Promoting excellence in end‐of‐life care in ALS

Abstract

The type and quality of end-of-life care varies greatly in ALS; the time to initiate end-of-life care is not defined, and decision making is hampered by logistical and financial barriers. There has been no systematic review of these issues in ALS. The goals of this initiative are to: 1) improve end-of-life care for patients with ALS and families based on what limited evidence is available; 2) increase awareness, interest, and debate on the end-of-life care in ALS; and 3) identify areas needed for new prospective clinical research. The ALS Peer Workgroup reviewed the literature and 1) identified the current state of knowledge, 2) analysed the gaps in care, and 3) provided recommendations for standard of care and future research. It was shown that areas of investigation are needed on the incorporation of an interdisciplinary approach to care in ALS that includes: psychosocial evaluation and spiritual care; the use of validated instruments to assess patient and caregiver quality of life; and the establishment of proactive caregiver programs. Several public policy changes that will improve coverage for medical care, hospice, and caregiver costs are also reviewed. More clinical evidence is needed on how to provide optimal end-of-life care specifically in ALS.

Spirituality and/or religious faith: A means for coping with the effects of amyotrophic lateral sclerosis/motor neuron disease?

“…Management focuses on relieving distressing symptoms, but clear limitations exist as psychosocial effects frequently compound physical symptoms. When faced with a terminal illness, like ALS/MND, there is an inclination to question the meaning of life and death (Young & McNicoll, 1998;Oliver 2002;Grant et al, 2004); thoughts turn towards spirituality and faith for comfort and consolation (Oliver 2002); the importance of religion and spirituality in improving quality of life and decision making as death approaches is acknowledged (Delgado-Guay 2014).Spirituality is a domain of supportive and palliative care in national policies such as the UK End-of-Life Care Programme (DH 2008), quality-of-life (QOL) measures (WHO 1998), and ALS/MND-specific care recommendations (Mitsumoto et al, 2005). As a concept, spirituality does raise some issues for researchers and commentators.…”

Multidisciplinary Rehabilitation in Amyotrophic Lateral Sclerosis

“…Medications should include morphine to relieve dyspnoea and pain, midazolam to relieve distress and agitation and glycopyrronium bromide or hyoscine hydrobromide to reduce chest secretions, delivered parenterally (Oliver, 2007). Cultural and spiritual issues should also be addressed (Mitsumoto et al, 2005;Albert et al, 2007). Although many persons with ALS fear the terminal stages of ALS, with good palliative care, the later stages can be a time of fulfilment and peace for both persons with ALS and their families (Oliver, 2007).…”

“…Discussions should take place early, well before specific decisions need to be made. The actual timing of when to introduce these discussions however can be challenging and will depend on a number of factors including coping skills, depression and anxiety, cultural issues and functional status (Mitsumoto et al, 2005). Some triggers may include the patient or family initiation of discussion, severe psychosocial distress, pain requiring high dosages of analgesia, dysphagia, dyspnoea and functional loss in two body regions (Mitsumoto et al, 2005).…”

“…The actual timing of when to introduce these discussions however can be challenging and will depend on a number of factors including coping skills, depression and anxiety, cultural issues and functional status (Mitsumoto et al, 2005). Some triggers may include the patient or family initiation of discussion, severe psychosocial distress, pain requiring high dosages of analgesia, dysphagia, dyspnoea and functional loss in two body regions (Mitsumoto et al, 2005). Given the progressive nature of the disease, the patient eventually has to choose between life-sustaining therapies (respiratory www.intechopen.com assistance, feeding tubes) and terminal palliative care whilst considering issues relating to quality of life, burden of therapies, their own wishes and those of their family.…”

Amyotrophic Lateral Sclerosis

“…Resources are available that reflect both the evidence 3 as well as expert consensus. 5,7 By breaking the news in a compassionate, truthful manner, establishing a trusting relationship, addressing false hope, and continually probing patients' values, physicians can more effectively navigate the inevitable ethical challenges of ALS disease progression.…”