Background Progressive neurological conditions (PNC) are associated with high symptom burden and complex psychosocial needs. These needs are well recognised in patients with motor neurone disease (MND), but less so in patients with other PNC despite their similarities. Progressive communication difficulties and cognitive impairment make it critical to have early discussion of their wishes for future care.
This study explores the palliative care needs of these patients and whether a neuropalliative advance care planning (ACP) service might improve end-of-life care.
Method The study investigated patients with a non-MND PNC who were referred to a neuropalliative specialty doctor between October 2020 and June 2021. Records were scrutinized for symptoms, management plan and ACP discussions.
Results 38 patients were identified, the majority of which had either Parkinson’s disease (60%) or Multiple sclerosis (21%) with other conditions seen less commonly. Complex needs meant 69% had symptoms requiring medication changes or referral to other allied health professionals. Only 5% of patients had an ACP in place before palliative care involvement. Of the remainder, 71% had this completed by the specialty doctor, which was achieved over an average of 3.3 visits. The 4 patients who died within the study period all had an ACP in place, died at their preferred place of death, with access to anticipatory medication.
Conclusion This study confirms that patients with PNC have complex, unmet palliative care needs requiring multidisciplinary team input and early ACP discussion. Palliative care involvement improved symptom burden and end of life care for patients. Further analysis of acute admissions and qualitative scrutiny of service users regarding ACP discussions will inform and improve future service delivery.
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