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: October

Posted by Rebecca Patterson on October 28 2019 at 11:32

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!

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: August

Posted by Rebecca Patterson on August 14 2019 at 12:36

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:

Managing Long Term Conditions in the Community: A Specialist Palliative Care Community Services Approach

Author(s)

Veronica Turnbull

An ageing population is increasing the demand for multi-morbidity care, including palliative care. However, disparities exist in access to palliative care for patients with long term conditions.⁽¹⁾ In Scotland the majority of palliative care is provided by generalist health and social care teams, with support from specialist palliative care professionals.⁽²⁾ This work considers St Columba's Hospice Community Service developments that have improved access to specialist palliative care for people with long term conditions, and opportunities for next steps. Self-management, integrated working and education of generalist health and social care teams are presented considering challenges, opportunities and recommendations for practice.

References:

⁽¹⁾ Marie Curie (2015). Triggers for palliative care improving access to care for people with diseases other than cancer. Retrieved from https://www.mariecurie.org.uk/globalassets/media/documents/ policy/policy-publications/june-2015/triggers-for-palliative-care-full.report.pdf

⁽²⁾ Chest Heart and Stroke Scotland (2018) Scottish Non-Malignant Palliative Care Forum (SNMPCF)

Retrieved from: https://www.chss.org.uk/health-professionals/professional-forums-groups/scottish-non-malignant-palliative-care-forum-snmpcf

Multi-Disciplinary Palliative Care for Men Living with Duchenne: A Qualitative Interview Study

Author(s)

Dr Emma Carduff; Dr Sheonad Laidlaw

Background:

Duchenne Muscular Dystrophy (DMD) is an x-linked, ultra-rare neuromuscular condition affecting 1 in 3600-6000 live male births. Individuals live with an exceptional illness trajectory of prolonged dwindling, frailty and high symptom burden. A co-ordinated multidisciplinary team approach may increase the survival of those with DMD and improve their quality of life (QoL).

Aim:

To investigate QoL in adults with DMD living in the West of Scotland (WoS). Methods: The SEIQoL-DW tool was used to assess the five most important elements that contribute to an individual’s QoL – these were then used to guide qualitative interviews with 6 men in the WoS. A thematic analysis was undertaken.

Results:

Men living with DMD in the WoS described living good lives but feel “forgotten” due to perceived gaps in their care: poorly co-ordinated and infrequent health care; lack of multi-disciplinary team input and holistic care; and poor or no access to allied health care professionals, for example physiotherapy and psychological support.

Conclusions:

Numerous opportunities exist to introduce palliative care gently, as part of the MDT, early on and throughout the illness trajectory. Better co-ordinated multi-disciplinary care may be a solution allowing for an early introduction to palliative care and proactive advance care planning.

Palliative and End of Life Care: What do we know from Hospital, Hospice and Community data?

Author(s)

Aghimien Iyayi-Igbinovia; Andrew Mooney

The Information Services Division (ISD) presents a range of information to support the Scottish Governments Strategic Framework for Action on Palliative and End of life care. Information presented in this poster covers hospital, inpatient hospice and community activities to report on palliative and end of life care. This includes the annual end of life publication, place of death and end of life care pathways.

Palliative care for prisoners: a partnership approach

Author(s)

Dr Rachel Kemp; Libby Milton; Barbara Stevenson (Marie Curie Hospice, Edinburgh)

Gerry Michie; Angela Wotherspoon (HMP Edinburgh)

Background:

HMP Edinburgh has one of the highest populations of older, long term prisoners in Scotland. There are specific challenges to ensure high quality palliative and end of life care for this group. Barriers include:

• Identification of prisoners with palliative care needs

• Lack of 24/7 health care

• Timely access to medication

• Prison environment and regime

• Staff confidence and competence

• Serious sex offenders unlikely to be eligible for compassionate release.

Aim:

We have developed a partnership with our local prison, HMP Edinburgh, to transform the experience of palliative care for prisoners by:

1. Proactive identification of those with palliative care needs

2. Appropriate assessment and management plans

3. Planning to ensure palliative care needs can be safely and effectively met in the hospice or the prison

4. Support for staff

5. Addressing the barriers to out of hours health and social care support and access to medicines.

Approaches:

Initiatives focusing on the following three areas were developed:

• Clinical

• educational

• cultural shift.

