INTRODUCTION
Quality of life is the third topic that must be reviewed in order to understand any problem in clinical ethics. Although the idea of quality of life is difficult to define, it is often raised in complex cases and must be addressed. This chapter explains the concept of quality of life, analyzes its implications for clinical decisions, and suggests certain distinctions and cautions that should be observed when discussing this concept in clinical care. The chapter also reviews in detail an area of clinical care in which quality-of-life considerations often loom large, namely, end-of-life care, including termination of life-support and physician-assisted dying.
The two ethical principles discussed in the previous topics, namely, beneficence and respect for autonomy, are relevant to this topic. In Topic One, we focused on one implication of the very broad idea of beneficence, namely, as a moral principle that directs persons to help others in need. Medical indications comprise the actions which aim to meet the needs of patients. In this topic, we focus on another aspect of the principle of beneficence, namely, the duty to act in ways that bring satisfaction to other persons. Many moral philosophers have taken satisfaction or happiness as a significant element of beneficence. We propose that it is particularly relevant to clinical decisions. One significant feature of all medical interventions is the aim to produce a state of satisfaction for the patient who has sought treatment. He or she is not only made well, but feels well. Quality of life, then, refers to that degree of satisfaction that people experience and value about their lives as a whole, and in its particular aspects, such as physical and psychological health. The ethical dimensions of any case in clinical medicine must include not only appropriateness of interventions (beneficence as help) and respect for the patient’s preferences (autonomy) but also the improvement of quality of life (beneficence as satisfaction). When medical care fails to do so, ethical problems will arise, as this topic will demonstrate.
Quality of life as a state of satisfaction expresses a value judgment: the experience of living, as a whole or in some aspect, is judged to be good or bad, better or worse. Efforts have been made to develop measures of quality of life that can be used to give some empirical dimension to this value judgment and to evaluate outcomes of clinical interventions. Such measures usually list a variety of physical functions, such as mobility, performance of activities of daily living, absence or presence of pain, social interaction, and mental acuity. Scales are devised to rate the range of performance and satisfaction with these aspects of living. These various measures attempt to provide an objective description of what is inevitably a highly subjective and personal evaluation. Empirical studies of this subject are difficult to design and are limited in application. Also, individuals may deviate, often in striking ways, from the general views described in empirical surveys. In this empirical sense, quality of life may be defined as a multidimensional construct that includes “performance and enjoyment of social roles, physical health, intellectual functioning, emotional state, and life satisfaction or well-being.”
Some authors distinguish quality of life from sanctity of life. By the term sanctity, they mean that human life represents the highest value that must be strenuously protected and preserved. Some use this term to assert that physical life must be sustained under any conditions, and for as long as possible. In this view, evaluations of quality of life are irrelevant if they lead to any diminution of efforts to sustain life. This view has deep roots in some religious traditions. It has a secular counterpart, sometimes called “vitalism” which holds that organic life must be preserved even when all other human functions are lost. We believe that the profound respect for human life expressed in the phrase “sanctity of life” is not incompatible with decisions to refrain from medical treatments that prolong life in the particular circumstances that will be stated in this chapter.
One fundamental goal of medical care is the improvement of the quality of life for those who need and seek care. All the goals of medicine stated in Section 1.0.9, such as relief of pain and improvement of function, are related to this fundamental objective. Patients seek medical attention because they are distressed by symptoms, worried by doubts about their health, or disabled by accidents and disease. The physician responds by examining, evaluating, diagnosing, treating, curing, comforting, and educating. These activities aim to improve the quality of the patient’s life.
The four patients described in Section 1.0.8 illustrate how medical treatment may affect quality of life in various ways. Mr. Cure’s headache, stiff neck, and malaise are symptoms of meningitis. These symptoms can be relieved by administering an antibiotic that will eliminate the infection causing them. The quality of his life, impaired by the infection, is rapidly restored to normal and his future quality of life will be improved if the treatment helps him avoid chronic neurologic impairment. In other situations, the quality of the patient’s life is seriously disrupted by a disease for which no cure is available; the patient is permanently, or will become, progressively disabled. For example, the quality of life for Mr. Care who has multiple sclerosis is generally diminished but made “tolerable” by various medical, nursing, and rehabilitative interventions. In some cases, a “trade-off” may be encouraged by the doctor and the patient may accept certain reductions in quality of life in order to prevent other later and far worse complications of the disease. For example, Ms. Cope, a patient with brittle diabetes, will have to endure a strict dietary and insulin regimen which may affect her current quality of life in order to prevent kidney failure or blindness in the future. Similarly, Ms. Comfort will have to undergo a mastectomy and multiple courses of chemotherapy and radiotherapy in the attempt to cure her cancer. If the treatment succeeds, Ms. Comfort will have traded a decreased quality of life in the present for an improved quality of life in the future.
