Promoting Excellence : ALS Executive Summary : Communications and Decision Making


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Patient Walking Illustration

Patient autonomy in end-of-life decisions is the accepted Western paradigm. Although patients or their surrogates have the right to refuse or legally withdraw life-sustaining interventions, many are unaware of their rights. Physicians must skillfully facilitate such communications about decisions regarding life-sustaining interventions. Few studies are available that evaluate clinical practices regarding discussions of sensitive issues such as sedation, pain relief and withdrawal of life support, let alone the impact of these decisions on ALS. Despite the importance of good communication, physician education and training in these skills are largely neglected.

Practice Recommendations

  • Improve communication skills to effectively discuss end-of-life issues with patients with ALS and family members. Identify the physician, or team member, who will take the leadership role in end-of-life discussions, and who will, in turn, communicate the decisions to the other health care providers. This may be done by confidential correspondence in notes in the health records (patient's chart). Health care providers should be prepared to support the patient's decisions, regularly review the patient's decisions and update the patient's chart accordingly.
  • Establish a partnership between the patient and interdisciplinary team members in the treatment plan during disease progression. This relationship needs to be established prior to initiation of end-of-life discussion. The triggers to end-of-life discussions represent the most overt prompts to planning care. From the time of diagnosis, clinicians should provide opportunities to discuss all types of care alternatives. Respiratory issues are central to end-of-life decisions. The reasons behind monitoring pulmonary function should be explicitly stated and all options for respiratory care, including symptom management alone, should be clearly explained.
  • Adopt a consistent strategy and use it at each visit. The "CLASS" approach is widely accepted, as is the "SPIKES" method of delivering bad news. Present specific choices of medical care as a means of maintaining quality of life and control over health care delivery.

Research Recommendations

  • Identify decision points (such as changes in respiratory measures) that need to be routinely discussed between the patient and the health care provider. Assemble a list of important decision points and implement prospective studies to assess the impact of standardizing treatment discussion around decision points.
  • Develop prospective studies that assess specific areas of communication that are relevant to ALS. Identify optimal timing and ways to communicate the diagnosis, discuss illness progression and approach end-of-life issues.
  • Develop overall disease assessment tool(s) for the patient with ALS that help physicians identify specific areas of psychosocial need (e.g., spiritual, social and functional domains).
  • Develop prospective studies that evaluate the type and timing of communication and decision-making discussions regarding end-of-life decisions, medical intervention use at the end of life and the utility and durability of Advance Directives.

Policy Recommendations

  • Improve training in appropriate communication strategies (e.g., the "CLASS" and "SPIKES" protocol) for end-of-life care and include evaluation of skills in these areas when seeking accreditation (e.g., board certification testing).
  • Incorporate workshops on improving communication and decision-making processes in training programs in ALS and neurology (e.g., continuing medical education at national meetings, board certification courses and medical schools). Develop new ways to disseminate this information (e.g., Internet-based tutorials). Assess the impact of these tools.
  • Provide institutional support for improved communication. Provide easy access to medical interpreters, social workers and patient advocates.
  • Establish regular debriefings of all involved in mediated decision making as part of quality assurance in health care facilities.
  • Integrate monitoring of communication and decision-making practices into the accreditation process of health care facilities.

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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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