Sharing Current Scottish Practice

Poster Abstracts of the Month: January

The SPPC Annual Conference in 2019 featured 32 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:

• CREOL - A realistic medicine approach to supporting compassionate care of the dying in any setting
• Developing an Adult Palliative and End of Life Care Plan for Angus Health & Social Care Partnership
• Dying well night and day: A mixed-methods evaluation of out-of-hours services in Scotland for people with palliative care needs
• Hospice Incident Reporting: Our Transition from Paper to the Web

CREOL - A realistic medicine approach to supporting compassionate care of the dying in any setting

Author(s)

Geraldine Finnan, Michelle Scott, Julia Hume

The Chief Medical Officer for Scotland presented an invitation for all health and social care professionals to make a shift in the way they support patients and carers. Realistic medicine is an approach and attitude where shared decision-making happens through respect for the individual’s values, with a focus on what matters to them.

For Palliative Care specialists it represents the “mainstreaming” of all the core aims and values of what palliative care has at its heart – recognition that this is every care professional’s job. This approach enables the benefit/burden balance of realistic treatment choices to be truly shared and understood and honest and open communication can empower patients and families.

The CREOL is a document that was developed to support delivery of compassionate person-centred high quality end of life care (EOLC) in all settings. A truly realistic medicine approach was integral to the design. It has been designed to be intuitive and flexible, allowing episodes of care and assessment to be documented in a clear and concise manner, which allows trends and patterns to be identified quickly.

The aim is to support and improve EOLC provision, promote discussion around dying, and ensure that clinicians value what matters most to the dying patient in any setting.

Developing an Adult Palliative and End of Life Care Plan for Angus Health & Social Care Partnership

Author(s)

Elaine Colville, Sally Wilson, Marion Gaffney, Dr Deans Buchanan

Angus Health and Social Care Partnership have co-produced a collaborative and integrated plan for Adults with palliative and end of life care (PEOLC) needs. This has been produced following consultation and engagement from a wide range of stakeholders including health, social services, voluntary and independent services, carers and the public. The plan is shaped around people’s current experiences, understanding and hopes regarding PEOLC in Angus. We are proud to be the first Health and Social Care Partnership in Scotland to develop a dedicated plan for PEOLC and this strengthens our commitment to achieve the best Palliative and End of Life Care that we can.

What did we do?

Review of literature and strategic guidance

PEOLC Steering Group convened

Engaged widely with carers, public and workforce

Themed feedback which identified our strengths and gaps.

We asked:

What do you think good palliative and end of life care look like?

What do you think we could do differently?

Is there something else you want to tell us about palliative and end of life care?

The plan outlines 6 outcomes:

Compassionate and person centred care

Care as close to home

Compassionate communication and conversations

Getting it right for the family

Education and development for the workforce

Public health approaches to palliative and end of life care.

Next steps involved the development of an Action Plan and Implementation.

Dying well night and day: A mixed-methods evaluation of out-of-hours services in Scotland for people with palliative care needs

Author(s)

Bruce L. Mason, Scott A. Murray, Marilyn Kendall, Nicole Brun, Anne Finucane, Emma Carduff, Andrew Stoddart, Lewis Ritchie, Jeremy Keen, Marie Fallon, Sian Tucker, Erna Haraldsdottir, Lorna Moussa, Stella Macpherson, Joannes Kerssens, Sheonad Laidlaw, Kirsty Boyd,

Background: Scotland’s national datasets provide insights into use of out-of-hours (OOH) services in the last year of life.

Methods: Patient data from the national register of deaths (2016) linked to five urgent/ unscheduled care datasets within a Data Safe Haven was analysed for every episode of OOH care in the 12 months before death. Three qualitative case studies in diverse regions of Scotland involving patients, carers, and healthcare professionals explored decision-making.

Results: Of 56,407 people who died in Scotland in 2016, 98% had a long-term illness (cancer 28%, organ failure 38% and frailty dementia 25%). Overall, 95% (53,852) used an OOH service; 50% of this in the last 2 months of life when calls to NHS 24 and primary care OOH increased proportionately but cost a fraction of hospital care. People with organ failure, especially from lower income quintiles, tended to call 999 and attend A&E. Those with cancer had more bed days and were the highest users of primary care OOH. Perceived legitimacy, prior experience and enhanced access to services influenced people’s decisions about seeking help.

Conclusions: Users find OOH services difficult to navigate but need to contact them more as death approaches. Patterns of use were impacted by diagnosis, deprivation and proactive planning.

