Palliative care in people with idiopathic Parkinson's disease who die in hospital

Abstract

For those dying in hospital, there are few previously documented end-of-life care discussions with patients or their relatives. The use of end-of-life pathways and access to specialist palliative care is variable. Following the Neuberger report, the Liverpool Care Pathway is to be replaced with individual end-of-life care plans. It is important to engage patients, and their relatives, in decision making regarding preferences at the end of life.

Experiences of advance care planning in Parkinson's disease and atypical parkinsonian disorders: a mixed methods systematic review

“…This uncertainty often meant that discussions occurred in response to a crisis, e.g. hospital admission [31,34,36], at the start of cognitive decline or the terminal phase [15,28]. The need for discussion therefore depends on the individual and disease characteristics including diagnosis, symptom progression, age, values, personality, attitude, disease state and care needs [6,27,32].…”

“…They were published after the date of our electronic search and included after screening for relevance. A total of 27 studies were included, of which 15 were qualitative [5][6][7][23][24][25][26][27][28][29][30][31][32][33][34] and 12 were quantitative [14,15,[35][36][37][38][39][40][41][42][43][44].…”

Palliative care and Parkinson's disease: Meeting summary and recommendations for clinical research

“…As a progressive, incurable, symptomatically devastating lifelimiting disease [46], it is remarkable to note the low rates of hospice use in PD patients [46,47]. In fact, the majority of those with PD die outside of their homes, and advance care planning is absent in almost all PD patients who die in hospitals [48]. Studies show that most (but not all) PD patients want prognosis and treatment information early, and many expect their healthcare providers to bring up these issues [49].…”

RADPAC-PD: A tool to support healthcare professionals in timely identifying palliative care needs of people with Parkinson’s disease

“…In palliative care, ACP is important for providing information and support tailored to a persons' needs and wishes. In a small study of patients with PD, only a few had had end-of-life care discussions [23]. Furthermore, a majority of people with PD die in a care home or hospital according to a report by Public Health England [24].…”