Promoting Excellence : ALS Report to the Field : Introduction

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Defining ALS

ALS is a progressive neurodegenerative disease that typically results in death from respiratory failure within three to five years from onset of symptoms (Mitsumoto et al., 1998). While caregivers, patients and health care providers focus considerable effort on implementing treatments to halt or slow the disease, ALS remains relentlessly progressive. Consequently, because there is no cure for ALS, the major focus of clinical care is providing the highest quality of life through the management of symptoms and emotional or physical suffering (Oliver et al., 2000).


Issues in End-of-Life Care

ALS varies considerably among patients regarding site of onset and rate of progression (Brooks, 1994; Munsat et al., 1988; Ringel et al., 1993). However, the advanced phase of the disease is relatively stereotypic involving decreasing motor function, increasing immobility, increasing respiratory insufficiency and increasing pain. Foregoing active disease treatment, nutrition and hydration, and withdrawing life-sustaining care (such as respirators) are common end-of-life considerations for patients with ALS. Thus, during the later stages of ALS, most people need their clinician's help with multiple issues, such as psychosocial support, decision making regarding withdrawal of life-sustaining therapies and pain management. However, in reality, end-of-life care for many patients with ALS begins at time of diagnosis. From this point forward, consistent attention to palliative care is paramount to helping patients and their families through the journey of this progressive illness and eventual death.

The primary focus of the ALS Peer Workgroup initiative was to improve end-of-life care for patients and families with ALS so that those affected can experience optimal care and support at the end of life. Patients and caregivers look to health care providers for guidance during this process. Individuals caring for patients with ALS face decisions and challenges that can be overwhelming. The initiative explored resources that should currently be available to the patient and caregivers and who should provide the necessary care. It also explored issues and gaps that have prevented full implementation of what should be standard practice. This initiative also identified barriers that health care providers encounter when caring for patients with ALS.

One of the greater challenges for health care providers in providing palliative care for their patients is coming to terms with the limitations of medical therapies and developing an attitude of unconditional acceptance of and support for patients. Meeting this challenge requires that health care providers review their own attitudes toward death and life, come to terms with their own mortality and take the necessary steps to address their own personal issues surrounding death and dying (Appendix A, Table 1). Beyond exploring mortality issues, other gaps in care exist at the end of life for these patients and their care providers, such as:

  • Clinicians may be reluctant to, or are not familiar with, initiating discussions regarding end-of-life issues.
  • Clinicians are daunted by the dying patient and believe that they have nothing to offer the patient.
  • Clinicians and caregivers have inadequate training in the principles and practical application of state-of-the-art pain and palliative medicine.
  • Health care providers have limited experience with:
    • ALS-specific symptom management; this may extend across specialties (e.g., family medicine, internal medicine and general neurology, and also across health care providers-nursing, social workers, physicians and residents, among others). This limited experience in symptom management is particularly evident regarding:
      • Use of opioids;
      • Withdrawal of or failure to provide life-sustaining treatment; and
      • Provision of psychosocial and spiritual support.
  • Health care providers often fail to coordinate among different disciplines (respiratory, gastroenterology, neurology, primary care and physical therapy).
  • Caregivers can be distressed and exhausted.
  • Patients and their families are given abundant information late in the disease process.

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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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