- SPPC Achievements 2024-25
- Annual Conference 2025: From System Holes to Whole System
- Call for Posters
- Assisted Dying Bill - Perspectives Informed by Palliative Care
- SPPC’s response to the public consultation on the SG Strategy for Palliative Care
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 - July
The SPPC Annual Conference in 2013 featured 36 poster displays, sharing work and research underway across Scotland. Each month, this blog will focus on the content of a few of these posters. This month, we focus on:
Planning ahead for people with dementia
Author(s): Haining G; McKechnie L (Alzheimer Scotland; NHS Dumfries and Galloway; University of Edinburgh)
Forward planning has been internationally recognised as an effective approach to facilitating person-centred health and social care, but there is little evidence of this approach specifically designed for people with dementia. This innovative project provides an exciting opportunity to explore this emotive subject further and enable people with dementia to remain at the centre of decision making now and as they progress through their dementia journey.
The ‘planning ahead’ resources were designed to ensure that end of life issues were addressed in a timely fashion as part of the post diagnostic care provided for people with dementia.
Palliative care for people with dementia should commence at point of diagnosis.
An information booklet specifically designed for people with dementia addresses the many ‘what if’ questions regarding physical, psychological and social aspects of dementia. This helps people to make informed decisions about their future care. This allows people to make informed choices about their care and treatment as their illness progresses.
The ‘planning ahead’ booklet and documentation facilitates end of life care planning as part of post diagnosis support.
Should a person who is near to death never be enrolled as a subject in clinical research? A critical appraisal of the literature on this key question
Author(s): Mullin J (Cicely Saunders Institute; NHS Lothian)
Introduction: The consequence of not researching is a poor evidence base. However, some argue that persons near to death should never be enrolled into research projects, as they are vulnerable.
Aims: To pick apart the ethical maze surrounding research at the end of life:
- How can we justify research on anyone?
- Are persons approaching the end-of-life are truly vulnerable?
- What are the main ethical challenges to research at the end of life?
Method:
- Review of the published English-language literature
- Analysis with respect to: the biomedical framework of ethical and philosophical theory eg conflict between deontology and utilitarianism
Conclusions: We have a moral imperative to:
1. Both protect and empower vulnerable groups, ensuring that they also have access to the fruits of research (Justice)
2. Improve the evidence base for palliative care thus:
a) Avoiding administration of inappropriate, useless or harmful treatments and preventing
informal ‘n=1 trials’ without consent (non-maleficence)
b) Finding treatments which do work (beneficence)
3. Respect that some patients wish to take part in research, even if it is not of direct benefit to
them (autonomy)
4. Provide the utmost dignity and the highest levels of care for individuals (deontology) and our
population as a whole (utilitarianism)
Staff perceptions of Do Not Attempt Cardiopulmonary Resuscitation discussions in a palliative care setting - a qualitative study
Author(s): Finucane A; Low C; Mason B; Spiller J (Marie Curie Hospice Edinburgh; University of Edinburgh)
Background: Do not attempt cardiopulmonary resuscitation (DNACPR) decisions are made to prevent the distress caused by performing inappropriate CPR attempts. Clinical staff in specialist palliative care settings are often the people who discuss DNACPR with patients. Little is known about how staff experience and feel about these discussions; the factors that help and hinder
discussion of DNACPR; and how these discussions are best managed.
Method: Semi-structured interviews were conducted with 11 clinicians at Marie Curie Hospice Edinburgh working in inpatient and community settings. Interviews were digitally recorded, transcribed, and a thematic analysis was undertaken.
Findings: Most clinicians experience anxiety in advance of discussing DNACPR with patients, particularly when the discussion is not patient-initiated. Factors facilitating discussions include: patient characteristics (openness to discussion; acceptance of illness); clear trigger point (e.g. discharge from inpatient unit); and the clinician’s belief in the benefit of the discussion to the patient. Hindering factors include the clinician’s fear of causing patient distress; uncertainty
regarding whether CPR would be successful; and working in an environment where responsibility for the discussion does not lie with a specific staff member.
Conclusion: Acknowledging the challenging nature of DNACPR discussions and sharing experiences on what works well is warranted. A set of recommendations on how best to approach and manage DNACPR discussions will be outlined.
