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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: June

The SPPC Annual Conference in 2018 featured 48 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:

Inspiring Leadership leading self; leading with others in a palliative care setting


Claire O’Neill, Jane Miller, Susan Jackson, Fiona Wylie.


Pilot and evaluate a leadership programme for band 6 Palliative Care Clinical Nurse Specialist’s working within NHSGGC acute and hospices. The programme focussed on the leadership behaviours set out in the NHS Scotland Leadership Qualities Framework.


The programme aims included to build participants personal effectiveness, resilience and create a network of support, develop leadership behaviours consistent with an enabling culture and deliver a quality improvement project demonstrating impact on patient and families’ care experience. Participants attended master classes on:

• Myers Briggs and Working with Differences

• Quality Improvement Methodology

• Influencing skills

• Strategic landscape for Palliative Care.

They undertook 360 review with feedback sessions linking with PDPs, Action Learning Sets, shadowing opportunities and completed a work-based QI project.

The programme was evaluated using a combination of quantitative and qualitative data collection methods.


The evaluation data indicates that this was a very effective programme. The line manager / key person qualitative data supported the views of the participants by giving tangible examples of the impact of the programme at individual, patient, team and organisational levels.


The outstandingly positive evaluation of the programme supports the view there is a need for this programme to continue.

Investigating the need for palliative care among people who are homeless in Scotland


Joy Rafferty

A scoping exercise assessed the need for palliative care among people who are homeless in Scotland. Published homelessness data estimated the number of homeless people in Scotland. Literature review examined morbidity and mortality, challenges of providing palliative care to homeless people and their views on palliative care.
There were 34,100 homelessness applications in Scotland in 2016/17 though the true number of homeless people is likely double this. The literature shows complex palliative care needs with homeless people having significantly worse symptoms at end of life than other populations. Challenges to providing palliative care described in the literature include uncertain prognostication, complex trauma, chaotic lifestyles, service design and delivery and few available options. In published research homeless people expressed fears of dying anonymously, alone, on the streets and not being found and of being forgotten after death. Self-determination was vital, with concerns admission would cause a loss of freedom and control. Psychosocial care, staff availability, continuity and developing trusting relationships were essential. The importance of staff reaching out was expressed.
We need to consider how palliative care services can be more accessible and responsive to the needs of people who are homeless in Scotland.

Kilbryde Hospice to Kirriemuir Nursery: See how our garden grows!


Karen Kilpatrick; Melissa Woodhouse

Kilbryde Hospice Day Services, providing a rehabilitative model of care, was keen to introduce therapeutic horticulture to promote independence and promote wellbeing. Equally, a local nursery wished to establish a link to the hospice. A joint project to promote an intergenerational partnership was established in April 2018 to establish and maintain the external gardens in the new hospice grounds. Epstein & Boisvert (2006) reported the benefits of an intergenerational space that is shared whilst Kaplan, (1995) acknowledges the use of natural environments to be beneficial in promoting wellbeing. This project endorses Scottish Government Health& Social Care Standards (2017) to encourage hospice staff to provide activities that patients can participate in either indoors or outdoors.
To provide social and therapeutic horticulture to Kilbryde Hospice Day Services patients improving their wellbeing through active or passive gardening. Involving the nursery children allows a working relationship to develop, expanding their knowledge of plant life and develop their social skills within the hospice environment.
• Weekly visits by nursery children to hospice for 30 minutes
• No more than 8 children in a group at the one time
• Children accompanied by 2 or 3 staff members
• Kirriemuir staff fully responsible for the children on their visit
• Hi-visibility vests provided by nursery to be worn by children
• Children and patients to maintain 3 main garden areas; patio, front garden and rear garden.
• Therapeutic horticulture planned within Hospice Day Services 13-week programme
• Provision of one clinical support worker and 2 volunteers per session
• Patient choice to attend the session
• All levels of mobility catered for
• Fundraising Team at Kilbryde arranged for donation of plants and soil.
6 patients with regular horticulture participation
• IPOS scores decreased in feelings of anxiety and worry in 3 patients
• IPOS scores improved in feeling depressed in 3 patients
“I like going to help everyone at the hospice” HL
“I loved all the plants because some were coloured” JD
Kilbryde Patients:
“Kids make us laugh with what they say and do” AMH
“Both patients and children enjoy mixing. Long may it continue!” TH
Nursery Staff:
“Promotes the bond between adults and children working together” MW
“Children have developed a sense of responsibility” JA
Kilbryde Volunteers:
“Loved listening to kids asking patients about plants” ME
“Watching the children interested in the flowers and sharing tasks, they brightened up the patient’s day.” MI
• Improved outcomes on measuring feelings of anxiety, worry, depression
• Apparent improvement in social isolation
• Introduction of therapeutic horticulture has now been embedded into Day Services 13-week
• A planned seasonal project has extended to throughout the year with periodic adjustments
• Exclusively positive feedback from all 4 sources
• Nursery visits have increased to twice a week as a result.
Epstein,A.S. & Boisvert,C. (2006) Let's Do Something Together Journal of Intergenerational Relationships. 4 3 87-109
Kaplan S. (1995) The restorative benefits of nature: Toward an integrative framework. Journal of Environmental Psychology. 15(3):169-182.
Scottish Government (2017) Health & Social care Standards. My support, my life. Crown Copyright

