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 - March
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:
End of Life Care – what matters
Family satisfaction with care in the in-patient unit IPU
Improving people’s experience of death, dying and bereavement
End of Life Care - What Matters?
Author(s) of poster: P Brooks-Young, S Fife, J Dunn, T Smith
This poster was designed initially for NHS Lothian Delivering Better Care Conference to share the key findings of unannounced visits to 71 ward areas across 14 sites within Lothian. This work helped to capture the delivery of end of life care within NHS Lothian in real-time, from the perspectives of patients, those important to them and health care staff.
Essentially for You - Stress Management for Carers. Impact of a Short Intervention on Carer's Stress
Author(s) of poster: Jenny Gilbert, Betty McGrory
Introduction: Family carers play a significant role in enabling people to be cared for at home in the last year of life. Yet many find themselves in a caring role and rarely identify themselves as ‘a carer’. Many describe their role as an overwhelming and stressful experience for which they feel ill-prepared.
Method: A 4-week stress management programme was offered to all carers from a hospice community caseload for 9 months from April 2013. Each session included structured reflection on the stresses of caring, explored how these could be managed and was followed by relaxation. An evaluation questionnaire was issued to participants in addition to a collective end-of-project focus group.
Results: Ten courses were delivered over 9 months. Out of 230 invitations, 52 carers were willing to participate. Evaluation identified a strong positive impact on carer’s wellbeing and affirmation that the stress management strategies discussed were helpful.
Conclusion: Recruitment was intensive but resulted in a good uptake. The group dynamic was a key success factor. The project enabled joint working between hospice and local carers groups. This will help build sustainable provision of this intervention for carers of people with palliative care needs.
Family satisfaction with care in the inpatient unit of a hospice
Author(s) of poster: Susan Campbell, Miriam Tadjali, Kirsty Cornwall
Using a validated questionnaire on the death of the patient, the opinions about admission to the hospice were sought from the ‘next-of-kin’. Pilot undertaken on 100 returned questionnaires. Comments and evidence provided shows that the carers felt the patients were treated with courtesy, dignity, respect and compassion. Symptoms of pain, breathlessness and agitation were assessed and treated well. Communication was of an excellent standard with all levels of staff and information was provided when required. Comments and suggestions were fed back to the team and where appropriate action taken. We also included an area for the name and address of the carer to be included if they wished to be contacted in the future to become involved in discussions regarding continuing improvements in Hospice care. From the pilot sample 38% completed this section and these people were invited to join a group looking into the needs of carers.
This group was supported by the Chaplain and senior nursing staff and is ongoing with the Family Care team. The survey is continuing - the comments and suggestions are important feedback to our multidisciplinary team.
Improving people's experience of death, dying and bereavement
Author(s) of poster: Mark Hazelwood, Rebecca Patterson
This poster describes the work of Good Life, Good Death, Good Grief (GLGDGG), an alliance working to make Scotland a place where people can be more open about death, dying and bereavement. The absence of such openness is a barrier to the delivery of person-centred health and care towards the end of life and to the development and mobilisation of individual and community assets in this field. 54,000 people die in Scotland each year and 224,000 people are bereaved. 29% of acute bed days are used by people in their last year of life. Nearly 1 in 10 patients will die during their current admission. Discussion is a pre-requisite for shared decision-making but is often absent in a culture reluctant to acknowledge death and dying. Low levels of public knowledge and awareness of practical, legal, medical and emotional aspects of death and bereavement limit capacity for self-management and provision of informal support. There is growing willingness by very varied organisations and individuals to promote greater openness about death, dying and bereavement. The presence of a national alliance to encourage and guide activity in this area is helpful in developing and mobilising individual and community assets.
Author(s) of poster: Norma Langford, Deputy Charge Nurse, University Hospital Cross house; Josaleen Connolly, Macmillan Project Lead, NHS Ayrshire and Arran
I have undertaken an education programme delivering practical palliative care through a distance learning module and placement shadowing members of the various specialist palliative care teams in hospital, community and at the Ayrshire Hospice. The education was provided by the University of the West of Scotland and the overall project was funded by Macmillan Cancer Support. This programme provided me with the knowledge, skills and competence in delivering general palliative care to patients who were admitted to Ward 4C where I work. I was concerned that the process for issuing the death certificate for the deceased sometimes caused unnecessary additional distress for families. Without a death certificate it is difficult for families to finalise funeral arrangements or to begin to inform other agencies that the person’s death has occurred. I felt there were a number of simple changes that could be made. I based my approach on the premise that families’ preferences should determine the way in which they obtained the death certificate. This small change has now become standard practice and has helped to minimise distress for families by creating a simple, clear and compassionate approach for handing over a death certificate to a family member.
Poster abstracts of the month - February
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:
Dining with Death Conversation Menus
DNACPR decisions in Lothian Care Homes
Educational Visit to the Crematorium for Hospice Staff
Enablers and Barriers to Volunteering in Care
End of Life Care in Liver Disease
Dining with Death: Conversation menus as a means of educating people about death, dying and bereavement
Author(s) of poster: Mark Hazelwood, Rebecca Patterson
There is growing consensus that palliative care encompasses a ‘health promoting’ element concerned with encouraging openness about death in society so that people are aware of ways to live and support each other with death, dying and bereavement.