The 100% Project
Author(s): Neely R (Children's Hospice Association Scotland)
There is anecdotal evidence that families who have a child with a life-limiting condition experience isolation and stress because people avoid engaging with them about issues around death, dying and bereavement. Scotland has a number of organisations who are now focussing on how to encourage a societal shift in attitudes. As a children’s palliative care organisation, there is a
responsibility to families for CHAS to contribute to this work.
The 100% Project is a community engagement project which aims to start conversations about death, dying and bereavement in a life-affirming way. The poster highlights some of these activities to date.
Palliative Care Resources for Community Pharmacists
Macmillan Cancer Support and NHS Education Scotland have developed a National Palliative Care Resources folder aiming to enhance the provision of palliative care and share good practice with community pharmacy colleagues across Scotland.
The new resource is based on a local folder developed during the pilot phase of the Macmillan Pharmacy Service, designed to meet the needs expressed by community pharmacists from across NHS Greater Glasgow & Clyde.
The resource pack can be accessed here: link.
Poster Abstracts of the Month - June
The SPPC Annual Conference in 2013 featured 36 poster displays, sharing work and research underway across Scotland. Each month, this blog will focus on the content of a few of these posters. This month, we focus on:
- Let's get it right first time....
- Life story work within a hospice
- Loss, Grief and Bereavement "Toolkit"
- North Glasgow palliative care fast-track discharge system
- Patient centred ascitic drain service development: A Case Review
Let’s get it right time first time ……..
Discharge Pathway for patients who are in the last days of life
Research has shown that the majority of individuals wish to die in their own home (Ryder, 2013), however within NHS Greater Glasgow and Clyde 52% of deaths are within the acute care setting (ISD, 2011). Despite discharging many patients home to die there are still patients that do not die in their preferred place of care. Anecdotal evidence suggests this may be due to deficits in knowledge, confidence and facilitation skills in staff coordinating the discharge.
To address this NHS Greater Glasgow and Clyde set up a multi-disciplinary short life working group whose aim was to develop a pathway that would form the basis of teaching for selected pilot areas.
The aim of the pilot was to promote:
• seamless discharge from hospital to home within normal working hours
• prevent re-admission where possible
• facilitate a peaceful death in the patients preferred place of care
The group also developed questionnaire's to enable feedback on the discharge from hospital, community and carers. Twelve pilot areas have been identified and have received teaching on the components of the pathway. Feedback has highlighted areas of good practice as well as areas for improvement specifically around DNACPR, medications and significant conversations.
Further feedback is essential to influence the information included in the pathway and to promote patient centred care.
Life story work within a hospice
Author(s): Jackson S; Murdoch I (ACCORD Hospice, Paisley)
Life story work, in a variety of health and social care settings has been used successfully as an intervention for people living with illness and disability and is invaluable in the pursuit of person centred care (DoH 2009). Life story work has become an emerging area of psychosocial intervention within Accord Hospice focussing on life story groups, individual life stories and community visits. Life story groups within the Day Therapy Unit consist of weekly discussions on the stories that make up the lives people have lived within the rich local heritage of family, industry,
community and culture. Reminiscence, sharing, creating stories, and uncovering skills and talents help patients and families face their present journey through illness.
Individual work consists of gathering patient’s stories within the day or bedded unit as a positive process for the person and a legacy for family when they die. The therapeutic acts of listening, remembering and recounting helps to affirm positive aspects of individual lives, no matter how ordinary the person perceives
them to be. Reflecting on a life lived can help in the process of both living and dying.
To date collections of stories from some of the group and individual work at Accord has been gathered into a booklet called ‘According to us’.
Loss, Grief and Bereavement ‘Toolkit’
Author(s): Lindsay J; Miller J; Kelly J; Guthrie M; Doyle J (St Margaret of Scotland Hospice,Clydebank)
Whole School Approach 'Toolkit’
Many children and young people will experience grief throughout their lifetime. These experiences will relate to the loss of a parent, sibling, family member or pet. Children will also experience grief when parents separate or are imprisoned, friendships are disrupted or when the nurturing process is interrupted. Grief is synonymous with life. ‘Grief’ is an emotional reaction to loss and when loss is specific to death, the reaction will be representative of the significance of the loss experienced,
and whilst it’s a natural process the effects can be overwhelming.
