Framing advance care planning in Parkinson disease

Abstract

ObjectiveAdvance care planning (ACP) is a core quality measure in caring for individuals with Parkinson disease (PD) and there are no best practice standards for how to incorporate ACP into PD care. This study describes patient and care partner perspectives on ACP to inform a patient- and care partner-centered framework for clinical care.MethodsThis is a qualitative descriptive study of 30 patients with PD and 30 care partners within a multisite, randomized clinical trial of neuropalliative care compared to standard care. Participants were individually interviewed about perspectives on ACP, including prior and current experiences, barriers to ACP, and suggestions for integration into care. Interviews were analyzed using theme analysis to identify key themes.ResultsFour themes illustrate how patients and care partners perceive ACP as part of clinical care: (1) personal definitions of ACP vary in the context of PD; (2) patient, relationship, and health care system barriers exist to engaging in ACP; (3) care partners play an active role in ACP; (4) a palliative care approach positively influences ACP. Taken together, the themes support clinician initiation of ACP discussions and interdisciplinary approaches to help patients and care partners overcome barriers to ACP.ConclusionsACP in PD may be influenced by patient and care partner perceptions and misperceptions, symptoms of PD (e.g., apathy, cognitive dysfunction, disease severity), and models of clinical care. Optimal engagement of patients with PD and care partners in ACP should proactively address misperceptions of ACP and utilize clinic teams and workflow routines to incorporate ACP into regular care.

RADPAC-PD: A tool to support healthcare professionals in timely identifying palliative care needs of people with Parkinson’s disease

“…We further developed elements that could be helpful in implementing ACP in practice. As earlier studies [5,14,15,55] describe difficulties in role and responsibility on this topic in PD, we found consensus on statements that give direction on how, what and by whom ACP could be performed. Our findings suggest that healthcare professionals of all disciplines do have a role or are entitled to introduce ACP.…”

Experiences of advance care planning in Parkinson's disease and atypical parkinsonian disorders: a mixed methods systematic review

“…Studies varied in their approach to delivering information and the amount given. In early disease stages, patients often did not want this information due to fear, denial, hope of a cure, wanting to live a normal life or to focus on symptom control [5,6,23,25,26,35,40,43]. On the other hand, some patients and family carers wanted to know about prognosis and the disease trajectory early.…”

“…Figure 1 displays the result of the searches. An additional two publications were identified through forward and backward citation tracking [5,23]. They were published after the date of our electronic search and included after screening for relevance.…”

“…They were published after the date of our electronic search and included after screening for relevance. A total of 27 studies were included, of which 15 were qualitative [5][6][7][23][24][25][26][27][28][29][30][31][32][33][34] and 12 were quantitative [14,15,[35][36][37][38][39][40][41][42][43][44].…”

Consensus-Based Recommendations for Advance Directives of People with Parkinson’s Disease in Regard to Typical Complications by German Movement Disorder Specialists

“…However, this study does not aim to create a complete and independent AD for PwP. Results of this study can contribute neurological expertise to frame ACP in PD [15].…”