Outcomes:

• Hospice staff attend prison palliative care meeting

• Prisoners with complex needs referred to specialist service

• Plans in development to access out of hours nursing care and medication

• Commitment to ongoing development work

• Hospice staff supportive and confident to look after prisoners

• Partnership with prison viewed by charity as an opportunity not a threat.

References:

Strategic Framework for Action on Palliative and End of Life Care. Scottish Government, 2015

Older Prisoners: learning from PPO investigations. Prison and Probation Ombudsman, 2017

Health and social care needs assessments of the older prison population. Public Health England, 2017

Palliative Care Guidelines in Practice – Impact on Patient Care

Author(s)

Charis Miller / Alison Winning

In order to assess the impact of the guidelines on patient care, a survey was circulated to palliative care networks and published on the guidelines website. The survey asked five questions to establish which guidelines are most used, how they are used in practice and what alternative sources of information practitioners use.

The poster will showcase key results from the survey and examples of how the guidelines have been used in practice to improve patient care.

Perceptions of palliative care community nurse specialists (CNS) of the feasibility and acceptability of introducing routine screening of delirium in the community palliative care setting

Author(s)

Anne Finucane; Tabitha Kanyui; Libby Milton

Background:

Delirium is a frequently misdiagnosed syndrome and palliative care community CNS are the best placed healthcare professionals to assess and recognize it by conducting routine delirium screening in the patients they care for. The 4AT is a brief tool that can be used to screen for delirium in any setting, though has been little evidence to date on its use in hospice settings.

Aim:

To explore CNS perceptions of the feasibility and acceptability of introducing routine screening of delirium in a community palliative care setting.

Method:

Semi-structured interviews with 12 community CNSs from a Scottish hospice.

Results:

Using the 4AT for routine screening of new patients referred to a community specialist palliative care team was feasible and acceptable to community nursing staff. Furthermore, staff perceived patients and families as mostly positive about its use. Overall CNS perceived it as useful in aiding early identification of delirium, though there was less consensus around when re-screening should occur.

Conclusion:

Further consideration on triggers for re-screening community patients is required, given the fluctuating nature of delirium, and the potential distress it causes.

Poster Abstracts of the Month: April

Posted by Rebecca Patterson on April 30 2019 at 11:31

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:

Evaluating the Safer Prescription of Opioids Tool (SPOT) in clinical practice

Author(s)

S Botros; Dr D Buchanan; Sir A Cuschieri; Dr R Flint; J Forbes; Professor J George; Dr S Jamieson

Introduction and Aims:

The study evaluated The Safer Prescription of Opioids Tool (SPOT), an app-based equianalgesic opioid conversion tool as a clinician decision support (CDS) platform in opioid dose conversion using clinical data across primary, secondary and tertiary care in a palliative care setting at a Scottish Health Board.

Methods:

This prospective clinical utility single-centre pilot study followed a mixed methods design. Prescribers were asked to complete an initial survey to explore their current opioid prescribing practice in palliative and end-of-life care. Thereafter, prescribers were asked to use SPOT for opioid dosage conversions in parallel to usual clinical practice. Lastly, prescribers were asked to evaluate SPOT through a survey and follow up focus group.

Results:

62% of conversions were for cancer pain and 72% for 24 hour-daily dose conversions. SPOT correctly matched the Gold Standard result in 258 of 268 (96.3%) calculations performed during the study period. Users had a statistically significant increase in confidence in prescribing opioids after using the tool.

Conclusions:

The data from the study highlights the role of CDS when users prescribe high risk medicines. Almost all of those participating in the study would double-check their equianalgesic opioid conversion calculations if there was a simple, quick and safe option to do so, reflecting a pressing clinical need in a high-risk prescribing environment.

Foundations in Palliative Care: A Programme of Facilitated Learning for Care Home Staff and Home Carers

Author(s)

Ali Humphries; Suzanne Nimmo; Shannon Rendall; Karen Stewart

High quality palliative and end of life care delivery across Scotland should be the gold standard, but to achieve this there must be robust education and training in place to support all health and social care staff to achieve this goal.

The Strategic Framework for Action on Palliative and End of Life Care (2015) highlights that everyone should have access to palliative and end of life care but acknowledges that there are challenges for staff to be released for training. Similarly, Macmillan Cancer Support in Scotland have also outlined in their priorities that people with palliative and end of life care requirements should have their experience improved, but to do this, we must develop and integrate the wider cancer workforce.

