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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: September

The SPPC Annual Conference in 2016 featured 36 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on:

"The Breath of Life: The Whole Shebang!" A Quality Improvement Project to Develop a Self-Management Programme for Breathlessness


Dadd M, Milligan S, Mills A, Murray R, Park R, Rooney KD and Sime C

Background: Breathlessness is a distressing and complex symptom that can profoundly affect a person’s life, leading to loss of independence, increased distress and reduced quality of life. Evidence suggests that in conjunction with optimised medications, teaching people self-management techniques and offering psychological support can improve physical well-being, personal coping strategies and quality of life.

Project Aim: To develop a sustainable 12 week self-management programme for people living with end stage breathlessness.

Methods: Utilising the model for improvement, the multidisciplinary team set an aim, and developed a change package informed by current evidence. Continuous Plan, Do, Study, Act (PDSA) cycles were used to improve the programme. Twelve potential participants were identified and four accepted the invitation and completed the programme.

Results: Improvements were identified in participant’s social capital, long-term coping strategies and self-management of their breathlessness. However, the patient-reported outcome measures demonstrated few sustained improvements in symptom burden.

Conclusion: In keeping with current evidence, this project found most people living with breathlessness do not require a self-management programme. However, this pilot confirmed there is a need to provide additional support for some people living with complex symptoms. Furthermore, using a continuous improvement approach facilitated the co-production of a successful self-management programme.

The Development of Carer Services within the Prince and Princess of Wales Hospice


McCaffrey S and McNair T

The Carers Choice Service offers carers of people with palliative care needs with an opportunity to have a short break from their caring role, safe in the knowledge that their loved one is being cared for in their absence. The Bereavement visitor’s service offers a service of support to family members who are experiencing normal grief, with well trained and supervised volunteers. Both services offer the flexibility of being seen in your own home.

The poster highlights the development of Carer Services within the Prince and Princess of Wales Hospice.

Feedback from carers describe the benefits of accessing supports away from the cared for person’s home. However they also describe the stress and anxiety about leaving the cared for person on their own, particularly when the caring role becomes more demanding or the health of the cared for person is less stable or predictable. Developing a therapeutic befriending service for patients, will allow the carer to have a break from caring with the knowledge that their cared for person is well looked after, with both the carer and cared for person benefitting from the project.

Following the death of patients, carers are offered a wide range of services by the family support service, one of which is one to one counselling. However, a large number of bereaved family members experience normal grief, which does not require formal counselling. The bereavement visitor’s service fulfils this role. Offering knowledge and understanding of normal grief process provided in the bereaved persons home.

Turning Best Supportive Care into Active Care. A service development for patients with advanced lung cancer


Bowden J, Boyce S, Fenning S, Macpherson C, and Scragg S

In Southeast Scotland, approximately 40% of patients with lung cancer are for ‘best supportive care’ at diagnosis. Many more transition into BSC following palliative treatment/disease relapse. But there is no consensus about what constitutes BSC and who should deliver it. As a consequence, patients, carers and families can enter a care void and professionals are unclear about who is providing what support.

For those in the BSC category, survival is usually in the order of weeks. High rates of comorbidity and socioeconomic deprivation coinciding with rapidly progressive and symptomatic cancer, predisposes patients to apparently unpredictable crises and hospital admissions.

Our NHS Fife palliative care service, supported by Macmillan and government funding, has developed an early palliative care intervention for patients with lung cancer for BSC. We now see all such patients from the point of diagnosis, in all care settings.

We report evaluation findings following 18 months of the pilot service, including our impact on quality of care and experience, hospital admissions and place of death. We consider which other patients, with both cancer and non-cancer diagnoses, might benefit from a ‘BSC’ approach. Finally we reflect upon the challenges of developing, delivering and evaluating a new service.

Understanding complex need in palliative care: the perceptions of professionals across 3 settings


Carduff E, Finucane A, Johnston S, Morrish J, Spiller J and Winstanley C

Introduction: Complex needs for palliative care patients are not well defined, yet clarity is necessary to meet the needs of patients and their families in all settings.

Aim: To explore professionals’ understandings of patient complexity in palliative care across 3 settings.

Methods: We triangulated the findings from 3 qualitative studies. Interviews were conducted with professionals from primary, specialist palliative and acute care, coded thematically and analysed by each study researcher, independently. As a team, a framework was devised to comprehensively collate, compare and contrast all three sets of results.

