extent that it is likely to confer greater benefits than burdens upon the patient. Proportionality is one way of formulating the principles of beneficence and nonmaleficence in actual circumstances. It also includes the principle of autonomy and of satisfaction about quality of life, because the terms “burdens and benefits” can comprise all these ethical elements.
Proportionality is a test of the ethical obligation to recommend or provide a medical intervention: it is the estimate of its promised benefit over its attendant burdens. Although benefit-burden ratios are intrinsic to all medical decision-making, it is important to notice that proportionality endorses this form of reasoning even in life-death decisions, which has often been thought to exclude such calculation in favor of an absolute duty to preserve life. In fact, some patients may view death as a benefit. Proportionality states that no absolute duty to preserve life exists; that obligation holds only when life can be judged more as a benefit than a burden by and for the patient. This is a judgment that persons make about their own lives, but in clinical care, it also falls to the families of patients, their surrogates, and their health care providers.
Proportionality clearly applies to the patient’s preferences. Patients have the right to determine what they will accept as benefits and burdens. However, proportionality also applies to medical indications. Physicians must formulate in their own minds the benefit-burden ratio to recommend appropriate options for interventions and for care to patients or to their surrogates. Proportionality reasoning also must consider quality of life, insofar as a patient or those responsible for making decisions in the patient’s behalf, view life as a benefit satisfactory to the patient, or a burden that the patient would reject.
One still hears in clinical settings such remarks as, “Withholding treatment might be acceptable, but once treatment is started, we cannot stop or withdraw it,” or “Would extubation be active or passive euthanasia?” Most ethicists consider these distinctions confused and confusing. This manner of discussing clinical problems derives from the complex forms of moral reasoning, such as the distinctions between omission and commission, withholding and withdrawing, ordinary and extraordinary care that were long used to formulate arguments in medical ethics. These formulations may have their merits, but we suggest that proportionality reasoning can encompass and clarify these forms of argumentation.
JF. Distinctions and rules governing non-treatment. Principles of Biomedical Ethics. 7th ed. New York, NY: Oxford University Press; 2012.
President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Elements of good decision making. Deciding to Forego Life-Sustaining Treatment
. Washington, DC: US Government Printing Office; 1983: chap 2. https://bioethics.georgetown.edu/library
. Accessed February 11, 2015,
3.3.6 Legal Implications of Forgoing Life Support
The death of a patient resulting from a decision to discontinue medical intervention on the grounds of quality of life has legal implications. The cases of termination of treatment discussed in Topic One involved persons whose death was imminent and for whom further intervention was unlikely to attain medical goals. The cases in Topic Two dealt with termination of treatment that a competent patient had declined. Cases of these types are not likely to generate legal problems unless someone, such as a relative or another physician, claims the judgment of medical futility was wrongly made or that the patient’s preferences were ignored. In the cases described in the present chapter, the patient could be kept alive, perhaps for some time, by continued ventilation, by dialysis, or by some other intervention. It is the severely compromised or profoundly diminished quality of their continued life that lends support to a recommendation to cease intervention.
Cases where quality of life is the central issue are legally more problematic than the sorts of cases described in Topics One and Two. For instance, a critically or terminally ill person whose preferences are unknown is allowed to die. In legal theory, this might be considered homicide (although the traditional definitions of homicide certainly did not envision the problems occasioned by modern medical technology). The physician might be accused of murder or criminal negligence, or named as an accomplice in the illegal decision of another if he or she accedes to, or does not object to, the discontinuing of life support. A number of legal cases touching these matters have been adjudicated. We summarize some major decisions in the next section (see Section 3.3.7).
It is our opinion that physicians are acting within the law, as currently understood, when they recommend that life-supporting interventions be withheld or withdrawn on grounds of quality of life (unless specific law to the contrary exists in any particular jurisdiction) under four specific conditions: (1) It is virtually certain that further medical intervention will not attain any of the goals of medicine other than sustaining organic life; (2) the preferences of the patient are not known and cannot be determined; (3) quality of life clearly falls below minimal; and (4) family are in accord. We hold this opinion because, despite the legal perplexities, most leading cases thus far adjudicated have affirmed the legal correctness of allowing the patient to die when these conditions are present. These conditions are stated in various ways in many model policies that have been prepared by local and national medical societies, specialty associations and advocacy groups. Health care institutions should request their legal counsel to prepare clear instructions for the medical staff in view of prevailing local law; hospital ethics committees should formulate policy for the guidance of clinicians that reflects these ethical conditions as well as prevailing law.
3.3.7 Judicial Decisions About Forgoing Life-Sustaining Treatment
Some important judicial decisions relevant to cases of this sort are summarized below. These summaries are brief and, given the legal complexities, are provided only to familiarize the reader with the names of the cases and the principal issues. Fuller description and the proper legal citations can be found in many places. See below for some resources.
B. Legal rulings on life-sustaining interventions. Resolving Ethical Dilemmas: A Guide for Clinicians. 5th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2013: chap 22.
A. The Right to Die. New York, NY: Wiley; 1998.
J. Law and Bioethics. Washington, DC: Georgetown University Press; 2001.
The judicial decisions in this area can be divided into two categories: (1) those involving competent patients expressing a desire to have medical treatment terminated, and (2) those involving incompetent patients whose surrogates wish to terminate treatment.