Lessons learned from integration of IPOS into the Community: Building relationships and sharing learning and understanding between Specialist and Generalist Palliative Care Services


Neill Cree; Dr G Dunnet; Dr S McConnell; Dr J McKane; Janice Renfrew; Dr C Sime; Dr John Thompson; Dr Margaret Thompson

The aim of the project was to embed the use of the Integrated Palliative Outcome Scale (IPOS) within the Inverclyde Community Primary Care teams. IPOS is a validated and reliable tool used to identify unmet needs for people living with a life limiting illness. IPOS use within primary care is an innovative strategy. IPOS use in Specialist Palliative Care Services is well established.
We identified key barriers and challenges to collaborative inter-disciplinary working within Generalist and Specialist services. We acknowledged the different priorities in managing patients with life limiting illnesses and focused on innovative solutions to translate and integrate the use of IPOS into the Community.
We had to establish project momentum by supporting community staff. We developed case-based reflections, education and mentorship programmes to enable practices to embed IPOS development whilst supporting teams to develop clinical governance solutions to allow maximal impact of IPOS. We trained IPOS champions in the community to allow learning to be shared.
We identified key barriers and developed multifaceted solutions for the interaction and communication between Generalist and Specialist Palliative Care Services during integration of a new tool in an environment where Generalists have competing demands, specific to their specialty.

Lifetime in Pebbles


Shona Crain; Mairi-Ann Higgins; Ishbel Murdoch

The poster displays a creative project that tells the story of the growth of the Accord Hospice in Paisley where a large pebble mosaic has been hand painted by patients, families, volunteers, staff and local school children. The creation of the mosaic has involved the therapeutic benefits of art and is a reflection of the community the hospice is embedded in. It is installed in the gardens of the Accord Hospice.

Making a Difference – The Provision of Palliative and End of Life Care within a Community Hospital


Lynne Hoffin; Linda Kerr; James Mack; Dr Jillian Nicoll; Dr Kathleen Sherry; Morag Thomson; Karen Wilson

Patients in their last year of life use 30% of all acute hospital bed days. Evidence shows that over 50% of Scotland’s annual deaths take place in hospital. About 50% of NHS complaints relate to end of life care.

Community hospitals such as the Biggart Hospital play an important role in the provision of healthcare. They are at the forefront of shifting the balance of care from acute services into the community and they are ideally placed to develop a range of services focussing on the provision of palliative and end of life care.

MacMillan ward is a 23 bedded which specialises in palliative, end of life and Hospital Based Complex Continuing Care for patients with the need for frequent, sometimes not easily predictable, clinical interventions.

During a planned Leadership Walk round it was identified that there appeared to be issues with patients’ treatment being deemed unnecessarily escalated who were approaching the end of their life. Other factors identified during the transfer process were the lack of treatment plans, recognition or assessment of the palliative identity or needs of these individuals. These complexities and lack of recognition of palliative care needs were having an impact on establishing and implementing an individual’s wishes in regard to their plan of care.

This project focused on enhancing the experience for patients and their families with generalist palliative care, death, dying and bereavement needs, through the provision of specialist palliative care support/education for nursing and medical staff within MacMillan Ward.

