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Your care may involve ethical concerns that cannot be resolved solely by scientific expertise and clinical experience, but rather require choosing among conflicting responsibilities, values, and principles. As an example, for a person with dementing illness the desirable goals of safety and independence may be incompatible. Moving into an institution would increase safety but reduce independence; staying in the home maintains independence but at an increased risk of injury. A number of guidelines have been written that address such dilemmas and have clarified the terminology, analyzed the justifications for different positions, and suggested various approaches. Despite these guidelines, it is often a difficult task to reach decisions in individual circumstances.
Medical decisions should be made by capable, informed patients in concert with their physicians, based on the ethical principle of respect for their autonomy. Except for extraordinary circumstances, you have the legal right to make decisions about your body and about your medical care. The doctrine of informed consent follows from our societal respect for autonomy and self-determination.
The legal doctrine of informed consent states that you have the power to choose among medically feasible plans for your care. Informed consent requires effective communication between you and your doctor. However, in order for you to make informed choices, you need to discuss with your doctor your diagnosis and the outlook, the nature of the recommended test or treatments, the various alternatives, the risks and benefits of each alternative, and the likely outcomes. Both of you should share your questions and concerns, and repeat these discussions as often as needed.
Informed consent does not mean that you can dictate your care. If a person requests tests or treatments that the medical profession considers useless or harmful, physicians have no obligation to comply. They do have a duty to use their technical expertise to benefit you, or at least not to harm you. When disagreements of this kind occur, further discussion is needed to clarify the concerns and to reach a mutually acceptable decision.
The process of informed consent is only meaningful if you have the capacity to make informed decisions. Strictly speaking, all adults are presumed to be competent to make decisions at a specific age (usually 18 years), and this presumption continues until the court determines that an individual is incompetent. Practically speaking, however, physicians are sometimes asked to evaluate a person's decision-making capacity. If a physician believes that a person lacks the ability to make informed decisions about medical care, that person is deemed "incapable." This determination is significant because decisions will then be made by someone other than the patient. The term incompetence refers to a judgment by a court of law.
A process called a "sliding scale" has been recommended for assessing a person's capacity to make medical decisions. A sliding scale affords patients of questionable capacity more protection when the potential harm resulting from the decisions is greater. Therefore, except in the case of an unconscious or a severely demented person, it makes more sense to speak in terms of capacity for specific tasks, "decision-specific" capacity, than capacity in a general sense. You may be capable of making decisions about medical care, but not about finances, or vice versa.
Your ability to make medical decisions may fluctuate. For example, a person with delirium may be mentally clear in the morning but confused in the evening. Imagine having a high fever that clouds your thinking and disorients you. Choices that are made when you are capable of making informed decisions should be recorded and respected. If possible, decisions should be deferred until you have regained your decision-making capacity.
Your capacity to make decisions about medical care requires that you realize that there are choices, the nature of the recommended care, the alternatives, the risks and benefits of each, and the likely consequences.
One frequent error physicians make regarding decision-making capacity is their overemphasis on mental status testing. Often, when the capacity of a person is questionable, a mental status examination is administered. Even if you perform poorly on a mental status test or have impaired memory, you may still have the capacity to make informed decisions. It is essential to assess very directly your understanding of the risks, benefits, and consequences of the alternative plans of care. Another mistake is to equate decision-making capacity with rational decisions. Requiring rationality would disqualify people who make highly personal or unconventional decisions. As one court declared in a case that involved the refusal of treatment, beliefs that are "unwise, foolish, or ridiculous" do not render a person incompetent.
If you are unable to participate in the decision-making process, someone will have to make decisions on your behalf. The decisionmaking hierarchy for surrogate decisions places your expressed wishes as paramount. These wishes can take the form of advanced directives, living wills, and durable powers of attorney for health care. Expressed wishes take precedence over substituted judgments or acting in your best interest.
Whenever possible, your physician should respect the informed choices that you have expressed while you were still capable of making decisions. Following advance directives demonstrates respect for your individuality and self-determination and is preferable to following the choices of others, such as family members or other caregivers unless that is your wish.
Your conversations with relatives, friends, or health care workers--the most common form of advance directives--are valuable but should be documented carefully so that the information is available later. Since a few state courts have ruled that oral statements may be legally challenged if they are not sufficiently explicit, and since written statements clearly reflect your intention to direct future health care, you should give written advance directives whenever possible.
Living Wills. Laws that authorize living wills (also called natural death, death with dignity, or right-to-die laws) have been enacted in almost all states. Some states that do not have living will statutes grant individuals comparable rights under court opinions. Generally, these laws allow you to direct doctors to withhold or withdraw lifesustaining treatment if you become terminally ill or have another condition that is specified in the statute and are no longer capable of making decisions. In a few states, an individual may also appoint proxy decision makers. Legal immunity is given to caregivers who comply with the living will made in accordance with the statute.