These cases illustrate our view that an essential component of good care is improvement of the patient’s quality of life. The evaluation of quality of life is always relevant to providing appropriate medical care. Patients and their physicians must determine what quality of life is desirable and attainable, how it is to be achieved, and what risks and disadvantages are associated with restoring the desired quality. The risks and benefits of medical interventions are relatively immediate when aimed at the reversal of a curable disease process. The risks and benefits associated with quality of life also focus on the long-term consequences of accepting or refusing a recommendation for medical intervention. If the patient consents to treatment, what sort of life will the patient have during and after the treatment? These considerations should be part of all serious discussions of medical choices.
Quality-of-life discussions become difficult in several ways: (1) when there is a notable divergence between quality of life as assessed by physicians in contrast to patients, (2) when patients are unable to express their evaluation about the quality of life they are likely to experience, (3) when the enhancement of normal qualities is sought as a goal of medicine, (4) when quality of life seems to have been entirely lost, and (5) when quality of life is used as an objective standard for the distribution of scarce health care resources. The first four issues are discussed in this topic; the fifth is discussed in Topic Four.
We ask eight questions about quality of life relevant to the identification and assessment of any ethical issues.
What are the prospects, with or without treatment, for a return to normal life and what physical, mental, and social deficits might the patient experience even if treatment succeeds?
On what grounds can anyone else judge that some quality of life would be undesirable for a patient who cannot make or express such a judgment?
Are there biases that might prejudice the provider’s evaluation of the patient’s quality of life?
What specific ethical issues arise concerning improving or enhancing a patient’s quality of life?
Do quality-of-life assessments raise any questions that might contribute to a change of treatment plan, such as forgoing life-sustaining treatment?
Are there plans to provide pain relief and provide comfort after a decision has been made to forgo life-sustaining interventions?
Is medically assisted dying ethically or legally permissible?
What is the legal and ethical status of suicide?
3.0.4 Question One—What Are the Prospects, With or Without Treatment, for a Return to Normal Life and What Physical, Mental, and Social Deficits Might the Patient Experience Even if Treatment Succeeds?
The term “normal life” defies any single definition. Quality-of-life judgments are not based on a single dimension, nor are they entirely subjective or objective. They must consider personal and social function and performance, symptoms, prognosis, and the often unique values that patients ascribe to the quality of their life. Several important questions must be addressed: (1) Who is making the evaluation—the person living the life or an observer? (2) What criteria are being used for evaluation? And finally, the crucial ethical question, (3) What types of clinical decisions are justified by reference to quality-of-life judgments?
It is important to distinguish between two uses of the phrase quality of life. Failure to do so causes confusion in clinical discussions.
1. In its most proper meaning, “quality of life” refers to the personal satisfaction expressed or experienced by individuals about their own physical, mental, and social situation. This personal evaluation of an individual’s own quality of life is an essential component of patient preferences, as we have explained in Topic Two. In this sense, ethical decisions about quality of life are based upon the ethics of personal autonomy: people make and express their own evaluation of the quality of their own life.
EXAMPLE I. A 27-year-old gymnastics instructor who is paralyzed because of a cervical spinal cord lesion may say, “My life isn’t as bad as it looks to you. I’ve come to terms with my loss and have discovered the joys of intellectual life.”
EXAMPLE II. A 68-year-old artist who is a diabetic with a 30-year history of Type II diabetes now faces blindness and multiple amputations. She says, “I wonder if I can endure a life of such poor quality?”
2. The phrase “quality of life” may also refer to an observer’s evaluation of someone else’s experiences of personal life. Quality of life, understood in this sense, produces many of the ethical problems explored in this chapter.
EXAMPLE III. A parent says of a 29-year-old cognitively impaired son with an IQ score of 40, “He used to seem so happy, but now he’s become so restless and difficult. What kind of quality of life does he have?”
EXAMPLE IV. An 83-year-old woman with advanced dementia is bedridden and tube fed. An intern asks in morning conference, “I wonder what quality of life, if any, she is experiencing?”