A general societal reluctance to engage with these issues makes it harder for clinicians to initiate timely discussions with patients about their end of life care wishes.
However, finding ways to educate wider society in issues relating to death and dying can be problematic in a culture where raising these issues is variously perceived as too morbid, too difficult or too sensitive to mention.
This poster describes the Dining with Death menu and some of the settings in which it has been used, exploring its potential as an experiential learning tool to enable people to become more open about discussing death and dying.
The Dining with Death conversation menu is a folded piece of A4 card, printed with three ‘courses’ of suggested conversation topics, for example ‘Cremation or burial?’; and ‘What would be in your death plan?’.
It can be used to overcome barriers to engagement in death discussions, intriguing participants and engaging them in non-threatening conversations.
DNACPR decisions in Lothian Care Homes: An audit of current practice
Author(s) of poster: Alice Radley, Lesley Bull, Anne Finucane, Janet Dobie, Sarah Shepard, Marlis Plumb, Louise Wood, Juliet Spiller
Introduction: Care home residents are often frail with multiple co-morbidities. Advance Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions are important in this context to help avoid inappropriate resuscitation attempts at the end of life.
Aim: To examine DNACPR decisions in care homes and compare with six good practice standards.
Methods: An audit of 160 residents from 48 care homes across Lothian, between April 2013 - March 2014. Notes of recently deceased residents in whom death was anticipated were audited.
Results:
• All audited residents had a DNACPR decision.
•No residents with DNACPR forms had resuscitation attempted prior to death.
•50% (n=80) of DNACPR forms had a documented review time frame.
•99% (n=159) of DNACPR forms were signed by a senior clinician within 72 hours of completion. 96% of these were signed by a General Practitioner.
•A clinical DNACPR decision was discussed with 68% of residents or their family.
Conclusions:
•GPs play a central role in facilitating DNACPR decisions in care homes.
•Clearer guidance may be needed regarding the review of DNACPR decisions.
• Discussions with patients and their families about DNACPR decisions are sometimes documented but we highlight an urgent education need in light of a recent Court of Appeal judgement.
Educational Visit to the Crematorium for Hospice Staff
Author(s) of poster: Stuart Murdoch, Hospital Chaplain, Dr Erna Haraldsdottir
Background: It is well recognised that in order to care in an open and honest way for those who are dying and their families health care professionals need to be confident in speaking about issues related to the process of dying, and there are educational needs related to this.
Aim: Develop and deliver an education session, informing hospice clinical staff in relation to the actual processes of cremation to enhance their confidence and ability to support and inform patients and families who wish to talk about the option of the patient being cremated.
Methodology: Visits to the crematorium were organised for maximum 10 staff members per visit, with 39 attending in total lasting for 1 hour and evaluated with questionnaires after the visit.
Results: 19 participants filled out and returned the questionnaire. 17 responded that the visit was Very Informative, and 2 Informative. Key themes emerged were a greater understanding of the cremation process, increased confidence to journey with patient & family’s regarding the cremation process, dispelling myths and understanding of the cremation process, opportunity to explore own personal journey regarding death & dying.
Conclusion: It is evident that educational input around the post death process is highly valuable to staff in terms of building their confidence to journey with patients and their families at end-of-life
Enablers and barriers to the involvement of volunteering in care
Author(s) of poster: Ros Scott, Richard Carling, Jean Hindmarchx
Background: Together for Short Lives and Help the Hospices undertook a joint project exploring the future development of volunteering. As part of the project data was gathered from hospice professionals and volunteers on the barriers and enablers to the development of volunteering in care. This poster describes the findings and the outcomes of the project.
Findings: Responses highlighted a significant involvement of volunteering in care and a clear commitment to further development in this area. Barriers to the development of volunteering included, staff concerns, lack of resources, ability to deliver training to both volunteers and staff, and providing effective support and supervision. Enablers to the development of volunteering in care included: sharing policy, practice, experience and resources, national initiatives and the development of readily available training packages.
Outcomes: There is clearly a willingness to further develop volunteering in adult and children’s palliative care and some clearly identified requirements. A resource was developed based on these findings which combined guidance, signposting and an evaluation toolkit. Case studies from UK, Netherlands and Austria were used to illustrate throughout.
End of Life Care in Liver Disease
Author(s) of poster: Sally Lawton
The key to delivering appropriate palliative and end of life care is the identification, assessment, monitoring and planning of care. We wanted to know if this approach was being used for patients dying of chronic liver disease. The poster displays findings from an audit project that reviewed the notes of twenty patients. It also poses some questions for discussion within the liver service.
Supporting Physical Activity Participation in Palliative Care
Introduction
Research evidence shows that remaining physically active throughout life can improve quality of life and the ability to manage at home including activities of daily living and walking .
