- 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 - January
The SPPC Annual Conference in 2014 featured 40 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:
Anticipatory Care Plans and preferred place of end of life care/death
Anticipatory prescribing at the end-of-life in Edinburgh care homes
Art in Reflective Practice: 16 weeks, Reflections of a trainee in Palliative Medicine
Clinical Psychologists in specialist palliative care: what do we actually do?
Day Therapies: Promoting Health and Well-being in Palliative Care
Anticipatory Care Plans and preferred place of end of life care/death
Author(s) of poster: Yvonne Jones
Introduction: As part of the Children’s Hospice Association Scotland (CHAS) quality programme, an audit was undertaken to assess how frequently the preferred place of care/death for children and young people (CYP) was achieved.
Aim: To establish which of the 54 CYP who died between 1 April 2013 and 31 March 2014 had an Advanced Care Plan (ACP) or Children and Young People’s Acute Deterioration Management Plan (CYPADM). To establish whether end of life care/death occurred in the stated preferred place when one or both were in place.
Findings:
· Five had both an ACP and a CYPADM
· Three had an ACP only
· 22 had a CYPADM only
· 24 had neither an ACP or CYPADM.
· 18 place of care was achieved
· 12 place of care not achieved
· 24 place of care note recorded.
All the CYP who had an ACP in place died in their stated preferred place.
Conclusion: The results show a strong association between having one or both forms completed, and CYP dying in their preferred place and will inform further analysis of why these forms are not in place. This will enable CHAS to make improvements to fulfil preferences at end of life for more families.Anticipatory prescribing at the end-of-life in Edinburgh care homes
Author(s) of poster: Anne M. Finucane, Dorothy McArthur, Hilary Gardner, Scott A. Murray
Background: Common symptoms at the end-of-life include pain, breathlessness, anxiety, respiratory secretions, and nausea. National end-of-life care strategies advocate anticipatory prescribing to manage these symptoms, enhance patient care and reduce unnecessary hospital admissions. Anticipatory prescriptions for four classes of ‘as required’ medicines are recommended for patients in the last days of life - analgesics, anxiolytics, and anti-secretory and anti-emetic medication.
Aims: This study explored the extent to which residents in eight South Edinburgh care homes had anticipatory medications prescribed prior to death. Results Data on 77 residents was collected, 71 of whom died in the care homes (6 died in hospital). Of the 71 who died in the care homes, 59% had some anticipatory planning medications in place: Morphine for analgesia (52%); Midazolam for anxiety and distress (38%); Hyoscine Butylbromide for respiratory secretions (21%); and Levomepromazine or Haloperidol for nausea (23%). Overall, 41% no anticipatory medications prescribed in the last days of life. Only 15% had prescriptions for all four medications.
Conclusions: Many care home residents do not have the recommended anticipatory medications in place in the last days of life and thus may experience inadequate symptom control. Interventions that build the skills and confidence of care home staff to diagnose dying and facilitate such prescribing are recommended
Art in Reflective Practice: 16 weeks, Reflections of a trainee in Palliative Medicine
Author(s) of poster: Angela Nelmes
Clinical Psychologists in specialist palliative care: what do we actually do?
Author(s) of poster: Jenny Strachan, Anne Finucane, Juliet Spiller
Day Therapies: Promoting Health and Well-being in Palliative Care
2. Specific group sessions (health and well-being, life story work, creative, IT skills) held weekly in the Netley Day Centre in Inverness. These run weekly, approx 2 hours each. For these, patients opt in to a 12 week programme.
3. Outreach sessions which run fortnightly in Skye, Fort William and Thurso. These sessions run for 3 hours per session and their programme is similar to that of the health and well-being group. The sessions focus on a specific topic eg anxiety management. The staff facilitate discussion and promote peer support.
Poster Abstracts of the Month - August
The SPPC Annual Conference in 2013 featured 36 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:
Understanding palliative and end of life care through community engagement
Up-skilling generalist nurses in palliative care
Using an outcome measure in specialist palliative care settings
The South Edinburgh Care Homes Project: A community nurse specialist led intervention to improve palliative care
Author(s): Finucane AM; Gardner H; Gibson H; McCutcheon H; McLoughlin P; Muir L; Murray SA; Oxenham D; Stevenson B (Marie Curie Hospice, Edinburgh; University of Edinburgh)
Background: Approximately 20% of people die in long term care settings. Hospices are well placed to support care homes to deliver palliative care to residents who would benefit.
Aim: To improve the delivery of palliative care to care home residents using a hospice-led model of care home support.
Approach used: Twenty-two South Edinburgh nursing care homes agreed to take part in the project. Care homes were divided into two geographically defined clusters. The intervention is currently being delivered to the first cluster. Key components of the intervention include: support from a dedicated Community Palliative Care CNS; two palliative care leads in each care home; palliative care training; palliative care review meetings with GPs, and implementation of the Supportive and Palliative Care Action Register.
