Ethics and Clinical Practice Guided by the Family Health Care ...

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IMPLEMENTING THE FAMILY HEALTH CARE DECISIONS ACT 3. Health Care Decisions for Adult Patients Without Surrogates 3.1 The patient alone, the” unbefriended patient,” 10 is among the most vulnerable persons in the health care setting. Thus clinicians bear added responsibilities and obligations for patients without surrogates. The absence of a surrogate nonetheless requires that all care plans be considered including aggressive interventions and palliative, supportive, and comfort care. As the invasiveness or burden of the treatment rises and the prospect of benefit diminishes, the health care team should engage in thoughtful and sensitive discussion in order to parse the benefits and burdens of alternative treatments, and ultimately arrive at an ethically appropriate and comfortable result. Patients may have some distant relative, friend, or care provider who can be contacted and some prior recorded wishes or relevant information that can be recovered. A reasonable effort should be made to identify such additional information, when possible. However, in some instances there is neither a surrogate nor any information about the patient’s wishes or preferences available. Such patients are a hidden and closed box of values, history and desires. For these patients the FHCDA permits “routine medical treatment” to be decided by the patient’s physician. 11 Ethically that would mean treatment that is neither experimental nor controversial and that is, in the judgment of the physician, in the clear best interest of the patient. The team, with appropriate intervention in difficult cases of a Clinical Ethics Consultant, will be able to address these decisions comfortably. The FHCDA also addresses “major medical treatment” and even withdrawing and withholding lifesustaining medical treatment. 12 The decision making standards are the same for major medical treatment as for “routine medical treatment.” However, there is an additional procedural element. Specifically, a physician can make a recommendation in consultation with hospital staff directly responsible for the patient’s care. At least one other physician designated by the hospital must independently determine that he or she concurs that the recommendation is appropriate. 13 Complying with the above will satisfy the requirements of the FHCDA. But ethically more can be done. The more concerned professionally skilled and compassionate staff comes together to discuss the case and the options, the better the discussion of alternatives is likely to be. An “ad hoc” meeting of the institution’s ethics committee may lead to the exploration of all alternatives and the comfort that one is best for this patient. Collec- tive consideration demonstrates respect for the patient and for the seriousness of the decision. The FHCDA has delineated a limited situation where withholding or withdrawing life-sustaining treatment is authorized for a patient who does not have a surrogate. The law states that the attending physician, with independent concurrence of a second physician designated by the hospital, must determine to a reasonable degree of medical certainty that life-sustaining treatment offers the patient no medical benefit because the patient will die imminently, even if the treatment is provided, and the provision of life-sustaining treatment would violate accepted medical standards. 14 Once this threshold condition has been met, the decision-making standards enumerated for a surrogate are the same standards that have to be met by providers prior to implementing a health care decision for a patient who does not have a surrogate. The attending physician on whom much of the responsibility, including its timeliness, for decision making falls should utilize available resources including the Palliative Care Team and the Clinical Ethics Consultation service in order to gather all of the expertise and explore all of the options. The goal of such discussion and deliberation should be to reach consensus on the best course of action and possible outcome for this patient. As with the surrogate, so too among the team, shared decision making assumes that authority and responsibility will sit comfortably together and support the best decision. 4. Decisions for Children [This discussion focuses mainly on decisions for adults. But, some few comments about how these decisions are made for children seem appropriate. A separate discussion would be needed to explore the depth and breadth of pediatric practice]. 4.1 Pediatricians and parents have a long and deep tradition of deciding together about care for children. Ethically, decisions for children must address developing capacity in the same way that decisions for adults accommodate declining, fluctuating and wavering capacity. In general, parents and pediatricians, with increasing participation of the child as that child advances, make decisions about care for that child. Occasionally, when parents and pediatricians disagree, or when abuse is alleged, the state welfare or justice agencies become involved in weighing the evidence and determining the best interest of the child. There are also federal and state statutes that empower children under the generalized age of adulthood [generally 18] to make certain decisions about: treatment for drug and alcohol use; use of contraceptives, fam- 80 NYSBA Health Law Journal | Spring 2011 | Vol. 16 | No. 1