Results: Thirty-four interviews were conducted. A number of themes spanned all three settings. The interaction between diverse physical, psychosocial and spiritual needs, existing co-morbidities, intractable symptoms and complicated social issues exacerbated patient complexity. Poor communication was highlighted, particularly between generalists and specialists, although primary care professionals highlighted the potential of electronic care summaries. Generalists felt they lacked skill in identifying and caring for complex patients and time for professional development in palliative care.

Conclusion: Patient complexity is influenced by patient and environmental factors which are specific to each setting. Better communication between disciplines and a clear definition of complexity will improve the identification of patients for specialist palliative care.

Poster abstracts of the month - June

The SPPC Annual Conference in 2016 featured 36 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on:

Making memories: Supportive care of an infant with a type IV laryngotracheoesophageal cleft


McCormack J, McDougall CM, McFadzean J, Montague ML and Smith P

The importance of palliative care in paediatric critical care, especially for patients with life-limiting conditions, is increasingly recognised. We will describe our supportive care of an infant with a lethal congenital malformation, which maintained stability for 3 months while clinical management decisions were made. This enabled his family to spend quality time with him and make invaluable memories.

A male term infant was diagnosed on day 6 of life with a type IVb laryngotracheoesophageal cleft. At 13 weeks, surgical repair was undertaken but, 2 weeks later, irreparable distal dehiscence was noted and care was withdrawn. Prior to surgery, he was maintained on nasal CPAP with periods off support as tolerated. He received regular chest physiotherapy. He was fed via orojejunal tube. A replogle tube was maintained on constant suction, with the tip in the distal oesophagus. An orogastric tube was kept on free drainage with regular aspiration. The patient was able to interact with his family, enjoy cuddles and baths, wear normal clothes and go out for walks both within and outside the hospital.

This case highlights the importance of promoting family-centred care and intentionally integrating palliative care into the paediatric intensive care unit.

Marie Curie Fife Hospice and Home Service


Heathfield H, Hekerem D, Hall L and Kieran N

Introduction: The pilot delivered tailored care and support at home for terminally ill people and their families. Locally coordinated support included nursing care, personal care, emotional support and practical information delivered by a team of registered nurses, healthcare assistants, health and personal care assistants and trained volunteers. An anticipated benefit was a changed pattern of use, reducing demand on acute services and increasing numbers of patients able to die at home.

Aim: The evaluation aimed to address patient and carer experience, quality and costs of the service.

Results: The evaluation evidenced improved quality outcomes for patients and a changed pattern of hospital use. Significantly fewer patients in the pilot group experienced a hospital admission (5.2%), compared to their matched controls (35.3%) with a shorter average stay in hospital (2.5 days less per admission) and more time in the community (15.8%). Furthermore, significantly more patients in the pilot group (96.1%) died at home, compared to matched controls (24.8%). The economic analysis showed a potential annual reduction in the costs of end of life care in Fife of £743,572.

Conclusion: The integrated service model demonstrates that investment in co-ordinated palliative care services delivers positive outcomes in quality of care and health economics.

No Decision About Me Without Me


Burton T, Keir S, Todd A and Visvanathan A

A summary of a number of tests of change aiming to improve the culture concerning patient inclusivity in anticipatory planning decisions in hospital care.

Nothing About Me Without Me - Involving People in Planning their Palliative Care


Andrew J and Gray E

Response to people with palliative care needs was ad hoc and person dependent resulting in an inequity of care across Dundee community settings.

Following money from the Dundee Integrated Care Fund a group of community staff ( nursing and social care) from a variety of agencies, carers and people with palliative care needs, developed person-centred response standards which would provide a more systematic response to people and their needs using the 5 ‘Must do with me principles’

A tool bundle was developed and tested using already recognised tools and triggers. This supported staff to identify, assess and produce an individualised care plan for that person and their carer.

A traffic light system was used to identify people needing either, intensive, intermediate or supportive care. Response times were agreed to ensure people with palliative care needs and their carers received timely visits and care could be planned according to their needs.

Staff have reported it is straightforward to use – and it is now spreading across NHS Tayside community settings.

People with palliative care needs and their carers report that they feel involved and listened to about their needs.

Project Evolution


Mearns J and Quinn C

This visually striking poster showcases the work carried out by the Renfrewshire Macmillan Palliative Care Project from Jan 2014 – Jan 2017. It highlights the evolution of the project through visual display from the infancy of the project through to the present day.

The poster describes through visual aids the development of the initial concept and how this was influenced by our engagement from both the general public and healthcare professionals. The findings from this engagement are summarised and displayed within the poster.

Our early work led to the creation of ‘About Me and My Care’ pack (a resource to support patients and carers co- ordinate their care), the Palliative Care Training Calendar (a resource to assist staff to find and access palliative care training) and the Electronic Concerns Checklist Resource (a resource for both healthcare professionals and patients to find support and information following an assessment using the patient centred concerns checklist).

