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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

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 eight of these:

 

Culture Sharing: Death and dying in North India – learning from a mentorship visit to a rural palliative care team in North India

Author(s)

Kim Donaldson; Lorraine Wilson

Harriet Benson Memorial Hospital (HBMH) is part of the Emmanuel Hospital Association (EHA), a charitable organisation delivering healthcare in rural North India. HBMH provides general, obstetric, public health and palliative care services to people in and around the Lalitpur district, Utter Pradesh. Following an evaluative report1 of the Lalitpur palliative care services, the Community Palliative Care Team Lead and Practice Development Facilitator from St Columba’s Hospice visited to offer support and mentorship palliative care team. Adopting a positive enquiry approach many areas of extraordinary practice were identified along with areas of practice for potential development beyond the scope of the Hospice UK (2009) toolkit2 for resource limited areas. The main areas for development included deepening understanding of pain assessment and management; identification of depression and clinical record keeping. The learning was by no means one sided, the acceptance of death as part of living was evident with nothing hidden has left us asking the question – can we say the same?

1 Haraldsdottir, E. and Mundy, D. 2015. Evaluation of the EHA Palliative Care Project Funded by EMMS International. Edinburgh.

2 Help the Hospices (Now Hospice UK). Palliative Care Tool Kit. Help the Hospices: London

Discontinuing non-essential interventions at the end of life – a split site, dual discipline quality improvement project

Author(s)

Dr Alana Brown-Kerr; Dr Lorna Frame; Dr Victoria Beveridge; Dr Sarah Bowers; Sr Julie Carroll; Sr Fiona Kerr; Dr Claire Borland; Dr Lauren Anderson; Dr Alistair McKeown; Dr Fiona Finlay.

Background/ Aim: Local, National and Scottish Government guidance advocates discontinuing burdensome interventions when caring for patients at the end of life. In two large Scottish hospitals, over 70% of patients identified to be dying underwent blood tests and National Early Warning Score (NEWS) monitoring within 24 hours of death. The aim was to reduce this figure by 50%.

Methods: Data were collected over 6 months in 9 wards across 2 hospital sites. PDSA methodology was used and the following tests of change undertaken; 1. Stickers stating “No further blood tests/NEWS monitoring” placed in medical/nursing notes 2. Joint medical and nursing education about optimising care at end of life 3. An “alert” incorporated into electronic case records to prevent requesting of blood tests.

Results: Initial analysis demonstrates a downward trend in unnecessary investigations/monitoring in the 24 hours before death. The full project will be analysed by early September.

Conclusion: This multi-disciplinary, multi-site quality improvement project demonstrated that a combined programme of medical and nursing education, with visual and electronic prompts can reduce the proportion of patients undergoing investigations in the last day of life, as well as increasing the confidence and skills of the MDT in caring for dying people.

Do Hospital Anticipatory Care Plans improve patient care? An evaluation of end of life care in a District General Hospital

Author(s)

Dr Alice Radley; Dr Heather Osbourne; Dr Tahlia McKenzie

Background: Hospital Anticipatory Care Plans (HACPs) are a clinical tool used to communicate end of life care decisions. This study evaluated delivery of patient care at the end of life with and without a HACP in place.

Method: All deaths in Hairmyres Hospital between 02/02/16-02/02/17 were reviewed using scanned case notes in Clinical Portal. All expected deaths were included in the study. Patients were categorised according to presence or absence of HACP at the time of death. The following aspects of end of life care were evaluated: treatment escalation decisions, DNACPR decisions, DNACPR discussions, referral to hospital palliative care services and consideration of patient’s preferred place of care. Descriptive statistics and significance testing were used to compare outcomes between HACP and no HACP groups.

Results: 1115 deaths occurred within the study period. 913 cases met the criteria for expected deaths.

Presence of a HACP predicted greater frequency of documented treatment escalation decisions (p<0.002); greater number of documented DNACPR decisions (p=0.002); more frequent DNACPR discussions with the patient’s family or next of kin (p=0.003); and a greater number of referrals to hospital Palliative Care services (p=0.00007).

Conclusions: HACPs are valuable clinical tools which can improve patient care at the end of life.

Do cloth bereavement bags make a difference when handing back patients’ belongings to bereaved relatives/ carers compared to the current plastic bags within the acute hospitals across NHS Greater Glasgow and Clyde?