Hospice Incident Reporting: Our Transition from Paper to the Web

Author(s)

David Manion

Clinical governance has long been recognised as the system with which health organisations are accountable for continuously improving the quality of their care and the way that service is delivered. Incident reporting is a significant part of this process, in it provides an indication as to the level of reporting culture in place within an organisation with the added benefit of ‘soft intelligence’ included in the incident’s descriptive narratives. This investigation and review process can provide the basis of continued work into improving working practices and quality of care.

During March 2019 St Columba’s new web based incident reporting system went online and staff went from a traditional paper form based reporting process to a data management system. The system would not only provide Incident Reporting but also Facilities Management, Complaints, and an electronic Risk Register for the hospice.

We have taken this point in time (6 months) as a good opportunity to document the benefits and difficulties experienced during this period of innovation and hope the example provided might help other organisations when considering a similar reporting solution.

Poster Abstracts of the Month: November

The SPPC Annual Conference in 2019 featured 32 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:

• A carer intervention to improve support for patients with delirium in a palliative care inpatient setting: A quality improvement approach
• A Service Evaluation of the Fatigue, Anxiety and Breathlessness (FAB) Programme ran in day therapies at the Marie Curie Hospice in Edinburgh
• Are Anticipatory Care Plans (ACP) implemented appropriately in patients who die soon after an Emergency Department admission?
• Cat out of the Bag

A carer intervention to improve support for patients with delirium in a palliative care inpatient setting: A quality improvement approach

Author(s) Max Fend, Juliet Spiller, Anne Finucane, Sarah Mabelson

Introduction: Delirium is a clinically significant condition for palliative care, found in up to 88% of inpatients at the end of life. There is little evidence for drug therapies to treat delirium in terminally ill adults, and recent findings suggest greater emphasis should be placed on supportive care. This project, using a quality improvement (QI) approach, aimed to improve delirium-related communication between patients’ families and nurses at the Marie Curie Hospice in Edinburgh, thereby aiding non-pharmacological management.

Methods: A baseline questionnaire assessed how nurses approach discussing delirium with family members. A leaflet to aid these conversations was introduced and tested in the inpatient unit. Using feedback from nurses and family members/carers, the leaflet was altered. This process of implementation, feedback, and alteration, went through four PDSA cycles. Results: Leaflet feedback was positive from nurses and family carers, both claim it was helpful. In our final questionnaire, all nurses said they would use the leaflet in future interactions with family members.

Conclusions: Despite small participant numbers this project suggests that a delirium leaflet for families is a useful and popular tool that helps informal carers to support their patient. More Quality Improvement cycles are required.

A Service Evaluation of the Fatigue, Anxiety and Breathlessness (FAB) Programme ran in day therapies at the Marie Curie Hospice in Edinburgh

Author(s) Kim Pollock

The FAB programme is multidisciplinary led and has been part of Marie Curie Edinburgh Hospice’s day therapies since February 2017. The programme considers the management of symptoms of fatigue, anxiety and breathlessness for patients living with progressive, life limiting conditions. It has been designed to enable patients to understand the symptoms of their illness, find coping strategies and learn techniques that can help to relieve and manage their symptoms aiming to achieve the best possible quality of life. The aim of this service review is to evaluate the effectiveness of the FAB programme over a two-year period by exploring the nature of referrals, uptake of service and attendance, follow up input after completion of the programme, patient feedback and outcome measure scores. The evaluation highlighted that the majority of patients recorded improvements in their palliative care outcome measure score. It also concluded that increased number of patients completing the programme coincided with an increased number of external referrals received. The evaluation also highlighted that a large number of patients with a non-cancer diagnosis are being referred to FAB. This evaluation and data obtained highlights that the FAB programme supports Marie Curie’s strategic plan to reach more people living with a terminal illness and help people regardless of their diagnosis as soon as the terminal phase of illness is identified.

Are Anticipatory Care Plans (ACP) implemented appropriately in patients who die soon after an Emergency Department admission?

Author(s) Polly Black

An Anticipatory Care Plan (ACP) outlines the appropriate clinical interventions and patients’ preferences to be adopted during end of life care. This study aims to identify the number of patients who were brought to an Emergency Department (ED) close to their death who may have benefited from an ACP but did not have one. ACPs were graded in terms of their usefulness and to understand if the ACP was followed during the admission that led to the patient’s death. One hundred hospital records were analysed. At least 1 in 5 patients may have befitted from an ACP but did not have one. Many ACPs were not completed comprehensively; vital information such CPR status was omitted in some cases. At the time of death, ACPs cannot always be followed due to the clinical status of the patient i.e. the patient is suffering from an unpredicted and acute condition requiring hospital management. However, 4% of patients (all living in nursing homes) were brought to the ED for emergency care in whom it does not appear appropriate, nor in line with the patient’s wishes, to do so. The findings from this study warrant further research to identify reasons for ACPs not being implemented.

