Objective: To ascertain whether people with PD, PSP and MSA have a PPOD

Background: Achieving a PPOD is felt to be an important factor in providing good end of life care. Fewer people with PD die in their own homes than age matched populations (1) or people with other neurological disease (2)(3). The current literature has not explored whether PPOD is important or whether expressing a PPOD makes a difference to actual place of death.

Method: A mixed methods study exploring the palliative and end of life care needs for people with PD, PSP and MSA. The quantitative element was drawn from the UK National bereavement surveys 2012-15 with 1008 people dying from PD, 44 people dying from PSP and 23 people dying from MSA. The qualitative element was derived from forums and interviews with bereaved carers (n=36)

Results: A PPOD had been expressed by 36% of those who died from PSP, 32% of those dying from MSA and 26% of those dying from PD. This is comparable with people dying from CVD or ‘other’ causes but significantly less than for people dying of cancer (53%); PD vs cancer OR 0.309 (0.267-0.357). When PPOD was expressed home was the PPOD in the majority of cases (74% for PD/PSP and 88% MSA). Expressing a PPOD did affect actual POD as people who died at home were significantly more likely to have expressed a PPOD than those who died in other locations (Home vs hospital OR 6.42 (4.205-9.810), home vs care home OR 8.17(5.496-12.158), home vs hospice OD 5.10(1.869-13.897). Of those who expressed a PPOD of home, only 44% died at home. The qualitative data explains the reasons for this mismatch, illustrating the difficulties with diagnosing dying, carer exhaustion, and inadequate home care provision for the end of life.

Conclusion: A minority of people with PD, PSP and MSA had expressed a PPOD. It is difficult to know whether this is because it was not important or because they were never asked. The qualitative data suggests both factors were apparent. It is clear that if a person has a PPOD this should be openly discussed and recorded as this makes a PPOD much more likely to be achieved. However, carers often feel guilt if a PPOD is not achieved and so realistic conversations should be had about PPOD at the time of planning. If a person does not die in their PPOD this has a negative impact on bereaved carers’ grief.

References: (1) Snell, K., Pennington, S., Lee, M. and Walker, R. (2009) ‘The place of death in Parkinson’s disease’, Age and Ageing, 38(5), pp. 617-619. (2) Sleeman, K.E., Ho, Y.K., Verne, J., Glickman, M., Silber, E., Gao, W., Higginson, I.J. and Project, G.C. (2013) ‘Place of death, and its relation with underlying cause of death, in Parkinson’s disease, motor neurone disease, and multiple sclerosis: A population-based study’, Palliative Medicine, 27(9), pp. 840-846. (3) Pubic Health England (2018) Deaths Associated with Neurological Conditions in England 2001 to 2014. London: Public Health England Publications, P.

« Back to 2019 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/preferred-place-of-death-ppod-in-pd-psp-and-msa/