COMMENT. Reference to quality of life in a clinical discussion is natural and necessary. Still, because the phrase can be used in so many ways, its use can cause confusion. Several points may dispel the confusion.
The judgment of poor quality of life may be made by the one who lives the life (personal evaluation) or by an observer (observer evaluation). It often happens that lives considered by observers to be of poor quality are considered satisfactory or at least tolerable by the one living that life. Human beings are amazingly adaptive. They can make the best of the options available. For example, the quadriplegic gymnastics instructor may be a person of extraordinary motivation; the blind artist may enjoy a vivid imagination; the developmentally disabled person may enjoy games and interaction with others. Thus, if patients are able to evaluate and express their own quality of life, observers should not presume to judge but should seek the patients’ personal evaluation. Similarly, when the person’s own evaluation is not or cannot be known, clinicians or others should be extremely cautious in applying their own values.
Poor quality of life might mean, in general, that the sufferer’s experiences fall below some standard that the observer considers desirable. The observer, for example, may highly prize intellectual life, athletic prowess, or youthful vigor. But in each case, the experience of the sufferer may be pain, loss of mobility, presence of multiple debilitating health problems, loss of mental capacity and of the enjoyment of human interaction, loss of joy in life, aging, and so on. Each of these may have a different significance for the one who experiences them contrasted to an observer’s evaluation.
Evaluation of the quality of life, like life itself, may change with time. The artist’s concern may be the result of a discouragement that resolves as she discovers her future possibilities; the gymnastics instructor may later become deeply depressed. Often, clinicians see a patient when their quality of life is most compromised by trauma or sickness. Neither patients nor clinicians should make momentous decisions on the basis of possibly transitory conditions.
The evaluation of observers may reflect bias and prejudice. For example, the opinion that persons with developmental disabilities have “poor quality of life” may reflect a cultural bias in favor of intelligence and productivity. Prejudice may incline some people to judge that persons of a certain ethnic origin, social status, or sexual preference cannot possibly have good quality of life. Such prejudices must be acknowledged and, particularly in clinical care, be overcome.
The evaluation of quality of life, both by the one experiencing it and by observers, may reflect such social or economic conditions as homelessness, the unavailability of home care, or rehabilitation, or special education. These obstacles, while very real, can often be overcome by planning and effort on the part of those caring for such patients.
EXAMPLE V. Dax Cowart, whose case was made into a vivid film that is often shown in bioethics courses, was very badly burned in an explosion. He sustained a long, painful treatment and rehabilitation. He believed that his disabilities—blindness, disfigurement, and physical limitations—would make his life intolerable and not worth living. He refused treatments for infection and cosmetic surgery, and expressed the desire to die. He assessed his future quality of life as not worth living. Later, Dax revised his earlier assessment as he gradually overcame depression. He learned to appreciate mental activities, to enjoy social interaction, and to cope with his frustrations. He became a lecturer about his own story and an advocate for patients’ rights and personal autonomy. He graduated from law school, passed the Texas Bar, and practiced law. He deals daily with his disabilities, but he has achieved a quality of life that he could not previously have imagined. He still affirms, despite his achievements, that he should not have been deprived of the right to refuse treatment. In addition to Dax’s personal assessment, the physicians, surgeons, and nurses who cared for him offered observer assessments that were more optimistic than Dax’s. They had seen badly burned patients recover to an acceptable quality of life despite their disabilities. The story of Dax Cowart vividly portrays the importance of quality of life as well as the difficulty of applying differing and varying judgments of quality of life in clinical decision-making.
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3.0.6 Question Two—On What Grounds Can Anyone Judge That Some Quality of Life Would be Undesirable for a Patient Who Cannot Make or Express Such a Judgment?
The considerations stated in Section 2.4 are all relevant to this question. That section stated that when preferences of the patient are not known, surrogate decision makers are held to make judgments that serve “the best interests of the patient.” This idea of “best interest” is particularly relevant to our topic of quality of life.
The concept of best interest is drawn from the law, where it is commonly applied in cases of child custody: which custodial arrangement will best foster the healthy maturing of the child? In clinical medicine the concept is most often encountered in surrogate decisions about seriously ill incompetent persons whose prospects for recovery to health are remote. The first step in understanding how to apply this concept is to reflect on the interests which all humans seem to share. It can be presumed that all humans have an interest in being alive, being capable of understanding and communicating their thoughts and feelings, being able to control and direct their lives, being free from pain and suffering, and being able to attain desired satisfactions. It can be presumed that all humans would choose to avoid loss of these abilities. Best interests can be understood as the set of elements that make up quality of life, as we have described it above (see Section 3.0.2).
