Promoting Excellence : ALS Executive Summary : Workgroup Findings and Recommendations to the Field

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The results of the literature search demonstrated that there were very few studies that specifically address the end of life in ALS patients. It is important to point out that death is at the end of a continuum of care in ALS, and therefore, end-of-life care is heavily influenced and depends on the care provided from the earlier stages of ALS. For this reason, some recommendations are directed at caring for the patient at earlier stages in the disease. The Workgroup used the "Practice Parameter: The Care of the Patient with Amyotrophic Lateral Sclerosis (An Evidence-Based Review)" as the foundation for generating specific recommendations that focus on topics and issues that influence the end of life in ALS (Miller et al., 1999).


Defining End of Life

The Workgroup agreed that palliative care begins at the time of diagnosis for patients with ALS. Initiating end-of-life discussions is difficult for many physicians and health care providers depending on their own experience and philosophy. When to introduce end-of-life discussions with patients and their families is also uncertain. The Workgroup developed six triggers for identifying when end-of-life discussions should be introduced (see below). Important factors that determine when the patient and family are ready to discuss end-of-life issues include coping skills, depression and anxiety, cultural issues, use of functional assistive devices and physiologic status.

Six Triggers for Initiating Discussion about End-of-Life Issues

  • The patient or family asks-or "opens the door"-for end-of-life information and/or interventions (elicited or spontaneous, verbal or non-verbal)
  • Severe psychological and/or social or spiritual distress or suffering
  • Pain requiring high dosages of analgesic medications
  • Dysphagia requiring a feeding tube
  • Dyspnea or symptoms of hypoventilation, a forced vital capacity of 50 percent or less is present
  • Loss of function in two body regions (bulbar, arms or legs)

Physicians' Perception of Own Mortality

To engage in end-of-life discussions, physicians need to come to terms with the limitations of medical therapies and to develop an attitude of unconditional acceptance and support for the patient. This requires that health care providers address their personal attitudes toward death and dying, come to terms with their own mortality and take the necessary steps to work through their own personal issues surrounding death and dying.

Methods

The ALS Peer Workgroup identified topics and issues specific to the end of life in ALS: general psychosocial care, bereavement, spirituality, quality of life, caregiver issues, communication skills, ethics, decision making, symptom management, access to care, costs of care and knowledge/education. For each topic, the Workgroup identified the current state of knowledge, determined what constitutes ideal care and provided recommendations on how to close the gap between current and ideal care. A systematic review of the literature was conducted in order to identify the available evidence for these issues. This evidence review was used as the foundation to define the current state of care, and consensus was used to determine the gaps between current care and optimal care. Recommendations to the field were developed, addressing practice, research, program development and health care policy. These recommendations are based on published evidence and consensus.

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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.

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