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Sharing Current Scottish Practice

This blog provides an opportunity for people to share examples of current Scottish palliative care practice that might be of interest to the palliative care community more widely. If you know of work underway that might be relevant for sharing on our website, please get in touch.

Poster Abstracts of the Month: January

Each month we focus on a few of the posters displayed at a previous SPPC Annual Conference. This month we look at five posters from the 2017 conference...

The Inside Out Hospice Approach

Author(s)

Joyce Sweeney

The WoW Consultation

Author(s)

Dr Sheonad Laidlaw; Dr Emma Carduff

Computers are now common place in general practice. Studies have been conducted looking at the relationship and interaction between doctor, patient and computer, and show that the doctor-patient relationship changes as each relates to the computer.

Marie Curie is in the final stages of implementing an Electronic Patient Records (EPR) and Patient Administration System (PAS), via EmisWeb, enabling the recording of real time patient data on the ward by means of Workstations on Wheels (WoWs).

A qualitative study was conducted at the Glasgow hospice using a questionnaire exploring the staff’s feelings about using the WoW in a consultation; their perception of how the patient and their family would feel; how they think that the computer will affect the consultation; and the positives and negatives of using a computer with their patients.

Results show that staff are hesitant and nervous of using WoWs by the bedside, seeing it as a physical barrier to verbal and non-verbal communication, potentially impeding the rapport – and ultimately the relationship between HCP and patient. Staff see the benefit of using computers to capture patient centred data but not at the expense of their relationship with the patient.

Using poetry to describe the essence of person-centred engagement in palliative care

Author(s)

Dr Erna Haraldsdottir

Background: A small fund from Good Life, Good Death, Good Grief for a To Absent Friend activity allowed a hospice to run a poetry workshop for staff exploring the essence of engaging with dying patients in a person-centred way.

Aim: To provide a forum for staff whereby using the medium of art allowed for expressing, in a different way, person centred care engagement in the palliative care context.

Method: A poet facilitated 2-hour workshop for five members of staff in a hospice which included sharing of stories of person centred engagement with patients. Objects were used to reflect the essence of the engagement in each story and poetry written that further reflected the essence of the engagement.

Results: Seven poems were written which will be presented in the poster and all describing the uniqueness of person-centred engagement.

Evaluation: Evaluation was very positive with staff finding the workshop empowering, insightful and the creative expression therapeutic.

Using the Gold Standard Framework "trigger questions" to improve medical inpatient anticipatory care planning

Author(s)

Louise McKenna; Gillian Mulholland; Lise Axford

The Gold Standards Framework (GSF) Centre in End of Life Care “trigger questions” are used by GPs to identify patients approaching the end of life (when death is foreseeable within 12 months). Our aim was to assess if the GSF “trigger questions”, which identify general and/or clinical indicators of decline, could be used in the inpatient medical setting.

A retrospective review of electronic case notes using GSF “trigger questions” was performed using cardiac arrest call data (a proxy measure of the dying patient) from four general medical wards in Hairmyres Hospital, Lanarkshire. Between August-December 2016, 18 patients having peri-arrest/cardiac arrest events had general and/or clinical indicators of decline, indicating approaching end of life. Eight patients survived and had anticipatory care plans placed; 7 subsequently died. A second retrospective analysis was performed between February-May 2017, during which there were 5 peri-arrest/cardiac arrest events. Of these, 3 patients had GSF indicators of decline; 2 patients then had anticipatory care planning, prior to their death.

This project identifies the need to improve the recognisation of the medical inpatient approaching the end of life amongst inpatient clinicians. It suggests the use of community GSF “trigger questions” may help improve inpatient anticipatory care planning.

Working together to enable person-centred palliative and end of life care

Author(s)

Janice Logan; Dr Erna Haraldsdottir; Dr Annabel Howell; Gerry Finnan; Dr Pam Levack

Background: Education initiative that enables registered nurses from general health care settings to explore, reflect and build on their experience of palliative and end of life care practice. Classroom teaching and shadowing members of specialist palliative care team at a hospice and palliative care unit are included.