During bereavement, children and young people may experience a number of emotions, including 12 Poster and display list 2013 sadness, anger, anxiety, guilt, fear, denial, disbelief and confusion. With the right guidance and support, most children and young people will not require professional help and will become resilient individuals. According to the Child Bereavement Charity, what’s needed is continuity, honest answers to difficult questions and the familiarity of trusted adults. Schools are well placed to provide such support.
A working group has been established with representation from GCC Education Services, Educational Psychology, NHS GG&C Health Improvement Seniors – Schools Based, Education and Psychosocial staff from St Margaret of Scotland Hospice Clydebank, Marie Curie Hospice Glasgow and the Prince and Princess of Wales Hospice.
The purpose of the group is to:
• promote a planned, responsive and progressive approach to classroom teachers across Glasgow
• provide evidence based training specific to supporting children and young people as underpinned by GIRFEC (Getting It Right for Every Child), Curriculum for Excellence and Good Life Good Death Good Grief
• develop an online resource to be reviewed and updated as evidence base changes or new information becomes available.
Three study events have been facilitated with 30 delegates from a range of early years, primary, secondary and special needs schools. The events have achieved excellent evaluation. The on-line resource is complete and launch dates are planned from October 2013.
Macmillan Cancer Support at Argyll and Bute Libraries
Author(s): Daniel P; McCann P; Millar K; Tyrell P (NHS Highland)
Feedback from scoping studies on the information and support services of people affected by cancer was the recognition of the need to improve access to information and support especially to more rural communities (2008, 2007).
This service development represents a partnership approach between Macmillan Cancer Support, NHS Highland (Argyll and Bute CHP) and Argyll and Bute Council.
The Macmillan Cancer Support at Argyll and Bute libraries aims to improve the quality of life of individuals affected by cancer, by developing a collaborative approach to establish library based cancer information services within Argyll and Bute via a drop in facility in the libraries. Individuals, carers and families regardless of where they are on their cancer journey will have access to person specific information, practical, emotional and financial support. The service will build on and augment existing services. Through assessment of need individuals are signposted to all other services available, using a systematic and patient centred approach. The service will enable and empower individuals to make informed decisions about their care and treatment and will also promote self management.
The service will be staffed by a service manager and volunteer coordinator who will train volunteers and the librarians to ensure the sustainability of the service.
North Glasgow palliative care fast-track discharge service
Authors: Bunch H; Hekerem D; Layden J; McGlynn G (Marie Curie Cancer Care)
The fast-track discharge project is an innovative model of care for palliative and end of life care patients. A partnership between NHS Greater Glasgow and Clyde and Marie Curie, with the assistance of others, the service supports hospital and hospice discharge for people over 65 years, to receive care, and ultimately die, within the home environment, where this is their choice. The service is managed by two senior nurses and a team of senior health & social care assistants to deliver a coordinated care package that meets the needs of the individual patient. In the most recent financial year (2012-13) 121 patients were supported to die at home and almost 1000 hours of care were provided by the health care assistants.
The service has further contributed by preventing the unnecessary admission to hospital or hospice of 29 patients. This successful project is now being expanded to cover both NE and NW Glasgow.
Poster Abstracts of the Month - May
The SPPC Annual Conference in 2013 featured 36 poster displays, sharing work and research underway across Scotland. Each month, this blog will focus on the content of a few of these posters.
This month, we focus on:
Hospice Based Ultrasound Scanning: The First 12 months
How good is primary care at identifying patients who need palliative care? A mixed methods study
Identification needs for end of life care teaching amongst Junior Doctors
Influencing National Policy and Practice Frameworks: A hospice perspective
Hospice Based Ultrasound Scanning: The First 12 months
Author(s): Kemp R; McKeown A (Prince and Princess of Wales Hospice, Glasgow)
Paracentesis of malignant ascites can provide symptomatic benefit in the short term with a well tolerated, minimally invasive procedure. There is anecdotal evidence that Hospices are increasingly reluctant to undertake paracentesis due to perceived risk. Ultrasound scanning (USS) means patient selection can be more accurate, and the procedure safer.
