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Sharing Current Scottish Practice

This blog provides an opportunity for people to share examples of current Scottish palliative care practice that might be of interest to the palliative care community more widely. If you know of work underway that might be relevant for sharing on our website, please get in touch.

Poster Abstracts of the Month: March

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:

Building on the Best – Improving palliative and end of life care in acute hospitals in Scotland

Author(s)

Kirsty Boyd; Deans Buchanan; David Gray; Trisha Hatt; Mark Hazelwood; Barbara Kimbell

The Need for Action

At any point nearly 1 in 3 hospital beds in Scotland is occupied by someone who will die within 12 months. There is a need to refine processes and to support staff to deal with this large and often complex area of work. There is also a need to prepare and support people and their families to cope with the hospital experience.

What We Did

As part of a UK-wide programme funded by Macmillan a project manager was employed by SPPC. She worked with ward staff in 3 Scottish acute hospitals with the aim of scoping practice and supporting identification and testing of improvements. The project manager also sought input from people, relatives and public. The work was guided by local palliative medicine leads but led by staff of other specialities.

Results

The commitment of general acute staff was strong, but the pressured environment meant work was slow. To varying extents wards identified and tested changes in process and/or practice. A suite of resources to prompt and support staff/individual conversations was developed and tested. Some ward processes were significantly changed in order to improve communication within the staff team.

Catastrophic Bleed Box - a practical resource within an acute setting?

Author(s)

Heather Tonner

Background:

Terminal haemorrhage (bleeding from a major blood vessel), although uncommon, causes significant distress for all involved when this catastrophic event occurs. The literature highlights the importance of good nursing care to lessen this distress. Harris et al (2011) suggest the management of terminal haemorrhage should focus on non-pharmacological, simple approaches.

Aim:

In response to traumatic events associated with catastrophic bleeding in an acute medical ward a catastrophic bleed box was developed for use across a District General Hospital.

Method:

  • To facilitate discussion with ward teams regarding the care of patients at risk of terminal haemorrhage
  • Identify patients at risk
  • Enable sourcing of a catastrophic bleed box, including dark towels
  • Provide support for staff involved in this distressing situation.

Results:

Feedback from staff that have used this resource has been sought as means of evaluation. The feedback has been extremely positive. Staff like a tangible way of preparing for a catastrophic terminal bleed. Qualitative comments imply that staff feel more confident having dark towels to hand to camouflage the blood and concentrate on calmly supporting the patient and family.

Collaborative working between renal and palliative care: The impact of an integrated service on symptom burden, advanced care planning and place of death for patients with advanced chronic kidney disease managed without dialysis.

Author(s)

Sarah Cathcart; Claire A Douglas; Lorna Frame; Maureen Lafferty; Joanne Sloan; Louisa Stage; Miles Witham

Background:

For elderly patients with comorbidity and chronic kidney disease (CKD), dialysis results in significant time spent in hospital and may not offer improved survival, compared to those managed without dialysis.

Renal and Palliative Medicine professionals developed an integrated Renal Supportive Care (RSC) service for patients with chronic kidney disease (CKD) managed without dialysis. The focus is care of CKD, symptom management and Advanced Care Planning (ACP).

The impact on symptoms and care pathways was evaluated over a 30-month period. Data collected included RSC input, Palliative Care Outcome Score (POS), ACP information and mortality data.

Results:

Those patients with RSC input had improved symptom burden. They were more likely to have improved documentation and electronic communication of ACP conversations than those without RSC input. This included Preferred Place of Care (PPC) and DNA CPR information. At end of life, those patients who had PPC documentation were significantly more likely to die in the community. Those without, were more likely to die within an acute hospital.

Conclusions:

The integrated Renal Supportive Care team achieved symptom management and Advanced Care Planning for many patients with CKD managed without dialysis and may help avoid acute hospital admissions at end of life.

