Promoting Excellence : ALS Report to the Field : Psychosocial Care


аи Executive Summary
аиаReport to the Field

Identification of Existing Resources

Psychosocial care encompasses a range of issues relevant to patients, their families and caregivers and health care providers. Although current practice focuses predominantly on the patient's specific medical needs, psychosocial care actually may be the central factor that underlies the decisions regarding health care choices and attitudes about living and dying with ALS. A recent study published in the New England Journal of Medicine reports that seriously ill patients care about how burdensome the treatment is, their quality of life and likely outcomes (Fried et al., 2002).

Psychosocial care includes a number of different aspects of life for the patient with ALS, only some of which are listed below.

Children and family needs
End-of-life expectations
How to be present with a dying person
Role of health care provider/team
Life closure
Quality of life*
Sexuality and intimacy
End-of-life choices
Withdrawal of ventilation and other support
Supportive counseling
Coping mechanisms

*The workgroup selected these areas to review in this project. They are reviewed for: defining the current state of care, defining optimal care, assessing gaps in care and providing recommendations.

Psychosocial care underlies many decisions relative to caring for patients with ALS, including ethics, communications, symptom management and accessing resources and cost issues. Within each of the respective sections of this document, it is important to recognize that psychosocial components influence management and treatment decisions. Tools available for addressing many of these psychosocial issues are listed in Section 1 of Appendix B, Tables 1-7.

Identification of Existing Gaps

Despite its general influence across all areas of the patient's life, psychosocial care is understudied in ALS. There are few resources that provide direction for health care providers, patients and families regarding the psychosocial management of patients with ALS. As a result, there is a lack of focus, and in some cases a lack of awareness, regarding the importance of addressing psychosocial concerns in these patients. Many health care providers do not know how to approach patients to offer psychosocial support, and others do not know what type of psychosocial care would be beneficial.

Recommendations to the Field

Practice Recommendations

  • Increase awareness of importance for psychosocial care in patients with ALS and their caregivers.
  • Implement an interdisciplinary team approach to care in ALS that regularly includes a psychosocial evaluation.

Research and Program Development Recommendations

  • Develop specific training materials to facilitate an interdisciplinary approach to care.
  • Develop specific training materials to facilitate the goal of increased awareness for psychosocial care (such as vignettes, curricula, care plans or guidelines).
  • Develop curricula on psychosocial care (including cross-cultural interreligious issues).

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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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