Author(s)

Sharon Lambie

When a patient dies within NHS Greater Glasgow and Clyde (GG&C), belongings are currently returned in a plastic bag which can often seem undignified and disrespectful when handing these back to a loved one. These bags are universally used for all belongings, meaning that there is no recognition for someone who has been bereaved. An audit was undertaken to see whether there was a quality improvement with handing over patient's belongings in a cloth bereavement bag compared to a plastic bag. Included in the audit was returning patient's jewellery in a small organza bag and a condolence card was attached to the cloth bag using a ribbon. The audit showed very positive results from both staff and relatives experience concluding that it showed that belongings were handed back in a much more caring way with greater respect, dignity and compassion. Funding has now been granted to roll out the cloth bereavement bags in all areas across GG&C.

End of life care in hospital - are we getting it right?

Author(s)

Elizabeth Moss; Dr Fiona McFatter

We present the results of an audit of End of Life Care in Ninewells Hospital which was undertaken as a 4th year medical student project.

In 2014 the Scottish Government published guidance on 'Caring for people in the last days and hours of life'. This guidance is applicable in all care settings. As the majority of deaths occur in hospital it is essential that good end of life care is provided in this setting. A retrospective case note audit was undertaken of 50 patients who died between Jan-March 2017. A convenience sample from all deaths in that period was taken according to case notes which were available. The care provided was compared to the 4 Principles outlined in the Scottish Government Guidance. We found evidence of good end of life care. This included - in over 90% of cases there was documented end of life care discussion with patients or families, DNACPR forms had been completed and anticipatory medication was prescribed. There was direct hospital palliative care team input for only 5 patients. This suggests good end of life care was provided by a range of hospital specialties supported by existing skills in caring for people who are dying.

End of life care: service evaluation in a hospice in-patient unit

Author(s)

Amanda Powell; Gill Foster

Scottish Government guidance supports clinical and care staff planning and providing care during the last days and hours of life. A service evaluation was undertaken to establish whether care provision in a hospice in-patient unit encompassed its four key principles.

Thirty consecutive case-notes of patients who died in the in-patient unit were reviewed retrospectively for evidence of documentation of such care.

60% of patients had informative, sensitive and timely discussions about dying including their concerns, goals, wishes, and psycho-social and spiritual needs. 83% of those who didn’t had cognitive impairment or were unconscious.

97% of case-notes had documentation that death was expected, inappropriate interventions discontinued (97%), inappropriate drugs discontinued (93%) and anticipatory medication prescribed (100%).

DNACPR decision was discussed with 96% of patients without cognitive impairment. All patients with cognitive impairment had that decision discussed with a relative/carer.

100% of case-notes documented informative, timely communication with relatives/carers and advice regarding bereavement support and in 97% that practical advice was given after death.

A further study is planned to ascertain from clinical staff factors that prevent or facilitate exploration and documentation of the holistic needs of those with cognitive impairment.

End-stage chronic liver disease: a look at the last year of life

Author(s)

Ruth Yates; Eliana Saffouri; Fiona Finlay; Alix Morieux

Background: Patients with chronic liver disease (CLD) and its complications present frequently to hospital; at end-stage, supportive and palliative care needs can be high. In this study, the last year of CLD patients' lives is described to seek opportunities for earlier concurrent palliative care involvement.

Methods: A comprehensive retrospective case-note analysis was performed of patients who died of CLD (or complications) in a teaching hospital over a year (n=77).

Results: Alcohol was the aetiological factor in 84.4% of cases. Median survival from diagnosis to death was 2 years. A third of patients died on their first admission to hospital. Only 15 patients (19.5%) were referred to the Hospital Specialist Palliative Care Team (HSPCT). Many patients had investigations within 24 hours of death. The majority of patients (89.6%) had a DNACPR order in place at death but 38% were signed less than 24 hours before death.

Discussion: Despite evidence that patients with CLD have a poor prognosis, high symptom burden and supportive needs, only a small minority were referred to the HSPCT. This data highlights the need for greater collaboration between specialties to both help patients live as well as possible while preparing them for the reality of a poor prognosis.

Enhanced Palliative Care for Generalists Course

There is a hunger from non-specialists, in both Primary and Secondary care, for enhanced training in practical Palliative Care. With the aging population there will be an increasing need for enhanced palliative care to be delivered across the medical professions. At present there are a number of courses available, mainly distance learning, and often quite time consuming and too academic for a generalist looking to advance their skills and seeking practical guidance. Following feedback on the Scottish Palliative Care Guidelines, where there were comments that broader and more detailed guidance would be helpful, a proposal was taken to Macmillan to support the development of a training course for generalists.