Method: Underpinning principle is the integration of experience with theory through reflection on practice and embedding of new learning into practice. Small cohort of nurses (8) undertake 3 x classroom teaching days and 2 x days clinical shadowing. Utilising the belief from adult education theory that reflection can turn experience into learning, 6 x follow up days, over 6-month period, enable the participants to construct and organise new knowledge and understanding.

Findings: One cohort is progressing with follow-up days. It is evident that the rewards of learning in this way include the depth of insight generated with associated energy and motivation contributing to new ways of working and practice improvement. Evaluation has been positive with participants finding the course engaging/inspiring, ‘discussion very helpful key, learning points identified around symptom control, ‘benefit of shadowing experience included observing a palliative specialist communicate effectively with a terminally ill patient’.

Next steps: A second cohort will commence in September.


Poster Abstracts of the Month: November

The SPPC Annual Conference in 2017 featured 46 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on five of these:

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.

Poster Abstracts of the Month: October

The SPPC Annual Conference in 2017 featured 46 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on five of these:

Patients, carers and healthcare professionals’ perceptions and experiences of managing metastatic spinal cord compression: a qualitative multiple case study

Siew Hwa Lee; Lynn Kilbride; Robin Gran; Catriona Kennedy

Background: Metastatic spinal cord compression (MSCC) is an oncology emergency with a poor prognosis if treated late. Guidelines exist to improve patient outcomes, however the outcome for many remains poor.

Aim: To report the findings of patients, carers and healthcare professionals’ perceptions and experiences of managing MSCC.

Methods: A qualitative multiple case study design. Participants were recruited from an acute cancer centre and primary care in Scotland. Three focus groups (n=25) and interviews with healthcare professionals (n=7) were carried out in phase one. Phase two semi-structured interviews include patients (n=8), carers (n=6) and healthcare professionals (n=42). Patients and carers were interviewed at two time points. Data were analysed thematically.

Results: In phase one, healthcare professionals were ‘negotiating the care-pathway’ as existing guidelines lack a strong evidence base. Phase two revealed a constant movement between uncertainty and enduring inconsistencies (of information, treatment and advice), which results in a struggle to find a balance.

Conclusions: Patient’s preferences are central to managing symptoms where life expectancy is limited. A theory of collaborative decision-making is proposed to reduce uncertainty and facilitate decision-making. The key constructs are: awareness of signs and symptoms of MSCC, collaborative decision-making, prioritising and maximising life and end of life care.

Person-centred care – at the heart of what we do

Katy Simpson

Background: Meeting the holistic, social, spiritual, psychological and physical needs of our inpatients, community patients, their families and carers. Through the use of creative activities, we can provide a robust emotional support service. All of our therapeutic services are provided within The Margaret Kerr Unit. A study carried out by The Canadian Counselling and Psychotherapy Association found that art therapy encourages the development of healthy coping strategies1. This supports our ongoing ‘Public Health Palliative Care’ campaign by raising awareness and engaging with members of the community outwith The Margaret Kerr Unit and palliative care service.

How? By providing services to inpatient and community based patients, it provides social stimulation through enabling them to meet new people and for those out with the unit, it helps break down the barriers and stigma about the Unit and the service we provide. Our events are held weekly and bi-annually to coincide with Dying Awareness Week.

Findings: Patients and families feel many of their needs are well supported alongside the clinical care they are receiving. The uptake of these activities continues to grow each week due to discussions being generated on social media around death and dying awareness.

1 https://www.ccpa-accp.ca/psychological-benefits-of-art-therapy/

Proactive Discharge - a person-centred approach to wellbeing within a hospice day service

Lynsay Bain; Janice Allan; Ann-Majella McFadden

Previous feedback demonstrated patients felt unprepared for discharge from a palliative care day service, Kilbryde Hospice (KH) staff sought a more effective method to support patients through the discharge process. A new Wellbeing Group (WG) was created.

