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.

In weighing the benefits and burdens of care and treatments, the clinician, patient, and family consider whether the burdens of treatment outweigh the benefits. Does the continued use of the treatment or diagnostic test constitute a burden or benefit? Do the burdens of the intervention outweigh the benefits? Will the treatment reverse the course of the illness and return the patient to previous well-being? Will the treatment allow the patient to enjoy the things enjoyed previously, including awareness of and pleasure in relationships? Because clinicians differ on what they consider to be ordinary treatment, the assessment of ordinary versus extraordinary treatment is not as helpful as is the consideration of benefits and burdens. The benefits and burdens principle is used within a moral framework of embracing life as a value while, at the same time, recognizing that life is not an absolute good (O’Rourke, 2000). Life is to be enjoyed as a gift, yet there are limits to what must be done to sustain life in the context of advanced disease and end-of-life care (Sheehan, 2001). In the context of advanced disease and terminal condition, it is permissible to forego measures that entail excessive burden—pain, suffering, and expense—to the patient or family and when those measures will create unwanted side effects and will not improve condition or outcome.

For this discussion, futile treatment is treatment that is unable to reverse the course of the disease and that offers no hope of benefit. Because families sometimes insist on futile treatment, a well-developed process for timely, ongoing communication within the team and with the family can prevent conditions that lead to demand for futile treatment—family feelings of a loss of control, insufficient information to keep pace with the patient’s condition, and a lack of information on what is possible to achieve given the patient’s situation (Hamel & Panicola, 2003). Sound medical judgment, rather than family demands and court decisions, should determine what treatment is appropriate and what therapy is offered and is not offered. Futile treatments prolong the eventuality of death, fuel unrealistic hope, counter the goals of medicine, and frustrate health care team members (O’Rourke, 2000). Giving in to unrealistic demands for treatment puts the medical profession in jeopardy of losing its essential responsibility for patient well-being. To approach treatment decisions with an excessive fear of legal liability risks the weakening of the professional ethic and the transfer of clinical decision making to the courts. Measures that limit clinician vulnerability to legal challenge include clear documentation, explicit rationales for a course of treatment, adherence to policy and processes, and involvement of institutional resources such as the ethics committee (Robbins, 1996).

A crucial ethical distinction in cases of medical futility is that of fatal pathology, an illness or condition that will cause death if not addressed by means of medical intervention or surgery. In withholding or withdrawing a life-sustaining treatment, the patient suffering from a fatal pathology dies of the underlying disease that rendered them unable to breathe, eat, or process bodily waste. In such a case, the person died of the inexorable course of the disease. The withholding or withdrawing of the treatment does not constitute a new cause of death; instead death follows its natural course (O’Rourke, 2000). Clinical judgment determined that the treatment would not further the total well-being of the patient, including the physical and spiritual dimensions (Paris, 1998). To make such a determination requires knowledge of the patient’s overall outlook, respect for the patient’s dignity, and recognition of the imminence or nearness of death, rendering the treatment ineffective.

In the patient-professional relationship, the patient and family rely on the clinician’s medical knowledge regarding what treatments will and will not benefit the patient. The physician has the competence to make medical decisions and the responsibility to come to decision making having already determined what is and is not medically appropriate and what will not be offered based on what is within the bounds of good medical practice (O’Rourke, 2000; Sheehan, 2001). Using the clinical leadership approach, the health care professional accepts the responsibility for his or her share of the clinical decision, ruling out inappropriate choices, explaining that based on his or her medical judgment and years of clinical experience, the treatment will not benefit the patient and may even harm the patient. Patients and families consent to the clinician’s determination that the treatment is not indicated; they are not asked to choose to forego a beneficial treatment. Contrary to assumptions in the field, no legal or ethical mandate exists requiring physicians to offer families all conceivable treatments (Hamel & Panicola, 2003). Even if a patient or family requests an outcome of continued physiological function, if the patient is unable to pursue the goods of life, the family request does not legitimate the pursuit of that outcome. This is especially true when the demand for futile treatment necessitates ongoing medical care affecting the use of medical resources (O’Rourke, 2000).