This poster uses various methods to engage the viewers, ie text, pictures, charts and tables, wordle and includes a QR code to enable access to both the poster and our A4 information booklet electronically.

There is an A4 booklet which accompanies the poster highlighting more information on each of these components.

Poster abstracts of the month - April

The SPPC Annual Conference in 2016 featured 36 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on:

Electronic key information summaries allow timely documentation of patients’ wishes out of hours


Finucane A, Hall C, Leiva A, Lunan C, McCutcheon H, McLoughlin P, Murray S, Rhee J, Spiller J, and Tapsfield J

Introduction: Electronic Key Information Summaries (KIS) are shared electronic patient records widely used throughout Scotland (Tapsfield et al. 2016). These allow selected parts of the GP patient record to be routinely shared with healthcare professionals across settings. The KIS may contain vital information to support out of hours palliative care decision-making, such as patient preferences for place of care, DNAPCR status and anticipatory medicines.

Aim: To identify when different information pertinent to out-of-hours palliative care decision-making was serially recorded within the KIS for patients who died with cancer, organ failure or frailty and/or dementia.

Method: A retrospective review of the primary care notes of deceased patients across nine general practices in Lothian was conducted in 2014.

Results: We analysed 605 patient notes. A KIS was shared for patients with organ failure 22 weeks before death (Mdn=22, IQR=10-31), and for those with frailty and/or dementia, 20 weeks before death (Mdn=20, IQR=8-34). For patients with cancer, KIS’s were commenced later (Mdn=14, IQR= 6-27). Information on anticipatory medicines was shared two weeks before death (Mdn=2, IQR=1-6).

Conclusion: Electronic key information summaries facilitate the timely documentation and sharing of patient information that is vital to support out of hours decision-making and prevent inappropriate hospital admissions.

End of life care in the digital age


Jayne E

Outline of Sue Ryder's Online Community and Support for people who are dying, their families and people who are bereaved:

ž the need for such a 24/7 support (current lack of consistent co-ordinated support and advice overnight and at weekends)

ž why it was established (to meet this unfulfilled need and extend Sue Ryder's services beyond physical locations of palliative services)

ž how it works (community for people receiving end of life care, their families and people who have been bereaved to share experiences and provide peer-to-peer support, supported by bereavement counsellors; an advice section on practical issues such as will-writing through to coping when someone is dying)

ž what impact it has had on people's lives in its first year (figures on users, qualitative feedback)

ž relevance to Health and Social Care Partnerships (new responsibility for provision of palliative care could include services like this or signpost to services like this).

Evaluation of an Anticipatory Care planning tool for care home residents and their families


Boyd K, Gardner H, Highet G, Hockley J, MacKay A and McCutcheon H

The poster describes the methodology findings and conclusion of a primary care quality improvement project which evaluated the efficacy and acceptability of a tool (ACQ) being used to facilitate anticipatory care planning in two contrasting care homes in Edinburgh. An audit of acute clinical events was combined with an interview study involving 27 relatives, care home staff, and local GPs. Interviews were recorded, transcribed and analysed thematically. A focus group of 30 out-of-hours GPs discussed linked case vignettes. The project found that clear plans, recorded electronically and informed by the ACQ, ensured most acute clinical events were handled appropriately. The system was most vulnerable when protocol driven decisions were made by out of hours NHS services. The study concluded that anticipatory care planning should start before care home admission and be a coordinated, ongoing care process tailored to individual needs and embedded in the routine procedures of care homes. Further work to develop family and staff information using a patient public involvement approach is now underway.

Gleniffer Outreach Information and Support Centre as a Palliative Care Community Resource


Crawford A and Simpson H

Gleniffer Outreach Information and Support Centre is a Palliative Care Community Resource.

Our current Gleniffer Outreach facility relocated and opened in 2012 within the grounds of the Royal Alexandra Hospital in Paisley, a location that has proven significantly beneficial.

Our aim was to provide a facility where patients, carers, Health / Social professionals and the general public could drop in or telephone for advice, guidance or be signposted to more suited services relating to any aspect of malignant or non-malignant palliative care need(s).

The centre also provides an alternative location to the hospice, as it was reported that some individuals had difficulty with attending / returning to our hospice, especially for post bereavement support and counselling.

Initially we did not know that we were developing a public health approach to palliative care. However this transpired by encouraging a compassionate and resilient community approach, increasing public awareness around death and dying, offering practical support, networking with other local services, whilst furthering volunteer involvement.

