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Palliative care in people with idiopathic Parkinson's disease who die in hospital
  1. Richard W Walker1,
  2. Deepta Churm1,
  3. Felicity Dewhurst1,
  4. Maria Samuel2,
  5. Amy Ramsell2,
  6. Claire Lawrie2,
  7. Jessica Hill2,
  8. Christopher J D Threapleton2,
  9. Brian Wood1 and
  10. William K Gray1
  1. 1Department of Medicine, North Tyneside General Hospital, North Shields, UK
  2. 2The Medical School, Newcastle University, Newcastle-upon-Tyne, UK
  1. Correspondence to Professor Richard Walker, Department of Medicine, North Tyneside General Hospital, Rake Lane, North Shields, Tyne and Wear NE29 8NH, UK; Richard.walker{at}nhct.nhs.uk

Abstract

Background The UK National Institute for Health and Clinical Excellence guidelines state that palliative care options for people with Parkinson's disease (PD) should be discussed.

Aims To investigate whether palliative care guidelines are adhered to for people with PD who die in hospital.

Setting/participants The medical notes of all people with a diagnosis of idiopathic PD who were living in two adjacent areas of northeast England and who died over a 3-year period were examined. Demographic data and specific information regarding events around the time of death were recorded.

Results For the 236 patients identified, the average age at death was 82.8 years. Of these patients, 110 (46.6%) died in hospital, 56 (23.7%) at home, 59 (25.0%) in a care home and for 11 patients (4.7%) the place of death was not recorded. For those who died in hospital, only three patients, and seven relatives of patients, had had a recorded discussion with a clinician regarding their preferred place of death and only 15 (13.6%) were referred to a specialist palliative care team. Forty-six patients (41.8%) were placed on the Liverpool Care Pathway.

Conclusions 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.

  • Neurological conditions
  • Chronic conditions
  • Clinical decisions
  • Communication

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