These general presumptions must be adapted to individual cases. What counts as an interest should be designated, as much as possible, from the viewpoint of the one for whom the judgment is being made. The interests common to competent, mature persons may not even occur to persons who are immature or who have diminished understanding and judgment. Still, they have interests in personal values suited to their conditions. Surrogate decision makers should attempt, as much as possible, to view the world through the eyes of such persons rather than their own. Each situation in which these presumptions are challenged calls for close ethical evaluation. Critical assessment also consists in scrutinizing societally shared values for prejudice, discrimination, misinformation, and stereotyping.
3.1 DIVERGENT EVALUATIONS OF QUALITY OF LIFE
Because evaluation of quality of life is so subjective, observers will rate certain forms of living quite differently. This diversity gives rise to several common major problems in clinical ethics: (1) lack of understanding about the patient’s own values, (2) divergence between physicians’ assessment of their patients’ quality of life and the assessments made by patients themselves, (3) bias and discrimination that negatively affect the physician’s dedication to the patient’s welfare, and (4) the introduction of social worth criteria into quality-of-life judgments.
Studies have shown that physicians consistently rate their patient’s quality of life lower than do the patients themselves. In one study, physicians and patients were asked independently to evaluate living with certain chronic conditions, such as arthritis, ischemic heart disease, chronic pulmonary disease, and cancer. Physicians judged life with these conditions to be less tolerable than did the patients who suffered from them. Physicians based their assessments primarily on disease conditions, whereas patients took into account nonmedical factors, such as interpersonal relationships, finances, and social conditions. Also, studies have shown that clinicians’ quality-of-life assessments strongly influence clinical decisions such as those about resuscitation or forgoing life support.
EXAMPLE. A 62-year-old man who had a brain stem stroke is disoriented and incapacitated. He is also diagnosed with uremia secondary to obstructive nephropathy. His physician believes that uremia is a peaceful way to die, because the disabilities from the stroke could be very distressing to the patient. The physician suggests to the patient’s surrogate that it may be in the patient’s best interest to forgo surgery to relieve the obstruction. The surrogate chooses surgical treatment. The patient recovers and lives an additional 10 months with satisfactory quality of life until shortly before his death.
COMMENT. This sort of divergence in evaluation can lead to serious misjudgments about the appropriateness of therapy. It is essential that physicians discuss the issue of quality of life with the patient and/or the surrogate and attempt to determine as explicitly as possible the values held by the patient. They should also acknowledge that even though their evaluations may derive from long clinical experience, they also reflect personal values that might not be shared by the patient. The phrase “if this were me” (so called Golden Rule reasoning “do unto others as you would have them do unto you”) fails to take account of the patient’s values and thus is misleading. Physicians should determine the best interests of competent patients by discussing quality-of-life options with them. If patients lack decision-making capacity, discussions with authorized surrogates are essential.
3.1.1 Question Three—Are There Biases That Might Prejudice the Provider’s Evaluation of the Patient’s Quality of Life?
One of the important ethical tenets of medicine is that the sick should be cared for regardless of race, religion, gender, or nationality. Individual physicians, however, may have beliefs and values that lead to biased and discriminatory judgments against certain persons or classes of persons. These judgments may affect clinical decisions.
1. Racial bias. The history of American medicine is stained by discrimination against African Americans, Native Americans, and other ethnic groups. Today these biases may be less explicit but still present: many studies reveal that racial and cultural minorities receive less care, lower quality of care, contributing to disparities in health status. It is ethically important that these biases be identified and eliminated from clinical decisions.
2. Bias against the elderly and the disabled. Studies have revealed that many physicians, particularly younger ones, are biased against elderly and disabled patients. They are reluctant to deal with them and sometimes make prejudicial judgments about them.
CASE. A 92-year-old woman is brought unconscious to the emergency department (ED). On examination, she is unresponsive, dehydrated, and hypotensive. She is also found to have a urinary tract infection and pulmonary infiltrates, possibly caused by aspiration. The ED resident believes she has sepsis from a urinary tract source but wonders whether to start antibiotics and fluid resuscitation because of her advanced age. The attending physician orders treatment. On recovery, the patient returns to her previous rather vigorous and alert quality of life, which had not been known to the treating ED physicians.
