The principle of respect for autonomy does not apply to people not in a position to act in an autonomous manner. This means that infants, suicidal people, and drug-dependent patients may be validly controlled on the grounds of beneficence to protect them from harm.1 Under the principle of beneficence, the nurse may legitimately restrain a patient from exercising his or her autonomy by trying to jump out a window.3 But people judged mentally incompetent are still capable of making autonomous choices about what they want to eat or what clothes they wish to wear.1
The constraint of a person’s autonomy is permissible when the person’s choices and actions infringe on the rights and welfare of others.8 Public health officials have detained patients with infectious tuberculosis to prevent spread of the disease.9 More controversial was the holding of more than 200 non-infectious people because they were noncompliant with treatment for periods of up to two years as late as 1993 in New York.9
The intentional limiting of patients’ autonomy “for their own good” is the definition of paternalism.5 This is the old-fashioned “doctor-knows-best” attitude of physician to patient. One form of paternalism is benevolent deception, in which the clinician purposely withholds information because, in his or her judgment, the information may be too upsetting for the patient.5 Physicians in the 1970s made unilateral decisions to not treat deformed newborns without consulting the parents because they thought they were saving the parents from the emotional burden of decision. But public outrage when this practice was exposed led to including parents and others in the decision-making process.4
Clinicians may use benevolent deception if they think patients wouldn’t want to know their diagnosis. But a number of studies have shown that patients do want to know the truth.10 Clinicians may refrain from telling patients difficult truths because they feel uncomfortable doing so. In response to this, some medical schools have started teaching students how to break bad news to patients.11 The Ethics in Medicine Web site at the University of Washington School of Medicine contains a six-step protocol titled “Breaking Bad News.” Its topic headings are How to Get Started, How to Find Out How Much the Patient Knows, Finding Out How Much the Patient Wants to Know, Sharing the Information, Responding to Patients’ Feelings, and Planning Follow-Through.11
Respect for patient autonomy is an important principle, but caregivers also have autonomy. When the Oregon physician-assisted suicide statute became law, nurses opposed to suicide on moral grounds were concerned about their ability to exercise their professional autonomy without abandoning their patient. In response, the Oregon Nurses Association drew up a policy clarifying the nurses’ rights and responsibilities under the law. The association’s White Paper on Assisted Suicide provides guidelines for ethically withdrawing from a case without abandoning the patient for nurses who do not want to be involved, as well as guidelines for nurses willing to care for the patient who is committing physician-assisted suicide.12
Although the principle of respect for autonomy is of major importance, other principles such as nonmaleficence, beneficence, and justice have as much or more weight, depending on the situation.1 The principle of nonmaleficence means the obligation to refrain from harm.1 If the nurse cannot bring about good for the patient, the nurse is bound by duty to at least avoid harm.5 Nonmaleficence affirms the need for the nurse to be competent in caring for patients and expresses nursing’s commitment to the protection of patients.
The standard of due care specifies the principle of nonmaleficence. Negligence is the departure from the standard of due care toward patients and includes intentionally imposing unreasonable risks as well as unintentionally imposing risks through carelessness.1 Nurses can be held morally and legally blameworthy if they fail to provide care that avoids or minimizes the risk of harm to patients.
Professional malpractice is negligence in which the standards of care have not been met.5 The nurses in Memorial Hospital vs. Darling were found negligent when Dorrence Darling’s broken leg became gangrenous and had to be amputated. By not reporting the condition of the cast and the physician’s negligence, the nurses had not prevented the patient’s harm, nor acted according to the principle of nonmaleficence.