Results: Baseline data relating to the deaths of 77 residents from eight care homes was collected. A high proportion died in the care home (92%); 83% had DNACPR documentation in place; 64% had some evidence of anticipatory care planning; and 55% had anticipatory medicines prescribed.
Conclusion: Despite a large proportion of residents dying in the care homes a significant proportion of deceased residents had no evidence of any anticipatory care planning. The intervention is will build on these results.
The Square Table Programme
Author(s): McGill M; McNamara K (Children's Hospice Association Scotland; Together for Short Lives)
This poster will describe the collaboration between two national organisations in the United Kingdom dedicated to children’s palliative care joining together to host three national conversations about children’s palliative care in Scotland.
Children’s Hospice Association Scotland (CHAS) is a national charity in Scotland and the sole provider of vital hospice services for children and young people with life-shortening conditions working at national, local and regional levels.
Together for Short Lives is the UK CPC organisation, working to help ensure that every child unlikely to reach adulthood, and their family have the best possible care and support whenever, and wherever they need it.
The Square Table programme offered a series of events which offered a structured environment in which the aspirations of children and young people with life limiting and life threatening conditions, together with the views and concerns of their parents and key carers were heard and understood in
common forum with key representatives from the entire children’s palliative care provider community.
Understanding palliative and end of life care through community engagement
Author(s): Connelly M; Hekerem D; Layden J; McLoughlin P; Sandeman K; Tyrell P (Argyll and Bute, Marie Curie Cancer Care)
Three Marie Curie service redesign programmes in Scotland (Argyll and Bute, Lanarkshire and Lothian) have been addressing the issue of health promoting palliative care and changing the culture around death, dying and bereavement.
This work has been led by extensive local community and stakeholder involvement to ensure that future initiatives and service design responds to the local needs and population. A series of stakeholder workshops were held in the
three areas and were attended by patient/carer representatives, voluntary, independent, health and social care. Participants were encouraged to brainstorm ideas and solutions to the question, ‘How would you improve the culture of death, dying and bereavement in your local area?’ A range of options were identified. This poster will describe the benefits of community engagement in health promoting palliative care, the common themes from across the three geographic areas and proposed work. It is anticipated that the engagement work will positively contribute to changing the culture towards death, dying and bereavement.
Up-skilling generalist nurses in palliative care
Author(s): Connolly J (NHS Ayrshire and Arran)
Aim: To up-skill 48 nurses’ knowledge and skills in palliative care who were working in the generalist areas within NHS Ayrshire & Arran over a 2 year period.
The programme was developed and implemented between the NHS, Ayrshire Hospice and the University of the West of Scotland (UWS) and funded by Macmillan Cancer Support. The purpose was to offer an opportunity to NHS nursing staff to complete a programme of academic and experiential learning in palliative care. The programme involved undertaking an academic distance
learning module with the University and a practice placement of 5 days with the different specialist palliative care teams. Time out to attend the scheduled placement and 6 study days was funded by Macmillan Cancer Support. A qualitative external evaluation was commissioned.
Results: Over 2 years, 39 nurses completed the programme. The impact of the academic and experiential learning was captured through semi structured interviews with the nurses, managers and key stakeholders. Ten key themes emerged.
Conclusion: The learning opportunity has been appreciated. Nurses feel more confident and are more aware of the other palliative care resources and services that are available to them and for patients in the wider community.
Using an outcome measure in specialist palliative care settings
Author(s): Cochrane E; Colville E; Doogan D; Ferguson M; Walker G (NHS Tayside - Specialist Palliative Care Services Dundee)
Patients were invited to participate in a 6-month pilot using the St Christopher’s Index of Patient Priorities (SKIPP) questionnaire within the Hospice, Day Care and Community Macmillan Nurse Team. Data was collected and analysed using the recognised and validated tool.
Results: Findings from this pilot would suggest that patients did benefit from input from all three teams and identified a positive shift for patients over a period of time. 121 completed questionnaires were analysed there was significant evidence to suggest a positive impact on patients’ quality of life, key symptoms and major concerns.
Discussion: It is recognised that obtaining valid and reliable measurement of the outcomes achieved by palliative care for patients is extremely challenging often because patients are too ill or because of fluctuating and changing needs. However the questionnaire takes account of response shift, a well known phenomenon in which a persons’ perception of subjective sensations can
change over time.
Conclusion: Having a tool such as SKIPP has been deemed a very useful way of evaluating the impact three areas within a Specialist Palliative Care Service have on a patients quality of life, key symptoms and major concerns. It is planned to repeat this exercise again for a 6 month period.
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.
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