Drug therapy for delirium in terminally ill adults: A Cochrane review

Author(s)

Bridget Candy; Anne Finucane; Louise Jones, Baptiste Leurent, Elizabeth Sampson; Paddy Stone; Adrian Tookman

Introduction:

Delirium is a complex neuropsychiatric syndrome common in palliative care, occurring in up to 88% of patients in the weeks or hours preceding death. Our Cochrane review on drug therapy for delirium in 2012 identified one trial (Candy et al. 2012). New trials have been conducted and an updated review is now recognised as a Cochrane priority.

Aim:

To evaluate the evidence from randomised controlled trials (RCTs) examining the effectiveness and safety of drug therapies to treat delirium in adults with a terminal illness.

Methods:

We searched for RCTs comparing any drug treatment with any other treatment for delirium in terminally ill adults.

Results:

We retrieved 9,431 citations. Four studies were included in the final review. All trials were vulnerable to bias, most commonly due to small sample size or incomplete outcome data.

Conclusion:

This review identified four trials. It found low quality evidence examining the impact of drug therapy on delirium symptoms and adverse events in terminally ill adults. Results for each comparison were based on single studies. Undertaking trials on delirium in this patient group is methodologically complex. Only one study compared drug therapy with placebo. This limited our ability to answer our review questions

End of Life Care is not Black and White

Author(s)

Rosemary Cairns; Jacqueline S Nicol; Laura Thomson

This poster illustrates the implementation of a Macmillan palliative care education resource in the acute setting. Originally developed for care home staff, this was adapted and tested in an acute setting within NHS Lothian.

The resource, Foundations in Palliative Care, comprises four modules: introduction to palliative care, communication, symptom management and bereavement. Education was delivered by the Education Lead for End of Life Care and a Senior Clinical Nurse Specialist, Hospital Palliative Care Team, four days delivered within two weeks. This was supported by Senior Management and Charge Nurses which enabled ten registrants to commit and attend all four modules.

Evaluation was extremely positive. Follow up visits from the course facilitators found participants had bridged the theory/ practice gap.

Enhanced Palliative Care for Generalists (EPCG)

Author(s)

Paul Baughan; Neil Pryde

Following feedback on the Scottish Palliative Care Guidelines, where there were comments that broader and more detailed guidance would be helpful, a proposal was taken to Macmillan to support the development of a training course for generalists.

The EPCG course will be an educational program based on the well-established model of a comprehensive, evidenced, manual underpinning a two-day interactive course.

We are preparing a pre-course manual, and an interactive 2-day course. This will include lectures, small group workshops, skill stations, and “real life” scenarios. There will be an assessment at the end.

The course will adhere to the principals of the NES framework for Palliative and End of Life Care and follow the general structure and the drug regimes of the Scottish Palliative Care Guidelines. The project has support from HIS, NES, and the SPPC.

A steering group has been established that will oversee the direction and co-ordination of the project. Class Professional Publishing will provide support and guidance throughout the project. Writing of the manual will be divided into seventeen sections. There will be a separate group to develop the interactive course. Finally, the materials will be peer reviewed, and the course piloted, prior to release.


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:

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

Author(s)

Joyce Sweeney

The WoW Consultation

Author(s)

Dr Sheonad Laidlaw; Dr Emma Carduff

Computers are now common place in general practice. Studies have been conducted looking at the relationship and interaction between doctor, patient and computer, and show that the doctor-patient relationship changes as each relates to the computer.

Marie Curie is in the final stages of implementing an Electronic Patient Records (EPR) and Patient Administration System (PAS), via EmisWeb, enabling the recording of real time patient data on the ward by means of Workstations on Wheels (WoWs).

A qualitative study was conducted at the Glasgow hospice using a questionnaire exploring the staff’s feelings about using the WoW in a consultation; their perception of how the patient and their family would feel; how they think that the computer will affect the consultation; and the positives and negatives of using a computer with their patients.

Results show that staff are hesitant and nervous of using WoWs by the bedside, seeing it as a physical barrier to verbal and non-verbal communication, potentially impeding the rapport – and ultimately the relationship between HCP and patient. Staff see the benefit of using computers to capture patient centred data but not at the expense of their relationship with the patient.