HHeLP - Highland Hospice Electronically Linking People (in the Highlands)


Greenhalgh J, Keen J and Ravi G

Background: The Inverness based Highland Hospice, provides a 10 bed in-patient service, Day Therapy service, telephone advice for HCPs, outpatients, domiciliary visits and a Bereavement Counselling Service to adults with advancing life-limiting disease living in the NHS Highlands area.

The number of patients supported is the equivalent of 18% of the 2,500 people in this catchment area who die every year. HHeLP could quadruple the reach of current support.

Method: People are recruited from contact through any of the Hospice services and the primary care team is informed - as Virtual Hospice aims to complement existing care of primary care teams giving greater confidence to patients and carers in their ability to cope at home.

Individualised/prescribed resources are uploaded onto the portal and patient and carer are shown how to access and use. The portal enables secure messaging accessible by the team around the clock.

Recruitment: The pilot has recruited approximately 20 users from across Highlands.

Results: Early results have highlighted some interesting learning points


ž Increase range of resources

ž Introduce carers to the system with resources to help them in their caring role.

ž Training of volunteers to give IT support locally to patients/carers who struggle with the electronic access.

Poster abstracts of the month: February

The SPPC Annual Conference in 2016 featured 36 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on:

Developing Documentation for End of Life Care


Farquharson J

Following the recommendations of the Neuberger Report1 on the use of the LCP and subsequent guidance from SG we developed a means of recording, evidencing and auditing end of life care (EOLC) which met requirements of the SG’s four principles.

Thirteen key objectives were agreed in relation to evidencing and auditing appropriate EOLC. These were translated into an End of Life Care Record (EoLCR).

The project comprised two stages:

Stage 1 (5 week pilot)

ž Ward A: Patients identified as being in the last days/hours of life, care documented in EoLCR

ž Ward B: Patients identified as being in the last days/hours of life, care documented in Personal Care Records (PCR).

ž All data compared against the 13 objectives

ž EoLCR rolled out to all wards.

Stage 2 (Retrospective Audit)

A retrospective audit was undertaken of all deaths within the hospice over 3 months of implementation

We aimed to develop a robust means of evidencing EOLC which followed SG’s 4 principles. This relates to NHS Scotland’s 2020 vision that care will be provided to the highest standards of quality and safety, with the person being centre of all decisions.

The retrospective audit showed improvements in recording EOLC.

Using the EoLCR allowed us to evidence the principles of good EOLC especially in relation to nutrition, hydration and communication with patients/ families.

Development of the Scottish Acute Palliative Care Clinical Nurse Specialist Forum


Ewan D

Hospital palliative care teams have developed inconsistently over the past few decades and differ in their structure and numbers of healthcare professionals involved. The main role of an acute hospital palliative care team is to work collaboratively with other healthcare clinical specialties in an advisory, supportive and educative capacity to improve care delivered to palliative patients and families. The clinical nurse specialist in palliative care provides the backbone to these services across Scotland but with increasing clinical workloads, the demands on other key dimensions of the service such as research/audit/quality and service improvement can suffer. The founder of the group wanted to heighten the work that hospital palliative care teams do and provide a forum for acute palliative care clinical nurse specialists to network, provide information and support and collaboration on joint initiatives for practice and service development for hospital palliative care services across Scotland. The group developed named the Scottish Acute Palliative Care Clinical Nurse Specialist Forum consists of 30 members from 10 health boards across Scotland. The aims, objectives and workplan for the group are displayed on the poster along with contact details.

Difficult conversations with families and patients about end of life care after stroke: what are the educational needs of health care professionals?


Bailey F et al

This poster shows the results of a survey monkey in to the training and educational needs around having difficult and sensitive conversations with patients and families after an acute stroke. The participants were asked 9 questions related to their experience of this difficult area of work and what they felt were the most important areas for improving their own practice in future. This was the basis for a new STARS (Stroke Training Awareness Resource) module which was published on line in January 2016.

Does a pre-visit phone call result in improvement?


Smyth S

An area for improvement suggested by the Care Inspectorate was to 'consider' an audit of medication procedures in the CHAS at Home (CaH) Teams. We have four CaH Teams, one based at Rachel House, Robin House, Inverness and Aberdeen. Audits were carried out in 2015 and 2016 looking at the reviewing of the medication chart at the Pre Visit Phone Call and then on the arrival at the house. The five audit questions were based upon standards set out in the Standard Operating Procedure for Checklists were introduced between round one and two looking at standardising the pre visit phone call, preparing for a visit an on arrival at a visit checks.

