Background ‘There is currently a significant gap between preferred and actual place of death, with over half not dying where they would choose, too many dying in hospital and too few in their own home, care home or hospice’ Gold Standards Framework. Aim To perform a network-wide audit of the Preferred Place of Death (PPD) of patients known to SPC to ascertain whether their wishes were fulfilled. Method: Data was collected from SPC clinicians regarding last expressed PPD, actual place of death, and reasons for discrepancy for all patients known to SPC teams (communities, hospices, hospitals) across the Mount Vernon Cancer Network. The study period was 3 months. Outcomes 708 consecutive patients were included – 320 (45%) died in hospital, 179 (25%) at home, 172 (25%) in hospice, 28 (4%) in care home and 9 (1%) unknown. (a) Outcomes where PPD known: 426 (60%) had a PPD which were 184 (43%) home, 159 (37%) hospice, 53 (13%) hospital, 30 (7%) care home. 349 (82%) achieved their wishes. 77 (18%) died elsewhere due to unexpected deterioration (34), physical condition (14), continuing healthcare delays (13), lack of family agreement (6), no available bed (3), unknown (7). A patient was 5.5 times more likely to die at home. (b) Outcomes where PPD unknown: 282(40%) had unknown PPD. 215(76%) died in hospital, 35(12%) hospice, 18(6%) home, 10(4%) care home, 4(1%) unknown. A patient was 3 times more likely to die in hospital. Conclusion 82% of patients with known PPD achieved their wishes. Physical symptoms and unexpected deterioration were the primary reasons cited for those dying elsewhere. 40% of patients had no known PPD and of these 76% died in hospital. Extension of discussion and documentation of PPD to more patients would increase patient choice and is likely to reduce numbers of patients dying in hospital, and increase deaths at home across this population.
IntroductionFollowing 4 years of community neuro-palliative multidisciplinary teams in Hertfordshire, the gap of a community co-ordinator for newly diagnosed patients with rapidly progressive neurological conditions emerged as a priority.MND71HD30PSP22MSA12CBD4AimsTo assess the impact of an innovative co-ordinator role assessing community neurology and palliative care needs at diagnosis of five rapidly progressive neurological conditions. To examine impact on patient experience, non-elective hospital admissions and place of death.MethodA pathway was developed direct from neurological diagnosis of five rare conditions-Motor Neurone Disease(MND), Progressive Supranuclear Palsy (PSP), Huntingtons Disease (HD), Cortico-basal degeneration (CBD), Multisystem atrophy (MSA). The community co-ordinator assessed their neuro-palliative needs soon after diagnosis, gave information, referred to appropriate community services, and then acted in a clinical consultancy role to staff and patients.ResultsTotal number of patients referred and assessed during January 2012 – May 2013=139The most frequent onward referral was to specialist palliative care=75 (54%).31 (22%) have died, 27 (87%) in their preferred place.Eastern Region Public Health Observatory data showed reduction in elective and non-elective hospital admissions for people with these diagnoses by over 50% in 1 year. Cost of the co-ordinator post and administrative support is 60k per annum.Patient experience –a baseline questionnaire revealed gaps in current service. Comparison after 1 year of the service will be presented. Anecdotally it has made huge improvements to many patients' lives and improved knowledge and skills of community staff, which can be applied in managing patients outside this project.ConclusionsThe model appears to have been successful providing improved quality of co-ordinated community clinical care while reducing hospital costs. It is cost-effective and provides timely specialist support, working through existing workforce. It could be a model for managing other rare long term conditions, and to increase access to palliative care for other non-malignant conditions.
This poster presentation will report on all these projects in action with updated results at time of publication.
Methods A staff survey was conducted to gain views and user experiences of comfort observations. This paper survey was disseminated to different wards by SPCT members or ward 'end of life care' champions. Results There were 42 respondents from different wards representing a range of healthcare professionals. Qualitatively the survey showed that staff felt empowered by the comfort observations to proactively monitor dying patients; 'it enabled me to continue to monitor the patient without causing distress or discomfort'. They facilitated a structured approach and appropriate escalation. Staff felt patient care, and care of loved ones improved as a result; 'Early recognition of pain. Reason for agitation and can be treated without delay. Although EWS is stopped, the continuous monitoring of patient is possible via comfort obs and alert system. Better end of life care experience for patient and relatives'. 100% of respondents felt the comfort obs were user friendly and would recommend them to other wards. Conclusions Acute trusts are an important provider of end of life care. Comfort observations support staff to deliver proactive excellent end of life care through routine monitoring of domains of comfort and escalation of care when indicated. A robust training programme to support their use is being planned in addition to conducting a retrospective audit to assess if their use leads to improved frequency of assessing patient and carer needs.
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