Preferences of Patients With Parkinson’s Disease for Communication About Advanced Care Planning

Tuck, Keiran K.; Brod, Lissa; Nutt, John G.; Fromme, Erik K.

doi:10.1177/1049909113504241

Cited by 62 publications

(79 citation statements)

References 19 publications

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“…12,13 Discussions regarding prognosis, options for support, and advance care planning were common themes that were identified in qualitative studies on patient and family experiences with Parkinson disease. [12][13][14] Patients expressed a sense of social isolation due to symptom progression and concern regarding their future cognitive and functional states. 12 Some patients wanted to maintain a sense of autonomy by making decisions about their future care while their cognition remained intact.…”

Section: Parkinson Diseasementioning

confidence: 99%

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Palliative Care in Neurology

Robinson

Holloway

2017

Mayo Clinic Proceedings

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Palliative medicine is a specialty that focuses on improving the quality of life for patients with serious or advanced medical conditions, and it is appropriate at any stage of disease, including at the time of diagnosis. Neurologic conditions tend to have high symptom burdens, variable disease courses, and poor prognoses that affect not only patients but also their families and caregivers. Patients with a variety of neurologic conditions such as Parkinson disease, dementia, amyotrophic lateral sclerosis, brain tumors, stroke, and acute neurologic illnesses have substantial unmet needs that can be addressed through a combination of primary and specialty palliative care. The complex needs of these patients are ideally managed with a comprehensive approach to care that addresses the physical, psychological, social, and spiritual aspects of care in an effort to reduce suffering. Early discussions about prognosis, goals of care, and advance care planning are critical as they can provide guidance for treatment decisions and allow patients to retain a sense of autonomy despite progressive cognitive or functional decline. With the rapid growth in palliative care across the United States, there are opportunities to improve the palliative care knowledge of neurology trainees, the delivery of palliative care to patients with neurologic disease by both neurologists and nonneurologists, and the research agenda for neuropalliative care.

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Section: Parkinson Diseasementioning

confidence: 99%

“…12 Some patients wanted to maintain a sense of autonomy by making decisions about their future care while their cognition remained intact. 14…”

Section: Parkinson Diseasementioning

confidence: 99%

Palliative Care in Neurology

Robinson

Holloway

2017

Mayo Clinic Proceedings

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“…Patient opinions on the optimal timing of care planning are more variable in neurological diseases, although many of the principles still hold, offering patients the option to engage in early discussions regarding goals of care that are recommended across neurological diagnoses including glioblastoma, ALS, and PD 38,39…”

Section: Advance Care Planning In Hdmentioning

confidence: 99%

Palliative Care in Huntington Disease: Personal Reflections and a Review of the Literature

Tarolli

Chesire

Biglan

2017

Tremor and Other Hyperkinetic Movements

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“…Patients with PD and carers desire holistic, multidisciplinary care beyond just the disease. Many wish to discuss end-of-life care 7. SPC helps in a variety of health conditions,8 but few, if any data, relate to the experience of patients and carers accessing SPC.…”

Section: Introductionmentioning

confidence: 99%

Impact of specialist palliative care on coping with Parkinson’s disease: patients and carers

Badger

Frizelle

Adams

et al. 2018

BMJ Support Palliat Care

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Specialist palliative care helped patients and carers cope with advanced Parkinson's disease. Specialist palliative care is a complex intervention that acknowledges the complex and holistic nature of Parkinson's disease, enabling health in some domains despite continued presence of pathology. These exploratory findings support the utility of this approach for people living with Parkinson's disease.

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Preferences of Patients With Parkinson’s Disease for Communication About Advanced Care Planning

Abstract: Preferences regarding end-of-life discussions vary. Consequently, neurologists should ask patients about their preferences for this information and offer discussion periodically.

Cited by 62 publications

References 19 publications

Palliative Care in Neurology

Palliative Care in Neurology

Palliative Care in Huntington Disease: Personal Reflections and a Review of the Literature

Impact of specialist palliative care on coping with Parkinson’s disease: patients and carers

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