Physical activity participation is now promoted by government, healthcare providers, charitable and professional bodies. Research evidence and media awareness of these benefits has led to calls for more community based programmes to assist people living with long term conditions to manage their condition, maintain their quality of life for as long as possible and reduce burden on health service resources. ("Move More" above - Macmillan Cancer support 2014)
Our project to develop physical activity programmes for patients with palliative care needs began in 2010 when staff from Macmillan Day Care in Dundee attended the Scottish Macmillan Conference. We learned of the evidence, presented by Dr Anna Campbell, which exists to support physical activity in the control and prevention of symptoms of people living with a cancer diagnosis.
An exercise programme was already available in Macmillan Day Care for patients with advanced chronic obstructive pulmonary disease (COPD). Due to increased awareness of the benefits of exercise and cancer management, some of the patients with lung cancer were also keen to access the exercise class. The task was working out how to implement this generic class for patients with a wide variety of conditions, all at different stages of disease trajectories.
Methods
The opportunity to develop this idea arose through training offered by NHS Tayside ‘Practice Development Apprenticeship Scheme’. This was an opportunity for staff to engage with practice development, and to develop leadership and putting evidence into practice skills, whilst developing and implementing a practice development idea into a practical reality.
The apprenticeship was supported by the Allied Health Professions Directorate in NHS Tayside, led by Dr Jacqui Morris, AHP Research and Practice Development Lead NHS Tayside. The project was funded by monies from the Chief Health Professions Officer and following a recruitment process 6 AHPs were selected.
We met twice monthly for 6 months, learning about systematic review, evidence synthesis, process mapping, project planning and measurement and data analysis. The aim has been to train us to become leaders of practice development in our own clinical areas and assist others to develop their own ideas in service development.
We completed a literature review of the evidence for physical activity in a palliative care setting and discovered there was evidence showing that physical activity not only improves physical performance in most conditions but can also improve quality of life.
The aim of our project was to improve access to the exercise class for all patients and it was important that this service be offered to all patients based on their need not diagnosis. The challenge for us as clinicians working with such a diverse group of patients at varying stages of their disease trajectories was to ensure the intervention was clinically effective, safe and maximised our use of NHS resources.
It became apparent that the pulmonary and cardiac patients were well educated in their ability to self-manage their symptoms, based on their previous experiences of rehabilitation. However, the cancer patients in general were often fearful of physical activity, deconditioned and frequently reported they had spent the last 2 or 3 years ‘mostly sitting’ after treatment stopped. These patients continued to need healthcare professional support to help ‘pick up the pieces’ of their lives and move on.
We knew evidence existed to support appropriate exercise therapy in palliative care but what we didn’t know was how best to deliver it based on patient choices and preferences. The apprenticeship scheme offered the support and direction to ensure we gathered the appropriate evidence so that when the project completed in Oct 2013, we had the evidence which would help direct the service.
To do this it had been crucial to develop a ‘patient engagement plan’ in which we informed, engaged with and then consulted the patients who accessed the day care service.
We provided education sessions to teach patients the benefits of keeping active, set up focus groups with patients and asked what preferences they had for physical activity based on Macmillan Scotland’s recommendation of exercise groups, walking programmes and Chi Gung as suitable forms of physical activity for this patient group.
As we developed information leaflets about the services on offer, patients were asked for feedback throughout the process to ensure that what we were providing was what the patients wanted and understood. Emotional touchpoints were used and conveyed very powerful feelings from the patients relating to remaining physically active. Many of the patients felt very positive about helping to shape the service and were genuinely pleased to be involved.
Unless individual treatment is indicated, we can now offer exercise therapy in a group. In this way we can manage a full day’s list of patients in 1 ½ hours with much added benefit of group therapy and peer support for the patients.
Results
In line with the evidence, our outcome measures show improvement in functional performance and quality of life. Almost all patients have expressed an interest in walking programmes and Chi Gung and Macmillan has now offered Chi Gung training for staff to provide this on a long term basis. This will likely be beneficial for the frailer patients to avoid long periods of inactivity.
In line with patient preferences that we obtained through the project, we are now developing walking routes around Specialist Palliative Care Services. Paths For All have provided walk leader training for staff for the carefully identified bronze, silver and gold walking routes, to help build up patients levels of activity in a supported a safe environment.
Conclusions
As patients with life-limiting conditions are living longer with better symptom control, trying to find new ways to offer evidence based interventions to cope with this predicted increase in demand for rehabilitation is an on-going challenge.
An equitable service for all patients who require it should be offered as early as possible in the patient pathway, optimising the ‘teachable moment’, usually at diagnosis when health behaviour change can be facilitated most readily.
Now, we aim for 100% screening of physical activity levels of all patients referred to the day care unit and offer advice in line with the Scottish Physical Activity Pathway.
The apprenticeship scheme has turned ‘an idea’ into a sustainable reality now and hopefully long term into the future. There has been lots of learning, lots of hard work and lots of reward to see patients benefit, maximising functional performance, minimising symptoms and promoting quality of life, throughout life.
Mandy Trickett, Macmillan Specialist Physiotherapist,NHS Tayside
Contact: email or telephone: 01382 660111 ext 26170
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.
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