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Far from being the end of the road : taking a closer look at neuropalliative care in Parkinson’s disease

Auffret, Manon ; Borovecki, Fran ; Heim, Beatrice ; Jost, Wolfgang H. ; Odin, Per LU orcid ; Stocchi, Fabrizio ; Trost, Maja and Vérin, Marc (2025) In Journal of Neural Transmission 132(11). p.1727-1750
Abstract

Parkinson’s disease (PD) is now recognized as a multisystem, heterogeneous neurodegenerative disease with fluctuating trajectories and complex symptom profiles. Despite therapeutic advances, many patients (particularly women and those in late stages) and their caregivers face substantial unmet needs across physical, psychological, social, and spiritual domains, which highlight the need for a more integrative care model. Palliative care, defined as holistic, person-centered care for individuals with life-limiting illnesses, is increasingly recognized as particularly relevant in PD, from early to terminal stages. However, its implementation in neurology remains limited, notably due to persistent misconceptions, and delayed or absent... (More)

Parkinson’s disease (PD) is now recognized as a multisystem, heterogeneous neurodegenerative disease with fluctuating trajectories and complex symptom profiles. Despite therapeutic advances, many patients (particularly women and those in late stages) and their caregivers face substantial unmet needs across physical, psychological, social, and spiritual domains, which highlight the need for a more integrative care model. Palliative care, defined as holistic, person-centered care for individuals with life-limiting illnesses, is increasingly recognized as particularly relevant in PD, from early to terminal stages. However, its implementation in neurology remains limited, notably due to persistent misconceptions, and delayed or absent referrals. This narrative review therefore aims to equip PD care teams with a clearer understanding of palliative care principles and their applicability to PD, by synthesizing emerging evidence in neuropalliative care, and providing practical recommendations for integration into routine neurological practice. Building on the specificities of quality of care for chronic conditions, optimal neuropalliative care in PD involves regular (re)assessment of symptoms and priorities, effective management of the chronic-palliative interface, good communication, continuity of care (including neurological care until the end of life), and a multidisciplinary network of professionals working both in the community and in specialized clinics, while leaving room for the involvement of caregivers. Far from being “the end of the road”, neuropalliative care is a strategic and compassionate response to the evolving complexity of PD, which ultimately enhances quality of life, supports families, and reinforces the neurologist’s pivotal role in longitudinal, person-centered care.

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author
; ; ; ; ; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Disease trajectories, End-of-life, Neuropalliative care, Palliative care, Parkinson’s disease, Uncertainty
in
Journal of Neural Transmission
volume
132
issue
11
pages
24 pages
publisher
Springer
external identifiers
  • scopus:105012259673
  • pmid:40736568
ISSN
0300-9564
DOI
10.1007/s00702-025-02989-x
language
English
LU publication?
yes
id
66d72e47-db86-4574-8a9f-5fcec3ec2869
date added to LUP
2026-01-27 09:59:22
date last changed
2026-01-28 03:00:01
@article{66d72e47-db86-4574-8a9f-5fcec3ec2869,
  abstract     = {{<p>Parkinson’s disease (PD) is now recognized as a multisystem, heterogeneous neurodegenerative disease with fluctuating trajectories and complex symptom profiles. Despite therapeutic advances, many patients (particularly women and those in late stages) and their caregivers face substantial unmet needs across physical, psychological, social, and spiritual domains, which highlight the need for a more integrative care model. Palliative care, defined as holistic, person-centered care for individuals with life-limiting illnesses, is increasingly recognized as particularly relevant in PD, from early to terminal stages. However, its implementation in neurology remains limited, notably due to persistent misconceptions, and delayed or absent referrals. This narrative review therefore aims to equip PD care teams with a clearer understanding of palliative care principles and their applicability to PD, by synthesizing emerging evidence in neuropalliative care, and providing practical recommendations for integration into routine neurological practice. Building on the specificities of quality of care for chronic conditions, optimal neuropalliative care in PD involves regular (re)assessment of symptoms and priorities, effective management of the chronic-palliative interface, good communication, continuity of care (including neurological care until the end of life), and a multidisciplinary network of professionals working both in the community and in specialized clinics, while leaving room for the involvement of caregivers. Far from being “the end of the road”, neuropalliative care is a strategic and compassionate response to the evolving complexity of PD, which ultimately enhances quality of life, supports families, and reinforces the neurologist’s pivotal role in longitudinal, person-centered care.</p>}},
  author       = {{Auffret, Manon and Borovecki, Fran and Heim, Beatrice and Jost, Wolfgang H. and Odin, Per and Stocchi, Fabrizio and Trost, Maja and Vérin, Marc}},
  issn         = {{0300-9564}},
  keywords     = {{Disease trajectories; End-of-life; Neuropalliative care; Palliative care; Parkinson’s disease; Uncertainty}},
  language     = {{eng}},
  number       = {{11}},
  pages        = {{1727--1750}},
  publisher    = {{Springer}},
  series       = {{Journal of Neural Transmission}},
  title        = {{Far from being the end of the road : taking a closer look at neuropalliative care in Parkinson’s disease}},
  url          = {{http://dx.doi.org/10.1007/s00702-025-02989-x}},
  doi          = {{10.1007/s00702-025-02989-x}},
  volume       = {{132}},
  year         = {{2025}},
}