COMMENT. Treatment decisions should be based on medical need and patient preferences. Discrimination against persons on the basis of their chronological age is ethically wrong. Chronological age is only relevant to a clinical decision when it figures in an evidence-based judgment about a patient’s likely response to an intervention. For example, persons older than 75 years, regardless of their functional status, are not good candidates for bone marrow transplantation.
3. Lifestyle bias. Studies have revealed that physicians are no more free from prejudices than is the general population. Lifestyles such as vagrancy, or diseases such as alcohol or substance abuse may evoke negative attitudes or discomfort in the provider. These biases may, at times, affect clinical judgment, even quite unconsciously.
4. Gender bias. Gender bias exists, overtly or covertly, throughout our society. Prejudices often discount the intelligence of women and their autonomy in caring for their own health. In health care, studies demonstrate that male physicians tend to discount women’s health complaints and that research protocols have been often designed in ways that fail to appropriately evaluate treatments for women (IRBs must now assure that women are appropriately included as mandated by the NIH Revitalization Act of 1993). Another form of gender bias is associated with gender change or transgender choice which may evoke disbelief and repugnance.
5. Social worth. A social worth evaluation counts persons who are productive, prominent, engaged, and creative as more valuable than persons who lack those characteristics. Social worth judgments may be confused with quality-of-life judgments. While social worth judgments may be necessary for many social functions, they have little place in clinical decisions. Clinicians should not provide differential care to persons of social worth because of their presumed contribution to society except in most unusual circumstances. Examples of such circumstances are discussed in Section 4.5.
RECOMMENDATION. In general, social worth criteria are not relevant to diagnosis and treatment of patients. Quality of life is about a particular patient’s life as they experience it, not about his or her social status, importance, or productivity. Patients should not be provided or refused treatment based on social worth. It is not the physician’s prerogative to make such judgments in the context of providing medical treatment. Criminals, addicts, and terrorists should be treated in relation to their medical need, not their social worth. The special features of triage decisions will be treated in Section 4.5.3.
In Section 2.5, several patients were described whose quality of life made it difficult to care for them. Ms. Cope was an uncooperative and unpleasant alcoholic. Another patient was an abusive drug addict. Health care providers may find such patients exasperating, disagreeable, and even repugnant. This reaction may distort clinical decisions about such patients and affect the quality of care provided to them.
EXAMPLE. Mr. C.D. is a homeless man who inhabits building excavations. He is filthy, foul-mouthed, and, at times, violent and disruptive. He appears quite regularly at the hospital in need of care for pneumonia, frostbite, delirium tremens, and so forth. He is brought to the emergency department for the second time in a month with bleeding esophageal varices. At morning report, one of the house officers asks whether Mr. C.D.’s quality of life should disqualify him from treatment.
COMMENT. Mr. C.D.’s lifestyle should not preclude physicians from attending to his medical needs. Particular aspects of that lifestyle, such as ability to follow a treatment regimen, should be taken into consideration in developing a treatment plan. He does, however, impose certain burdens on his providers and on society that may be relevant to judgments about his care. This is a contextual factor, considered in Topic Four.
Persons whose aptitudes are limited as a result of developmental or cognitive disability are sometimes objects of discrimination. Given the range of possibilities for social intercourse, intellectual achievement, personal accomplishment, and productivity open to most human beings, the lives of these persons may seem severely restricted and their lives can be described as different in quality from those without those disabilities. When decisions about medical care are made for such persons, is such a different quality of life ever a relevant consideration?
EXAMPLE. Joseph Saikewicz was a 67-year-old man who had been institutionalized for severe developmental disability since he was one year old. His mental age was estimated at less than the 3-year-old level, and his IQ score was recorded as 10. He develops acute myelogenous leukemia. His guardian says, “His life is of such poor quality. Why should we try to extend it?”