Poster Abstracts of the Month: March

The SPPC Annual Conference in 2018 featured 48 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:

Building on the Best – Improving palliative and end of life care in acute hospitals in Scotland


Kirsty Boyd; Deans Buchanan; David Gray; Trisha Hatt; Mark Hazelwood; Barbara Kimbell

The Need for Action

At any point nearly 1 in 3 hospital beds in Scotland is occupied by someone who will die within 12 months. There is a need to refine processes and to support staff to deal with this large and often complex area of work. There is also a need to prepare and support people and their families to cope with the hospital experience.

What We Did

As part of a UK-wide programme funded by Macmillan a project manager was employed by SPPC. She worked with ward staff in 3 Scottish acute hospitals with the aim of scoping practice and supporting identification and testing of improvements. The project manager also sought input from people, relatives and public. The work was guided by local palliative medicine leads but led by staff of other specialities.


The commitment of general acute staff was strong, but the pressured environment meant work was slow. To varying extents wards identified and tested changes in process and/or practice. A suite of resources to prompt and support staff/individual conversations was developed and tested. Some ward processes were significantly changed in order to improve communication within the staff team.

Catastrophic Bleed Box - a practical resource within an acute setting?


Heather Tonner


Terminal haemorrhage (bleeding from a major blood vessel), although uncommon, causes significant distress for all involved when this catastrophic event occurs. The literature highlights the importance of good nursing care to lessen this distress. Harris et al (2011) suggest the management of terminal haemorrhage should focus on non-pharmacological, simple approaches.


In response to traumatic events associated with catastrophic bleeding in an acute medical ward a catastrophic bleed box was developed for use across a District General Hospital.


  • To facilitate discussion with ward teams regarding the care of patients at risk of terminal haemorrhage
  • Identify patients at risk
  • Enable sourcing of a catastrophic bleed box, including dark towels
  • Provide support for staff involved in this distressing situation.


Feedback from staff that have used this resource has been sought as means of evaluation. The feedback has been extremely positive. Staff like a tangible way of preparing for a catastrophic terminal bleed. Qualitative comments imply that staff feel more confident having dark towels to hand to camouflage the blood and concentrate on calmly supporting the patient and family.

Collaborative working between renal and palliative care: The impact of an integrated service on symptom burden, advanced care planning and place of death for patients with advanced chronic kidney disease managed without dialysis.


Sarah Cathcart; Claire A Douglas; Lorna Frame; Maureen Lafferty; Joanne Sloan; Louisa Stage; Miles Witham


For elderly patients with comorbidity and chronic kidney disease (CKD), dialysis results in significant time spent in hospital and may not offer improved survival, compared to those managed without dialysis.

Renal and Palliative Medicine professionals developed an integrated Renal Supportive Care (RSC) service for patients with chronic kidney disease (CKD) managed without dialysis. The focus is care of CKD, symptom management and Advanced Care Planning (ACP).

The impact on symptoms and care pathways was evaluated over a 30-month period. Data collected included RSC input, Palliative Care Outcome Score (POS), ACP information and mortality data.


Those patients with RSC input had improved symptom burden. They were more likely to have improved documentation and electronic communication of ACP conversations than those without RSC input. This included Preferred Place of Care (PPC) and DNA CPR information. At end of life, those patients who had PPC documentation were significantly more likely to die in the community. Those without, were more likely to die within an acute hospital.


The integrated Renal Supportive Care team achieved symptom management and Advanced Care Planning for many patients with CKD managed without dialysis and may help avoid acute hospital admissions at end of life.

Drug therapy for delirium in terminally ill adults: A Cochrane review


Bridget Candy; Anne Finucane; Louise Jones, Baptiste Leurent, Elizabeth Sampson; Paddy Stone; Adrian Tookman


Delirium is a complex neuropsychiatric syndrome common in palliative care, occurring in up to 88% of patients in the weeks or hours preceding death. Our Cochrane review on drug therapy for delirium in 2012 identified one trial (Candy et al. 2012). New trials have been conducted and an updated review is now recognised as a Cochrane priority.


To evaluate the evidence from randomised controlled trials (RCTs) examining the effectiveness and safety of drug therapies to treat delirium in adults with a terminal illness.


We searched for RCTs comparing any drug treatment with any other treatment for delirium in terminally ill adults.


We retrieved 9,431 citations. Four studies were included in the final review. All trials were vulnerable to bias, most commonly due to small sample size or incomplete outcome data.