The WG focused on enhancing knowledge and self-empowerment using a person centred approach. Using self-management techniques, enabling and empowering patients to make shared decisions and understand realistic medicine(1). Creating an inclusive and positive discharge process. This reflects the Scottish Governments vision of practising Realistic Medicine putting patients at the centre of decision making. Outcomes were evaluated through the use of evaluation, Patient Activation Measure (PAM)(2) and Views on Care (VoC)(3)

(1) Scottish Government (2017) Realising Realistic Medicine, Chief Medical Officer Annual Report, https://beta.gov.scot/news/realising-realistic-medicine/ accessed on 31/08/17

(2) Hibbard, J., Gilburt, H., (2014) Patient Activation Measure, Supporting people to manage their health, An introduction to patient activation, The Kings Fund Patient Activation Measure, https://www.kingsfund.org.uk/publications/supporting-people-manage-their-health accessed on 31/08/17

(3) Witt J, Murtagh FEM, de Wolf-Linder S et al (2013) Views on Care Introducing the Outcome Assessment and Complexity Collaborative (OACC) Suite of Measures A Brief Introduction Kings College London, https://www.kcl.ac.uk/lsm/research/divisions/cicelysaunders/attachments/Studies-OACC-Brief-Introduction-Booklet.pdf p15 accessed on 31/08/17

'Putting Activity Back into Life: The Inception of a Wellbeing Group'

Sarah Mitchell

The Day Hospice team at St Vincent's Hospice (SVH) has been developing an approach which integrates rehabilitation, enablement, self-management and self-care into the holistic model of palliative care. This has led to the team delivering a 'Wellbeing Group', which is the first of its kind in a hospice setting.

The group combines exercise, support and education, which reflects the well-established and effective format of cardiac and pulmonary rehabilitation. It aims to allow patients to maintain/increase functional fitness, become more active, less sedentary and improve their knowledge of their illness therefore encouraging self-management.

Six palliative care patients attended an 8 week, 2-hour outpatient programme at SVH. The exercise component consisted mainly of circuit-based exercise and the 8 educational components covered topics such as coping with pain, breathlessness and fatigue.

At the end of the programme, the outcome measures (5 functional fitness tests) showed that every patient had improved their functional fitness in at least one aspect. Feedback from the patients was positive and showed they were starting to be more active despite their condition.

The initial Wellbeing Group achieved its aims. The team acknowledge that future programmes should evaluate the impact of the educational component to assess the potential impact on self-management in palliative care patients.

Relational elements of end of life anticipatory care planning (ACP): implementation in Dumfries and Galloway

Jacqueline Kandsberger

This study explores how ACP is currently operationalised in Dumfries and Galloway.

GPs from various districts and levels of urban-rural classification have been recruited. ACP data are being extracted from the medical records of decedent patients and GPs are completing a survey soon after the death of each patient, detailing the different elements of ACP discussions in each case and the associated relational and structural barriers.

After the first 5 months of the study 64 surveys on expected deaths have been collected across 18 GPs. ACP is a coherent process to GPs, however, time is a barrier to implementation and there is insufficient feedback for reflexive monitoring of the process. In 36% of cases patients were open to and capable of discussing ACP and in 67% family members were involved. Specific treatment wishes and personal relationships that influence care are examples of elements most often discussed, while cultural and other values or spiritual beliefs were almost never part of ACP. In 47% of cases information from ACP discussions changed the GPs’ care plan and recommendations at least to a small degree. 72% of patients had a KIS with varying levels of completion and effects on dying in their preferred place of death.

Poster abstracts of the month: September

The SPPC Annual Conference in 2017 featured 46 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on five of these:

Palliative and end of life care in the community

Author(s)

Robert Sanders; Michelle Church; Paul Baughan

How the Living Well in Communities team - part of Healthcare Improvement Scotland's Improvement Hub - will support six Health and Social Care Partnerships across Scotland to improve the identification and care coordination of people with palliative care needs, fulfilling commitment one of the Strategic Framework for Action for Palliative and End of Life Care.

