Sharing Current Scottish Practice

Rosebery End of Life Care and Choices

Author(s)

Marilyn Higham

“I have a Right to End of Life Care That Respects my Wishes”

Standards of care for Dementia in Scotland (2011)

This poster will present the development of Roseberry End of Life Care and Choices: A person-centred end of life care plan for people with dementia, their carers and their nurses.

A pilot study was conducted within an NHS in-patient mental health specialist unit for women experiencing stress and distress from advanced dementia, including in the last stages of their illness.

Quality improvement with co-production methodology was used to develop and test the approach and documentation. Quantitative data and qualitative feedback including focus groups and questionnaires captured the experience and impact on people with dementia, carers and staff.

A two-part document was devised, a care plan where carers share information with staff regarding the person and Information for You to support staff sharing information about the dying process with carers. A three-stage process of care and support has been tested and adopted, an initial meeting, use of the care plan at end-of-life and a follow-up phone call to the carer 3–4 weeks after a death.

Results indicate person-centred and relationship-centred care have improved with nurses enabled to provide timely highly-personalised end-of-life care that considers personal preferences and choices, dignity and control, whilst carers feel treated as partners in care.

Socioeconomic status is associated with place of death in patients known to hospice services

Author(s)

Sarah Bowers; Maire O'Riordan; Mike MacFarlane; Emma Carduff

Background: Place of death is a priority to patients and relatives at the end of life with most choosing home, yet 58% of Scottish deaths occur in hospital. Studies suggest that those living in deprivation are less likely to die at home.

Aim: To describe the relationship between place of death and socioeconomic status for patients known to a hospice over a 5-year period.

Method: Scottish Index of Multiple Deprivation (SIMD, 2016) was used to group. Place of death was examined for each deprivation quintile (DQ). Deaths where location was unknown or in a nursing home were excluded.

Results: Of 4585 patient deaths 41% died at home, 40% in the hospice and 19% in hospital. Deaths at home were lower in the most affluent group. There was a highly significant direct relationship between DQ and the proportion of patients dying in the hospice. There was an inverse correlation between DQ and the proportion dying in hospital.

Conclusion: Overall, this study demonstrates that patients from more deprived areas, known to the hospice, are still more likely to die in hospital than their more affluent counterparts. This is potentially inequitable, does not necessarily reflect need and has resource implications.

Testing a WISeR approach to community palliative care

Author(s)

Susanne Gray; Jackie Mearns; Cathy Quinn; Katie Clark; Alison McGill

Many people in Scotland who could benefit from palliative and end of life care (PEOLC) do not receive it. The Strategic Framework for Action on PEOLC aims to ensure that by 2021 everyone who needs palliative care will have access to it.

We sought to reduce variability in community palliative care (all settings and conditions), testing ways to develop a consistent response, that gives people and their families the opportunity to identify and discuss their concerns and plan ahead if they wish.

Aiming to promote equal opportunities for holistic person centred assessment via the introduction of a model that identifies and streams people with palliative care needs offering a proactive, coordinated, integrated model for palliative or any complex care that is fit for the future. We worked with GPs and health and social care services using a 'Plan-Do-Study-Act' (PDSA) approach to test and refine a new weekly multi-disciplinary team resource and allocation meeting (Weekly Integrated Standard Response - WISeR palliative care). We used focus groups and observation to collect qualitative data for evaluation.

Outcomes included:

ž improved integrated working

ž improved access to assessment and services

ž crisis prevention

ž improved communication.

Further testing is required to confirm results and evaluate the impact on patients and carers as well as staff.

The barriers and facilitators to implementing the Carer Support Needs Assessment Tool (CSNAT) in a community palliative care setting

Author(s)

Zoe Horseman (University of Edinburgh); Dr Anne Finucane (Marie Curie Hospice); Libby Milton (Marie Curie Hospice)

Family carers play a central role in community-based palliative care. However, caring for a terminally ill person puts the carer at increased risk of physical and mental morbidity. The validated Carer Support Needs Assessment Tool (CSNAT) provides a comprehensive measure of carer support needs and is intended for use in community palliative care. The CSNAT creates an opportunity for carers to discuss their needs with healthcare professionals, facilitating the provision of appropriate support. A recent audit demonstrated poor use of the CSNAT in a Scottish community specialist palliative care service despite training and support.

Research Aim: To identify barriers and facilitators to implementation of the CSNAT in a community specialist palliative care service.

A qualitative study was undertaken, involving interviews with 12 palliative care nurse specialists from two community nursing teams in Lothian, Scotland.

Data analysis is ongoing. The poster will present the results, identifying factors which enable and prevent the use of the CSNAT in a community palliative care setting. Recommendations for improving the acceptability of the CSNAT will be developed.

Findings from this study have the potential to enhance engagement with the CSNAT, make it more congruent with current nursing practice, and improve the experience of carers of people approaching the end-of-life.

The decision to undergo palliative chemotherapy: how do patients feel about the decision making process at the Edinburgh Cancer Centre?

Author(s)

Bethany Gwyther; Dr Morven Shearer; Professor Allan Price; Dr Joanna Bowden

The aim of this service evaluation conducted at the Edinburgh Cancer Centre (ECC) was to assess how people felt, with hindsight, about the decision to have palliative or curative chemotherapy for lung or gynaecological cancers. The SURE test, comprising four questions, was adapted for retrospective use with patients who had completed their treatment and had returned to the oncology clinic. A fifth question relating to regret was added. Questionnaires were completed in conversation with a medical student.

29 patients completed the questionnaire (13 males, 16 females.) Patients generally reported high levels of certainty that treatment had been the right choice, both at the time of the decision, and upon treatment completion. Most also reported feeling that they were supported well with the decision. The lowest scoring areas related to understanding of treatment risks and benefits.

It is reassuring that most patients felt confident in the decision making around treatment. Others' work locally has revealed that regret often comes late, and it is possible that findings would have been different if patients had been surveyed later. Poor understanding of risks of treatment could reflect a number of scenarios, and warrants exploration with future work.