This review identified four trials. It found low quality evidence examining the impact of drug therapy on delirium symptoms and adverse events in terminally ill adults. Results for each comparison were based on single studies. Undertaking trials on delirium in this patient group is methodologically complex. Only one study compared drug therapy with placebo. This limited our ability to answer our review questions

End of Life Care is not Black and White


Rosemary Cairns; Jacqueline S Nicol; Laura Thomson

This poster illustrates the implementation of a Macmillan palliative care education resource in the acute setting. Originally developed for care home staff, this was adapted and tested in an acute setting within NHS Lothian.

The resource, Foundations in Palliative Care, comprises four modules: introduction to palliative care, communication, symptom management and bereavement. Education was delivered by the Education Lead for End of Life Care and a Senior Clinical Nurse Specialist, Hospital Palliative Care Team, four days delivered within two weeks. This was supported by Senior Management and Charge Nurses which enabled ten registrants to commit and attend all four modules.

Evaluation was extremely positive. Follow up visits from the course facilitators found participants had bridged the theory/ practice gap.

Enhanced Palliative Care for Generalists (EPCG)


Paul Baughan; Neil Pryde

Following feedback on the Scottish Palliative Care Guidelines, where there were comments that broader and more detailed guidance would be helpful, a proposal was taken to Macmillan to support the development of a training course for generalists.

The EPCG course will be an educational program based on the well-established model of a comprehensive, evidenced, manual underpinning a two-day interactive course.

We are preparing a pre-course manual, and an interactive 2-day course. This will include lectures, small group workshops, skill stations, and “real life” scenarios. There will be an assessment at the end.

The course will adhere to the principals of the NES framework for Palliative and End of Life Care and follow the general structure and the drug regimes of the Scottish Palliative Care Guidelines. The project has support from HIS, NES, and the SPPC.

A steering group has been established that will oversee the direction and co-ordination of the project. Class Professional Publishing will provide support and guidance throughout the project. Writing of the manual will be divided into seventeen sections. There will be a separate group to develop the interactive course. Finally, the materials will be peer reviewed, and the course piloted, prior to release.

Poster Abstracts of the Month: February

The SPPC Annual Conference in 2018 featured 48 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:

01. A Critical Investigation of the Outcomes of Specialist Palliative Day Services on Specific Components of Attendee Quality Of Life: A Mixed Methods Study


Belinda Dewar; Jean Rankin; Elaine Stevens

This was a two-phase, convergent mixed methods study. The 20-week quantitative phase utilised the EQ5D-3L, Hospital Anxiety and Depression Scale, Life Attitude Profile-Revised and Rosenberg Self-esteem Scale (n=21) to measure aspects of quality of life. The exploratory qualitative phase employed individual Emotional Touchpoint interviews (n=15) to investigate the lived experience of attending Specialist Palliative Day Services (SPDS). Convergent findings revealed death anxiety was triggered at point of referral and continued for some across the study period. Convergent findings identified that self-esteem and mood were stable and remained within normal parameters, while partially convergent findings established that functional ability and symptoms were moderately affected by illness and did not vary in severity. Partially divergent findings determined meaning in life varied over time and was low in some across the study period. SPDS supports normal self-esteem, mood and acceptable levels symptom burden. However, SPDS does not appear to have an impact on meaning in life in all attendees. Consequently, SPDS did not have a positive impact on overall quality of life of all participants. To remedy this SPDS should be provided through a rehabilitative framework which focuses on providing expert palliative care within each domain of quality of life. Research should further explore the components of meaning in life and how SPDS may support the existential well-being of all attendees.

02. A road less travelled


Maria Banks; Jill Graham; Andy McClafferty; Ruth McGillvrary; Billy McGuigan; Chris Richford; Heather Robertson.

This poster is a visual representation of a 2-year improvement project on recognising dying and delivering end of life care in NHS mental health complex care wards in Renfrewshire. Driven by the desire of staff to continuously improve this area of practice, in line with the dementia strategy and standards and the Strategic Framework for Action.

In the wards a baseline survey was undertaken with multidisciplinary teams to identify challenges encountered in palliative and end of life care. Survey results informed the introduction of:

• 2 x Palliative Resource Nurses per ward who were trained and supported

• Training packages for multidisciplinary staff

• An adapted SBAR to record ACP

• SPAR to facilitate improved care in collaboration with ACCORD Hospice.

Initial evaluation of PRN role and SBAR are very positive. SPAR has recently been implemented and initial feedback following training and early use is positive, however it too early to fully evaluate.

The project supported:

• development of skills and knowledge

• integrated working between specialist mental health and palliative care supporting shared


• discovering a common language to improve MDT and family and carers communication.