Each test site will consider ways to improve identification of people with a palliative need, develop anticipatory care planning and test community based models of care that increase opportunities for both generalist and specialist palliative care in the community.

The improvement programme will run for two years and learning from the tests of change will be shared during the lifetime of the programme in the form of learning assets and events.

Palliative and end of life care research in Scotland 2006 – 2015: A scoping review

Author(s)

Anne Finucane; Emma Carduff; Jean Lugton; Stephen Fenning; Bridget Johnston; Marie Fallon; David Clarke; Juliet Spiller; Scott A. Murray

Background: The Scottish Government set out its 5-year vision to improve palliative care in its Strategic Framework for Action 2016-2021. This includes a commitment to strengthening research and evidence based knowledge exchange across Scotland. A comprehensive scoping review of Scottish palliative care research was considered an important first step.

Method: Five databases were searched with relevant MeSH (Medical Subject Headings) terms and keywords; additional papers authored by members of the Scottish Palliative and End of Life Care Research Forum were added.

Results: In total, 1,919 papers were screened, 496 underwent full text review and 308 were retained in the final set. The top three areas were experiences and/or needs; services and settings; and physical symptoms. 58 papers were concerned with palliative care for people with conditions other than cancer – nearly one fifth of all papers published.

Conclusion: The findings reveal a considerable increase in palliative care research output over the last decade when compared with a similar Scottish review in 2006 and the 151 papers identified in a review of Irish palliative care research in 2013. The Scottish Research Forum in Palliative care will now disseminate key findings to clinicians, service managers and policy-makers to improve the reach and quality of palliative care.

Palliative care in the ICU setting

Author(s)

Dr Caroline Burke; Dr Niamh Feely; Dr Patricia Sheahan

A quality improvement project looking at the number of deaths in the ICU setting in a peripheral hospital in Kerry, Ireland in 2016 with regard to the prevalence of referrals to the Palliative Care Team and analysis of the cases where palliative care referral may have improved patient care. The problematic nature of providing expert palliation in critical and acute settings has been well recognised.

What is the definition of a "good death"? A significant number of seriously ill patients undergo overly aggressive management, inadequate pain control and suffer as a result of poor communication. There is huge variation in the withdrawal and withholding of therapy in European ICUs. This study was a retrospective chart review. The number of deaths in the ICU in UHK in 2016 was quantified at 40. Charts were analysed for data: Was the death expected or unexpected? If expected was the Palliative Care Team involved? If palliative care was not involved could they have improved care? Was there a missed opportunity for palliative input? 35 deaths were deemed to be expected. Of the 35 patients whose deaths were expected there were 9 incidences of Palliative Care Team involvement. There were 8 missed opportunities for Palliative Care Team involvement.

Palliative care from diagnosis to death: developing a rationale

Author(s)

Murray SA; Kendall M; Mitchell G; Moine S; Amblas-Novellas J; Boyd K

Early palliative care may prolong life as well as improve its quality, but it is frequently only started in the last weeks or days of life and largely for people with cancer. Its huge potential to minimise and prevent pain and distress across illnesses is not realised. This poster shows how early palliative care may be triggered for people living and dying from different conditions. It also points out the elements of palliative care that might often be relevant for people at different points in their illness. Palliative care might be triggered by non-physical needs which may alter greatly as the illness progresses.

Palliative intent treatment for head and neck cancer: an analysis of local practice and outcomes

Author(s)

Finn Begbie; Catriona Douglas; Fiona Finlay; Jenny Montgomery

Management of head and neck cancer is a complex area and there is often significant morbidity associated with treatment. Management options are divided into those given with curative intent and those given with palliative intent. Palliative treatment, sometimes described as best supportive care, can involve a wide variety of treatments. There is little consensus, and indeed a paucity of literature, on which palliative treatments should be provided for primary head and neck cancer and predicting outcome remains a grey area. The present study sought to delineate local practice and outcomes in patients treated with palliative intent in terms of survival, treatment received and associated morbidity in order to better inform treatment decisions in the palliative management of head and neck cancer.