The proposed Enhanced Palliative Care for Generalists course will be an educational program based on the well established model of a comprehensive, well evidenced, manual underpinning a two day interactive course. This model has been used successfully across the world to train nurses, doctors, paramedics, and allied health professionals. Examples of these include ATLS, ALS, PHTLS, APLS, and GEMS, amongst others. Areas covered include trauma, medical emergencies, paediatrics, and care of the elderly, but at present there is no similar course for Palliative Care. Macmillan have granted funding to develop one over the next 18 months to two years.

The proposal is to prepare a pre-course manual, and develop an interactive course that will be run over two consecutive days. This will include lectures to cover the principal issues, small group workshops, skill stations, and “real life” scenarios. There will be an assessment at the end, which will probably involve a MCQ and some form of practical assessment. The course will follow the general structure of the Scottish Palliative Care Guidelines, and have these as a core resource. The project has the support of both Health Improvement Scotland, and the Scottish Partnership for Palliative Care.

To develop the project, a steering group is being established, with membership including specialists in palliative medicine from all the professions involved, generalists, and an educator. They will oversee the direction and co-ordination of the project. The aim is to have this group meet for the first time towards the end of June.

The group will be chaired by the project clinical lead, Neil Pryde, who is responsible for delivering the final product. Class Professional Publishing are partnering to produce the course materials, and will provide support and guidance throughout the project. Writing of the manual will be divided into around twelve sections. Each of these will have a main author, with a specialist interest in the area covered, leading a small group. There will be a separate group to develop the interactive course. Finally the materials will be peer reviewed, and the course piloted, prior to release.

By Neil Pryde, Project Clinical Lead.

For further information or if you are interested in being involved with the steering group, writing parts of the manual, or developing the interactive course please email or phone Neil Pryde 07770574467

New research study aims to better support cancer patients with terminal illness

The University of Chester has been awarded funding by Macmillan Cancer Support for a new research study, to develop a psychological support intervention for cancer patients who have been referred into palliative care services.

A team of researchers at the University of Chester and the University of Edinburgh have been awarded a £34,000 grant for the collaborative project, which will be run in partnership with terminal illness charity Marie Curie.

The funding will enable Acceptance and Commitment Therapy (ACT) based psychological therapy sessions to be delivered to people with cancer who are transitioning into specialist palliative care services. The shift from curative to palliative treatment can be accompanied by high levels of psychological distress and poor quality of life. The intervention being developed as part of this study is called BEACHeS which stands for Brief Engagement and Acceptance Coaching in Community and Hospice Settings.

Previous research led by the University of Chester has already shown that ACT may help cancer survivors to become more resilient to suffering and psychological distress. This pilot work aims to extend that research to patients receiving palliative care.

ACT is a psychological therapy that aims to help people to get the most out of their lives, whatever their circumstances. As such the research team think this will be a complementary approach to mainstream palliative care. The pilot study began in March 2018 and will run for a year. Participants (patients at Marie Curie Hospice Edinburgh and Marie Curie Hospice Liverpool) will have one-to-one therapy sessions with a psychologist over a six-week period and the researchers will test whether this short intervention has improved their psychological wellbeing. The research team hope that this will lead to a future trial and larger programme of work researching the benefits of ACT for people with cancer and other life-limiting conditions.

Photo: The BEACHeS Study Steering Group (left to right): Sue Millington, Jenny Strachan, David Gillanders, Brooke Swash, Juliet Spiller, Anne Finucane and Nick Hulbert-Williams.

Poster abstracts of the month

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 six of these:

 

 

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

Author(s)

Dr Lucy Baird; Dr Juliet Spiller

Prevalence studies show that 13-42% 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 depression, and so the use of a screening tool could improve early identification and management of delirium and lead to improved outcomes. A quality improvement (QI) approach was used to improve screening for delirium on admission to a hospice unit. A baseline measure was taken of the rate of performance of cognitive assessment on admission. Five PDSA cycles were then undertaken. The first cycle determined staff preference between two cognitive assessment methods: the Short CAM and the 4AT. Two further PDSA cycles embedded the 4AT (the 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 showing poor sustainability prompted staff education and changes to admission documentation, resulting in an increase in cognitive assessment being performed, from 50% to 76%. The QI approach highlighted the need to link staff awareness of their use of the screening tool with perceived improvements in the treatment of delirium, which prompted the creation and implementation of a ‘Delirium Checklist’.