Cat out of the Bag

Author(s): Lynsey Graham, Lisa McConnell, Katy Paterson, Jacquie Smith

‘Cat out of the Bag’ is a peer driven discussion group which focusses on the feelings, thoughts and questions patients attending the Edwina Bradley Day Hospice may have relating to the diagnosis, status of illness, symptom experience, prognosis, lifestyle, loss, wishes, preferences and plans. Concepts discussed range from Power of Attorney to family to Funeral Planning and everything in between. Discussions centre upon each concept as it is selected from the bag, so everyone’s concept matters.

Poster Abstracts of the Month: October

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:

• Tackling Fatigue; Take charge! Recharge!
• The Coracle Project - Art and Bereavement Support
• The FLTTN (Forward Looking To The New) Project
• Timely identification and support for carers of people at the end of life through the Adult Carer Support Plan
• Triggers for the Pharmacological Management of Delirium in Palliative Care
• Use of Propofol in a Specialist Palliative Care Unit
• Views of Care - Delivering End of Life Care Now and Improving for the Future
• What Matters at end of Life - Using Principles of End of Life Care in Clinical Practice
• What matters to you?’ Staff perspectives on the identification and documentation of ‘What matters’ and the role of values-clarification in palliative care settings
• Working Together Learning Together, Collaborative Working: Single Nurse Controlled Drug Administration

Tackling Fatigue; Take charge! Recharge!

Author(s)

Donna Bruce

St Andrew’s Hospice Occupational Therapist has provided fatigue management as part our services for a number of years. However, following repeated requests from healthcare professionals in the community we agreed to develop and pilot an education session for patients on self-management techniques for fatigue. The aim of the pilot was to provide patients with adequate knowledge, empowering them to manage their own symptoms thus allowing them ‘to longer healthier lives at home or in a homely setting’ (Scottish Government 20/20 vision, 2011)

The Session was developed and ran by our specialist Occupational Therapist and consists of a one-hour session which teaches the concept of energy conservation in managing fatigue and introduces self-management tools such as the energy battery and activity diaries.

35 patients completed evaluation forms and the results show that 100% of attendees reported that they had learned techniques which could help them manage their fatigue.

Comments included:

‘To prioritise, to stop and think, to realise certain tasks can wait.’

‘Session was excellent and at right pace. Provided a much better understanding of fatigue’

Following the pilot, the education sessions currently run once per month and are led by a Rehabilitation Support Worker.

The Coracle Project - Art and Bereavement Support

Author(s)

Suzie Stark

Art and Conversation - Painting a Grief Journey

People who had completed 1:1 bereavement support sessions at a hospice were invited to take part in an art-based group project. The Coracle Project consisted of six sessions facilitated by the chaplain. The group explored words and images that encapsulated aspects of a grief journey with which all participants identified.

The analogy of being at sea in a small craft was used by the chaplain in 1:1 bereavement support sessions and was familiar to most of the group. The artwork depicts three different stages of a grief journey, noting that progress is not linear and stages might be experienced many times. Words, colours and images were used to create ‘mood boards’ and from these three paintings were produced - the turmoil of raw grief, the sense of being lost in fog and the longed for, but often elusive, calmer waters.

The paintings have been exhibited and used as conversation starters to help others discuss their feelings of loss and bereavement, demonstrating how conversation and art in a safe group environment can be beneficial for those taking part as creators and leave a legacy for others struggling with their own losses.

The FLTTN (Forward Looking To The New) Project

Author(s)

Claire Coleman-Smith; Niki Ferguson; Janette McGarvey

Story of the FLTTN Project:

At the Prince and Princess of Wales hospice we have an inclusive approach to caring for everybody affected through life-limiting illness and we deliver our holistic compassionate care, for people at the most difficult times of their lives; for patients, family members, carers and friends. Our specialist (bereavement) Butterfly Service, funded by the Big Lottery, specifically looks after children, young people and their families.

As part of the development of the butterfly service and inspired by the upcoming move to our new home at Bellahouston park we have invited a working group of young people with connections to the Butterfly service to co-produce a transitional creative project (THE FLTTN PROJECT- Forward Looking to The New). The project aim is to provide a platform for children and young people (CYP) to voice their collective experiences and thoughts on the transition from the historic Georgian building on Carlton Place to the modern 21st century new build in Bellahouston Park. This will involve CYP exploring all areas of the arts (Visual art, Music, Digital (film, photography and animation) Creative writing and Performance) to produce content for an exhibition to be held in 2018 (Year of the Young person) in the new hospice.