Living wills, however, only apply to terminal illness and may not extend to severe dementia, severe stroke, or what is called a persistent vegetative state, where the person is in a form of coma. These are not considered terminal illnesses. Another important drawback of the living will is that an individual in some states is permitted to decline only treatments that "merely prolong the process of dying," a category that is difficult to define. Furthermore, many living will statutes do not allow the refusal of artificial feedings and hydration, although this restriction has been overturned in some state courts. Obviously, you need to be familiar with the laws in your state, because the specific provisions and procedural requirements vary.
Durable Power of Attorney for Health Care. Because it is more flexible and comprehensive than the living will, the durable power of attorney for health care is the preferred advance directive. It allows you to designate a surrogate, presumably a friend or relative, to make the medical decisions if you lose decision-making capacity. (While you are still capable, you give your own informed consent or refusal.) It is advisable for you to guide the surrogate, by indicating what types of treatment you would or would not want in a specific situation. Unlike most living wills, the durable power of attorney for health care can apply to all situations--not just terminal illness--in which the person is incapable of making decisions.
Problems with Advance Directives. Advance directives have limitations because you may not fully understand treatment options or appreciate the consequences of your choices. Advance directives may also be too vague to guide clinical decisions. For example, general statements rejecting "heroic treatments" do not indicate whether you want a particular treatment for a specific situation, such as antibiotics for pneumonia following a severe stroke. On the other hand very specific directives for future care may not be applicable to unanticipated circumstances. Furthermore, after expressing advance directives, people may change their minds without informing anyone, or medical circumstances may change as new or experimental therapies become available. You and your doctor can do a great deal to resolve these problems by discussing advance directives with each other.
Because most older people want to express their preferences regarding life-sustaining treatment, but few have done so, you and your physician should routinely share information on advance directives. A straightforward question to your doctor may open the topic: "Can we talk about how decisions will be made for my medical care in case I am too sick to talk to you directly?"
To improve communication, which can resolve many problems posed by advance directives, you should ask your physician about situations that commonly develop in your particular illness or condition. Ask clarifying questions about the various treatments and treatment options. In addition, check to make sure that the directives are taken seriously, including the designation of a surrogate decision maker as well as an indication of how much discretion that surrogate should be allowed and how you will make known any changes of mind. It is also important for you to have ongoing discussions about these issues with family members and friends.
Words such as heroic and extraordinary care are frequently, although not wisely, used in discussions about life-sustaining treatment. Highly technical, invasive, or expensive treatments like dialysis or mechanical ventilation are sometimes regarded as heroic or extraordinary, as opposed to "ordinary" care like antibiotics and intravenous fluids. These distinctions, however, are ambiguous, confusing, and best avoided, since every treatment has benefits and drawbacks that need to be evaluated for each individual. Decisions should not be based on the nature of the treatment but rather on whether the benefits to you outweigh any disadvantages.
Choosing a Surrogate Decision Maker. Traditionally, family members act as surrogates for incapacitated individuals, because presumably they best know the person's preferences and will act as an advocate. Family members are normally consulted by the physician; however, the physician may sometimes decide that decisions by family members are questionable because of conflicting personalities, values, or interests. In addition, relatives may be estranged or unwilling to make decisions or may disagree among themselves. In other cases, elderly people have no surviving relatives.
When there are no relatives or friends to represent the person, it may be that your physician is the next best choice as surrogate decision maker. The physician will understand the medical procedures and your condition. Your lawyer is another possibility. But consider that the courts are cumbersome, expensive, and slow, and the adversarial legal system and media publicity may polarize families and doctors, or lead to medically unrealistic decisions.
When incapacitated individuals have not given advance directives or appointed a surrogate, ethicists have recommended basing decisions on the best interest of the person by weighing the benefits and burdens of treatment. This is, however, a complicated and often controversial process that requires addressing such factors as the person's pain and suffering, safety, and loss of independence, privacy, and dignity. Well-meaning third parties may disagree on how to weigh these factors, which are often summarized in the ambiguous phrase "quality of life." Because individuals commonly assess their own quality of life in making medical decisions, judgments that follow the person's values are appropriate. Quality-of-life judgments that follow the assessments of other people are prone to cause problems, since they may be biased or discriminatory, particularly if social worth or economic productivity is considered. For example, life situations that would be intolerable to young, healthy people may be acceptable to older, debilitated individuals, and vice versa.
Courts have relied on the doctrine or the legal dictum of substituted judgment to link their decisions to the preferences of the individual. Searching for the person's preferences is always an appropriate first step, but in many cases the person's wishes are unknown or unclear. Thus, in reality many decisions in clinical practice and legal rulings are based on an assessment of the person's best interest.
