Ethical Challenges in the Care of Children and Families Affected by Life-Limiting Neuromuscular Diseases

Abstract

Training of interdisciplinary clinicians is needed to improve their adoption of relevant ethical guidelines, cultivate greater awareness of diverse attitudes regarding the ethical permissibility of different treatment options and the utility of ethics consultation, and foster greater confidence and competence in responding to ethical challenges that arise in pediatric neuromuscular practice.

The Spectrum of Caregiving in Palliative Care for Serious, Advanced, Rare Diseases: Key Issues and Research Directions

“…'' 19 Frequently, caregivers face significant ethical challenges to their values and preferences for care at various transition points in the disease trajectory, for example, whether to participate in genetic testing, enroll in clinical trials, initiate mechanical ventilation, or withdraw therapies. 19 Decisions of this nature, along with the overall strain of caring for a loved one, can lead to tension between the caregiver and the patient, as well as tensions across family relationships, as they struggle between hope and cure and the eventual fatality. 12,20 Caregiver competence or perceived competence in caring for a loved one can affect caregiver quality of life.…”

“…Expanding the repertoire of skills, resources, and services that are offered to individuals and their families is vital. 19 The lack of information about palliative care, together with the uncertainty inherent in a rare disease diagnosis, can lead to more aggressive treatments and poorer end-of-life and palliative care. Prigerson stated during the workshop, ''Not knowing what to do fuels the approach of doing more.''…”

“…22 There are personal, societal, medical, and institutional challenges that impede transition to independence, and families must work to incorporate these experiences into ongoing family life for years to come. 19,21 Many family caregivers of children with rare neuromuscular disease find that extended care requires navigating the complex, frustrating, and fragmented array of services associated with transition of care from childhood to adulthood. 19 Family caregivers balance leading a 'normal life' with grieving daily, and the desire to appropriately discuss the future, death, and dying with others.…”

“…19,21 Many family caregivers of children with rare neuromuscular disease find that extended care requires navigating the complex, frustrating, and fragmented array of services associated with transition of care from childhood to adulthood. 19 Family caregivers balance leading a 'normal life' with grieving daily, and the desire to appropriately discuss the future, death, and dying with others. At the same time they are challenged to gain information on and access to trained, compassionate care and services.…”

“…16 The challenges of caregiving can precipitate stress, moral tension, and reduced quality of life, with caregivers reporting difficulties balancing caregiving roles with everyday needs, a deep sense of loneliness, isolation, impaired social functioning, and anxiety. 19 In the context of caring for a child with a rare neuromuscular disease, parents may seek normality for their child and their family while discovering ways to give voice to their child's and siblings' perspectives. However, some families may view caring for a loved one as a positive experience.…”