The emphasis is not necessarily on each CYP telling their own personal story about their connection to the hospice but rather to explore broadly the theme of transition and change; individually and/ or as part of a small group. The CYP will consider marking endings and establishing new beginnings, linking the past to the future, and how the spirit of a place can transition and evolve into a new environment to form new memories.)

Timely identification and support for carers of people at the end of life through the Adult Carer Support Plan

Author(s)

Emma Carduff; Richard Meade; Susan Swan

Introduction:

The Carers (Scotland) Act (2016) places a duty on local authorities to prepare an Adult Carer Support Plan (ACSP) for any carer who requests one or is identified as such. From 2020, this will be assisted by a fast track process for carers of people in their last six months of life.

Aim:

To provide evidence on the supportive needs of carers to inform recommendations regarding the timescale for the creation of fast tracked ACSPs under the Carers (Scotland) Act (2016).

Methods:

The study triangulated data from a literature review, qualitative secondary analysis (n=19 interviews; 3 focus groups) and two primary focus groups with bereaved carers (n=11).

Results:

Themes included; barriers to and triggers for identification and needs including physical support, psychological support, respite, information, communication, co-ordination and competing demands. Additional themes were speed of decline and end of life care.

Conclusion:

Health and social care professionals need to take a radical, reactive move to presume that every patient has a carer and ensure they understand their entitlements. Carer identification is everyone’s responsibility and it should be the ambition of the Carer (Scotland) Act (2016) that this happens early in the illness trajectory. In so doing, rapid assessment and support can be initiated to help carers navigate and cope with an uncertain, often rapidly deteriorating illness trajectory.

Triggers for the Pharmacological Management of Delirium in Palliative Care

Author(s)

Catherine Fairfield; Anne Finucane; Juliet Spiller

Introduction:

Delirium is a serious neurocognitive disorder with a high prevalence in palliative care. There is a lack of evidence of benefit for pharmacological interventions such as antipsychotics.

Aims:

1) To determine the prevalence of delirium in a palliative care inpatient setting and how it is documented/described by staff. 2) To determine the extent delirium screening tools are used in its identification and how they are viewed by staff. 3) To determine the triggers for pharmacological intervention in managing delirium in palliative care.

Methods:

A case-note review of admissions to Marie Curie Hospice Edinburgh from 1st-17th August 2017 was performed as were small group interviews with hospice doctors and nurses.

Results:

21 patients were reviewed. 76% had documented symptoms of delirium and 62% were screened on admission. Its documentation/description was variable and the term itself was used infrequently. Midazolam was the most commonly used medication. Triggers for pharmacological intervention included failure of non-pharmacological measures, distress, agitation and risk of patient harm.

Conclusions:

The infrequent use of the term delirium suggests it may be under-recognised.

Triggers for pharmacological intervention are in-keeping with guidelines, however the level of understanding of delirium’s presentation varied between participants.

Use of Propofol in a Specialist Palliative Care Unit

Author(s)

H Crockett; C Ross

Purpose of audit:

Propofol is a fast-acting general anaesthetic agent. However, beneficial use of propofol in palliative care has also been reported, in refractory agitation. This has informed the practice of our specialist palliative care unit. The purpose of the audit was to monitor adherence to the unit’s propofol protocol.

Methodology:

A protocol for propofol use in refractory agitation was developed in 2011 in our specialist palliative unit. A proforma was used to document use over the next six years.

Results:

There were nine episodes (seven patients) of propofol use. The indications for use included refractory agitation, status epilepticus, and sedation for NIV removal. In non-seizure related episodes, a benzodiazepine and antipsychotic had been used prior to propofol, as a minimum. The propofol infusion was stopped when the patient died in seven episodes, and when symptoms had resolved in two episodes.

Conclusion:

Propofol use is well documented and has a valuable role in palliative care. A new proforma has been written to allow for more robust auditing of the use of propofol. Propofol has been used very infrequently, but the impression of the specialist staff is that is an invaluable tool for very difficult and refractory cases.

Views of Care - Delivering End of Life Care Now and Improving for the Future

Author(s)

Bridget Johnston; Elaine O’Donnell; Patricia O’Gorman; Claire O’Neill; Jackie Wright

Obtaining feedback on End of Life Care from dying people and their relatives is difficult. This pilot project tested the use of questionnaires to gather views on end of life care from relatives /friends in the acute setting.