In order to improve the palliative and end of life care experience of people throughout Scotland, Macmillan Cancer Support commenced an educational programme in November 2017. The Macmillan Foundations in Palliative Care resource pack (FIPC) underpins the delivery of this training to Care Home and Care at Home staff.

To date we have provided 15 courses throughout Scotland and have trained 209 people.

This poster outlines the rationale for the above project and provides evidence of the preliminary qualitative and quantitative results.

Hospital Doctor's Experience of Caring for Dying Patients: Report of themes from free text responses

Author(s)

D Gray; G Haworth; H Hood; G Linklater; C Smyth

The aim of this study was to examine, by means of a postal questionnaire, the experience of all grades of doctors caring for patients dying in an acute hospital in Scotland. There was an overall 42% response rate (127/306). Of responding doctors 55% had cared for 10 or more patients in the previous year. A quarter of respondents had personal experience of bereavement out with clinical practice within the previous year. 65% of responding doctors agreed that their most memorable patient death had had a strong emotional impact upon them. Responding doctors reported benefit from peer support. There was no association between length of time as a doctor and difficulty rating for talking to patients about death (p-value 0.203). There was no association between difficulty rating and length of time working as a doctor when talking to relatives about death and dying (p value 0.205). The questionnaire enabled respondents to provide further information in relation to their own experience and the response have been grouped into themes and reported in this poster.

Impact of population ageing on end-of-life care in Scotland: Population based projections of place of death and recommendations for future service provision

Author(s)

Anna Bone; Catherine Evans; Anne Finucane; Barbara Gomes; Irene Higginson; Richard Meade; Scott Murray; Tim Warren

Background:

Due to global population ageing, we are expecting a rise in the number of deaths, with implications for service provision in care settings.

Aims:

To project where people will die from 2017 to 2040 across all care settings in Scotland, and identify expert recommendations in response to projected trends.

Methods:

Population-based trend analysis of place of death and a consensus group meeting.

Results:

Annual deaths in Scotland are projected to increase by 15.9% from 2016 to 2040. Between 2004 and 2016, proportions of home and care home deaths increased, while the proportion of hospital deaths declined. If current trends continue, the numbers of deaths at home and in care homes will increase and two-thirds of patients will die outside of hospital by 2040. To sustain current trends, recommendations included: 1) increase, equip and sustain the health and social care workforce 2) to build community capacity and resilience and 3) to hold a realistic national debate on funding of palliative care.

Conclusion:

End-of-life care provision in community settings needs to increase by over 60% by 2040, otherwise hospital deaths will increase. Investing in a community-based health and social care workforce; and identifying and supporting informal carers are crucial.

Improving identification of people who could benefit from a palliative care approach

Author(s)

Paul Baughan; Michelle Church; Laura Dobie

The current situation is that many people across Scotland are not being identified and not receiving palliative care. There are lots of different tools that support earlier identification. So, one of the things that we have done in Healthcare Improvement Scotland is to try and make sense of which tool to use in which situation. We've produced the Palliative Care Identification tools comparator, which explains what tools are available, how they work and provides a decision tree that can help services decide what tool would best suit their aims.

Improving Palliative Care for People who are Homeless in Scotland - Possible Solutions

Author(s)

Joy Rafferty

There is need to consider how palliative care services can be more accessible and responsive to the needs of people who are homeless in Scotland. Review of published and grey literature, online searches and networking identified ongoing projects/services providing palliative care for homeless people in developed countries worldwide. These were examined, looking for examples of good practice and consideration made of transferability to the Scottish context. Eleven types of projects were identified aiming to improve palliative care for people who are homeless. One solution is unlikely to meet all the needs of this complex varied group with combinations of different services ideal. There is scope in Scotland to engage with specialist GP practices for people who are homeless and provision of support and education to staff working with this group. Consideration should be given to developing respite/intermediate care beds in culturally appropriate settings (e.g. homeless hostels), which can be utilised for those with palliative care needs. With many homeless people affected by profound and complex loss, specialist bereavement support can be helpful. Homeless people are unlikely to proactively access services so effective outreach involving relationship building and partnership working with other services is vital.

Poster Abstracts of the Month: November

Posted by Rebecca Patterson on November 26 2018 at 15:25

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:

Âž improved integrated working

Âž improved access to assessment and services

Âž crisis prevention

Âž 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

Posted by Rebecca Patterson on October 25 2018 at 14:35

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.

¹https://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.

« Later entries Earlier entries »

RSS

Comments