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The debilitating progression of Parkinson's disease (PD) symptoms and the associated challenges of disease management have lead to extreme loss of quality of life and excessive caregiver burden, particularly near the end of life. Long-term effects of PD cause severe reduction in cognitive function and in the ability to maintain independence for mobility and self-care. Providing palliative and end of life care to individuals with PD and their families present significant challenges for addressing individual and family needs and expectations. Minimal research has been published examining end of life issues specific to PD. An understanding of end of life issues in PD is essential for health care providers to effectively assess and address the needs of individuals and caregivers during the final stage of life.

In case studies of individuals with PD, caregivers and families, end of life issues include the need for continued symptom control to maximize comfort, maintenance of nutrition despite dysphagia, and support for worsening cognitive dysfunction and severe immobility. For example, the burden of providing 24-hour care to a spouse with frequent night-time awakening and elimination needs is exhausting to the care provider; potentially diminishing the relationship quality and decreasing individual capability for addressing the psychosocial needs of either the individual with PD or the caregiver during final days of life. Additional research is needed to understand end of life issues facing those with PD and their families.