Doctors have a duty to use their expertise for the benefit of the people in their care, although this duty may conflict with the duty to respect refusals of care by informed capable individuals. You retain the right to refuse treatments that your doctor considers to be in your best interest. Frank discussions can improve your mutual understanding of risks, benefits, and underlying beliefs.
Preventing harm to an individual is frequently an issue in decisions regarding nursing home placement. Believing that living independently is too unsafe for a person, family members or caregivers may seek to override one's desire to remain at home. It is appropriate to try and arrange in-home supportive services first, but the crucial ethical issue is whether an older person is capable of making an informed decision about where to live; if so, his or her decision should be respected, even if others believe that it is unwise or foolish and even if it puts that person at greater risk.
In cases of possible abuse, the duty to protect older people justifies some interventions, since they may be unable to protect themselves, not know how to get help, fear retaliation, or be ashamed to admit the abuse. A doctor who suspects abuse has the ethical duty to intervene to determine if the victim has the capacity to make decisions, is informed, and is not coerced. Some states require caregivers to report suspected abuse to a protective service agency. If the person is severely incapacitated, support interventions may be appropriate, such as installing home care services, counseling the abusive caregiver, or moving the older person to another residence. Family members can sometimes feel overwhelmed by their responsibilities, lack caregiving skills, have no respite, and become abusive. Supportive services should be offered, although capable individuals may refuse the assistance. If a person is not capable and the abuse seems clear, the physician must consider a report to adult protective service agencies or a petition to the court for a new guardian.
Some older people cannot manage their finances or provide themselves with food and shelter. Sometimes relatives or friends make informal arrangements to help these individuals. In other cases, the person, when he or she was capable, had executed a durable power of attorney that appointed another person to handle his or her affairs. In still other cases, it is necessary to ask the courts to appoint a guardian, as when property must be managed or sold to pay for long-term care.
All states allow the courts to establish limited guardianships (sometimes called conservatorships) and unlimited guardianships (called committeeships). A limited guardianship empowers the guardian to act in a specific area that corresponds to the areas of the person's life in which he can no longer function as determined by the court. An unlimited guardianship strips the older person of all legal authority and permits the guardian to make all the decisions about the older person's life in matters that affect property, residence, medical care, and personal relationships. Since an unlimited guardianship requires that the court find that the person is incompetent (this legal judgment requires that the person receive the protection generally afforded to a child), most states have a statutory preference for limited guardianships.
In guardianship hearings, petitioners--usually the relatives, but possibly social service agencies or even a health care provider--must demonstrate that the person is no longer able to manage her affairs and provide for her needs safely. If the person is found incompetent, the court appoints a guardian.
Nursing home residents may need additional safeguards when decisions about life-sustaining treatments are made. They may not have close relatives to act as their advocates, the physician-patient relationship may be superficial, and there are fewer caregivers involved in the decision making in this setting than there are in hospitals. In addition, substandard care is sometimes a problem. Whether to transfer nursing home residents to a hospital when their condition worsens is a common dilemma, since for many of the residents the goal of treatment may be to relieve discomfort rather than to prolong life. If individuals or their surrogates decline the transfer to a hospital, their wishes should be respected. It should be a routine part of nursing home care to discuss these decisions well in advance.
Advances in medical technology have created medical dilemmas, because not all of the goals of care can be achieved. For example, in a seriously ill person a sudden worsening or complication of the person's condition may be reversible, but restoring function and improving the underlying disease may be impossible. In such a context, life-sustaining treatment may be appropriately withheld in several situations.
The physician has no obligation to provide treatment if there is no specific medical rationale for it, if it has proven ineffective for the person, if the person is unconscious and will likely die in a matter of hours or days even if the treatment is given, or if the expected survival is virtually zero. The doctor's discretion in these matters may vary widely given the range of jurisdiction across the nation.
An informed person who is capable of making medical decisions may refuse life-sustaining treatment, such as cardiopulmonary resuscitation, intensive care, transfusions, antibiotics, and artificial feedings. An informed refusal should be respected, even if the person's life may be shortened as a consequence and even if the person is not terminally ill or in a coma. As for people who are not capable of making decisions, two questions need to be considered: What standard should be used? And who should make the decisions?
Cardiopulmonary resuscitation (CPR) may be an effective treatment for unexpected sudden death, but it is not effective for people whose death is expected. The outcomes after CPR are generally poor for older people, because of serious illnesses and decreased functional status. Less than 10 percent of people over 70 are discharged from the hospital alive after CPR. Few data exist on outcomes after CPR in nursing homes. In addition, many long-term care facilities do not have the technical capability to perform CPR effectively.
