Sharing Current Scottish Practice

Poster Abstracts of the Month: February

The SPPC Annual Conference in 2018 featured 48 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on six of these:

• A Critical Investigation of the Outcomes of Specialist Palliative Day Services on Specific Components of Attendee Quality of Life: A Mixed Methods Study
• A road less travelled
• A 'Vicious Cycle' of Heart Failure Care
• Bereavement in Prisons
• Brief Engagement and Acceptance Coaching for Community and Hospice Settings (the BEACHeS Study): Protocol for the development and pilot testing of an evidence-based psychological intervention to enhance wellbeing and aid transition into palliative care
• Building Blocks of End of Life Care

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

Author(s)

Belinda Dewar; Jean Rankin; Elaine Stevens

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

02. A road less travelled

Author(s)

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

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

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

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

• Training packages for multidisciplinary staff

• An adapted SBAR to record ACP

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

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

The project supported:

• development of skills and knowledge

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

learning

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

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

03. A 'Vicious Cycle' of Heart Failure Care

Author(s)

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

Aim:

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

Method:

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

Findings:

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

Conclusion:

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

04. Bereavement in Prisons

Author(s)

Hannah Campbell-McLean

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

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

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

Author(s)

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

Background:

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

Method:

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

Discussion:

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

06. Building Blocks of End of Life Care

Author(s)

B Jackson, B Johnston, J McPeake

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

Poster Abstracts of the Month: January

Each month we focus on a few of the posters displayed at a previous SPPC Annual Conference. This month we look at five posters from the 2017 conference...

• The Inside Out Hospice Approach
• The WoW Consultation
• Using poetry to describe the essence of person-centred engagement in palliative care
• Using the Gold Standard Framework "trigger questions" to improve medical inpatient anticipatory care planning
• Working together to enable person-centred palliative and end of life care

Strathcarron Hospice “Living Right up to the End” project

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

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

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

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

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

Clearly a different approach was required.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Inspiring Leadership programme an investment in high quality healthcare

A new pilot project offers a safe haven for band six palliative care clinical nurse specialists to share and learn from each other.

A group of eight band six clinical nurse specialists are the first to take part in a new Inspiring Leadership programme, jointly delivered by The Prince & Princess of Wales Hospice, Accord Hospice and NHS Greater Glasgow and Clyde and NHS Education for Scotland.

Masterclasses and workshops are combined with action learning and a quality improvement project, and participants have the opportunity to have their work accredited by Glasgow Caledonian University at Masters level.

“The 12-month programme was set up after recognising a potential gap in knowledge. Band six clinical nurse specialists in palliative care are working in a time of organisational change with increasing complexity around their specialist role. Some staff have reported feeling vulnerable and anxious as they struggle to deliver high levels of care to patients and families,” explained Jane Miller, education facilitator at The Prince & Princess of Wales Hospice.

“It now offers a safe space for clinical nurse specialists taking part to share and learn from each other, while embedding the values, behaviours and attitudes of leadership skills.

“This provides a foundation to support greater successional planning in palliative care and increase the knowledge of those taking part, as well as their understanding of quality improvement methodology supporting individual quality improvement action plans.”

A key goal is to provide training in leadership for this cohort of palliative care nurses alongside robust evaluation of the programme with the view to this becoming a nationally recognised palliative care leadership programme.

“Newly appointed staff, in particular, have been reporting an increase in stress levels within their teams, and with the number of band six palliative care clinical nurse specialists in acute settings increasing, it is essential to support and develop them,” added Jane.

“A move towards mentorship and succession planning paved the way for this new programme. It now provides an opportunity to continue building leadership capacity across NHSGGC palliative care teams and ensure we have leaders who are prepared for senior strategic roles in the future.

“The progamme calls for a high level of investment from those taking part, as well as the hospices involved. An investment in leadership is an investment in high quality healthcare – essential to delivering the future in NHS Scotland.”

By the end of the exercise, clinical nurse specialists taking part will have had a chance to build their self awareness, personal effectiveness and resilience. They will also be able to show leadership behaviour that is consistent with creating an enabling culture to transform services for patients and families.

Providing effective leadership and management in teams and across professional and organisational boundaries will focus on service excellence. And creating the conditions for staff to play to their strengths, think creatively and work collaboratively will overcome obstacles in the change process.

At the end of the programme, a celebratory event in February 2018 will give those taking part an opportunity to showcase their Quality Improvement Project work.

By Angela McManus, Communications manager, The Prince & Princess of Wales Hospice