Barriers and facilitators to advance care planning implementation for patients with neurodegenerative diseases among Indian physicians: a mixed-methods analysis.
Barriers and facilitators to advance care planning implementation for patients with neurodegenerative diseases among Indian physicians: a mixed-methods analysis.
Where did the research take place?
The study site has not been established. Author addresses may differ from where the research occurred.
New Delhi, IN · Author affiliation
All India Institute of Medical Sciences, New Delhi, India.Location evidence
London, CA · Author affiliation
Department of Clinical Neurological Sciences, University of Western Ontario, London, Canada.Location evidence
Toronto, CA · Author affiliation
Division of Neurology, Department of Medicine, University of Toronto, Toronto, Canada.Location evidence
US · Author affiliation · country only
Division of Community Internal Medicine, Geriatrics, and Palliative Care, Mayo Clinic, Rochester, MN, USA.Location evidence
Anand, IN · Author affiliation
Zydus Hospital, Anand, Gujarat, India.Location evidence
Bengaluru, IN · Author affiliation
Department of Neurology, National Institute of Mental Health and Neurosciences (NIMHANS), Bengaluru, India.Location evidence
Mumbai, IN · Author affiliation
Department of Neurology, PD Hinduja Hospitals, Mumbai, India.Location evidence
Deoghar, IN · Author affiliation
Department of Neurology, All India Institute of Medical Sciences, Deoghar, India.Location evidence
Varanasi, IN · Author affiliation
Department of Geriatric Medicine, Institute of Medical Sciences, Banaras Hindu University, Varanasi, India.Location evidence
Thiruvananthapuram, IN · Author affiliation
Department of Neurology, Sree Chitra Tirunal Institute of Medical Sciences and Technology, Thiruvananthapuram, India.Location evidence
Chennai, IN · Author affiliation
Department of Neurology, Madras Medical College, Chennai, India.Location evidence
IN · Author affiliation · country only
Department of Neurology, Institute of Medical Sciences, Banaras Hindu University, Banaras, India.Location evidence
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Original abstract
BackgroundAdvance care planning (ACP) is a process that enables individuals to define and communicate their goals and preferences for future medical care, especially in chronic, progressive illnesses such as Parkinson's disease (PD) and other neurodegenerative disorders. Despite its recognized benefits in improving patient autonomy and end-of-life care outcomes, ACP remains underutilized in India. This study aimed to assess the attitudes and practices of Indian neurologists and geriatricians regarding ACP, identify perceived barriers, and suggest strategies to improve uptake.MethodsA mixed-methods approach was employed in this study. In the first phase, a structured online survey was distributed to physicians across India who cared for patients with PD and neurodegenerative disorders. The survey collected demographic information and ACP-related practices, attitudes, and perceived barriers. In the second phase, in-depth qualitative interviews were conducted with a purposively sampled subset of respondents, and inductive thematic analysis was performed to gain deeper insights.ResultsA total of 140 physicians participated in this survey. Although 93.6% acknowledged the necessity of ACP, only 25% felt they had sufficient time, and 20% felt they had adequate resources for meaningful discussions. Lack of legal clarity (52.1%), training (16.4%), and institutional support (65.7%) were commonly cited as barriers. Qualitative interviews with 15 respondents revealed additional challenges, such as concerns about provoking hopelessness and denial from patients and families. The interviews also revealed that physicians confused ACP with advanced treatment strategies or treatment of advanced disease. Nevertheless, some physicians shared positive experiences, noting that early personalized discussions improved trust and communication, which could facilitate uptake of ACP.ConclusionsWe identified several systemic, professional, and physician-perceived sociocultural barriers that hinder ACP implementation. To bridge this gap, legal reforms, structured ACP training, and public awareness initiatives are necessary. Tailored culturally sensitive models involving multidisciplinary teams may improve ACP adoption within the Indian context. Future research could explore whether alternative terminology, such as 'future care planning', may improve clarity and acceptance in this context and avoid confusion with advanced therapies or treatment of advanced disease.