IMPLEMENTING THE FAMILY HEALTH CARE DECISIONS ACT ily planning and abortion; and, some decisions about the care of children born to teens. Under some circumstances children of 12 or 13 have rights under these statutes. As children age, some chronically ill children develop increasingly apparent moral and cognitive capacities to address decisions about their health care. They develop capacity to understand the context of their illness, the speculative nature of proposed treatments, and the possibilities or probabilities of success or failure of experimental interventions. They acquire information and develop an ability to evaluate present risks and immediate pain and suffering against later projected benefits. Most young children, however, clearly need parents and guardians to make medical decisions for them. Even for small children, attempts to assign some area of decision making to their level of capacity [whether to receive an injection on the bed or in the playroom] may engage them positively in the treatment and satisfy a need for control. 4.2 The moral framework for adolescent decision making requires navigating between erroneously empowering children who are not yet morally prepared to make decisions and excluding children who are ethically and intellectually capable of making their own decisions. The adolescent person presents a particular and peculiar set of quandaries for medical ethics considerations. On the one hand, from the age of 12 or 13 the literature documents that these teens have the ability to bring moral considerations to bear on decisions, have some notion of consequences that may follow from action, and have some experience that may be relevant to the actual decision contemplated. On the other hand, adolescents have fantasies of immortality, respond incommensurately to feelings and judgments of their peers, may be enmeshed in conflict with parents and authority figures, and may have less experience than is really required to weigh the risks and benefits of potentially compromising decisions. Adolescents locked in age-appropriate combat with parents and physicians risk making potentially damaging health care decisions that may have long-standing negative consequences. Thus the parents, physicians, and teen, with welfare agencies and courts ready at hand, must create a tripartite structure that is able to reach decisions jointly. The pediatric team is skilled at assessing the capabilities of the children they treat. Parents, who have their own hopes and fears, may be less so. Conflict between these groups is not common and is generally managed by the pediatric team over time. Very rarely it requires, as the new law recognizes, an intervention to manage, or hopefully, to resolve the conflict. 5. Clinical Ethics Consultation 5.1 Central to the task of the Clinical Ethics Consultation [CEC] 15 is the matter of helping to bridge the natural power differentials that separate heath care staff and surrogates. Surrogates may be overwhelmed by the nature of the decisions that they are facing and by the generally foreign and intimidating culture, language, process and structure of the hospital. Surrogates need to be supported and empowered in order to be able to address the tasks presented to them. In most instances, the surrogate and the medical team will review the options and will together reach a shared decision about what reflects the wishes and values of the patient or is in her best interest. At times, this communication will be at odds or fraught with conflict. At such junctures, a Clinical Ethics Consultation may be of help and the FHCDA recognizes this fact by incorporating reference to an ethics support mechanism under certain circumstances. Clinical Ethics Consultants can seek to clarify and address ethical concerns, defuse and disaggregate disagreement, and resolve conflict. Clinical ethics consultation is an intervention in which a trained clinical ethics professional: • responds in a timely fashion to the request for a CEC from any member of the medical care team, patient, or family member; • reviews the patient’s medical record; • either interviews relevant medical stakeholders or gathers the clinical care team and other consultants to discuss the case; • visits the patient and family whenever possible; • as a preliminary matter, identifies the ethical issues at play and any sources of conflict; • involves the patient or family with care providers to promote communication, explore options, and seek consensus, when appropriate; • employs expert discussion of bioethical principles, practices, and norms and uses reason, facilitation, negotiation, or mediation to seek a common judgment regarding a plan of care going forward; • attends to the social, psychological, and spiritual issues that are often at play in disagreements about the proper course of care; NYSBA Health Law Journal | Spring 2011 | Vol. 16 | No. 1 81
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