Using poetry to describe the essence of person-centred engagement in palliative care

Author(s)

Dr Erna Haraldsdottir

Background: A small fund from Good Life, Good Death, Good Grief for a To Absent Friend activity allowed a hospice to run a poetry workshop for staff exploring the essence of engaging with dying patients in a person-centred way.

Aim: To provide a forum for staff whereby using the medium of art allowed for expressing, in a different way, person centred care engagement in the palliative care context.

Method: A poet facilitated 2-hour workshop for five members of staff in a hospice which included sharing of stories of person centred engagement with patients. Objects were used to reflect the essence of the engagement in each story and poetry written that further reflected the essence of the engagement.

Results: Seven poems were written which will be presented in the poster and all describing the uniqueness of person-centred engagement.

Evaluation: Evaluation was very positive with staff finding the workshop empowering, insightful and the creative expression therapeutic.

Using the Gold Standard Framework "trigger questions" to improve medical inpatient anticipatory care planning

Author(s)

Louise McKenna; Gillian Mulholland; Lise Axford

The Gold Standards Framework (GSF) Centre in End of Life Care “trigger questions” are used by GPs to identify patients approaching the end of life (when death is foreseeable within 12 months). Our aim was to assess if the GSF “trigger questions”, which identify general and/or clinical indicators of decline, could be used in the inpatient medical setting.

A retrospective review of electronic case notes using GSF “trigger questions” was performed using cardiac arrest call data (a proxy measure of the dying patient) from four general medical wards in Hairmyres Hospital, Lanarkshire. Between August-December 2016, 18 patients having peri-arrest/cardiac arrest events had general and/or clinical indicators of decline, indicating approaching end of life. Eight patients survived and had anticipatory care plans placed; 7 subsequently died. A second retrospective analysis was performed between February-May 2017, during which there were 5 peri-arrest/cardiac arrest events. Of these, 3 patients had GSF indicators of decline; 2 patients then had anticipatory care planning, prior to their death.

This project identifies the need to improve the recognisation of the medical inpatient approaching the end of life amongst inpatient clinicians. It suggests the use of community GSF “trigger questions” may help improve inpatient anticipatory care planning.

Working together to enable person-centred palliative and end of life care

Author(s)

Janice Logan; Dr Erna Haraldsdottir; Dr Annabel Howell; Gerry Finnan; Dr Pam Levack

Background: Education initiative that enables registered nurses from general health care settings to explore, reflect and build on their experience of palliative and end of life care practice. Classroom teaching and shadowing members of specialist palliative care team at a hospice and palliative care unit are included.

Method: Underpinning principle is the integration of experience with theory through reflection on practice and embedding of new learning into practice. Small cohort of nurses (8) undertake 3 x classroom teaching days and 2 x days clinical shadowing. Utilising the belief from adult education theory that reflection can turn experience into learning, 6 x follow up days, over 6-month period, enable the participants to construct and organise new knowledge and understanding.

Findings: One cohort is progressing with follow-up days. It is evident that the rewards of learning in this way include the depth of insight generated with associated energy and motivation contributing to new ways of working and practice improvement. Evaluation has been positive with participants finding the course engaging/inspiring, ‘discussion very helpful key, learning points identified around symptom control, ‘benefit of shadowing experience included observing a palliative specialist communicate effectively with a terminally ill patient’.

Next steps: A second cohort will commence in September.


Poster Abstracts of the Month: November

The SPPC Annual Conference in 2017 featured 46 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on five of these:

Rosebery End of Life Care and Choices

Author(s)

Marilyn Higham

“I have a Right to End of Life Care That Respects my Wishes”

Standards of care for Dementia in Scotland (2011)

This poster will present the development of Roseberry End of Life Care and Choices: A person-centred end of life care plan for people with dementia, their carers and their nurses.

A pilot study was conducted within an NHS in-patient mental health specialist unit for women experiencing stress and distress from advanced dementia, including in the last stages of their illness.

