html xmlns=”http://www.w3.org/1999/xhtml” xmlns:mml=”http://www.w3.org/1998/Math/MathML” xmlns:epub=”http://www.idpf.org/2007/ops”>
Case example
Thirty-five-year-old Ted Jones is brought to the ED of a small rural hospital one afternoon by his partner, James Moore. Mr. Jones was diagnosed with HIV infection ten years ago, and with AIDS two years ago. He has had multiple medical problems over the past two years, including several opportunistic infections. His presenting symptoms today are shortness of breath, chest pain, cough, and fever. He appears tired and emaciated, and he reports a two-week history of fatigue and weight loss of 8 lbs.
Despite his discomfort and fatigue, Mr. Jones is alert and oriented. Dr. Turner, the emergency physician on duty, administers a brief mental status exam; he observes that Mr. Jones has difficulty counting backwards from one hundred by sevens, and cannot accurately copy a geometric design. Mr. Moore, his partner for the past five years, reports that Mr. Jones has become increasingly tired, forgetful, and unable to concentrate over the past six months. Dr. Turner strongly suspects that Mr. Jones has Pneumocystis pneumonia (PCP). Dr. Turner requests a sputum sample for testing and recommends immediate initiation of targeted therapy to treat the suspected infection. Mr. Jones responds, however, that he does not want specific drug treatment if he has pneumonia. He maintains that he is tired of living with AIDS and wants to be allowed to die. He adds that he agreed to come to the hospital only because the pain and difficulty breathing became too great, and asks that he be given only treatment to relieve his pain and make him comfortable.
Mr. Moore, however, urgently requests that his partner be given definitive therapy for his lung condition. If Mr. Jones has PCP, Dr. Turner believes that prompt initiation of IV antimicrobial treatment has a 70–80 percent chance of treating his infection successfully. If Mr. Jones has PCP and it is left untreated, he will have progressive respiratory symptoms that will lead to death in a few days. How should Dr. Turner proceed?1
In this chapter, we continue the examination of moral issues in medical treatment near the end of life. Chapter 15 described advance care planning, a strategy designed to prevent moral conflicts over end-of-life care by identifying and honoring the patient’s own treatment preferences. Despite its promise, however, advance care planning is no panacea; it cannot prevent all moral conflicts over what treatments to provide patients near the end of life. Many people do not plan ahead for these decisions; some who do plan ahead create plans that do not address particular situations, and some advance directives are challenged by family members or professional caregivers. Moral conflicts over treatment near the end of life will, therefore, remain a frequent occurrence in health care for the foreseeable future. This chapter will begin with a brief review of various types of end-of-life moral conflict. I will then focus on one major type of conflict, namely, conflict between patients or their representatives, on the one hand, and professional caregivers, on the other. I will identify major causes of this type of conflict and suggest strategies for conflict resolution.
Types of end-of-life moral conflict
It is important to recognize that conflict over care near the end of life can occur in several different settings. One way to organize three main types of this conflict is according to the locus of the conflict, as follows: internal conflicts occur within a single individual, interpersonal conflicts occur between two, or among three or more persons, and public policy conflicts pit groups of people against one another regarding the legal and social parameters for end-of-life care. Let’s take a closer look at each of these types of conflict in turn.
Internal conflicts
People who are dying, their loved ones, and their caregivers may all experience internal moral or prudential conflicts about treatment near the end of life. Dying patients may confront the following conflicts, for example:
1. pursuit of the goal of prolonging life by means of a difficult course of treatment, versus enhancement of the quality of one’s life by forgoing that course of treatment
2. enduring pain caused by advanced disease in order to remain alert and responsive to others, versus accepting sedation to manage pain
3. reliance on loved ones to provide needed assistance with treatment and activities of daily living, versus forgoing life-prolonging treatment in order to relieve loved ones of the burdens of caregiving
Dying patients may find it difficult to reconcile conflicting beliefs, values, interests, and obligations in order to make morally defensible decisions in these choice situations. A comparable list of internal conflicts could be constructed for the relatives or professional caregivers of dying patients.
Interpersonal conflicts
Moral conflicts regarding treatment choices near the end of life may arise between or among any of the following: the dying person (if he or she is still conscious), family members and friends, and physicians and other health care professionals caring for the patient. Later in this chapter, we will review common causes of interpersonal conflicts between patients or their representatives and their professional caregivers, and consider strategies for their resolution.
Public policy conflicts
Public and institutional policies guide medical treatment decisions near the end of life in multiple ways. They may, for example, determine what treatment options are lawful and unlawful, who may provide various treatments, and what resources are available to pay for different treatment options. Three major public debates in the United States over the past four decades have shaped public policy and professional practice regarding medical treatment for patients nearing the end of life: the “natural death” debate, the physician-assisted suicide debate, and the “futility” debate. Because these debates have been so influential in the US, a brief review will set the stage for the discussion of interpersonal conflicts to follow.