The focus of this poster is looking at one of the five questions, 'Was a pre-visit phone call made to the parent/ carer to confirm the visit and check for if there have been any changes to the medication prescription since CHAS's last contact with the family?' The child's prescription often will have been altered by our acute and community colleagues. The poster demonstrates the before and after results following the introduction of the checklists and the feedback we later received from the Care Inspectorate.

Poster Abstracts of the month: November

The SPPC Annual Conference in 2016 featured 36 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on:

01. A quality improvement approach to cognitive assessment on hospice admission: could we use the 4AT or short CAM?


Baird L and Spiller J

Prevalence studies show that 15-42% of patients admitted to specialist palliative care inpatient units have delirium. Symptoms of delirium are often subtle and easily missed, or misdiagnosed as fatigue or even depression, and so the use of a screening tool could improve early identification and management of delirium and lead to improved outcomes. Patients admitted to the hospice are often frail and tired; therefore a quick and easy to use method of cognitive assessment is essential. A quality improvement approach was used to improve screening for delirium on admission to a hospice unit. The first cycle determined staff preference between the short CAM and the 4AT. Two further PDSA cycles embedded the 4AT (our preferred tool) into the admission process, establishing it as a usable tool in the hospice setting for up to 92% of admissions. A subsequent cycle showed poor sustainability prompting improvements to staff education and changes to admission documentation. The QI approach highlighted the need to link staff awareness of their use of the screening tool with perceived improvements in treatment of delirium which prompted the creation and implementation of a delirium checklist in the unit, which details the management of delirium, common causes and suggested investigations.

02. Addressing the Great Taboo


Alexander H and Beuken G

This short session was designed to address the taboo of talking about death, dying and bereavement. Although it had not been tried before and there were concerns that some participants may be distressed by the content, the observation results show that this was not a big problem. Participant responses during the session show that the audience knew quite a lot about the topic. This is helpful for peer learning but also because the session was designed as a structured conversation to encourage people to discuss the subject more openly, some mentioned that they planned some actions as a result of attending e.g. making a will or discussing their own funeral wishes with their family. Feedback from the end of the session showed that most people found the session very interesting, although others had mixed reactions, saying it was also challenging. In total 81% of those present requested more training, which indicates a strong desire for more. Some degree of discomfort was expected, however, the session appears to have been very positively received by most participants. There was a small level of not unexpected upset, and a strong desire to learn more.

03. Aiming to achieve realistic bereavement care throughout Greater Glasgow and Clyde


Dolan J, McNeill K, McVey H, Miller J and Neeson E

Introduction: ‘How people die remains in the memory of those who live on’. Facilitating a good death can impact positively on grief and bereavement.

57% of deaths in Greater Glasgow and Clyde occur in acute hospitals, as health care professionals we are in a privileged position to strive for good deaths. Enabling practitioners to be open and equipped to talk about death, dying and bereavement reduces negative experiences.

Aim: To increase practitioners’ confidence and competence when dealing with death, dying and bereavement.

To raise awareness of resources and processes to improve the experience of those affected by death, dying and bereavement in all care settings

Methods: Following a theoretical palliative care module practitioners returned to improve practice through various projects (in ITU, paediatrics, acute surgical receiving , orthopaedics, ENT, tissue viability, respiratory and general medicine), aiming to improve the patients and relatives experience of death, dying and bereavement out with specialist palliative care environment

Projects included:

ž memory making in the form of hand prints, hair and jewellery in organza bags

ž brightest star bereavement boxes

ž death certification checklist

ž raising awareness of resources and processes

ž care after death boxes.

Next steps: Secure funding to embed projects in daily practice, continuing partnership working

04. Approaches to delivering palliative care in nursing care homes in the UK: a systematic scoping review


Finucane A, Hockley J and Kohli-Lynch N

The UK population is ageing with more elderly people living and dying in nursing care homes, making these important settings for palliative care interventions. Multimorbidity and dementia are common and many residents will have high symptom burden and complex care needs. A scoping review was undertaken to map palliative care interventions in nursing homes in the UK. This involved systematically searching six databases from January 2000 to February 2016. 17 articles were identified. These consisted of 7 evaluations studies, 7 descriptive or observational studies and 3 implementation studies. The studies focused on palliative care pathways, advance care planning, staffing issues and healthcare links across settings. The majority of studies were focused on staff views with few focussing on residents’ experiences. However overall there was a paucity of research on palliative care interventions in UK nursing homes. An increased emphasis on developing and evaluating palliative care interventions that are informed by the needs and preferences of resident’s and family’s experiences is recommended.

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