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CURRENT CONTROVERSIES IN CRITICAL CARE |
A great deal of consensus exists on the moral principle of autonomy. However, when closely examined in practice, autonomy can be extremely difficult to protect, especially when patients are incompetent or severely compromised in their decision-making capacities. Therefore, we rely on advance directives from the patient, or from a duly informed surrogate (preferably delegated to act as a durable power of attorney or appointed healthcare decision maker), when the patient becomes unable to make decisions.
In practice, however, despite policies and even laws legislating advance directives about resuscitation and end-of-life care, patients can suddenly become incapacitated before obtaining adequate information about their choices in terms of advance directives or patient-appointed surrogate decision makers. There are legal precedents for establishing an order of surrogate decision makers. Closest family members are usually considered the first choice as surrogates because it is assumed that they know the patient best and that they have the wishes and best interests of the patient as a top priority. However, in some situations, the closest family member may not qualify because of estrangement, conflict, or incapacity.1,2 In their book, Principles of Biomedical Ethics, Beauchamp and Childress3 cite the ordering of the Virginia Natural Death Act:
If the patient is incompetent and has not specified standards through an advance directive, a decision to withhold or withdraw life-prolonging treatment must involve consultation and agreement between the attending physician and any of the following individuals in the following order of priority if not individual in a prior class is reasonably available, willing and competent to act: "judicially appointed guardian (if necessary in the circumstances), patient-designated decision maker, spouse, adult child or a majority of adult children available, parents of the patient, and nearest living relative of the patient."This suggested ranking is not absolute, and health care professionals sometimes should seek to disqualify potential decision makers because of their incompetence, ignorance, bad faith, or conflict of interest. Serious conflicts of interest in the family may be more common than either physicians or the courts have generally appreciated.3,4
Much planning and developing of practices for ensuring a safe hospital passage, where the patient retains his or her rights to autonomy, is required to actualize these ethical practices and honor the patient’s rights to autonomy. For example, a patient arriving at the emergency department may have an advance directive or an appointed durable power of attorney, but neither may be available to the staff in the emergency department, and thus the fallback practice of heroically treating the patient may be carried out against the patient’s stipulated prior wishes. The ethical principle is not in question, rather the management of patient information and planning are faulty, creating an ethical crisis in the emergency department and subsequently in the critical care unit.
In another example, an adult patient may be admitted to the hospital in an alert, competent status, but not be questioned about advance directives or about whether the patient has a delegated surrogate decision maker. This is a critical problem in cases in which there are no known family members who can be contacted. The social worker may be duly called to assist the alert, competent patient with establishing a delegated surrogate or assisting the patient in creating an advance directive. Or if the patient is unconscious, the social worker or nurse may inquire with visitors whether there is a reasonable surrogate decision maker for the incapacitated patient. Again, in principle, this may seem to be an easily solved problem, but in practice, there may be lags between patient communication, family communication, and documentation.
In some cases, documentation may be inadequate, hidden, or even misplaced in the chart. The stage is set for an "ethical emergency," a situation that offers the patient little protection of her or his right to autonomous decision making about end-of-life care. Doctors must then rely on joint consult with other physicians about the reversibility of the acute episode and about the effectiveness or futility of proposed interventions. In many hospitals, an ethical consult is mandatory in such a circumstance; however, when the crisis is acute and the decision must be made within minutes or hours, it may be difficult if not impossible to get adequate input on the ethical considerations for continued treatment.
Even with clearly written advance directives, ambiguity can exist in terms of a particular illness episode. For example, is a particular episode of pneumonia or respiratory distress reversible, offering the patient months or years of additional life of an acceptable level of quality? In writing the advance directive, the patient usually has the dying phase of life in mind, and this is a notoriously ambiguous phase of life. In the case of chronic long-term illnesses, there is no substitute for ongoing clear communication between patients, family members, surrogates, physicians, nurses, and social workers about each illness episode. In highly fragmented healthcare delivery, discontinuity undermines effective communication with patients, families, and professionals.
Living wills that provide extensive, substantive directions on acceptable medical interventions and durable power of attorney for healthcare, or surrogate decision makers, are standard forms of advance directives.3 Much has been written about the difficulty of making advance directives for future points in time. People may adjust to a level of disability that they cannot imagine in advance, or treatments that they initially thought would be acceptable become intolerable. These disparities become a problem when patients cannot communicate clearly in the moment of crisis or when surrogate decision makers are unavailable.5,6
Whether a particular acute episode is terminal or reversible is often ambiguous. Patients, families, and physicians must weigh whether a particular acute episode is reversible. If a current illness is reversible, offering the patient a period of acceptable quality of life, then patients, families, and clinicians often decide to intervene in accord with the patient’s and family’s wishes, even though the patient may have decided against heroic measures at the end of life. Because knowing when the patient is at the end of life is ambiguous, a necessary moral tension exists in weighing the possibilities for recovery in each illness episode. No amount of legislation, bureaucratic procedures, or prognostic scores can prevent the moral tension of respecting autonomy, life possibilities, and alternative threats of prolonging dying and suffering. This tension is part of the fiduciary responsibility of healthcare providers for patients and families. However, we can do much more than we are currently doing to prevent unnecessary ethical emergencies.
Efforts to increase ongoing communication between patients, their families, and physicians about patients’ care preferences as their conditions change are crucial to preventing misunderstandings. Documents about advance directives and surrogate decision makers should be prominent and easily accessed in the medical record. For patients who are hospitalized for long periods of time, there should be regular checkpoints to see whether the advance directives are still clear and whether surrogate decision makers are still available and competent. Such communication, handled respectfully and adjusted to the patient’s concerns, usually will be reassuring to the patient. When patients clearly do not, or emotionally cannot, address end-of-life care issues, then they should be encouraged to delegate a surrogate decision maker to assist with advance planning and to address any rapid changes in the patient’s condition.
We need to improve our practices for ensuring that patient autonomy is protected and that ethical emergencies are prevented. Clear principles without well developed practices, communication strategies, team-work, institutional policies, and procedures to effectively work out the principles in practice cannot serve us. Responses from readers on strategies to improve communication and decision making that have helped prevent avoidable ethical emergencies in their clinical setting are welcome!
To purchase reprints, contact The InnoVision Group, 101 Columbia, Aliso Viejo, CA 92656. Phone, (800) 809–2273 or (949) 362–2050 (ext 532); fax, (949) 362–2049; e-mail, reprints{at}aacn.org.
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