COMMENT. The Massachusetts Supreme Court approved (after his death) a decision, made by his guardians, not to treat Joseph Saikewicz with chemotherapy. The court distinguished between general quality of life of developmentally disabled persons, which it did not consider relevant, and the specific quality of life that Joseph Saikewicz “was likely to experience” if he had been treated with chemotherapy. Speaking of the continued state of pain and disorientation likely to result from chemotherapy, the court said, “he would have experienced fear without the understanding from which other patients draw strength.” The court considered this distinction to be ethically justified because it directed attention to the quality of life as experienced by the patient and away from generalities about the quality of life typical of persons with profound mental disability. It attempted to focus on Mr. Saikewicz and his experiences. It is ethically dangerous to decide to withhold medical treatment from an individual because that individual belongs to a class of disabled persons. Such decisions look more to the burden these persons place on society than to the burden that disability imposes on the persons themselves. Seeing persons only as class members for the purpose of medical treatment starts a process in which classes of “undesirables” grow increasingly wider and include more and more persons who are judged “burdens to themselves and others.” This can lead to invidious discrimination. Quality-of-life assessments should focus on the quality of the life being lived by a particular patient as in Joseph Saikewicz’s case.
The occurrence of Alzheimer disease (AD) or any other dementing disease is a tragedy for patients and families. These medical conditions, which are currently irreversible, entail serious deterioration in quality of life as perceived by the patient and by others. They pose challenges to health care practitioners. Some of those challenges are ethical in nature: truthfully informing the patient of the diagnosis as well as imposing limits on lifestyle, such as driving, deciding about living arrangements, use of restraints, and treatment at the end of life. In recent years, improvements in the understanding of these conditions and in treatment of persons suffering from them have diminished some burdens. In general, the ethical approach to such conditions calls for the least restrictive measures compatible with the safety and comfort of the patient.
CASE. Mr. R.P., an accomplished cabinetmaker and a congenial, loving person, begins to show the characteristic signs of AD at the age of 66 years. He slips rapidly into extreme forgetfulness and confusion, accompanied by outbreaks of anger, particularly at his wife of 40 years. His physician performs tests to exclude other possible causes. His sons, who are partners in his business, find it necessary to prevent him from coming to the factory and from entering his home workshop, which infuriates him. His physician treats him with donepezil and instructs the family on nonpharmacologic measures to deal with the aggressive outbursts. If the behavior poses an imminent threat to the patient or to others, the physician will add citalopram. If the aggression becomes severe, perhaps the physician will add a low dose of an atypical antipsychotic medication, such as Seroquel.
COMMENT. Although particular ethical quandaries are posed by patients with AD, the most general problem is the maintenance of their dignity, independence, sense of self-respect, and connection with their social and physical environment. These qualities are often seriously undermined by well-meaning care providers and by restrictive arrangements that often exacerbate the problems (eg, restraints have been shown to accelerate physical and psychological deterioration and to increase sedative drug use). Many techniques have been devised to support the dignity of even badly affected patients and have been shown to improve their quality of life; advice from clinicians experienced in care of such patients is helpful. Medication may have positive effects on some problems commonly associated with AD, such as depression, delusions, and aggressive behavior. However, no drug treatment has yet been shown to restore lost cognitive function.
RECOMMENDATION. In Mr. R.P.’s case, use of currently FDA-approved antidementia medications, such as donepezil, may stabilize the condition in earlier stages of AD. This effect generally is not lasting and the patient will return to progressive dementia. Thus, providers and family should seriously consider whether a transitory and slight improvement in mental status will truly improve the patient’s quality of life. The patient will slip again into dementia, repeating the distressing experience of loss of capacity. Also, antidementia medicines may have unpleasant side effects, such as nausea, diarrhea, and insomnia, that might be particularly distressing to a person with diminished mental function. The medical intervention that, in principle, may be medically indicated, as well as desired by the surrogates, may have a detrimental effect on the overall quality of life of the patient. Thus, quality of life is a relevant ethical consideration in calculating the risk/benefit for medical intervention.
3.1.5 Question Four—What Ethical Issues Arise About Improving or Enhancing a Patient’s Quality of Life?
Medicine improves quality of life by remedying the effects of illness. We call attention to four areas of medicine in which efforts to improve quality of life raise ethical issues: (1) rehabilitation, (2) palliative care, (3) treatment of chronic pain, and (4) enhancement.
Rehabilitation medicine aims to improve quality of life, as demonstrated by restoration of mobility, ability to work, and independent living. The autonomy of the patient is a primary goal, and the preferences and values of the patient define the goal. The cooperation of the patient is crucial. In this setting, several special ethical problems predominate. These problems sometimes arise because the patient’s preferences and judgment of personal quality of life may conflict with the physiatrist’s medical knowledge and values.
