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The Interface of Ethics and Palliative Care
Today, the road all runner's come, Shoulder high, we bring you home, And set you at the threshold down, Townsman of a stiller town. —A.E. Housman.
Ethics committees and consultation in pediatrics are both relatively recent phenomena. In the 1970s, only a few hospitals had ethics committees. By the end of the 1980s, most hospitals did. The stimulus for the development of ethics committees was the Baby Doe controversy of the early 1980s in which a baby with Down syndrome and esophageal atresia was allowed to die without routine surgery. This led the federal government to promulgate controversial guidelines for end-of-life decisions, guidelines that were challenged and eventually struck down by the U.S. Supreme Court. In the aftermath of that controversy, the American Academy of Pediatrics (AAP) formed a task force to define the role of ethics committees. The early committees focused almost exclusively on newborns and the controversies surrounding decisions to withhold or withdraw life-sustaining treatment. Later, ethics committees broadened the scope of their concerns.
According to the AAP, ethics committees (or “infant care review committees”) were to have three purposes. First, they were to provide an educational resource to hospital personnel and families of seriously ill infants. Second, they were to recommend institutional policies and guidelines. Finally, they could offer ethics consultation and review treatment decisions regarding critically ill infants. This original guiding document suggested that the term “infant” refer to any person less than 2 years old.
Over the years, ethics committees and consultants have taken on more diverse roles. They broadened their mandates to include children of any age. Some even began considering cases involving fetuses and perinatal decisions. They also broadened the scope of their concern from clinical decisions to cases involving organizational ethics. Organizational issues of concern include matters of informal organizational culture, especially when that informal culture leads to practices that conflict with organizational policy, communication problems, and issues of resource allocation that are built into but not explicitly addressed by organizational policy.
Pediatric palliative care programs developed over the same time period as pediatric bioethics committees. Their development was not fueled by a political controversy so they had a somewhat slower start. The field of palliative care gained legitimacy with the creation of a national board of hospice and palliative care medicine in 1995. In 2003, the Institute of Medicine report “When Children Die,” helped define the field of pediatric palliative care. The first freestanding pediatric hospice and respite care facility, the George Mark Children's House, opened in California in 2003.
Most tertiary care children's hospitals now have both ethics committees and palliative care services. There are many ways in which these two entities can and should work together. There are also ways in which they might come into conflict. This chapter will outline some of the domains of overlap and discuss the implications of the different goals and missions of bioethics and palliative care.
The Overlapping Domains of Bioethics and Palliative Care
The field of bioethics addresses many issues that have nothing to do with death, dying, symptom management, life-threatening illness, or end-of-life care. These include, for example, ethical issues of resource allocation, issues in the development of use of stem cells, ethical issues in research, or the ethics of enhancement therapies. For decades, however, issues surrounding end-of-life decision making have been among central issues of clinical bioethics. Analysis of these issues has led to thousands of peer-reviewed publications, many books, numerous legal cases, and a few statutes, as well as to movies and novels. Underlying all these discussions is a central fact of medical progress—medical technology has advanced to the point where patients in hospitals rarely die without a decision to withhold or withdraw some form of life-supporting therapy. Thus, what used to happen without an explicit decision now requires one. Such decisions are sometimes morally ambiguous, often emotionally draining, and may be legally complex. Not surprisingly, they sometimes lead to disagreements among various parties who are involved in the care of the critically ill or dying patient. Bioethical analysis focuses upon the underlying principles that should guide such decisions.
Over the past 25 years, bioethics has developed fairly robust and widely accepted ethical guidelines for making such decisions. Those guidelines define three domains of clinical decisions:
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Where treatment is ethically obligatory because it is clearly beneficial for the child,
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Where treatment is clearly futile and should never be provided (an ever-shrinking but never entirely disappearing domain),
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Where treatment outcomes are ambiguous or uncertain and in which doctors, parents, and children, if they are capable, must together make decisions about whether or not life-sustaining treatment should be provided.
Many pediatric palliative care cases are not ethically controversial. Often, it is clear that a child is dying. If the child's parents understand this and, in discussion with doctors, they choose palliative care rather than or along with life-prolonging therapy, there may be no ethical controversy. Instead, the expertise of palliative care will be used to maximize the efficacy of palliative interventions in order to make the dying process as pain-free as possible. Such cases can be fraught with medical and moral uncertainty, but often they are not marked by conflict between providers and families of the type that lead to bioethics consultation. In such cases, the palliative care that is provided by skilled practitioners is as morally unproblematic as any other medical care, such as cardiology, nephrology, nursing, or chaplaincy services. That is, while there are certainly ethical issues that must be addressed in each of these fields, they are the sorts of ethical issues that are at the core of medical practice. They do not require consultation or collaboration with bioethicists.
Ethical issues arise in palliative care, as in other specialties, when there is conflict between patient and family, patient and professionals, among professionals, or when any or all of the parties consider treatment that may be in conflict with law or hospital policy. In such cases, reasonable people might disagree about what is the right thing to do. The most common of such disagreements focus on two issues: the appropriateness of withholding or withdrawing potentially life-sustaining therapy, and the appropriate use of analgesics or sedatives that could hasten the dying process. When such cases arise, the boundary between issues that might be called ethical and those that are deemed the sole and proper domain of palliative care may become indistinct.
Such blurry boundaries between bioethics and a clinical specialty are not unique to palliative care. They arise in neonatology, oncology, intensive care, pulmonology, and many other specialties. When that occurs, clinicians must decide when and whether to consult an outside expert. Such consultation is often appropriate. After all, the care of children with complex chronic conditions, life-threatening illnesses, or children who are terminally ill is and ought to be an endeavor that requires teamwork, expertise from many different disciplines, and openness to discussion, questioning, insight, and critique of clinical decisions. This teamwork is difficult to build into clinical algorithms for care. It takes time. More importantly, it requires an ethos of humility about the nature of the work that we do and the sorts of dilemmas that we confront. Today, however, clinicians in these other specialties who face complex decisions about end-of-life care may wonder when they should consult bioethics or when they should consult palliative care.
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