Study Reveals Core Recommendations to Improve Palliative Care in Parkinson Disease


A recent systematic practice review outlined pragmatic recommendations to enhance palliative care for patients with Parkinson disease and their caregivers, emphasizing integration, coordination, and personalized care plans.

Piret Paal, PhD, the director of the Institute of Palliative Care at the Paracelsus Medical University in Salzburg, Austria

Piret Paal, PhD

Newly published in Palliative Medicine, a recent systematic practice review presented pragmatic recommendations across core dimensions deemed to be essential for enhancing palliative care among patients with Parkinson disease (PD). This review suggests that consideration is needed of palliative care integration, based on symptom burden and personal preferences, coordination, and continuity of care, to maintain the quality of life of patients with PD and their caregivers.1

Among 62 articles, 4 core dimensions were identified on palliative care for patients with PD which included healthcare providers and care coordination; advance care planning; involvement of and care for informal caregivers; and triggers for palliative care referral. Throughout the review, the studies provided evidence that education about palliative care and movement disorders is important. Thus, the investigators recommended to healthcare providers that palliative care should be multidisciplinary, individualized and coordinated for the patient and the caregiver based on the core dimensions observed.

Clinical Takeaways

  • Pragmatic recommendations highlight the importance of personalized, multidisciplinary palliative care teams for enhancing the PD patient experience.
  • Early involvement of multidisciplinary teams, assessing diagnosis impact, and prioritizing quality of life are crucial elements in effective palliative care for PD.
  • The study calls for additional research on symptom management interventions and strategies for seamless palliative care integration, aiming for comprehensive and patient-centered PD care.

“To improve the care experience for patients with PD, it is essential to provide clear and timely information about available services and the roles of healthcare professionals involved. Multiprofessional palliative care teams should be established, individualized care plans developed and awareness and education on palliative care promoted,“ senior author Piret Paal, PhD, the director of the Institute of Palliative Care at the Paracelsus Medical University in Salzburg, Austria, and colleagues wrote.1 “Patients’ goals and values should be respected and included in effective advance care planning, which should be initiated before cognitive decline, respecting the readiness of patients and caregivers and incorporating PD-specific aspects.”

READ MORE: Parkinson Disease Symptoms Improved With Modification of Advanced Therapies

Investigators reviewed studies conducted via OVID to access CINAHL, MEDLINE, EMBASE and the Cochrane Library between January 1, 2006, and May 31, 2021, with an additional search performed in December 2022. The method for this review was adopted to determine the strength of evidence, supported by feedback from an expert panel, to generate the 'do', 'do not do', and 'do not know' recommendations for palliative care. The literature search was limited to empirical studies that showcased approaches to enabling palliative care for the investigators to make recommendations for improving this type of care in PD for both patients and caregivers.

“When considering palliative care referral for patients with PD, assessing the impact of the diagnosis, involving multidisciplinary teams from the early stages and focusing on the patient’s and family’s quality of life are essential,” Paal et al noted.1 “Key crisis times should be identified for additional support and specific criteria can guide referral to palliative care. Furthermore, regular assessments of caregivers’ experiences and needs along disease course are essential to offer support and monitor their health.”

Another recommendation from the investigators in the current review is having proactive involvement and supporting caregivers throughout the illness by the healthcare providers. All told, the limited data from the studies overall provided referral indicators for palliative care integration. In addition, the authors recommended that discussions about advance care planning should be held early with the provider and the patent. Despite the existing evidence in the review being heterogenous and including articles had different quality levels, the investigators noted that the strength of evidence relied heavily on the expertise of the members of the PD_PAL consortium.

“Further research is warranted to develop specific interventions aimed at enhancing symptom management, particularly towards the end-of-life phase for patients with PD. Additionally, strategies for fostering the seamless integration of palliative care into the care continuum for these patients and their families require further investigation. These efforts collectively aim to provide comprehensive, compassionate and patient-centered care for patients with PD and their caregivers,” Paal et al noted.1

1. Garon M, Weck C, Rosqvist K, et al. A systematic practice review: Providing palliative care for people with Parkinson's disease and their caregivers. Palliat Med. Published online December 6, 2023. doi:10.1177/02692163231214408
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