The PAN-Care Project Development and testing of a comprehensive care planning service to enable patients with end stage pancreatic cancer die at home Department of Pain and Palliative Care Department of Cancer Experiences Research

Pancreatic Cancer THE FACTS

FEASIBILITY OF THE STUDY 189 new patients diagnosed with pancreatic cancer were admitted to 5 WCMICS hospitals during this period, of who 103 lived in the WCMICS area These figures do not include patients who were treated as out patients or Treated in a non WCMICS hospital, but living in a WCMICS area

Death Trends England Wales

Model of variations of place of death. Gomes B, Higginson I J BMJ 2006;332: ©2006 by British Medical Journal Publishing Group

Recommendations from the National End of Life Programme in the United Kingdom Key factors to enable individuals to die in their preferred place of death Strong commissioning and clinical leadership Clearly defined access to 24hr cover (this includes the provision of night nursing services) Use of nationally recognised drivers that attract payment Flexible budgets and care packages Use of nationally recognised tools or their local equivalent Use of facilitators and coordination of care across boundaries Training to support staff delivering end of life care

Night Nursing Models

Aim: This programme will test the feasibility and sustainability of a comprehensive care planning service for patients with advanced pancreatic cancer patients residing in the WCMICS area

3 Phases over 24 months Phase 1 –A retrospective case note review –Primary Pancreatic cancer inpatients or to day oncology at the Western Hospital ( ) who have since died. –contextual data against which the study team can compare health service utilisation, documented symptoms, social and emotional problems and patient place of death against preferred place of death –Review of Mercy Community Palliative Care notes where available

Phase 2 A. Literature search and development of study resources B: The night nursing model We strongly recommend the use of registered nurses as used by other international night nursing models. The use of a registered nurse allows for the administration of medications and completion of certain procedures such as insertion of lines etc. that cannot be undertaken by a nurse’s aid. Recruitment via Seeking expression of interests through key organisations such as PCV / CNSA From participating hospitals’ nurse bank services Though nursing pools in community palliative care teams and Royal District Nursing Services.

Phase 2 -Prospective study -Consecutive patients with primary pancreatic cancer and a carer of their choice, presenting to or attending any WCMICS hospitals or treated by a community palliative care team within the WCMICS catchments area Inclusion criteria –Patient: over 18, informed consent, English speaking / complete study requirements with interpreter, have proxy consent provided by the next of kin or main carer when the patient is unable to provide consent. –Carer: over 18, informed consent; English speaking / complete study requirements with interpreter; identified by patient as main carer or identified in the medical record as the next of kin –*the costs of the interpreter will be carried by usual budget allocation and not by PANCARE. Exclusion criteria –Risk assessment undertaken by a community palliative care teams suggest a risk to staff; patients who are living alone and therefore ineligible to opt to die at home; patients who are non English speaking and unable to meet study requirements with the help of an interpreter.

* Provision of night nursing service will be flexible based on patients and families individual needs i.e. some patients may only require a couple of days, others may require longer periods and some may need to use this service on an intermittent basis) **The budget makes provision for 6 nights of nursing ( with standard 91/2 hours shifts) but this will be flexible ***All night nurses will be provided with an emergency plan. The night nurse may have to contact a community palliative care team, palliative care consultant or GP if the patient develops severe pain or difficult symptoms. The provision of a night nurse does not preclude the admission into hospital / hospice if appropriate for the patient care.

Phase 3: Evaluation of service model Patient demographic characteristics including symptom profile unmet supportive care needs; anxiety, depression and distress; Carer demographic data Carer anxiety, depression and distress. A validated night nursing needs assessment tool will be amended for use in this study7. Carer satisfaction data with the night nursing service The night nurses perception of the efficacy of the service log of all interventions delivered to patients and carers during the night service. Palliative care teams’ satisfaction with the coordination service. The night nurses and palliative care teams to evaluate the training program content for relevance, comprehensiveness and preferred mode of delivery. Service utilisation and data compared with retrospective case note records to explore the potential of the night nursing service to reduce health service utilisation