Identification of Existing Resources
Patient autonomy in end-of-life decisions, as in all medical decision making, is the accepted Western paradigm. Although patients or their surrogates can legally and ethically withdraw or not initiate life-sustaining interventions (including hydration and nutrition), many are not aware of their rights or do not exercise their rights. Voluntary organizations (e.g., The ALS Association) offer resources that can help decision making surrounding end-of-life issues.
The extent to which the individual is actually autonomous will vary widely. The cultural context of the individual will influence the acceptance of the prevailing societal standards. Exploring the cultural background, particularly the spiritual beliefs of the individual and family, is essential. Where major differences are detected in perceived morality of the decisions and in other areas such as disclosure of medical information, advice from appropriate authorities in the patient's community and from the consultative ethics team in the medical institution should be sought prior to a crisis.
Communication of information among health professionals and the patient and family is required for making treatment decisions. Clinicians impart knowledge of, and experience with, all stages of ALS. The patient with ALS and the family impart their values and experiences that will guide their decisions. Strategies to effectively communicate complex and difficult information have been promulgated; effective communication strategies are advocated in managing patients and families with ALS (Appendix C). A recent brief review summarizes the "CLASS" and "SPIKES" protocols, which detail effective communication approaches for health care providers and their patients (Buckman, 2001). The EPEC Program provides training to educators who promote dissemination of improved end-of-life care, including improving communication techniques.
Decision making in ALS differs from other life-threatening diseases in that life-sustaining measures can prolong life while having little or no impact on disease progression. Decisions made by default (or in emergent situations) may not be congruent with previously unstated goals or values of the patient and family. Unless specifically addressed, and in sufficient detail, placement of feeding tubes, institution of respiratory support and referral to hospice can be omitted, or undertaken haphazardly. The role of denial in delaying decision making, and the correlates of denial have never been specifically evaluated. In the literature, there are some guidelines regarding timing of interventions (such as percutaneous endoscopic gastrostomy [PEG] placement) and when to initiate discussions regarding starting interventions; however, there is little information on how to approach patients who delay decision making surrounding end-of-life issues. Additionally, clinical practice varies widely with regards to what to do when patients delay decision making, when discussion should begin, and how to approach patients who delay decision making.
A particularly difficult communication and decision-making situation is one of a "locked in" patient on a ventilator with no Advance Directives. This circumstance reflects a failure of advance care planning because there had been ample opportunity earlier to ask how the patient wished to be treated in this circumstance and to have avoided the present predicament. At this point, clinicians should try to establish a communication system with whatever movement response the patient retains. But assuming that the patient is so de-efferented that no communication system is possible, the patient would require a surrogate decision-maker. The patient lacks the capacity to make a health decision, not for the usual reason of cognitive impairment, but because of an absence of communication (somewhat similar to that of an aphasia patient). The surrogate should be appointed through the usual means and be instructed to decide by the usual standards.
Identification of Existing Gaps
Communication Between Clinicians and Patients/Families/Caregivers
Few studies evaluate clinical practices regarding discussion of sensitive issues such as sedation, pain relief and withdrawal of life support (including ventilation, nutrition and hydration), let alone the impact of these decisions on those affected by ALS, their caregivers and on medical practitioners. The clinicians' attitudes about the diagnosis, available therapies and perceived quality of life in patients with ALS during the end of life need to be better understood in order to assess how physicians influence patient attitudes and choices.
In ALS, no studies address the impact and efficacy of communication strategies or the validation of specific approaches to communication and decision making. Communication of the diagnosis is felt to be unsatisfactory by the majority of those surveyed, suggesting that effective communication remains elusive for many in clinical practice.
For some patients, conflicts arise from differences in values, and these conflicts may extend to either family members or health care providers. These conflicts should be resolved prior to entering the end-of-life phase, yet systematic approaches on how to resolve ethical conflicts are lacking.
The understanding of how and when to create a predefined plan detailing the end-of-life process is not available. For example, the individual and family must be prepared to prevail in their end-of-life choices when encountering under-informed medical staff. Legally binding documents (e.g., durable medical power of attorney) and ideally, on-call or back-up health care providers should be arranged in advance and available to the family. Decisions are not immutable; the evolution of choices and the influences that lead to changes in decisions must be better understood.
Communication Between Clinicians in Patient Care Decision Making
Management of ALS involves many clinicians, whether formally structured into an interdisciplinary team or more loosely networked within a community. Communication between the different clinicians is often problematic, as knowledge of the course and prognosis of ALS is varied and the values and experiences of each clinician are not normally stated. Often, the patient does not have a single physician who takes the leadership role in initiating end-of-life discussions. One of the primary responsibilities for this lead physician's role also is to communicate to other health care providers what the management plan is and what the patient's decisions are surrounding the end of life.
Recommendations to the Field
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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.