As mentioned in Chapters 2 and 15, the case of Karen Ann Quinlan in 1975–1976 triggered the first sustained public attention to life-sustaining medical treatment in the US.2 The ensuing “natural death” debate featured requests by patients and their representatives for release from unwanted life-prolonging medical treatment to enable a natural or peaceful death, and responses from physicians and health care institutions that forgoing life-prolonging treatment would amount to killing the patient and thus cannot be permitted. A series of court decisions from Quinlan through Cruzan,3 the first US Supreme Court ruling on life-prolonging medical treatment, recognized and defined a basic patient right to refuse such treatment.4 Despite formal acceptance of this right, however, research studies of the care of patients near the end of life have suggested that patient desires to forgo life-prolonging treatment are often not known or honored.5 The Florida case of Terri Schiavo, which was the subject of multiple court rulings, state and federal statutes, and executive orders from 1998 through 2005, exposed deep divisions in US public opinion about the use of life-prolonging medical treatment.6
The second major US public policy debate addressed the practice of physician-assisted suicide. Proponents, most notably Dr. Jack Kevorkian, argued that physicians should be permitted to provide assistance in suicide at the request of their patients; opponents argued that this practice was both immoral and fraught with danger and should therefore be prohibited. A pair of seminal 1997 US Supreme Court decisions rejected the claim that assistance in suicide is a basic constitutional right and allowed individual states to decide its legal status within their borders.7 By 2015, five states (Oregon, Washington, Montana, Vermont, and California) had legalized this practice. Chapter 18 will examine physician-assisted suicide in more detail.
The third notable US policy debate over end-of-life care revolves around the concept of futility. Beginning in the late 1980s, reports appeared in the medical literature that patients and their representatives were requesting or demanding life-prolonging treatments like cardiopulmonary resuscitation.8 Some physicians resisted these demands on the grounds that the treatments requested would be futile. Other commentators challenged this appeal to futility, arguing that it often did not provide a clear or adequate justification for denying requested treatments. Debate over the role of futility in decisions about providing life-prolonging treatment continues, and this issue is the topic of Chapter 17.
Though the three issues described above have been the most sustained and prominent public policy debates regarding end-of-life care in the United States, they are certainly not the only controversial policy issues in this area. Two other difficult policy issues regarding access to specific treatments deserve brief mention. One ongoing debate is over access to narcotic pain medications. These medications are highly effective for managing the severe pain of patients with advanced cancer and other serious illnesses, but they are also in great demand for recreational use, and are now among the most commonly misused prescription drugs. Placing restrictions on the use of these drugs and closely monitoring physician prescribing patterns may reduce their misuse, but may also make it more difficult for patients who need these drugs for effective pain management to receive them. Another ongoing issue has to do with access to very costly life-prolonging treatment modalities. Recently developed anticancer agents, for example, may extend life for patients with metastatic cancer for a median of three to five months, at a cost of $140,000 to more than $500,000 per quality-adjusted life year gained, depending on the type of cancer.9 Must public and private health insurance carriers provide this modest benefit at this high cost, or may they deny coverage in an effort to control their costs and provide sustainable coverage for their insured population? This issue is likely to become more urgent in the United States as health care reform efforts attempt to expand coverage and simultaneously to control health system expenditures.10
Conflicts between patients or their representatives, and professional caregivers
We return now to an important type of interpersonal conflict, namely, conflict between health care professionals, on the one hand, and patients, or surrogate decision-makers representing patients who lack decision-making capacity, on the other hand. As we have already noted, these conflicts can be about different issues, but I believe that the vast majority of conflicts between these parties are variations on the following general theme. The parties in conflict cannot agree on what are appropriate goals of care or treatment priorities. One party believes that cure or life prolongation is the most appropriate goal of care, and thus curative or life-prolonging treatments should be initiated or continued. The other party believes that a natural or peaceful dying process is the most appropriate goal of care, and thus curative or life-sustaining treatments should be withheld or withdrawn. The rest of this chapter will consider why these conflicts occur and how they might be resolved.
Common causes of conflict about end-of-life care
Why do conflicts frequently arise between patients or their surrogates and health care professionals over treatment near the end of life? I suggest that the causes of these conflicts fall into four main categories, which I will call cognitive causes, affective causes, normative causes, and external causes. Let’s review these four categories in sequence.
Cognitive (knowledge-based) causes
Conflicts of this type occur because the parties have different understandings of the facts of the situation at hand. To take an obvious example, if one party believes that a particular treatment offers a realistic chance to cure a serious illness, and the other party does not, they are very likely to disagree about whether to provide or receive that treatment.
Either party to a conflict can be ignorant (that is, have no information) or can have a misunderstanding (that is, a false belief) about any of the following relevant items:
1. Who has the authority to make a treatment decision?
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