With the help of a St James Place Grant, the Prince and Princess of Wales Hospice (PPWH) were able to purchase a Sonosite Micromax. The staff then undertook training allowing them to undertake abdominal scans independently.
Over the 12 months from September 2012 to August 2013, PPWH recorded all USS scans completed within the hospice for a range of clinical reasons. We recorded findings, outcomes, complications and tolerability of procedures.
This poster will present the results of the first 12 months of utilising hospice based USS.
The key goal was to create a system where patients with malignant ascites could be assessed either in their own home or the hospice, and avoid the need for hospital admissions/investigations.
While the service is still being developed, we have managed to put in place the framework for such a system in a short space of time.
How do Gold Standard Framework meetings support palliative care delivery as part of primary care services? A observational study
Author(s): Baughan P; Forbat E; Haraldsdottir E (NHS Forth Valley; Strathcarron Hospice, Denny)
Background: The Gold Standard Framework (GSF) is recognised tool to support GP practices to organise high quality Palliative at home. Whilst uptake of the GSF is widespread there is a lack of evidence to demonstrate how it supports GPs and district nurses to deliver palliative care in primary
care. This small study provides insight into the use of GSF meetings within 3 GP practices within NHS Forth Valley.
Methods: Eight GSF meetings were observed. Thematic analysis was used to analyse data, providing order to the data set and allowing for key themes to emerge and be identified.
Findings: Key themes that emerged highlighted issues around the criteria for the palliative care register, how GSF meetings were constructed and the main focus of the dialogue.
Conclusion: The professionals attending the GSF meetings appeared to have a good knowledge of the patients on their palliative care register without the need to refer to medical notes. The ‘tools’ and ‘checklists’ developed for use with the GSF did not appear to be used in the practices observed. There appeared to be a challenge around identifying who and when patients should be placed on the Palliative Care register. There is ongoing uncertainty around how to interpret ‘the
surprise question’.
How good is primary care at identifying patients who need palliative care? A mixed methods study
Author(s): Finucane AM; McCutcheon H; McLoughlin P; Murray SA; Oxenham D; Zheng L (Marie Curie Hospice Edinburgh, NHS Lothian, University of Edinburgh)
Note: This poster describes data that was published in the European Journal of Pallaitive Care in Sepember 2013; and previously presented at the EAPC conference in Prague.
Background: Patients with all advanced progressive diseases may benefit from an early palliative care approach. Traditionally palliative care services have served cancer patients in their last weeks of life. We aimed to document variations in the identification of patients for palliative care.
Design: Retrospective case note review of all patients who had died in nine GP practices in the UK over 12 months; semi-structured interviews with health care professionals. Identification was defined as the patient being included on the practice palliative care register.
Results: The nine practices yielded 684 deaths: 29% from cancer, 25% from organ failure, and 23% from frailty or dementia. At death, 75% of patients with cancer had been identified formally for palliative care compared with 20% of non-cancer patients. Patients were formally identified for a palliative approach seven weeks before death. A cancer diagnosis, practice multi-disciplinary
meetings, and financial incentives facilitated identification.
Conclusion: Only 20% of non-cancer patients were ever formally identified for palliative care. If they were identified, patients are recognised too late to benefit fully. Better and earlier identification of all patients who may benefit from palliative care is vital so that care can be planned to improve
their quality of life and death.
Identification needs for end of life care teaching amongst Junior Doctors
Author(s): Kreeger L; Nixon I; Prentice J (Kingston Hospital Trust, Surrey)
Introduction: Issues surrounding end of life care (EoLC) can be challenging for doctors; especially newly qualified doctors. Education and development of the workforce is a central theme in end of life care directives both local and national.
We sought to seeks the views of foundation year 1 (FY1) doctors in a district general hospital, London.
Methods: Nineteen questionnaires were completed by FY1 doctors. A combination of white paper spaces and Likert item questions were used to investigate concerns and confidence surrounding EoLC. Preferences for teaching styles were elicited.
Results: Themes that FY1 doctors find difficult centred around communication. The most common concern was talking to relatives, predicting end of life and prescribing syringe drivers. Doctors felt least confident around predicting patients that are in the last year of life. Formal teaching, breakfast
sessions and groups work appear to be acceptable ways to deliver teaching.