Quality improvement with co-production methodology was used to develop and test the approach and documentation. Quantitative data and qualitative feedback including focus groups and questionnaires captured the experience and impact on people with dementia, carers and staff.

A two-part document was devised, a care plan where carers share information with staff regarding the person and Information for You to support staff sharing information about the dying process with carers. A three-stage process of care and support has been tested and adopted, an initial meeting, use of the care plan at end-of-life and a follow-up phone call to the carer 3–4 weeks after a death.

Results indicate person-centred and relationship-centred care have improved with nurses enabled to provide timely highly-personalised end-of-life care that considers personal preferences and choices, dignity and control, whilst carers feel treated as partners in care.

Socioeconomic status is associated with place of death in patients known to hospice services

Author(s)

Sarah Bowers; Maire O'Riordan; Mike MacFarlane; Emma Carduff

Background: Place of death is a priority to patients and relatives at the end of life with most choosing home, yet 58% of Scottish deaths occur in hospital. Studies suggest that those living in deprivation are less likely to die at home.

Aim: To describe the relationship between place of death and socioeconomic status for patients known to a hospice over a 5-year period.

Method: Scottish Index of Multiple Deprivation (SIMD, 2016) was used to group. Place of death was examined for each deprivation quintile (DQ). Deaths where location was unknown or in a nursing home were excluded.

Results: Of 4585 patient deaths 41% died at home, 40% in the hospice and 19% in hospital. Deaths at home were lower in the most affluent group. There was a highly significant direct relationship between DQ and the proportion of patients dying in the hospice. There was an inverse correlation between DQ and the proportion dying in hospital.

Conclusion: Overall, this study demonstrates that patients from more deprived areas, known to the hospice, are still more likely to die in hospital than their more affluent counterparts. This is potentially inequitable, does not necessarily reflect need and has resource implications.

Testing a WISeR approach to community palliative care

Author(s)

Susanne Gray; Jackie Mearns; Cathy Quinn; Katie Clark; Alison McGill

Many people in Scotland who could benefit from palliative and end of life care (PEOLC) do not receive it. The Strategic Framework for Action on PEOLC aims to ensure that by 2021 everyone who needs palliative care will have access to it.

We sought to reduce variability in community palliative care (all settings and conditions), testing ways to develop a consistent response, that gives people and their families the opportunity to identify and discuss their concerns and plan ahead if they wish.

Aiming to promote equal opportunities for holistic person centred assessment via the introduction of a model that identifies and streams people with palliative care needs offering a proactive, coordinated, integrated model for palliative or any complex care that is fit for the future. We worked with GPs and health and social care services using a 'Plan-Do-Study-Act' (PDSA) approach to test and refine a new weekly multi-disciplinary team resource and allocation meeting (Weekly Integrated Standard Response - WISeR palliative care). We used focus groups and observation to collect qualitative data for evaluation.

Outcomes included:

ž improved integrated working

ž improved access to assessment and services

ž crisis prevention

ž improved communication.

Further testing is required to confirm results and evaluate the impact on patients and carers as well as staff.

The barriers and facilitators to implementing the Carer Support Needs Assessment Tool (CSNAT) in a community palliative care setting

Author(s)

Zoe Horseman (University of Edinburgh); Dr Anne Finucane (Marie Curie Hospice); Libby Milton (Marie Curie Hospice)

Family carers play a central role in community-based palliative care. However, caring for a terminally ill person puts the carer at increased risk of physical and mental morbidity. The validated Carer Support Needs Assessment Tool (CSNAT) provides a comprehensive measure of carer support needs and is intended for use in community palliative care. The CSNAT creates an opportunity for carers to discuss their needs with healthcare professionals, facilitating the provision of appropriate support. A recent audit demonstrated poor use of the CSNAT in a Scottish community specialist palliative care service despite training and support.

Research Aim: To identify barriers and facilitators to implementation of the CSNAT in a community specialist palliative care service.

A qualitative study was undertaken, involving interviews with 12 palliative care nurse specialists from two community nursing teams in Lothian, Scotland.