The debate about forgoing life-sustaining treatment also falls within the category of nonmaleficence. Caregivers may view the act of withdrawing life-sustaining treatment as making them responsible for the patient’s death and therefore different from the act of never starting the life-sustaining treatment. Caregivers, patients, and families may worry about the distinction between withholding and withdrawing treatment because they think a therapy once begun cannot be stopped. But in some cases it is only after a treatment has been started that a proper diagnosis and prognosis can be made.1
Treatment that can be withheld can also be withdrawn. Patients or their surrogates have the right to forgo treatment at any time under the principle of respect for autonomy. Their decisions should be based on considerations of the burdens and benefits of treatment from the patient’s or surrogate’s standpoint. This is true for do-not-resuscitate orders, as well as other treatments.1
A DNR order, or “no code” order, means that cardiopulmonary resuscitation is not to be attempted. Only when a DNR order is written may CPR be omitted. Decisions for writing a DNR order are based on the patient’s preference, determinations of medical futility, and the patient’s quality of life.8 The presence of a DNR order does not imply the withdrawal of other types of care. Each treatment should be evaluated individually for appropriateness according to the burdens vs. benefits to the patient.
Patients who are unconscious or mentally incompetent but who completed an advance directive in the past can have their treatment wishes known through that document. There are two forms: living will and durable power of attorney for health care.5 A living will is a document that states the person’s desire to have life-sustaining treatment withheld or withdrawn if no reasonable expectation of recovery exists. The laws governing living wills vary from state to state. In some, the living will is in effect only if the patient is terminally ill and death is imminent.5 This can limit its practicality. A durable power of attorney for health care (DPAHC) is a statute passed by state legislatures that authorizes people to appoint a surrogate decision maker to make health care decisions for them if they become unable to do so. The surrogate named should be a person who knows the wishes of the patient and can express them to clinicians if the patient is unconscious or mentally incompetent.8
Some people tell their surrogate that if they are permanently unconscious or in a persistent vegetative state, they would not want to be kept alive with tubes. A persistent vegetative state is a loss of self-aware cognition in which wake and sleep cycles and other autonomic functions remain intact, lasting at least a month.2,8 This condition can occur after severe cerebral damage or develop gradually as the result of progressive dementia.8 Awakening from a vegetative state caused by a nontraumatic injury is rare after three months; awakening from one caused by trauma rarely occurs after 12 months.2
If an unconscious or mentally incompetent patient does not have an advance directive, his or her family or significant others must designate a surrogate decision maker. The patient’s closest family member is a good choice as surrogate if he or she is competent, has enough knowledge and information, is emotionally stable, is committed to the incompetent patient’s interests, and is free of conflicts of interest.1 In cases of conflicting judgments between family members or caregivers, a referral to the institution’s ethics committee can be made. Court should be the last resort.
The physician’s code of “do no harm” is a statement of nonmaleficence. But some treatments can be double-edged. Morphine given to relieve a terminally ill patient’s pain may suppress respirations and bring about death. As long as relief of pain, not the death of the patient, was the goal, providing adequate pain control for patients with terminal illness can be justified under the principle of double effect. The guiding elements of this principle are that the course chosen must be good, good must not follow as a consequence of a secondary harmful effect, harm must never be intended, and the good must outweigh the harm.5 Not giving terminally ill patients enough pain medication for fear of killing them has led to painful deaths for patients and is the stated reason behind citizens groups’ calls for physician-assisted suicide.13
Futile care is care that will not cure the underlying condition nor make the patient more comfortable. But the term futility has been used both to express value judgments about what is worth the effort as well as scientific judgments.1 Given the possibility of error in this judgment, caution should be used because clinicians are not obligated to provide futile treatment and are permitted to make the decision to forgo such a treatment unilaterally without discussion with patients or surrogates.2
Such decisions involve quality of life judgments. Treatment may justifiably be withheld or withdrawn in patients whose quality of life is so low that the treatment produces more harm than benefit for them. But justified criteria should be required in the evaluation of burdens and benefits so that arbitrary decisions that could threaten the rights of disabled patients are not made.2
Some people may decide that their quality of life is so diminished that they do not wish to live, and they ask their physician for help in dying. This may be because they are severely disabled or terminally ill. Physician-assisted suicide refers to the death that a mentally competent person chooses and causes by self-administering a medication that the physician prescribes but does not administer.8 Physician-assisted suicide is legal only in Oregon for those Oregon residents diagnosed as terminally ill. Physician-assisted suicide is distinct from euthanasia, in which the physician administers the medication to a requesting or unconscious patient.