When CPR is medically futile and thus ethically inappropriate, a patient should not be offered the choice between CPR or no CPR, but instead the physician should explain why CPR is not indicated, and a do-not-resuscitate order is generally written. In some settings, however, a statute may require that physicians offer the option of CPR even when it would be futile.
When CPR might be of benefit, the doctor must make sure that all concerned appreciate the fact that the likelihood of survival is low even if CPR is administered. Many people with chronic illnesses do not want CPR, and their informed refusal should be respected. The attending physician should also indicate the reasons for the order and plans for further care in the medical record.
Strictly speaking, a do-not-resuscitate order means that only CPR will not be performed; other treatments may still be given. Discussions with your doctor about do-not-resuscitate orders are excellent opportunities to review the total plan of care, including supportive care and appropriate treatments that would be continued after the do-not-resuscitate order takes effect.
Strange emotional feelings are a natural part of decisions to withdraw or withhold care. We are torn between our impending sense of loss of our loved ones and our desire that their suffering be relieved and their dignity maintained. When a treatment has proven ineffective, there is little point in continuing it. Often, a distinction is made between stopping treatment and not starting it in the first place (for example, some people are willing to withhold mechanical ventilation, but are reluctant to discontinue it once started), although logically, ethically, and legally, there is no difference. If you feel that there is an important emotional difference between stopping a treatment and not starting one, you should explicitly discuss this with your physician.
In severely demented or debilitated individuals who cannot or will not eat, artificial nutrition and hydration are ethically and legally controversial. The feeding of helpless people is laden with symbolic and emotional significance, and it is possible that these individuals may suffer hunger or thirst if tube feedings are withheld. Tube feedings clearly benefit people if they provide the time to treat underlying conditions or to clarify the situation, and if the person wants the feedings.
The benefits are less clear in severely demented individuals who consistently refuse feedings offered by hand or who are unlikely to suffer hunger or thirst. Tube feedings may also have adverse consequences, such as pneumonia if the feedings are aspirated into the lungs. Moreover, because individuals often pull out the feeding tubes, demented individuals on tube feedings are often restrained, thereby compromising what little dignity and independence they retain. This causes a special problem because patients cannot comprehend how the treatment benefits them. Restraints are also difficult to reconcile with the goal of humane care. Sedation or "chemical restraints" might seem more acceptable on the surface, but they are also undignified and often associated with unacceptable side effects. Therefore, when a person pulls out a feeding tube, everyone involved should reconsider whether the feeding tube is appropriate. If so, other less obtrusive or more permanent measures, such as tubes placed in the stomach or intestine, should be considered. However, if the goal is to provide comfort, giving the person more direct attention and affection may be preferable to trying to increase the intake of nutrients.
Active euthanasia (mercy killing) is illegal. Requests for it generally arise because individuals suffer uncontrolled pain, demand more control over their care, or fear abandonment. Many terminally ill people who have requested euthanasia change their minds after symptoms of pain have been relieved. It is relevant to note that experiments with self-administered pain medications indicate that the feeling of control is central to a person's comfort.
There is great potential for abuse with active euthanasia, especially in a society that has a less than perfect history when it comes to protecting the vulnerable, disadvantaged, or disabled. Because of this, opponents assert that allowing voluntary euthanasia might all too easily lead to involuntary euthanasia of helpless people. Others feel that the administration of active euthanasia is incompatible with the role of physicians and may undermine other people's trust in their doctors. However, in exceptional cases in which severe symptoms can be relieved only by causing unconsciousness, some people believe that it may be more compassionate to carry out a person's request for active euthanasia than to have the person continue an existence that is degrading. Active euthanasia should be distinguished from the withholding or withdrawal of treatment (which is sometimes termed "allowing to die" or "passive euthanasia"). Thus, the concern that active euthanasia is unethical should not lead doctors to continue futile treatments or to reject requests by informed individuals to withhold treatment.
Statistically, elderly white men are at a greatly increased risk for suicide. Most suicides are impulsive acts that are not well thought out, so the person who seriously considers this act usually suffers from depression. Because individuals who are incapacitated by depression cannot make informed decisions, family and friends are quite likely to intervene and seek medical advice. Physicians have traditionally felt it their duty to intervene in order to prevent suicide.
For some people, however, suicide might be considered a rational choice, as, for example, in the case of those with widespread cancer who might have debilitating symptoms despite having received optimal treatment. Believing that a progressive illness of this type would be degrading and wishing to have control over their death, they might ask the physician how to end their life or request the medications with which to do so. These are matters of individual conscience. Many physicians believe that assisted rational suicide is unethical, for the same reasons that they oppose active euthanasia--they feel that there is a great danger of abuse, it is incompatible with the role of the physician, and it undermines a person's trust in doctors. In any case, in most states the law prohibits it.