Competent patients. A California appellate court determined in 1984 that the right of privacy granted by the California Constitution is broad enough to allow a competent patient to refuse all medical interventions including those that, once removed, would hasten death (Bartling v. Superior Court, 1984). The case involved a 70-year-old man suffering from multiple chronic conditions, including emphysema and a malignant tumor on his lung. The patient, who had decisional capacity, sought the removal of his ventilator; his hospital refused, concerned that the patient would die if the machine was removed. The court sided with the patient, holding that his right to have life support discontinued extends to both competent and comatose terminally ill patients.
In 1990, the US Supreme Court stated that competent patients have a constitutionally protected interest in refusing medical treatment, extending the protections granted by the California court to the entire nation (Cruzan v. Missouri Dept. of Health, 1990). The US Supreme Court said the right was based in the term “liberty” in the 14th Amendment, whereas the California court had based the right in the California Constitution’s privacy clause. Regardless of the source of the right, the end result was the same: a competent patient’s protected interest in refusing medical treatment was recognized. Although the Supreme Court noted that the State’s interests in preserving life, preventing suicide, and protecting the interests of third parties and the integrity of the medical profession could overrule the patient’s interests, this rarely occurs in cases involving competent patients. Some legal scholars believe that the right of a competent individual to refuse life-sustaining treatment is “virtually absolute.” Judicial decisions have most commonly upheld this right when patients are also suffering from terminal conditions.
Incompetent patients. The second category of cases involves patients who are incompetent, whether caused by being comatose, mentally retarded, or otherwise impaired. In a landmark case, In the Matter of Quinlan (1976), the New Jersey Supreme Court held that a patient’s right of privacy includes the right to refuse respiratory support that prolongs organic life when the patient is not likely to return to a “conscious and sapient condition.” Karen Ann Quinlan, 22 years of age, had been in a chronic vegetative state for over a year. Her father had been appointed her surrogate. He sought a court order to remove the respirator prolonging Karen’s life. The court determined that a surrogate may assert this right on behalf of a patient and that a physician’s determination that the patient will not return to a “conscious and sapient condition,” coupled with concurrence by a hospital ethics committee, shields the physician and the hospital from civil and criminal liability if life support is withdrawn.
This view, which equated an incompetent patient’s right to refuse treatment to that of a competent patient, endured until the mid-1980s in most jurisdictions. The decision in Cruzan v. Missouri Dept. of Health, the first US Supreme Court decision in the “right to die” cases, further clarified the issue. The parents of Nancy Cruzan, a patient in a persistent vegetative state, petitioned the US Supreme Court to order the removal of artificial nutrition and hydration tubes from their daughter after the Missouri Supreme Court denied their request. The US Supreme Court stated that administered nutrition and hydration, like respirators, are medical interventions that can be removed at the patient’s request. In the case of incompetent patients, the Court held that states may set their own standards for the strength of evidence required to prove that the incompetent patient would have forgone the treatment had she been competent. Missouri had adopted a stringent “clear and convincing evidence” standard, which has been applied by New York in similar cases (In the Matter of O’Connor, 1988). It was not clear whether an advance directive would be required to meet this standard in Missouri, or whether an oral pronouncement of the patient’s preferences would be enough, as has been held in New York (In the Application of Eichner, 1979); there the court ruled that an incompetent patient’s statements made concerning respirators while the patient was competent were sufficient evidence of the patient’s preferences to permit the removal of the patient’s respirator. In Cruzan, the US Supreme Court ordered the Missouri trial court to rehear the case: that rehearing found that Nancy’s comments to friends prior to her accident constituted the requisite clear and convincing evidence.
Terri Schiavo, a 41-year-old woman, had been in vegetative state for 15 years after an anoxic brain injury from a cardiac arrest. The Florida District Court authorized removal of medically administered nutrition and hydration on the testimony of Terri Schiavo’s husband and legal guardian. He affirmed that she had told him, when she was healthy, that she would not desire life support in such a situation. Some states have used lesser evidentiary standards than “clear and convincing evidence,” although the Cruzan case makes it clear that states are free to adopt the higher standard. After much litigation by the parents of Terri Schiavo, and despite the intermeddling of the Florida Governor, the US Congress and President Bush, the original decision of the Florida District Court authorizing the removal of administered nutrition and hydration was upheld by every state and federal court that reviewed the case (Florida, 2003).
A more difficult decision is that involving an incompetent person whose preferences are unknown. These cases appear when patients have never been competent, such as individuals who have been severely retarded since birth, or when formerly competent individuals never expressed their preferences. The courts have taken two main approaches to this situation. Some courts allow the patient’s guardian to make decisions for the patient, taking into account the patient’s “personal value system” (In the Matter of Jobes, NJ, 1987). This situation presents a difficult ethical situation for surrogates, who might be tempted to interject their personal values into the decision-making process. Currently, all but two states accept the decisions of close relatives in similar situations, and many states will accept close friends as surrogates.
Courts have also endorsed the “best interests” standard when the preferences of the patient were never known (see Section 3.0.7). This implies that death can be in the best interest of a person. The Quinlan decision clearly accepted this justification and has generally been followed. Usually, court intervention in such matters is unnecessary when physicians and family members are in agreement as to whether treatment should be withdrawn. For example, a Pennsylvania case held that a close family member of an incompetent patient may request that life support be withdrawn without a court order if two physicians diagnose the patient as being in an irreversible persistent vegetative state (In re Fiori, Penn., 1996). When family members are in conflict with each other or with physicians, attempts to mediate or negotiate the disagreement should be attempted. Such attempts may include ethics committee review, ethics consultations, psychiatric consultations, or team-family meetings. If nonjudicial efforts fail, litigation may be necessary to resolve the conflict.