The topics of physician-assisted suicide and euthanasia inevitably prompt discussion of the slippery slope. The slippery slope refers to the idea that acceptance of one act or step makes the next one more acceptable.8 Attitudes about respect for life can be altered by changes in public policy. If decision makers judge that certain newborns and elderly adults have burdensome lives or that their lives are of no value, this same argument can be made for other groups of frail and debilitated patients who pose financial burdens on their families and society.1
The principle of beneficence means that care providers have the obligation to promote the health and welfare of the patient, and not merely refrain from causing harm.5 Beneficence requires positive action. The principle of beneficence is a primary goal of nurses and other health care providers.
In some situations, the principle of respect for patient autonomy may conflict with the principle of beneficence. Health care professionals’ education and experience gives them the ability to determine the patient’s best interests. Patients may be justifiably detained if they are at risk of preventable harm, especially if the action will prevent the harm, if the benefits outweigh the harm, and if the least autonomy-restrictive method to reduce the risk is employed.1 People with dementia or those who are suicidal fall into this category.
The bioethical principle of justice means treating people fairly and equally. In health care, distributive justice means the fair and equitable distribution of health care resources within a community.1 People who are equals should receive an equal allocation of health care resources and have fair access to it. When dialysis machines were scarce in the 1960s, the committee that made allocation decisions based on “social worth” criteria was criticized as being unfair.
Just access means the ability of people to get the health care that they need. Medicare is an example of just access because it treats all seniors fairly and equally. Medicaid provides access to those who meet certain qualifications. The present U.S. health care system has been criticized as being unjust because of the many inequalities that exist in access and allocation. Financial barriers limit the access of some people to health insurance, and pre-existing conditions limit the access of others. Financially distressed hospitals often find ways to prevent the admission of patients with no money and no insurance.1
Just allocation. To be just, health care resources should be allocated fairly. Several methods for the fair apportionment of resources have been proposed. These include age-based rationing, such as not providing certain treatments and procedures for those over a certain age.1 A cost-effectiveness method measures dollars per quality-adjusted life years (QALYs) to define health benefits related to the costs of a specific medical intervention.14 Another method is rationing through priorities. The Oregon Health Plan is one example. It attempts to apply the principle of justice by providing a certain basic minimum of health care for all Oregon residents.5
Various groups can be disadvantaged in health care if their health problems receive less research and treatment resources than others’. Women, minorities, and the disabled are sometimes disadvantaged in this way. Sex disparities exist in the diagnosis of lung cancer, diagnosis and treatment of cardiac diseases, and access to kidney transplants.1 Stereotypes, prejudices, and role attributes can make providers see women’s health complaints as being due to emotional rather than physical causes.15 Racial disparities exist in access to care and allocation of resources in many areas.
A physician, who has cared for an elderly couple for years, discovers that the woman has had a recurrence of her breast cancer…and that it is widely metastatic. The woman’s husband somehow discovers this before the physician has a chance to tell the woman. The husband then calls the physician and frantically tries to persuade the physician not to tell his wife, stating “she has always said she will kill herself if the cancer comes back”.
In this case, the husband wants the physician to practice “benevolent deception”. That is, the husband wants the physician to adopt a paternalistic role and make unilateral decisions for the good of the patient. Except in (very) rare cases of “therapeutic privilege”, where the physician truly feels that the patient’s health would be adversely effected by hearing the truth, ethicists and risk managers agree that it is best to avoid “benevolent deception”. Note also that buried in this case is a question of duty. The physician clearly has a duty to the patient (the woman) and if there is a concern that the patient would become suicidal if told the truth, then the physician needs to identify and help the patient work through that problem, not avoid the issue and adopt a paternalistic role.
Today, when 26-year-old Jennifer Kennedy (not her real name) from Rockville, Md., has a panic attack, she simply distracts herself with a book or crossword puzzle. But at their height, several years ago, the attacks scared her so much that she finally went to the emergency room. “I thought I was going to die from a heart attack,” says Kennedy.
She didn’t believe her doctor when he told her to “just relax” and she would feel okay, and he ended up prescribing pills. He didn’t tell her until two weeks later, after her panic attacks had subsided, that the pills were simply placebos with no active medical ingredient.
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