Promoting Excellence : ALS Report to the Field : Methodology


аи Executive Summary
аиаReport to the Field

Establishing the ALS Peer Workgroup and Defining the Aims of the Project

The ALS Peer Workgroup consisted of an interdisciplinary panel of experts including neurologists, ALS nurse practitioners, a social worker, a pulmonologist, a palliative medicine specialist, a speech language pathologist, an ethicist (neurologist) and patient advocacy representatives. Based on consensus, the ALS Workgroup defined four areas of care for evaluation and formed small groups to address them:

  • Psychosocial care, bereavement, quality of life, spirituality and caregiver issues;
  • Ethics, communication and decision making;
  • Symptom management (respiratory, nutrition, depression and pseudobulbar affect, speech/communication, pain, insomnia and final hours); and
  • Access to care, cost of care, health policy and knowledge/education.

The tasks for each of the four groups were to:

  • Identify the current state of care in each of the four areas listed above based on published evidence. When no evidence was available, the state of care was defined by expert consensus (summarized in Appendices B-E);
  • Determine elements that constitute optimal care based on consensus (summarized in Appendices B-E);
  • Define the gaps in care between the current state and optimal care;
  • Provide recommendations on how to close the gaps between current care and optimal care in the realms of clinical practice, research and health policy; and
  • Identify tools and resources that can help close the gaps (summarized in Appendices B-E).

The Process

Members of the Workgroup gathered in June 2000 to identify aims, structure and process. Each of the four small groups met by regular conference calls throughout the first year to present and discuss their findings. Half of the Workgroup members met in November 2000 in conjunction with an international ALS meeting. Three of the small groups met for one-day sessions in the fall 2001; the final consensus conference was held in November 2001.

Each small group conducted a systematic review of the literature using Medline. Abstract titles were screened, relevant abstracts were reviewed and key papers were used to support the conclusions made that defined the current state of care. Consensus was reached within each of the four groups to define optimal care for each of the issues addressed. Through consensus, specific recommendations were identified on how to fill the gaps in care. In order to fill these gaps, recommendations were targeted to three different audiences: clinical practice, research and health care policy.

Conceptual Considerations in Defining End of Life

For some health care experts and patients with ALS, palliative care begins at the time of diagnosis. For others, end-of-life discussions and preparations are considerably delayed. Therefore, deciding when to introduce end-of-life discussions with patients and their families can be challenging for clinicians and other health care providers. Additionally, end-of-life care often involves switching from a restorative goal to a more palliative goal, and the timing of this transition can be challenging, even for experienced physicians.

The Workgroup devised an operational definition for end of life to help identify when end-of-life discussions should be introduced to patients and caregivers. Triggers for initiating discussions about end-of-life care for patients with ALS are:

  • 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)

The presence of any of these triggers may signal the clinician to initiate discussions regarding the end of life, and if necessary, establish an end-of-life treatment plan with increasing emphasis on palliation. While end-of-life care is an important aspect of palliative care, all patients with ALS need the full range of active palliation from the time of diagnosis. When to focus on the terminal phase of ALS requires professional judgment that takes into account a broad base of information about the patient and family (coping skills, depression and anxiety, cultural issues, use of functional assistive devices and physiologic status, among others).

Resources and Defining Optimal Care

Results from the evaluation of the currently available resources and the defining optimal care exercise were used to identify the gaps in end-of-life care, and for developing practice, research and policy recommendations for the field. The detailed results from the review of the currently available resources and definitions of optimal care are presented in Appendices B-E.

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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 for more resources.

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