Conclusion: Tuesday morning short ‘breakfast’ teaching sessions were developed by the Hospital Palliative Care Team on the medical unit, in addition to the more formal education programme already provided to address difficulties in providing relevant teaching for busy ward-based trainee doctors.
Implementing the Cambridge Breathlessness Intervention Service in Ardgowan Hospice
Author(s): Hendry S; McNeil L; Murray R; Thorp R (Ardgowan Hospice, Greenock)
Background: Breathlessness is a common, distressing and debilitating symptom in patients with advanced cancer and other life-limiting conditions. Managing breathlessness is a core component of specialist palliative care.
Aims:
1. To review our breathlessness management service against best practice models of care and develop our service in line with these.
2. To increase referrals of patients with non-malignant disease.
3. To improve outcomes for patients in terms of overall breathlessness and distress caused by this.
4. To reduce hospital admissions.
Method:
Redesign of service: specific features of the CBIS were identified to improve existing service. Stakeholder engagement – views of potential referrers sought.
Capacity review – led to fourfold increase in first appointments.
New service launched and promoted.
Audit of service.
Results:
a) Pre-implementation audit:
10 patients identified; 6 had completed notes for evaluation
All six had lung cancer
All six were referred by the lung cancer CNS
All six reported improvements in SOB and distress
Average change in SOB at worst was -3.7
10 Poster and display list 2013
Average change in distress at SOB was -3.3
b) Post-implementation audit:
10 patients identified; 10 evaluated
Spread of diagnoses – 7 lung cancer, 1 breast cancer, 2 heart failure
Spread of referrers – Lung cancer CNS:6 ;Heart failure CNS:2; Hospice CNS:2
One patient had VAS worst scores which increased +3, but reduced by -3 for distress
Otherwise all showed improvement in scores
Average change in SOB at worst was -2.1
Average change in distress at SOB was -1.9
No admissions reported in either period.
Poster Abstracts of the Month - April
The SPPC Annual Conference in 2013 featured 36 poster displays, sharing work and research underway across Scotland. Each month, this blog will focus on the content of a few of these posters.
This month, we focus on:
Evaluation of a Pilot Bereavement Support Training Programme in Schools
Evaluation of the ACP process in a demonstration site in North Ayrshire
Expressive Support: an innovative, person-centred approach to spiritual assessment and holistic care
Health Promoting Palliative Care: Nurturing roots to bring new growth
Evaluating Namaste Care: Creating a sacred space for shared positive experiences with care residents with advanced dementia
Author(s): Reid L (ACCORD Hospice, Paisley)
Background: Despite the increasing incidence, challenge and cost of dementia care, questions remain about how best to care for people with End-Stage Dementia (ESD). Namaste Care (NC) is an emerging multi-sensorial model of palliative care which aims to improve the quality of living and dying for people with ESD.
Methods: This project explored care staff’s perspectives on NC for residents with ESD in one care home. Principles of Appreciative Inquiry guided the year long process of implementation, and an inductive template analysis framework was adopted to code and analyse over 100 staff diary entries.
Results: Staff satisfaction with NC was correlated to perceptions about: residents have a positive reaction to NC, NC improving residents’ quality of life, and having shared positive experiences of NC. When staff could create/access what was reframed as ‘sacred space’ they brought an intentional presence to their work that was not deemed possible outwith the NC room.
Creating/accessing and holding ‘sacred space’ was a complex activity; the space was fragile and easily disrupted.
Residents’ response to NC was predominantly positive. Residents demonstrated moments of connection with staff and engagement with NC through episodes of gestural communication, movement with intentionality, sociability and spontaneous, often apparently joyful, actions. Reading aloud while sitting close to residents, a modification to the original programme was a bonding activity which had the unexpected result of soothing and calming residents during periods of restlessness.
Conclusion: These findings mirror the growing literature base around embodiment and dementia which highlights the ‘self’ is not obliterated by disease, but can still be communicated through the body. NC can be used to organise intentional and meaningful opportunities for people with ESD to express themselves in an environment where someone is potentially ‘listening’ to their embodied communication thereby enabling them to retain involvement in their lives despite advanced disease.