Poster abstracts of the month: August

The SPPC Annual Conference in 2017 featured 46 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on six of these:

Introduction of a 7-day Clinical Nurse Specialist service, a partnership approach

Author(s)

Libby Milton; Dot Partington; Liz Barker; Niall Kieran

Background: A joint hospice approach to expand the Clinical Nurse Specialist Service, enabling access to nurse specialist palliative support 7 days per week. This supports existing NHS services at weekends, providing additional palliative care expertise to patients, families and professionals and integrating with the Marie Curie Nursing Service. Existing funding was re-allocated to test this model prior to embedding into business as usual.

Aim: The service targeted inequity of provision of specialist palliative care out of hours and reduce avoidable admissions at weekends.

Methods: The CNS service was delivered over 7 days, offering telephone advice and support +/- a home visit. A mixed-methods methodology was used to analyse service use and outcomes of the pilot. Stakeholder, healthcare professional and service user surveys were carried out to review service acceptability and quality. Analysis of activity levels was used to assess the impact on the service. Economic analysis was undertaken to estimate potential savings from implementation of the model.

Results: The evaluation evidenced improved quality outcomes for patients and a change in hospice inpatient usage. Significant reduction in admissions to hospital or hospice with a positive return on investment. Patients and carers had a service satisfaction rating of 94%.

Conclusion: The integrated service model demonstrates that investment in coordinated specialist palliative care services across seven days, delivered in partnership, results in positive outcomes in quality of care and health economics.

Is palliative care appropriate for people with major stroke?

Author(s)

M Kendall; E Cowey; GE Mead; M Barber; S Borthwick; K Boyd; C McAlpine; DJ Stott; SA Murray

Background: Case fatality after total anterior circulation stroke (TACS) is high. Our objective was to describe the experiences and needs of patients and carers, and to explore whether, and how, palliative care should be integrated into stroke care.

Methods: Mixed-methods. We recruited a purposive sample of people with TACS from three Scottish stroke services, and conducted serial, qualitative interviews with them and their informal and professional carers at six weeks, six months and one year. Interviews were transcribed for thematic and narrative analysis. A data linkage study of all TACS patients admitted to these services over six months recorded case fatality, place of death and readmissions.

Findings: Data linkage (n=219) showed that 57% of TACS patients died within six months. We conducted 99 interviews with 34 patients and their informal and professional carers. Patients and carers faced death or a life not worth living. Those who survived felt grief for a former life. Professionals focussed on physical rehabilitation rather than preparation for death or limited recovery. Future planning was challenging. ‘Palliative care’ had connotations of treatment withdrawal and imminent death.

Interpretation: Major stroke brings likelihood of death but little preparation. Realistic planning with patients and informal carers should be offered, raising the possibility of death or survival with disability. Practising the principles of palliative care is needed, but the term “palliative care” is unhelpful.

Is Scotland ready to create its own day of the dead?

Author(s)

Rebecca M Patterson; Mark A Hazelwood

Aims and background: This work aimed to test whether, in Scotland, a national community-based festival of storytelling and remembrance is a culturally acceptable way of building individual and community resilience in dealing with loss.

Social and personal support mechanisms are important in helping people to cope with bereavement, yet religious and/or community-based support networks are non-existent for many. People want to support others through bereavement, but often struggle to know how. Rituals of remembrance can build solidarity, yet many traditions relating to the expression of loss have faded. Improving experiences of bereavement is part of a public health approach to palliative care.

Design, methods and approach taken: A clear approach to developing the festival was established, drawing on authors’ previous work, relevant literature, and experiences of bereaved people and bereavement specialists. To Absent Friends (TAF), a people’s festival of storytelling and remembrance was planned for 1-7 November 2014 and 2015. Carefully designed resources including website, film, leaflet and participation ideas were produced to encourage participation. These were promoted via the professional and personal networks of the authors and media. Quantitative and qualitative data for evaluation of TAF 2015 was gathered via online survey of participants; structured questionnaire to event organisers; web and social media metrics; direct observation.