The fiduciary ethical claim in the patient-professional relationship necessitates trust and respect for the vulnerability of the patient. In the approach of clinical leadership, the physician offers guidance, empowering the patient to help himself or herself (Pellegrino & Thomasma, 1988). A core competency for the clinician is the ability “to guide the transition from curative and palliative goals of treatment to palliative goals alone,” basing the plan on outcomes evidence and clinical judgment (Surgeons’ Palliative Care Workgroup, 2003). APNs and physicians in the care team should guard against paternalism or unilateralism by seeking independent opinions from physicians, ethics consultants, chaplains, or pastoral care staff on whether treatment can achieve the therapeutic goal. Open discussion of the proposed plan of care can also assess the strength of data and clinical experience to support an assessment of the futility of the treatment (Curtis, 2004). The clinician must be able to understand family grief, their wish to keep the patient alive by any means and cost, and their often unrealistic hope in the technological advances of medicine.

Pain management in the terminal phase of advanced disease is guided by the principle of double effect. The principle makes ethical distinctions among intentions and consequences, particularly those consequences that are anticipated (O’Rourke, 2000). Thus, an act that brings about two foreseen effects, one good and the other adverse, is not always morally prohibited (Beauchamp & Childress, 2001). The motivation pursuing a good effect, such as managing pain in the terminal phase, may bring about two results—the intended effect of pain relief as well as an unwanted but foreseen side effect, the suppression of respiration. In the context of terminal conditions, the distinction of motive and wanted and unwanted effects is essential in assessing the morality of the act. Guided by this principle, high doses of opioids and sedatives may be ordered by the physician when the intention is to relieve suffering and not to cause the patient’s death. The dose must be the lowest dose that effects relief of symptoms. The patient must be in a terminal condition, the need to relieve suffering must be urgent, and there must be consent of the patient or surrogate decision-maker. For further conditions to the principle and guidance on the appropriate context and application of the principle of double effect, see Lo and Rubenfeld (2005).

Thorough documentation of the clinician’s intentions is essential, including indications for the administration of analgesics and sedatives (Truog, Cist, Brackett et al., 2001). Guidelines such as clinical parameters and dosage indications are necessary in the use of sedative agents for the management of pain and symptoms in dying patients. The APN has a crucial role in providing family education in the dying process—what the patient feels and does not feel—and in understanding the role and intent of palliative sedation, which is to provide comfort and alleviation of symptoms, not to cause or hasten death (Foley, 2001).

A review of findings from the Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments (SUPPORT) revealed that treatment preferences of seriously ill patients are poorly understood and unknown to physicians, family, and surrogates (Covinsky, Fuller, Yaffe et al., 2000). The last three decades of publicly debated medical ethics cases concerning disagreement over life-sustaining treatments involve family disputes, the limits of medicine, and intrusion by society into the personal nature of medical care (Dresser, 2005). Communication and mediation skills of the APN, the care team, or other resource persons support ethical care and patient advocacy, assisting patients and families in navigating the decisions of advanced disease and end-of-life care.

Patients and families appreciate clinicians’ sensitive and candid communication. Families want clinicians who do not shy away from discussions about death (Curtis & Patrick, 2001; Twohig & Byock, 2004). Time spent listening increases family satisfaction. Consensus in the care team prevents the communication of conflicting messages to the patient and family. Effective goal setting and treatment decisions made with the patient and family seek to understand what quality of life would be important to the patient after treatment (Curtis, 2004). Proactive communication may successfully circumvent a latent family conflict, arising in the highly charged arena of death or medical crisis, that threatens to derail the meticulously established, condition-appropriate care plan.

Protocols for communication and decision making are summarized by Morrison and Meier (2004). Weissman (2004) offers a case review outlining a structured approach to decision making for patients in the acute, terminal phase of advanced disease. Scripting in open-ended questions intended to assist the patient and family articulate goals, hopes, and questions is provided by Tobin and Larson (2000). Phrasing for the clinician in introducing prognosis and treatment options, including hospice care, is reviewed in Pantilat and Steimle (2004). Several case reviews and investigations in the medical literature provide invaluable insights into the essential element in ethical treatment decisions, clear, sensitive, and timely clinician communication (Bradley, Hallemeier, Fried et al., 2001; Emanuel, Fairclough, Wolfe et al., 2004; Hallenbeck, 2005; Larson & Tobin, 2000; Quill, 2000; Rabow, Hauser, & Adams, 2004; Roter, Larson, Fischer et al., 2000; von Guten, Ferris, & Emanuel, 2000; Wenrich, Curtis, Ambrozy et al., 2003).