Aim:

• Test the feasibility of collecting feedback using questionnaires

• Capture qualitative Views of Care

• Identify areas of good practice and areas for improvement

A sensitive questionnaire was issued to relatives in pilot sites when collecting the medical certificate of death. After 6- and 12-months questionnaires were issued to gather staff opinions of the project.

The feedback revealed that high quality End of Life Care is being delivered and that this is important to both relatives and staff. 32 questionnaires were received from bereaved families. Themes emerging included communication, compassion and emotional support. Areas for improvement were also identified.

Staff questionnaires captured valuable feedback both benefits and concerns were identified.

This project has been effective in obtaining valuable feedback from bereaved relatives. The results identify good practice and highlight areas for improvement.

More research is required to identify the optimal timing and method, such as using technology, for obtaining views of care at end of life from bereaved relatives.

What Matters at end of Life - Using Principles of End of Life Care in Clinical Practice

Author(s)

Morven Kellett; Lesley Murciano; Evelyn Paterson; Helen Upfold

This poster has translated the 4 principles of end of life care (ref: Caring for People in the last Hours and Days of Life, Scottish Government National Statement 2013) into more memorable language; Communicate, Collaborate and Co-ordinate, Care and Comfort, Compassion. It has been used to raise awareness of the principles of end of life care and as an educational tool - asking multidisciplinary staff to reflect on how their care delivery aligns with these principles and to identify areas where improvements could be made.

What matters to you?’ Staff perspectives on the identification and documentation of ‘What matters’ and the role of values-clarification in palliative care settings

Author(s)

Anne Finucane; Jack Irvine; Juliet Spiller

Introduction:

Values-clarification has an important role in palliative care for clinical staff and their patients. The question ‘What matters to me?’ forms part of the daily assessment of each patient at the Marie Curie Hospice Edinburgh.

Aims:

Explore staff perspectives on the role of understanding patient values and their interaction with clinical practice.

Methods:

A service evaluation investigating the practical application of ‘What matters to me?’ as a proxy question for values identification, using a retrospective case notes review and focus group discussion. Data was qualitatively analysed.

Results:

Doctors recorded ‘What matters to me?’ information most frequently (52%). Focus group results indicated widespread understanding of the importance of values to staff personally but revealed varying approaches to electronic documentation. Multidisciplinary team meeting electronic records were found to be less useful than intended. Quality of evidence of community documentation of ‘What matters’ being transitioned to the inpatient setting was, overall, positive. Core themes included family, being at home and general health.

Discussion:

Extensive agreement regarding the positive impact of using the ‘What matters to me?’ question to elicit patient values. Implications for hospice practice include clarifying electronic documentation practices, increased healthcare assistant access to electronic records and regularly updating nursing handover sheets.

Working Together Learning Together, Collaborative Working: Single Nurse Controlled Drug Administration

Author(s)

Irene Barclay; Kim Donaldson; Helen Keefe; Dorothy McArthur; Libby Milton; Dot Partington

Single Nurse-Controlled Drug Administration (SNCDA) was developed in response to registered nurse (RN) concerns that patient waiting times for controlled drugs (CDs) were excessive and the two-staff resource impacted other responsibilities.

SNCDA is used in various healthcare settings and although RNs may have initial anxieties there is no evidence to suggest it has any adverse effect on safety. Many feel it is safer.⁽¹⁾

A practice development approach was used to elicit the values and beliefs of IPU (Inpatient Unit) RNs surrounding SNCDA which informed policy, procedure, risk assessment and the programme of education. Roll out was gradual allowing confidence building in the process. Following the second successful cohort the clinical pharmacist, working across two hospices, recognised the potential in the second hospice and presented a proposal for collaborative working. Following scrutiny via the second hospice’s clinical governance structure, the two hospices entered into a joint working agreement.

Working in partnership has offered an opportunity to strengthen relationships and ensure quality and equity across both sites. Staff report feelings of autonomy, empowerment and of being more responsive to patient need.

⁽¹⁾ Taylor, V. Middleton-Green, L., Carding S. and Perkins P. 2016. Hospice nurse’s views on single nurse administration of controlled drugs.

Poster Abstracts of the Month: September

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:

• Pressure Ulcer Prevention in Palliative care
• Raising Death Awareness in Thailand, the Case of Life Unlocking Card Game
• ReSPECT - Find out what it means to me
• Scotland’s first pilot of the ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) process
• Sharing the Learning at the Palliative Care in Prisons Conference
• Supportive and Palliative Care in HMP Glenochil