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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: 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


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


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


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


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


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


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?


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?


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


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


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?


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.

Poster abstracts of the month

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:


Enriching & Improving Experience


Jane Andrew; Elaine Colville; Elizabeth Sanchez-Vivar

A framework to support the learning and development needs of the health and social service workforce in Scotland” (2017) We took an integrated collaborative approach to identify the knowledge and skills required by all health and social service workers in palliative and end of life care. We consulted widely with health and social service workers, palliative care experts, educators and other partners in cyclical co-design approach. The structure and content was informed by evidence gathered from, scoping exercise, rapid review of literature, mapping of existing frameworks, workforce focus groups, online learning needs survey, expert and reference group opinion, workforce consultation events and online workforce consultation. Results: Five domains reflect the core knowledge and skills integral to the delivery of high quality palliative and end of life care. Each domain contains four levels of knowledge and skills. The framework promotes a person-centred, outcomes-focused, human rights-based approach. Conclusions: Integration of health and social care in Scotland means that increasingly teams from different sectors are coming together to provide care and support focussed on people’s needs. The scope and depth of workforce engagement undertaken is a strength of this framework which will support implementation across integrated services.

Football and Absent Friends


Jeanette Byers

Health Promoting Palliative Care Project worked in collaboration with Hibernian Football Club GameChanger Project to host a 'To Absent Friends' event during November 2017, as part of the wider national To Absent Friends Festival. Response from fans was overwhelmingly positive, with over 500 personal tributes collated on posters that were available in the stadium. This demonstrated the value of promoting openness about bereavement in a community setting that is not routinely associated with end of life matters.
The concept is based on community development principles and fits in with Public Health Palliative Care values. The method was simple: provide information about the proposed event on the fans website, then put up posters/pens/BluTack) around the stadium over 2 match days. 130 x A3 sheets are now being preserved in the Club's museum, and a similar event will be run annually by the Club. Scottish Football League Trust is promoting this concept to 42 clubs across Scotland.

Hospital Based Complex Clinical Care


Jeanette Byers; Mairi Johnston

Palliative Care Specialist Nurse and Palliative Link nurses organised an event for ‘To Absent Friends’ (TAF) week. On the 1st November, tables were set up in 5 hospital areas with resources provided by Health Promoting Palliative Care Project (leaflets, memory books, memorial trees, TAF posters, pens etc). Each area was manned for 2 hrs in the afternoon. This allowed communication with staff, patients and visitors so that displays could be introduced sensitively. Staff and visitors were given the opportunity to write in the book or write tags to hang on the tree. One ward area now offers the memorial book all year round for patients and visitors to use.
Following on from the success of this event, the group was keen to further develop its knowledge and skills around health promoting palliative care so workshops were facilitated by Specialist Palliative Care Nurses and the Health Promoting Palliative Care project team. This included workstations where link nurses could become familiar with resources such as Advanced Care Planning cards and Origami. There was also time for discussion and reflection on professional and personal experiences of death, dying and bereavement.
Qualitative data is available from written material and verbal feedback, demonstrating the value of supporting staff as they encourage open discussion about end of life issues within their hospital environment.

Implementing Palliative and End of Life Care Standards in Scottish Prisons


Gail Allan

Background: The Scottish Government’s Strategic Framework for Action on Palliative and End of Life Care shares a vision where palliative and end of life care is available to all including those in Prison. With an ageing prison population, the Scottish Prison Service has to deal with more foreseeable deaths than ever before. This brings new challenges for both prison regimes and prison facilities in providing quality palliative and end of life care for those prisoners.
Aim: Initial aims of project:
ž introductory visits to meet with Prison service and NHS staff to discuss role and introduce them to the standards of care
ž identify prison establishments willing to participate in tests of change
ž work collaboratively with these prisons to identify their palliative population and areas for improvement.
Early Results:
ž delivered sessions on ‘What is palliative and end of life care?’
ž developed Palliative and Supportive Care registers
ž support development of multidisciplinary prison palliative care meetings
ž delivery of Anticipatory Care Planning training to prison and NHS staff
ž process mapping of palliative and end of life service provision in key establishment to bench mark against standards of care and evaluate further areas of change.