Data analysis is ongoing. The poster will present the results, identifying factors which enable and prevent the use of the CSNAT in a community palliative care setting. Recommendations for improving the acceptability of the CSNAT will be developed.

Findings from this study have the potential to enhance engagement with the CSNAT, make it more congruent with current nursing practice, and improve the experience of carers of people approaching the end-of-life.

The decision to undergo palliative chemotherapy: how do patients feel about the decision making process at the Edinburgh Cancer Centre?

Author(s)

Bethany Gwyther; Dr Morven Shearer; Professor Allan Price; Dr Joanna Bowden

The aim of this service evaluation conducted at the Edinburgh Cancer Centre (ECC) was to assess how people felt, with hindsight, about the decision to have palliative or curative chemotherapy for lung or gynaecological cancers. The SURE test, comprising four questions, was adapted for retrospective use with patients who had completed their treatment and had returned to the oncology clinic. A fifth question relating to regret was added. Questionnaires were completed in conversation with a medical student.

29 patients completed the questionnaire (13 males, 16 females.) Patients generally reported high levels of certainty that treatment had been the right choice, both at the time of the decision, and upon treatment completion. Most also reported feeling that they were supported well with the decision. The lowest scoring areas related to understanding of treatment risks and benefits.

It is reassuring that most patients felt confident in the decision making around treatment. Others' work locally has revealed that regret often comes late, and it is possible that findings would have been different if patients had been surveyed later. Poor understanding of risks of treatment could reflect a number of scenarios, and warrants exploration with future work.

Poster Abstracts of the Month: October

The SPPC Annual Conference in 2017 featured 46 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on five of these:

Patients, carers and healthcare professionals’ perceptions and experiences of managing metastatic spinal cord compression: a qualitative multiple case study

Siew Hwa Lee; Lynn Kilbride; Robin Gran; Catriona Kennedy

Background: Metastatic spinal cord compression (MSCC) is an oncology emergency with a poor prognosis if treated late. Guidelines exist to improve patient outcomes, however the outcome for many remains poor.

Aim: To report the findings of patients, carers and healthcare professionals’ perceptions and experiences of managing MSCC.

Methods: A qualitative multiple case study design. Participants were recruited from an acute cancer centre and primary care in Scotland. Three focus groups (n=25) and interviews with healthcare professionals (n=7) were carried out in phase one. Phase two semi-structured interviews include patients (n=8), carers (n=6) and healthcare professionals (n=42). Patients and carers were interviewed at two time points. Data were analysed thematically.

Results: In phase one, healthcare professionals were ‘negotiating the care-pathway’ as existing guidelines lack a strong evidence base. Phase two revealed a constant movement between uncertainty and enduring inconsistencies (of information, treatment and advice), which results in a struggle to find a balance.

Conclusions: Patient’s preferences are central to managing symptoms where life expectancy is limited. A theory of collaborative decision-making is proposed to reduce uncertainty and facilitate decision-making. The key constructs are: awareness of signs and symptoms of MSCC, collaborative decision-making, prioritising and maximising life and end of life care.

Person-centred care – at the heart of what we do

Katy Simpson

Background: Meeting the holistic, social, spiritual, psychological and physical needs of our inpatients, community patients, their families and carers. Through the use of creative activities, we can provide a robust emotional support service. All of our therapeutic services are provided within The Margaret Kerr Unit. A study carried out by The Canadian Counselling and Psychotherapy Association found that art therapy encourages the development of healthy coping strategies1. This supports our ongoing ‘Public Health Palliative Care’ campaign by raising awareness and engaging with members of the community outwith The Margaret Kerr Unit and palliative care service.

How? By providing services to inpatient and community based patients, it provides social stimulation through enabling them to meet new people and for those out with the unit, it helps break down the barriers and stigma about the Unit and the service we provide. Our events are held weekly and bi-annually to coincide with Dying Awareness Week.

Findings: Patients and families feel many of their needs are well supported alongside the clinical care they are receiving. The uptake of these activities continues to grow each week due to discussions being generated on social media around death and dying awareness.