Evaluation of a Pilot Bereavement Support Training Programme in Schools
Author(s): McManus E; Paul S (Strathcarron Hospice, Denny)
Recent policy making in the United Kingdom focuses on engaging communities to change attitudes and develop capacity in end-of- life care and bereavement (Scottish Government 2008, Department of Health 2008). In Scotland, engaging with schools to equip children with skills and knowledge to cope with death and bereavement has been emphasized (Scottish Government 2010). Based on findings of a PhD research project exploring how Strathcarron Hospice can develop work in this area with primary schools, providing bereavement training to school staff was identified as a high priority.
This poster presents the results of a pilot bereavement training workshop offered to two primary schools in Forth Valley. The training was delivered to 47 teaching and support staff. Confidence levels and beliefs/attitudes were measured pre and post workshop. A significant upward trend in confidence was clearly evident across all domains of the training compared with pre-workshop scores.
Participants noted the training positively influenced their ability to engage with bereavement experiences. This is significant given school staff experience anxiety in relation to their role in bereavement support and currently no undergraduate teacher training is provided.
Recommendations include longitudinal evaluation as the workshop is rolled out to all schools within Forth Valley.
Evaluation of the ACP process in a demonstration site in North Ayrshire
Author(s): Connolly J (NHS Ayrshire and Arran)
Aim: To find out if the implementation of the Advance/Anticipatory Care Planning (ACP) process reduced avoidable admissions to hospital and increased the likelihood that the person would receive their end of life care in the place of their choosing.
Methods: The UWS external evaluation team collected data from nine semi-structured interviews with care home and community nurses and 1GP who had utilised the ACP process and completed ACP documentation.
Results: The general consensus between those interviewed was that ACP was a worthwhile process and beneficial. Many recognised the positive influence and differences in their practice, others highlighted areas for further development such as completion of the ACP documentation, engagement of relatives and resistance from professional groups. The impact on individual patients were largely positive with many of the participants recalling positive outcomes for people achieving their preferred place of care and more consultation regarding hospitalisation.
Conclusion: Overall the ACP implementation is progressing within the demonstration site. There is some emerging evidence that the ACP process is making a difference to patients/residents achieving their wishes for place of care. However reasons for these wishes not being met varied due to attitudes and behaviours of professionals, organisational culture and priorities within practice.
Expressive Support: an innovative, person-centred approach to spiritual assessment and holistic care
Author(s): MacDonald H; Macgregor R; McGee B (St Vincent's Hospice, Howwood)
Having completed a person centred art therapy course, specifically designed for those in caring professions, a Community Nurse Specialist extended her role to facilitate an innovative, six week pilot project as an approach to spiritual assessment and holistic care.
A person centred expressive support group was planned to investigate the therapeutic effectiveness of the use of colour and imagery as a vehicle for self and group expression. The aim was to evaluate the overall impact of the experience on the individual and the corresponding relationship to the professional assessment and quality care of ‘the person’.
Spiritual care is pivotal to person centred care. As far back as1993, Saunders and Sykes defined ‘the spirit’ as the vital principle within a person and it therefore follows that spiritual care is at the heart of all that we do. It is not an added extra (Wright and Neuberger, 2013).
Evaluation of participants experience was both individual and collective. The outcome generated a wealth of positive feedback and a desire from all the participants to continue with the group.
Health Promoting Palliative Care: Nurturing roots to bring new growth
Author(s): Keicher T (NHS Fife)
The Scottish Government response to global policy was the implimentation of Living and Dying Well to facilitate equity within palliative care. However, demand outweighs resources and burgeoning pressures on healthcare professional and communities are a real concern. Practitioners are pivitol in disseminating knowledge and skills to empower individuals to control their own health. Change is disconcerting to a workforce and difficulties can arrise with a shift from didactic to participatory forms of health care. Quality of life and social relationships alongside promoting well being are key areas in international and local policy. This is a creative education poster focusing on the role of critical reflection. The aim is to raise self awareness and facilitate change in perspective and to link health promotion with advanced practice in palliative care, shifting from a reactive to proactive model. The hope is that it can assist to challenge current practice and highlight future directions of alliative care whilst linking it to the past. The visual image of a tree encourages participation and learning through constructive alignment.
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