Inheritance Books and Health Promoting Palliative Care at the Edinburgh International Book Festival


Danuta Orlowska; Andrew Reeves; Brigid Lyon; Rebecca Patterson; Mark Hazelwood

The Edinburgh International Book Festival attracts audiences from around the world. This year, the Scottish Partnership for Palliative Care, St Columba's Hospice Edinburgh and Marie Curie Hospice Edinburgh were offered space there for a weekend. We used this in several ways:
a) Photographic exhibition: "It Takes a Village" by Glasgow-based photographer Colin Gray in collaboration with the Scottish Partnership for Palliative Care explores the idea that as people’s health deteriorates, care and support come in many guises.
b) Conversations: staff from both hospices spoke to visitors and two "Death Lunches" were facilitated by staff from Marie Curie Hospice.
c) Information sharing: leaflets from Good Life, Good Death, Good Grief and the new ‘origami game’ about Advance Care Planning (SPPC)
d) “Inheritance Books” people were invited to note the title of a book they inherited or would like to pass on and why this book means a lot. Completed postcards were displayed.
e) St Columba's Hospice in Edinburgh Doors Open Day (23 September 2017) – postcards advertising this were given to local visitors.
Our poster shares some “Inheritance Books”, visitor feedback and our reflections on engaging in health promoting palliative care at The Edinburgh International Book Festival.

Inspiring Leadership – Leading self; leading others in a palliative care setting


Jane Miller; Susan Jackson; Fiona Wylie; Claire O'Neill

Background: It is recognised within Palliative Care (PC) that band 6 CNS’s, in particular newly appointed staff have reported feeling vulnerable, stressed and struggling to deliver high quality care due to organisational change and increasing complexity around their role. To address the above an NHSGGC PC Leadership Steering Group was established in partnership with NES Leadership Unit.


ž Provide a pilot leadership training programme open to band 6 PC CNS’s working within NHSGGC acute and hospice care settings

ž Facilitate greater successional planning

ž Develop a robust evaluation programme to explore perceived impact on practice.

Methods: In conjunction with NES Leadership Unit a needs led leadership programme is currently being delivered and evaluated due to complete February 2018

Interim Results: 10 CNS’s participated. Participants have attended a launch day and two masterclasses:

ž Myers Briggs and Working with Differences Support a quality improvement (QI) programme individual QI action plans

ž QI methodology to support the participants to undertake a work based QI project.

Received ‘360’ feedback helping to inform their PDP.

Participated in Action Learning Sets.

Conclusion: Feedback to date has confirmed the importance of this programme in addressing a need, focusing on developing leadership skills for a capable, sustainable workforce (201).

Poster abstracts of the month

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 eight of these:


Culture Sharing: Death and dying in North India – learning from a mentorship visit to a rural palliative care team in North India


Kim Donaldson; Lorraine Wilson

Harriet Benson Memorial Hospital (HBMH) is part of the Emmanuel Hospital Association (EHA), a charitable organisation delivering healthcare in rural North India. HBMH provides general, obstetric, public health and palliative care services to people in and around the Lalitpur district, Utter Pradesh. Following an evaluative report1 of the Lalitpur palliative care services, the Community Palliative Care Team Lead and Practice Development Facilitator from St Columba’s Hospice visited to offer support and mentorship palliative care team. Adopting a positive enquiry approach many areas of extraordinary practice were identified along with areas of practice for potential development beyond the scope of the Hospice UK (2009) toolkit2 for resource limited areas. The main areas for development included deepening understanding of pain assessment and management; identification of depression and clinical record keeping. The learning was by no means one sided, the acceptance of death as part of living was evident with nothing hidden has left us asking the question – can we say the same?

1 Haraldsdottir, E. and Mundy, D. 2015. Evaluation of the EHA Palliative Care Project Funded by EMMS International. Edinburgh.

2 Help the Hospices (Now Hospice UK). Palliative Care Tool Kit. Help the Hospices: London

Discontinuing non-essential interventions at the end of life – a split site, dual discipline quality improvement project


Dr Alana Brown-Kerr; Dr Lorna Frame; Dr Victoria Beveridge; Dr Sarah Bowers; Sr Julie Carroll; Sr Fiona Kerr; Dr Claire Borland; Dr Lauren Anderson; Dr Alistair McKeown; Dr Fiona Finlay.

