Objective: To describe the development of palliative care clinics for patients with advanced Parkinson’s disease (PD) in two diverse settings with a qualitative focus on challenges faced and practicalities involved.

Background: PD causes significant suffering due to the burden of severe motor and non-motor symptoms, as well as detrimental affects on psychosocial, spiritual, and caregiver wellbeing, especially in advanced stages. We developed two palliative care clinics, one at a large university medical center and the other at a tertiary Veteran’s Affairs (VA) hospital, in an attempt to address these problems in a comprehensive and goal oriented approach. At both sites, a multi-disciplinary team including a palliative specialist, neurologist, nurse, chaplain and social worker identified patients’ medical, psychosocial, and spiritual concerns. Prognosis and goals of care were specifically addressed.

Methods: We performed a retrospective chart review in order to characterize the patients we saw at two palliative care clinics. In addition, we qualitatively review our approaches to establishing these clinics and discuss barriers and important lessons encountered in the process.

Results: The palliative care clinic for PD was launched at the San Francisco VA 5 years ago, and at the University of California San Francisco 2 years ago. Major challenges to operating these clinics included the multi-payer system of private US health care, the stigma surrounding palliative care, and difficulty providing continuity of care. Other key lessons included the need for earlier screening and referral to the palliative care clinic, emphasizing the importance of caregiver presence at visits, and self-education in palliative care approaches as well as effective communication skills. Also important was a thorough discussion of what palliative care means prior to referral, and changing expectations of end of life care to more comprehensive, supportive care.

Conclusions: A multi-disciplinary and comprehensive approach to supportive care can be delivered in a palliative care clinic designed for patients with advanced PD. Palliative care is ideally multi-disciplinary and proactive. Its purpose is to relieve suffering through comprehensive management that is in line with patients’ goals, addressing symptoms, psychosocial stressors and spiritual issues while emphasizing quality of life.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/developing-palliative-care-clinics-for-patients-with-advanced-parkinsons-disease-practical-approaches-challenges-and-experiences/