Results: In 2015 over 5000 people participated, from a broad variety of organisations and demographics. 1.75 million were exposed to the festival via the media. 98% of survey respondents reported taking part was a positive experience. Qualitative responses indicate that participation was of deep significance for many.

Conclusion/Lessons learned: The festival is an acceptable approach and enthusiasm exists in Scotland to create a time of year when remembering dead loved ones is socially accepted and supported within mainstream culture.

"Living Right up to the End" What people with long term conditions want to support them to plan ahead

Author(s)

Susan High; Dr Sally Boa; Marjory Mackay

National policy encourages people with Long Term Conditions (LTCs) to plan for end of life. People seem reluctant to do this. The “Living right up to the end” project aimed to find out what was important to people in the last year of life in relation to planning ahead, and what would support them to do this.

We held 18 engagement events in local venues. People with LTCs and their carers were asked

- What matters to you when you are living with declining health?

- What prevents you making plans for the future?

Direct quotes were analysed using framework analysis. The findings were verified at two further engagement events

We found maintaining control, having a plan, important conversations and access to appropriate information were what mattered to people

Barriers to planning ahead included cost, lack of information, lack of social support and uncertainty.

We worked with groups of people with LTCs to co-produce an information pop up stand with resources to help with planning ahead and having difficult conversations. The stands have been tested in local venues and manned by volunteers from the local community with personal experience of LTCs.

We are working with people with LTCs to evaluate this intervention.

More Care Less Pathway approach to end of life care

Author(s)

Gerry Finnan

Following the publication of the More Care Less Pathway report The Liverpool Care Pathway (LCP) was withdrawn from use within Scotland by the Scottish Government (SG) in 2014. Later in 2014 the SG published guidance on end of life care Caring for people in the last hours and days of life but no care plan to replace the LCP was introduced. Following consultation with major palliative care groups across Scotland a Strategic Framework for Action on Palliative and End of Life Care was published by the SG early 2016 which stated their commitment to work with partners to ensure that high quality palliative and end of life care is available to all who can benefit from it.

The Care Record for End of Life (CREOL) was developed by the palliative care team within the Margaret Kerr Unit to help achieve high quality accessible end of life care across NHS Borders. The CREOL is a record of care delivered to patients at end of life and is not a tick box exercise or rigid process or procedure to be followed. It can be used to promote discussion of diagnosis of dying between clinicians and the wider multidisciplinary team and promotes clear concise communication between clinicians, patient and family or carers. This poster presents the new document which has been trialled for 12 months in the palliative care unit within Borders General Hospital.

Moving towards a vision of Person Centred Culture (PCC) across the hospice: do all eyes see the same truth?

Author(s)

Tracy Smith (Practice Development Facilitator); Tracy Paton (Charge Nurse); Brigid Lydon (Secretary); Hilary Ford (Hospice Manager)

Background: Over a 2 year period from-2015-2017, Queen Margaret University (QMU) facilitated a programme of practice development with a key group of multi-professional clinical and non-clinical staff. The Person-centred Practice Framework developed and updated by McCormack and McCance in 2016, continues to guide this on-going programme of work.

Aims: The overall aim was to move towards a shared vision of person-centred culture that focused strongly on people’s individual beliefs and values, processes and the care environment.

Methods: Transformational methods demonstrating the principles of practice development (McCormack et al 2013) were used to create and define the person-centred vision and to explore and evaluate person-centred culture. Evaluation methods included staff and patient stories and observations of care and environment. Facilitated events also took place to explore workplace culture, relationships and practices within designated teams.

Results: Measuring culture change is challenging and is on-going. Baseline and repeated evaluation however shows demonstrable change in relation to the physical environment, improved team-working and workplace culture and staff wellbeing.

Conclusion: The person-centred processes that have been used in all aspects of the work have proven to be effective will continue through active facilitation and integration within all areas of the hospice in the future.

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