Background/ Aim: Local, National and Scottish Government guidance advocates discontinuing burdensome interventions when caring for patients at the end of life. In two large Scottish hospitals, over 70% of patients identified to be dying underwent blood tests and National Early Warning Score (NEWS) monitoring within 24 hours of death. The aim was to reduce this figure by 50%.

Methods: Data were collected over 6 months in 9 wards across 2 hospital sites. PDSA methodology was used and the following tests of change undertaken; 1. Stickers stating “No further blood tests/NEWS monitoring” placed in medical/nursing notes 2. Joint medical and nursing education about optimising care at end of life 3. An “alert” incorporated into electronic case records to prevent requesting of blood tests.

Results: Initial analysis demonstrates a downward trend in unnecessary investigations/monitoring in the 24 hours before death. The full project will be analysed by early September.

Conclusion: This multi-disciplinary, multi-site quality improvement project demonstrated that a combined programme of medical and nursing education, with visual and electronic prompts can reduce the proportion of patients undergoing investigations in the last day of life, as well as increasing the confidence and skills of the MDT in caring for dying people.

Do Hospital Anticipatory Care Plans improve patient care? An evaluation of end of life care in a District General Hospital


Dr Alice Radley; Dr Heather Osbourne; Dr Tahlia McKenzie

Background: Hospital Anticipatory Care Plans (HACPs) are a clinical tool used to communicate end of life care decisions. This study evaluated delivery of patient care at the end of life with and without a HACP in place.

Method: All deaths in Hairmyres Hospital between 02/02/16-02/02/17 were reviewed using scanned case notes in Clinical Portal. All expected deaths were included in the study. Patients were categorised according to presence or absence of HACP at the time of death. The following aspects of end of life care were evaluated: treatment escalation decisions, DNACPR decisions, DNACPR discussions, referral to hospital palliative care services and consideration of patient’s preferred place of care. Descriptive statistics and significance testing were used to compare outcomes between HACP and no HACP groups.

Results: 1115 deaths occurred within the study period. 913 cases met the criteria for expected deaths.

Presence of a HACP predicted greater frequency of documented treatment escalation decisions (p<0.002); greater number of documented DNACPR decisions (p=0.002); more frequent DNACPR discussions with the patient’s family or next of kin (p=0.003); and a greater number of referrals to hospital Palliative Care services (p=0.00007).

Conclusions: HACPs are valuable clinical tools which can improve patient care at the end of life.

Do cloth bereavement bags make a difference when handing back patients’ belongings to bereaved relatives/ carers compared to the current plastic bags within the acute hospitals across NHS Greater Glasgow and Clyde?


Sharon Lambie

When a patient dies within NHS Greater Glasgow and Clyde (GG&C), belongings are currently returned in a plastic bag which can often seem undignified and disrespectful when handing these back to a loved one. These bags are universally used for all belongings, meaning that there is no recognition for someone who has been bereaved. An audit was undertaken to see whether there was a quality improvement with handing over patient's belongings in a cloth bereavement bag compared to a plastic bag. Included in the audit was returning patient's jewellery in a small organza bag and a condolence card was attached to the cloth bag using a ribbon. The audit showed very positive results from both staff and relatives experience concluding that it showed that belongings were handed back in a much more caring way with greater respect, dignity and compassion. Funding has now been granted to roll out the cloth bereavement bags in all areas across GG&C.

End of life care in hospital - are we getting it right?


Elizabeth Moss; Dr Fiona McFatter

We present the results of an audit of End of Life Care in Ninewells Hospital which was undertaken as a 4th year medical student project.

In 2014 the Scottish Government published guidance on 'Caring for people in the last days and hours of life'. This guidance is applicable in all care settings. As the majority of deaths occur in hospital it is essential that good end of life care is provided in this setting. A retrospective case note audit was undertaken of 50 patients who died between Jan-March 2017. A convenience sample from all deaths in that period was taken according to case notes which were available. The care provided was compared to the 4 Principles outlined in the Scottish Government Guidance. We found evidence of good end of life care. This included - in over 90% of cases there was documented end of life care discussion with patients or families, DNACPR forms had been completed and anticipatory medication was prescribed. There was direct hospital palliative care team input for only 5 patients. This suggests good end of life care was provided by a range of hospital specialties supported by existing skills in caring for people who are dying.