Religion often influences treatment decisions in the circle of health professionals and family surrounding the patient with advanced disease. An active faith life can bring stability, acceptance, and transcendent hope to patients and families. For some faith traditions, belief in life after death is held in balance with the value of life. Yet, the care team, acutely aware of the burdens of aggressive treatment in the last stage of life, may find themselves in disagreement with patients and families insisting on aggressive treatment. The basis for such a choice on the part of the family may be a strongly held religious conviction involving hope in a miracle, faith in technology to bring about a cure, or a view that physical life is to be maintained no matter the cost. Recourse to a theological argument or stance may also be the means of stating grief (Brett & Jersild, 2003). In such cases, the APN would do well to seek the assistance of a chaplain, social worker, or spiritual advisor in the community known to and respected by the family (Mosley, Silveria, & Door, 2005). (Chapter 6 offers a more extensive investigation of the topics of culture and religion.)

The APN, physician, and team rely on each other as sounding boards when the solution to an ethical dilemma or family conflict seems too clouded by their own emotions or opinions. The institutional ethics committee provides deliberation with others who are not involved in the case but are experienced in ethical decision making, in a collaborative discernment of the issues and solutions. Ethics committees are generally advisory and are involved in case review and consultation, clarifying the medical problem, and obstacles to communication; at times, they make specific recommendations (Ross, Glaser, Rasinski-Gregory et al., 1993). Bioethics mediation, as a resource for the APN and care team, combines ethical consultation approaches with the skills of mediation, helping the parties in a conflict discover reasonable solutions and options in achieving the goals of care (Dubler & Liebman, 2004).

Justice norms consider the fair distribution of benefits, risks, and costs (Beauchamp & Childress, 2001). In the Judeo/Christian tradition, it means ensuring that basic needs are provided for the poor (Kammer, 1991). Because health is necessary to the pursuit of the goals of human life as it is lived in community, health care is a public good. Although some may be reluctant to cite cost considerations, American health care is affected by the sum of decisions and practices in every arena of medical care and medical industry. Assessments vary on the amount of health care spending in the last stage of illness, but these costs are significant when weighed against other social goods (Curtis, 2004; Miller et al., 2004). Limits for health care spending are outlined in managed care plans, payer limits, and institutional policies and processes to contain costs (e.g., hospital formularies), but these piecemeal cost controls are unable to check total spending. While it is true that clinicians act as advocates for their patient and bedside rationing is not appropriate, it is also true that, in the aggregate, the inappropriate use of costly technology drives up the cost of health care. In contrast, unpaid family caregivers incur significant financial costs, sometimes must leave employment, and may risk a depletion of savings. Virtually invisible in the official economy, the economic value of unpaid family caregiver contribution and cost for the approximately 27.6 million families in this situation is estimated at $196 billion (Hauser & Kramer, 2004). A just resolution of the problem of the equitable distribution and cost controls in American health care would require a national dialogue and a rough consensus on what would constitute a “decent minimum” of health care and what “equal access” to health care would require (Beauchamp & Childress, 2001). Justice is an important ethical consideration as it calls for a broader view of the common good in contrast to individual needs and wants.

It is not easy to navigate the diminishment of advanced illness, the frailty of old age, and death. The last stages require a letting go, a personal ethos of surrender and dispossession. The health care team sustains the patient through the crises, ethical dilemmas, and decision points. An ethic of empathy and professionalism mark the way clinicians prepare the patient and family for the passage of advanced disease and death. Although life experiences vary, the APN’s personal awareness and acceptance of mortality, influence the way the clinician plots a course through end-of-life decisions with patients. In the end, formal obligations of fidelity in the patient-professional relationship are translated into the human expression of faithfulness to the vulnerable other, the patient and family journeying through advanced disease.