1 https://www.ccpa-accp.ca/psychological-benefits-of-art-therapy/

Proactive Discharge - a person-centred approach to wellbeing within a hospice day service

Lynsay Bain; Janice Allan; Ann-Majella McFadden

Previous feedback demonstrated patients felt unprepared for discharge from a palliative care day service, Kilbryde Hospice (KH) staff sought a more effective method to support patients through the discharge process. A new Wellbeing Group (WG) was created.

The WG focused on enhancing knowledge and self-empowerment using a person centred approach. Using self-management techniques, enabling and empowering patients to make shared decisions and understand realistic medicine(1). Creating an inclusive and positive discharge process. This reflects the Scottish Governments vision of practising Realistic Medicine putting patients at the centre of decision making. Outcomes were evaluated through the use of evaluation, Patient Activation Measure (PAM)(2) and Views on Care (VoC)(3)

(1) Scottish Government (2017) Realising Realistic Medicine, Chief Medical Officer Annual Report, https://beta.gov.scot/news/realising-realistic-medicine/ accessed on 31/08/17

(2) Hibbard, J., Gilburt, H., (2014) Patient Activation Measure, Supporting people to manage their health, An introduction to patient activation, The Kings Fund Patient Activation Measure, https://www.kingsfund.org.uk/publications/supporting-people-manage-their-health accessed on 31/08/17

(3) Witt J, Murtagh FEM, de Wolf-Linder S et al (2013) Views on Care Introducing the Outcome Assessment and Complexity Collaborative (OACC) Suite of Measures A Brief Introduction Kings College London, https://www.kcl.ac.uk/lsm/research/divisions/cicelysaunders/attachments/Studies-OACC-Brief-Introduction-Booklet.pdf p15 accessed on 31/08/17

'Putting Activity Back into Life: The Inception of a Wellbeing Group'

Sarah Mitchell

The Day Hospice team at St Vincent's Hospice (SVH) has been developing an approach which integrates rehabilitation, enablement, self-management and self-care into the holistic model of palliative care. This has led to the team delivering a 'Wellbeing Group', which is the first of its kind in a hospice setting.

The group combines exercise, support and education, which reflects the well-established and effective format of cardiac and pulmonary rehabilitation. It aims to allow patients to maintain/increase functional fitness, become more active, less sedentary and improve their knowledge of their illness therefore encouraging self-management.

Six palliative care patients attended an 8 week, 2-hour outpatient programme at SVH. The exercise component consisted mainly of circuit-based exercise and the 8 educational components covered topics such as coping with pain, breathlessness and fatigue.

At the end of the programme, the outcome measures (5 functional fitness tests) showed that every patient had improved their functional fitness in at least one aspect. Feedback from the patients was positive and showed they were starting to be more active despite their condition.

The initial Wellbeing Group achieved its aims. The team acknowledge that future programmes should evaluate the impact of the educational component to assess the potential impact on self-management in palliative care patients.

Relational elements of end of life anticipatory care planning (ACP): implementation in Dumfries and Galloway

Jacqueline Kandsberger

This study explores how ACP is currently operationalised in Dumfries and Galloway.

GPs from various districts and levels of urban-rural classification have been recruited. ACP data are being extracted from the medical records of decedent patients and GPs are completing a survey soon after the death of each patient, detailing the different elements of ACP discussions in each case and the associated relational and structural barriers.

After the first 5 months of the study 64 surveys on expected deaths have been collected across 18 GPs. ACP is a coherent process to GPs, however, time is a barrier to implementation and there is insufficient feedback for reflexive monitoring of the process. In 36% of cases patients were open to and capable of discussing ACP and in 67% family members were involved. Specific treatment wishes and personal relationships that influence care are examples of elements most often discussed, while cultural and other values or spiritual beliefs were almost never part of ACP. In 47% of cases information from ACP discussions changed the GPs’ care plan and recommendations at least to a small degree. 72% of patients had a KIS with varying levels of completion and effects on dying in their preferred place of death.

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