End of life care: service evaluation in a hospice in-patient unit


Amanda Powell; Gill Foster

Scottish Government guidance supports clinical and care staff planning and providing care during the last days and hours of life. A service evaluation was undertaken to establish whether care provision in a hospice in-patient unit encompassed its four key principles.

Thirty consecutive case-notes of patients who died in the in-patient unit were reviewed retrospectively for evidence of documentation of such care.

60% of patients had informative, sensitive and timely discussions about dying including their concerns, goals, wishes, and psycho-social and spiritual needs. 83% of those who didn’t had cognitive impairment or were unconscious.

97% of case-notes had documentation that death was expected, inappropriate interventions discontinued (97%), inappropriate drugs discontinued (93%) and anticipatory medication prescribed (100%).

DNACPR decision was discussed with 96% of patients without cognitive impairment. All patients with cognitive impairment had that decision discussed with a relative/carer.

100% of case-notes documented informative, timely communication with relatives/carers and advice regarding bereavement support and in 97% that practical advice was given after death.

A further study is planned to ascertain from clinical staff factors that prevent or facilitate exploration and documentation of the holistic needs of those with cognitive impairment.

End-stage chronic liver disease: a look at the last year of life


Ruth Yates; Eliana Saffouri; Fiona Finlay; Alix Morieux

Background: Patients with chronic liver disease (CLD) and its complications present frequently to hospital; at end-stage, supportive and palliative care needs can be high. In this study, the last year of CLD patients' lives is described to seek opportunities for earlier concurrent palliative care involvement.

Methods: A comprehensive retrospective case-note analysis was performed of patients who died of CLD (or complications) in a teaching hospital over a year (n=77).

Results: Alcohol was the aetiological factor in 84.4% of cases. Median survival from diagnosis to death was 2 years. A third of patients died on their first admission to hospital. Only 15 patients (19.5%) were referred to the Hospital Specialist Palliative Care Team (HSPCT). Many patients had investigations within 24 hours of death. The majority of patients (89.6%) had a DNACPR order in place at death but 38% were signed less than 24 hours before death.

Discussion: Despite evidence that patients with CLD have a poor prognosis, high symptom burden and supportive needs, only a small minority were referred to the HSPCT. This data highlights the need for greater collaboration between specialties to both help patients live as well as possible while preparing them for the reality of a poor prognosis.

Enhanced Palliative Care for Generalists Course

There is a hunger from non-specialists, in both Primary and Secondary care, for enhanced training in practical Palliative Care. With the aging population there will be an increasing need for enhanced palliative care to be delivered across the medical professions. At present there are a number of courses available, mainly distance learning, and often quite time consuming and too academic for a generalist looking to advance their skills and seeking practical guidance. 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 proposed Enhanced Palliative Care for Generalists course will be an educational program based on the well established model of a comprehensive, well evidenced, manual underpinning a two day interactive course. This model has been used successfully across the world to train nurses, doctors, paramedics, and allied health professionals. Examples of these include ATLS, ALS, PHTLS, APLS, and GEMS, amongst others. Areas covered include trauma, medical emergencies, paediatrics, and care of the elderly, but at present there is no similar course for Palliative Care. Macmillan have granted funding to develop one over the next 18 months to two years.

The proposal is to prepare a pre-course manual, and develop an interactive course that will be run over two consecutive days. This will include lectures to cover the principal issues, small group workshops, skill stations, and “real life” scenarios. There will be an assessment at the end, which will probably involve a MCQ and some form of practical assessment. The course will follow the general structure of the Scottish Palliative Care Guidelines, and have these as a core resource. The project has the support of both Health Improvement Scotland, and the Scottish Partnership for Palliative Care.

To develop the project, a steering group is being established, with membership including specialists in palliative medicine from all the professions involved, generalists, and an educator. They will oversee the direction and co-ordination of the project. The aim is to have this group meet for the first time towards the end of June.

The group will be chaired by the project clinical lead, Neil Pryde, who is responsible for delivering the final product. Class Professional Publishing are partnering to produce the course materials, and will provide support and guidance throughout the project. Writing of the manual will be divided into around twelve sections. Each of these will have a main author, with a specialist interest in the area covered, leading a small group. 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.

By Neil Pryde, Project Clinical Lead.

For further information or if you are interested in being involved with the steering group, writing parts of the manual, or developing the interactive course please email or phone Neil Pryde 07770574467

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