Deep brain stimulation at end of life: clinical and ethical considerations

Journal of Palliative Medicine, 2019 August 12

Lauren R Sankary, Paul J Ford, Andre G Machado, et al

Questions arise at the end of life concerning how to provide best care for patients with a deep brain stimulation (DBS) device, including its continued benefit or potential complications, yet no published articles provide guidance for hospice providers.  With contributions from hospice physicians, a neurosurgeon, and ethicists, this article provides recommendations to address clinical and ethical challenges in optimizing DBS for patients with Parkinson's Disease nearing the end of life.

Palliative care for persons with Parkinson’s disease: a qualitative study on the experiences of health care professionals

BMC Palliative Care 2019 18:53
Herma Lennaerts, Maxime Steppe, Marten Munneke, et al

The aim of this study was to examine health care professionals’ experiences of potential barriers and facilitators in providing palliative care for people with Parkinson's Disease in the Netherlands.  In daily practice, they struggled to identify persons’ needs due to PD-specific symptoms such as cognitive decline and communication deficits. Timely advance care planning to explore the personal preferences for palliative care was identified as an important facilitator. Findings indicate a perceived lack of care continuity, fragmentation of services, time pressure and information discontinuity and a need to improve the knowledge of complex PD.

Fulltext availalbe in BMC Palliative Care

Top ten tips palliative care clinicians should know about parkinson's disease and related disorders

Journal of Palliative Medicine, 2018 21(10)  p.1507-1517
Katz, Maya; Galifianakis, Nicholas B.; Goto, Yuika; et al

A team of Parkinson's Disease and Palliative Care experts assemble practical tips for the care of people with PD. The "Top 10" format emphasizes the most relevant issues to enable PC clinicians to provide optimal care for those suffering with this complex neurodegenerative disease.

Palliative care for those with neurological diseases

Palliative Medicine April 2018 32(4)

This special issue of Palliative Medicine includes research aimed at increasing knowledge in the field of neurological diseases.  It includes the following topics:

• Interventions for informal caregivers of people with motor neurone disease
• Views about assisted dying of people with Huntingdon's disease
• Palliative care triggers in progressive neurodegenerative conditions

Palliative care for Parkinson's disease: Patient and carer's perspectives explored through qualitative interview

Palliative Medicine; Jul 2017; vol. 31 (no. 7); p. 634-641
Fox, Siobhan; Cashell, Alison; Kernohan, W George; Lynch, Marie; McGlade, Ciara; O'Brien, Tony; O'Sullivan, Sean S; Foley, Mary J; Timmons, Suzanne

The aim of this study was to explore the palliative care and related issues most affecting people with Parkinson's disease and their families and to examine their perceptions about and understanding of palliative care. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and with advancing illness.  The authors suggest that an holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by people with Parkinson's disease and their carers.

Fulltext available in Palliative Medicine

Available in print in Arthur Rank Hospice Library, Cambridge

Preferences of patients with Parkinson's disease for communication about advanced care planning

American Journal of Hospice & Palliative Medicine, February 2015, vol./is. 32/1(68-77)

Tuck KK, Brod L, Nutt J, Fromme EK

Despite shortening life, Parkinson's disease (PD) is often not considered "terminal" and uncertainty exists about when to discuss end-of-life planning. A survey was sent to patients with PD assessing attitudes toward the timing and initiation of discussions regarding their disease.  It was found that preferences regarding end-of-life discussions vary.  The authors suggest that patients should be asked about their preferences for this information and offer discussion periodically.