The ethical principle of self-determination requires that a person is accorded the freedom to make decisions for himself or herself, yet it is not completely accurate to operate from the image of an independent self with no obligation to consider the needs and interests of other persons. While self-determination is defined as “respecting the decision making capacities of autonomous persons,” it is also true that persons exist in multiple relationships (Beauchamp & Childress, 2001). The total treatment decision, of which informed consent is a part, also takes into account the patient’s aspirations and goals, as well as the interrelated functions of the person—physiological, psychological, social, and spiritual (O’Rourke, 2000).

Enacted in 1991, the Patient Self-Determination Act creates the foundation for the patient’s exercise of decision-making authority. The law was prompted in part by highly publicized legal cases involving life-sustaining or life-prolonging treatment decisions for patients unable to express their wishes. It was also prompted by the advances in medical technology that made such life-sustaining treatment possible (Ulrich, 1999). The legal standards of informed consent and confidentiality arise from the ethical principle of self-determination. In the process of informed consent, the patient is given, in language that he or she can understand, a description of the intervention, treatment or medication, its purpose, anticipated outcome, its risks and benefits, and any alternatives to the treatment. Medical practices, home care, nursing homes, and hospitals honor confidentiality and privacy policies governing the sharing of a patient’s medical and financial information.

The APN meets patients and families in moments of vulnerability and limiting health conditions. The inequality of medical knowledge in the patient-professional relationship requires the APN to respect the integrity of the patient. Beyond rule following, the ethic of the patient-professional relationship entails a degree of altruism as well as particular virtues or characteristic motives deep within the person (Pellegrino & Thomasma, 1988). Many worthy characteristics are discussed in the arena of virtue ethics. Beauchamp and Childress (2001) suggest five central virtues—compassion, discernment, trustworthiness, integrity, and conscientiousness. The moral virtues, instilled in upbringing and functioning deep in a person’s character, become habitual ways of responding and acting ethically. Just as the experienced APN uses clinical assessment skills habitually, almost unconsciously, the virtues as ethical habits are implemented without having to be consciously recalled and intentionally put into action.

The ethic of the patient-professional relationship is further defined by two related principles— nonmaleficence, avoiding the causation of harm, and beneficence, a group of norms prescribing actions for the good of the patient (Beauchamp & Childress, 2001). Acting for the patient’s good, the APN considers, concurrently, the clinical condition and the patient as a unique person living in interdependent relationships. Moreover, the APN does not act as a neutral technician, abandoning moral stance and values system when patient and family demands go against sound medical judgment or ethical principles. The APN should seek assistance when conflicts in treatment or care plan goals threaten the integrity of clinician clinical judgment and ethical principles. Additionally, because it is subjective, the motivation of acting in the patient’s best interest should be checked and tested by seeking the view of a colleague or the review of the treatment goals with an institutional ethics committee.

Finally, the honesty inherent in the patient-professional relationship entails not avoiding the communication of difficult truths about diagnosis and prognosis to the patient and family. Marked by care and empathy, such conversations empower the patient and family with information needed for decisions and good-byes. Within the ethic of the patient-professional relationship, the APN discerns with the patient and family a course of care that supports the whole person with advanced disease.

The APN caring for patients in advanced disease seeks to determine whether the patient, in the present moment, understands the medical choices and their consequences. Legal determinations of competency introduce a complex process in which a professional in psychiatry or psychology evaluates the patient and attests to competency, using a strict clinical and legal framework. It may be more practical and it is acceptable, in cases of fluctuating capacity, to consider an alternative approach, decisional capacity (Robbins, 1996). Rather than applying the standard tests for orientation, the assessment of decisional capacity weighs the patient’s ability to understand the information relevant to the decision and its consequences (Ulrich, 1999). When the patient lacks decisional capacity, decisions made on behalf of the patient promote the convergence of the patient’s interests and the clinician’s medical knowledge. In cases involving the more formal determinations of competency, and for assistance in the regulations and policy governing related determinations of next-of-kin and guardianship, the APN should utilize resource persons in the institution and community, including social workers, legal counsel, and agencies specializing in elder service and protection (Curtis, 2004).

The APN and physician call on surrogate decision-makers when a patient is incapable of making a treatment decision or has not formulated a living will or advance directive. Generally, the order of precedence in surrogates is as follows: the durable power of attorney for health care, anyone specified by the patient, a legal guardian with specific authority to make medical decisions, the spouse, children of age, and parents (Robbins, 1996). In one approach for surrogate decision making, substituted judgment, surrogate decision-makers attempt to decide as the patient would have decided if he or she were capable. In this approach, the surrogate decision-maker must have some knowledge of the desires and values of the patient and, most important, what constitutes the patient’s own understanding of well-being (O’Rourke, 2000). The patient’s advance directives and past statements and choices help reveal patient wishes. In another approach, best interests, the surrogate decision-maker makes a decision for the patient when there is no information about the patient’s wishes, determining what course of action best supports the welfare of the patient. Clinicians, after providing information on the patient’s condition and prognosis, should ask the family what they think their loved one would have wanted and should explain to the family what will be done in terms of comfort measures (Shannon, 2001). When surrogate decision-makers are unaware of or unsure of the patient’s wishes, the decision should be made based on the patient’s best interests, not on what the surrogate would do if in such a situation. Clinicians should seek the assistance of pastoral care, social workers, and other institutional resources when the surrogate’s decision is counter to the patient’s best interests and is influenced by subjective aspects such as grief and fear.