Ongoing work will include ward environment, staff support and resilience.

03. A 'Vicious Cycle' of Heart Failure Care


Dr Karen Higginbotham; Em Prof Martin Johnson; Prof Ian Jones


The aim of this study was to explore the decision-making process between healthcare professionals and patients in an acute medical setting when it came to making end of life decisions.


A constructivist grounded theory was conducted over a 12-month period in a District General Hospital in the North West of England. A purposeful sample of 15 nurses, 11 doctors and 16 patients were recruited from the acute medical setting. Data was collected using semi structured interviews and focus groups. The interviews were recorded and transcribed and data was analysed using the constant comparison and QSR NVivo.


Four theoretical categories emerged from the data to explain how healthcare professionals and patients negotiated the process of decision making when considering end of life care. These four categories; signposting symptoms, organising care, being informed and recognising dying were found to revolve around a core category ‘vicious cycle of care’ which was fast paced, turbulent and time limited. This cycle was found to disable the process of decision making between the healthcare professional and patient resulting in missed opportunity for the patient to transition to palliative care.


The emerging theory ‘vicious cycle of care’ offers an explanation as to why decisions were not made by healthcare professionals to transition patients with end stage heart failure to palliative care. Further work needs to be undertaken with healthcare professionals and patients to map out a ‘cycle of care’ which identifies key stages in the terminal stage of heart failure and correctly signposts the patient to the right healthcare care professional for intervention. Further research is required with General Practitioners to further explore the barriers to providing end of life care for heart failure patients.

04. Bereavement in Prisons


Hannah Campbell-McLean

In November 2017, funding was provided from Good Life, Good Death Good Grief to host an event in HMP Kilmarnock which provided the population of HMP Kilmarnock with the opportunity to remember loved ones who had died. The event was called 'absent friends'. This was delivered by means of a coffee morning and was organised by NHS and various Serco staff members including chaplaincy services, education and the Serco senior management team. Outside speakers were invited in to talk about death and dying including Scottish Families Affected by Alcohol and Drugs, Seasons for Growth and the MacMillan Palliative Care co-ordinator for prisons.

Conversations were facilitated at small tables and provided a safe environment for prisoners to have open and honest conversations about people that they have loved and lost and allowed for prisoners to reflect on the way that made them feel while in prison. This event was very well received by the prison population and it was evident that there is not enough support in HMP Kilmarnock for prisoners who have been bereaved or indeed suffered loss. This then lead for further funding from the NHS Endowment Fund for monies for training for staff in the Seasons for Growth programme

05. Brief Engagement and Acceptance Coaching for Community and Hospice Settings (the BEACHeS Study): Protocol for the development and pilot testing of an evidence-based psychological intervention to enhance wellbeing and aid transition into palliative care


Anne Finucane; David Gillanders; Sue Millington; Sabrina Norwood; Juliet Spiller; Jenny Strachan; Brooke Swash; Nicholas J Hulbert-Williams


Globally, cancer affects millions of individuals, with a mortality rate of over 8 million per year. Although palliative care is often provided outside of specialist services, many people do, at some point in their illness journey, require support from specialist palliative care services. This transition can be a time of uncertainty and fear and there is a need for effective interventions to meet the psychological and supportive care needs of patients with cancer at this time in their illness. While Acceptance and Commitment Therapy (ACT) has been shown to be effective across diverse health problems, robust evidence for its effectiveness in palliative cancer populations is not extensive.


This study uses mixed-methods, in a single case experimental design, to pilot test a novel intervention for this patient group. Approx. 14 patients will be recruited from two hospices in England and Scotland. Participants will receive five face-to-face manualised sessions with a psychological therapist. Sessions are structured around teaching core ACT skills of Openness, Awareness and Engagement, as a way to deal effectively with challenges of transition.


The current study is the first investigating ACT with terminally ill patients at the beginning of their transition from curative to palliative treatment.