EXAMPLE. A program of rehabilitation is recommended to the gymnastics instructor described in Section 3.0.5. He initially refuses to participate, stating, “I’m crippled and the quality of my life is so bad that it can’t be improved.” The rehabilitation team has a different view of his possibilities. They invite him to continue to discuss the issues and propose some short-term goals.
COMMENT. This case could be discussed in Topic Two, because it is an instance of problems arising around patient preferences. Quality of life is central, however, to the physiatrist’s evaluation of whether the patient’s wishes should be honored. Rehabilitation medicine stresses an educational framework for treatment: persons are taught skills that help them to live within the limits of inevitable disabilities. In this case, the principal problem is not the physical one of improving mobility. It is the educational problem of leading this depressed patient to a different perception of the quality of his life, in which he can find satisfaction.
Palliative care sometimes refers to any medical intervention that alleviates the intensity of pain. However, it is a mistake to define palliative care only in terms of pain relief. The specialty of palliative care medicine is defined as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification, assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” (World Health Organization, .) Relief of pain is a medical goal sought by medication, surgery, and physical therapy. However, specialists in palliative care medicine advise that concentration on the physiologic components of pain through pharmacologic or surgical interventions, without equal attention to the psychological, social, and spiritual, may bring little relief. Even if relief is achieved in the physiologic sense, other important ethical responsibilities may be left unfulfilled, for example, aiding patients to deal with their impending death and its effect on others. Palliative care medicine utilizes methods to achieve these global aims. Physicians should make themselves aware of the methods of palliative care and, when appropriate, seek assistance from palliative care specialists.
Physicians can now be board certified in palliative care medicine. Many hospitals have established palliative care services. It is not uncommon for palliative care to be called to consult on cases where there are ethical problems. Providers and family may be struggling with a decision to forgo life-sustaining treatment; palliative care consultants, accomplished in managing the psychophysical aspects of terminal illness, may help to resolve ethical problems. In addition, by reducing a patient’s distressing symptoms, palliative care specialists may improve not only quality of life but length of life. Particular ethical issues in palliation at end of life are discussed in Section 3.4.
Ethical consultants may be called in cases where palliative care is needed. The palliative care consultant may recommend approaches that frame the view of the ethical question. The tragic words of a physician, “There is nothing more we can do” may now often be replaced by “we have many effective ways to help.” These two clinical specialties, palliative care and clinical ethics, offer distinctive, often complementary competencies and can collaborate in optimizing the care of the patient.
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Pain relief is a constant and important medical activity. Like all other medical interventions, pain relief should be based on medical indications and on patient preferences. However, pain relief poses particular problems. Patients may complain of pain without any apparent physical cause. Objective physical causes of pain are often difficult to discern. Care of these patients can be difficult.
CASE. Mr. T.W., a 42-year-old insurance broker, visits his physician, complaining of severe, diffuse pain, which, he said, had been “creeping up” on him for several months. Now, it is incessant, moves about the body, from upper back and shoulders to lower back and lower limbs. Standing for any length of time is excruciating. His physician does a thorough physical examination, prescribes several imaging tests, and after negative results, recommends a neurology consultation, which is also unproductive. A variety of pain medications are prescribed, with little relief. Mr. T.W.’s pain continues to the point of disability. The physician finally tells him frankly, “We can’t find anything wrong with you. Your pain is psychogenic; that is, it comes from the mind, not the body. You really should see a psychiatrist.”
COMMENT. Chronic pain often poses a difficult medical problem because the specific organic cause is elusive. It also poses an ethical problem because many physicians, once they suspect a psychogenic origin, tend to dismiss the patient as a “somatizer” or a malingerer. Patients will interpret comments such as that of the doctor in this case as an accusation that their pain is unreal or imagined. Even when a significant psychogenic component to pain is present, the pain is real. Instead of dismissing the patient with such a remark, physicians should provide symptomatic relief and consult with experts in pain management and in physical medicine. Psychological assistance should be recommended as assistance in coping with pain, rather than as a substitute for medical management. If the patient requests certification for workman’s compensation, the physician should respond truthfully. If, after adequate workup and appropriate therapeutic efforts, complaints of pain persist, and if the physician has no well-grounded suspicion of malingering, it can be truly said that the patient experiences chronic, disabling pain. The forms that must be filled out for certification sometimes make it difficult to express the truth because they often require evidence of a physical cause for pain. In filling out such forms, physicians should provide honest and thorough clinical information.