Ideally as part of advance care planning, advance directives outline the patient’s wishes for medical care and are formulated when the patient is still competent. (Advance care planning is discussed more fully in Chapter 4.) These legal documents support the moral authority of the patient’s family or surrogates to decide on behalf of the person. In the absence of advance directives, an informed family or a surrogate, with the physician and APN, may withhold life-sustaining treatment, based on the patient’s preferences and clinical condition. In the best case, the patient has communicated his or her wishes and intent to family members, to a surrogate decision-maker, or to a power of attorney for health care. Although advance directives vary from state to state, the living will generally outlines a person’s wishes about life-prolonging treatment and artificially provided nutrition and hydration. In the health care power of attorney advance directive, the patient has named the person who will speak for him or her and carry out the patient’s wishes. Either document becomes effective when the patient lacks decisional capacity. These directives also allow that, in the presence of a terminal or permanent vegetative state, life-sustaining treatments may be withheld. A terminal condition is generally defined as a condition caused by disease, illness, or injury that is irreversible, incurable, and untreatable. A further requirement may entail that two physicians attest to and document the terminal condition. The opportune time for the documentation of advance directives is in an office visit or on admission to an extended care facility, prior to crisis situations. Turning points in the patient’s advanced disease are opportunities to review goals and advance directives in consideration of the total condition and well-being of the patient (Della Santina & Bernstein, 2004). The physician and APN hold the trust and respect of the patient and family and can encourage the completion of such documents, normalizing the discussion of advanced illness and death and helping families and patients move beyond fear and avoidance of mortality (Quaglietti, Blum, & Ellis, 2004).

Withholding a treatment entails a decision against instituting that treatment or therapy. Withdrawing a treatment concerns a decision to stop and possibly remove the treatment. For this discussion, treatments include those understood as life sustaining or life prolonging—cardiopulmonary resuscitation, artificial nutrition and hydration, ventilatory support, and dialysis—as well as other interventions not generally classified as such—vasopressors, intravenous fluids, and antibiotics. Although it is a common misapprehension, there is no moral or legal distinction between decisions to withhold and withdraw treatment. Both decisions concern changing the goals of care when the treatments that no longer modify disease are ineffective and unwanted by the patient, a process that most often occurs over time rather than during one meeting or conversation (Derse, 2005). To make either decision ethically requires a careful weighing of several factors, including the patient’s condition and prognosis and the ability of the treatment to reverse the terminal progression of the disease, to alleviate suffering and reduce burden, and to support or weaken the patient’s total well-being, including the patient’s ability to pursue the goods of life (Panicola, 2001).

Regulatory emphasis on caloric intake and the rehabilitative function of nursing homes causes some facilities to resist allowing the patient or family to withhold or withdraw tube feeding (Miller, Teno, & Mor, 2004). Elderly residents may lack decision-making capacity, and there may be no family, friends, or surrogates with knowledge of the resident’s life and preferences (Lynn, 1989). It is important for the APN to become familiar with the facts rather than operate out of a fear of liability and from unsupported assumptions about whether a treatment can be foregone or withheld (Meisel, Snyder, & Quill, 2000).

Withdrawing a treatment may occur after a time-limited trial of the intervention. Due to the difficulty in predicting life expectancy in advanced disease and the unpredictable course of noncancer illness, a time-limited trial is a helpful approach when establishing treatment decisions (Miller et al., 2004). A time-limited course of the therapy should be considered in the presence of benefit; and, in the absence of benefit, the patient, family, and clinician agree to discontinue therapy after establishing a set time-frame (O’Rourke, 2000).

Technological innovations in medicine offer clinicians a means to guide their patients through a medical crisis to a return to health. The message implicit in medical advances, the technological imperative, asserts that if a medical innovation is available, it must be used. Thus, medical advances constitute weighty decisions for the patient and family in the situation of advanced disease and end of life. The burden of treatment decisions for families and patients grows even heavier as they struggle to determine whether the treatment offered thus far is sufficient and when it is acceptable to forego the medical technology available. In decisions to withhold or withdraw treatment, it is important to recall that the goal of medicine is an optimally functioning human being whose interdependent functions—physiological, psychological, social, and spiritual or creative—further the fulfillment of the purpose of life (O’Rourke, 2000). When treatments cannot achieve those goals, it ethically acceptable to withhold or withdraw them. Palliative care provides the clinician the ability to offer tangible comfort and alleviation of symptoms, replacing unnecessary and unhelpful measures.