06. Building Blocks of End of Life Care


B Jackson, B Johnston, J McPeake

The aim of the review was to ascertain what information and resources bereaved families and friends required before the death of a relative or friend in an acute hospital setting. This rapid systematic mixed method review was conducted from November 2017 to March 2018. The following six data bases were searched: CINAHL, MEDLINE, EMBASE, PUB MED, PsychINFO AND WEB of Science. The initial search generated 432 articles, then 26 full text papers were read of which 9 met the inclusion criteria. The selected papers were then evaluated using Hawker et al (2002) and no papers were excluded following the assessment. The themes were extracted using techniques of conceptual analysis and ideas mapping Popay et al (2006). Communication at end of life was found to be variable even within the same clinical area. Relative and friends were expecting health care staff to be available 24/ 7 and have the skills to deliver end-of-life care as it was in an acute hospital. Staff attitudes and beliefs related to patients dying in acute care requires further study.

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


Joyce Sweeney

The WoW Consultation


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


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


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


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.

Strathcarron Hospice “Living Right up to the End” project

Talking about end of life – overcoming the barriers to community engagement.

Death, dying and bereavement are part of life, but are often seen as taboo in modern society and as a result, people miss opportunities to talk about and plan for the end of life. The Scottish Government recognised this in their Strategic Framework for Action for Palliative and End of Life care. A key outcome of the framework is that “People have opportunities to discuss and plan for future possible decline in health, preferably before a crisis occurs, and are supported to retain independence for as long as possible.”

In 2015 Strathcarron Hospice received funding from the Health and Social Care Alliance to find out what would help people to self-manage in the last year of their life so that they feel able to live well right up to the end. The Strathcarron Hospice Community Development Team set out to work with people living with long term conditions and their carers. Our aim was to find out from the people affected what would help them to live well through the challenges of declining health, and to work with them to develop community solutions.

We started by creating an asset map of the resources available in the project areas. This process revealed an array of community groups and activities which we had previously been unaware of.

Initially we identified the groups which had obvious relevance to people living with long term conditions. We approached these groups to ask them to participate in discussion. We encountered considerable reluctance to engage. The group leaders were protective of their members, making a decision on their behalf that the subject matter was too difficult.

Clearly a different approach was required.

We invested time and energy in making ourselves known and trusted in the communities. We attended third sector network events, community meetings, carers forum meetings, even a singing for memories group. We made friends and influenced people. At every opportunity we spoke about “LIVING right up to the End” and our genuine interest in hearing people’s views. We found that the Strathcarron brand was helpful as it was known and trusted, but also a hindrance because people had many misconceptions, and associated it with very end of life.

With the help of some key community players we managed to arrange events in local community venues. We provided tea and cake, and transport if required.

We asked ordinary people who had living or lived experience of the challenges of declining health about what was important to them as they approach the latter stages of life. We also asked them about the barriers to thinking about and planning for the future.

Once we had gained their trust we were overwhelmed by the willingness to share very personal experiences and thoughts.

We invited participants to join groups who would work with us over a period of 4 months to help us to really understand not only what the issues were, but also what they felt would help them. Over the 4 month period we witnessed something remarkable. The participation groups became safe places for discussion of sensitive and difficult subjects. The group supported, encouraged and respected each other.

Individuals who had initially been anxious about engaging with “the hospice” gave us feedback on the experience of being involved in the project.

One participant commented that she was often asked for feedback but had never previously felt her contribution was valuable.

Together we worked through the barriers to thinking about and planning for the future. The group felt that although they knew it was a good thing to do, they didn’t know where to start or what they should be planning for. Some had been given information by health professionals but they felt this was often given at the wrong time, or was in the wrong language. There was a strong feeling that they would not use the internet for “something as important as this” although they were happy to use it for other purposes.

The community development team gathered a large variety of materials and resources related to planning for the future, planning for end of life, and having the necessary but difficult conversations with loved ones about these plans. From these resources the participants agreed the ones which they felt would be most helpful to most people. Some participants liked the national ACP tool and were keen to use it, others felt it was “too formal, you would need professional help to fill that in.”

The resources identified were made available on “pop up information stands” which were provided at local GP surgeries. The group participants were keen to make it clear that there was no need for a professional at the pop up stands. The participants felt they were well placed to listen and respond to questions from the public.

Some of the group participants have become “ambassadors” in their local communities. They actively promote the importance of talking openly about death, dying and bereavement. They seek out venues for the information stand, and suggest changes to the materials provided in response to what they find works well.

The full report of the Living right up to the end project is available here: Living right up to the end report

Strathcarron Hospice community development team continues to explore new ways of supporting communities and individuals to manage the challenges faced in the latter stages of life.

For further information please contact Susan High, tel: 01324 826222

By Susan High, Community Development Co-ordinator, Strathcarron Hospice

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