02. A very expensive sticking plaster?

Author(s)

Dr Sheonad Laidlaw; Dr Maire O’Riordan; Carolyn Mackay

From September 2015 – September 2016 the use of Lidocaine 5% plasters totalled 14% of Marie Curie Glasgow drug expenditure despite limited evidence on benefit in palliative care patients.

A retrospective analysis of in-patient case notes for October 2016 was undertaken. The primary aims of this analysis were: to better understand the number of patients using Lidocaine 5% plasters; to understand the rationale for prescribing this treatment and whether it is in line with current evidence and recommendations; and to reduce our total spend on a treatment of doubtful benefit.

50% patients admitted on this treatment were prescribed them appropriately as guided by Scottish Palliative Care Guidelines. 4 x patients had their treatment initiated by us inappropriately for musculoskeletal pain. 83% of patients were using 1 plaster daily, 17% using 2 daily (totally 98 plasters a week at a cost of £235.50).

We are currently assessing patient benefit at 48-hours and 1 week post admission/ initiation, and trialling a 24-hr patch free period if the pain is shown to respond to the plaster; by doing so we aim to ensure that Lidocaine plasters are only prescribed if of proven benefit and that expenditure is reduced where there is no patient benefit.

03. Accessing Advanced Care Plans: what's in a Key Information Summary (KIS)?

Author(s)

Dr Lucy Baird; Dr Jennifer A. Harrison

78% of people are admitted to hospital in their last year of life and 89% of those who die in hospital are admitted as an emergency. They often have an Anticipatory Care Plan, documented by GPs in the Key Information Summary (KIS). This can include invaluable information, but utilisation remains poor in the acute hospital setting. We aimed to find out more about the information contained in KISs and improve use of the KIS in the Acute Receiving Unit (ARU) at the Western General Hospital in Edinburgh using Quality Improvement methodology. We collected data from 20 patients/month (August ‘16 to July ‘17) admitted through ARU who had a KIS. We documented what information each KIS contained, whether we judged it to be useful and if there was any record of it being utilised in the first 24 hours following admission. A staff survey was performed which looked at KIS awareness. Following departmental teaching and poster display, data collection continued to track any improvement. KIS utilisation improved marginally, from 8% to 13%, with our interventions, but overall remained poor. Information most and least likely to be included in KISs was information related to chronic diseases and patient decisions respectively.

04. Adult and Children's Palliative Care Services Working Together to Transform Transitions through Trust and Innovation

Author(s)

Liz Smith; Fiona Wylie; Jayne Grant

There is growing evidence of the increased number of young adults (YA) living with life limiting conditions in Scotland. In response to this the Prince and Princess of Wales Hospice (PPWH) recognised they have a role to play in supporting YA and their family transition from paediatric to adult hospice services.

To support the above there was a need to ensure that the staff had the appropriate knowledge, skills and competence to support YA and their families.

Recognising a gap in these areas the hospice sought potential support and collaboration with Children’s Hospice Across Scotland (CHAS).The developed project aimed to support PPWH staff deliver a high standard of care to YA by addressing their learning needs through joint workshops and staff secondments to CHAS. This work supported building trust and establishing relationships between the children and adult hospice. Pre and post secondment evaluation, feedback and reflection is a key aspect of this work informing and developing the YA hospice service model.

To date this collaboration has been shown to be an effective way of influencing and managing change, building staff skills and confidence positively impacting on the patient and family experience

05. An Evaluation of the Lothian Palliative Care Redesign Programme

Author(s)

Niall Kieran; Helen Highley

Background: An independent evaluation of a collaborative programme initiative to review the local delivery of palliative care and delivery of a whole systems improvement.

Aim: The programme aimed to identify local palliative care need, working with local stakeholders to invest in identified improvement areas.

Methods: Qualitative interviews with stakeholders, individual project reports and quantitative data relating to hospital usage allowed for significant sources of evaluative data. In combining sources of data, the evaluation sought to measure both the practical impact, and the Strategic Added Value of strong partnership working

Results: A total of 8 projects were funded through the programme, with results from each project including:

ž an increase in potential number of patients identified as palliative

ž in excess of 500 social care workers receiving palliative care training

ž new model of working in Marie Curie Hospice Edinburgh

ž increased awareness raising for palliative care

ž improved experiences for employed carers

ž increase in the amount of time patients spent in their own homes and a reduction in deaths in hospital

ž befriending service launched for patients and families.

Conclusion: The investment in the programme allowed a culture of change to develop in local palliative care. In doing so, staff have benefited from increased palliative care knowledge, whilst ultimately patients now have improved outcomes and experiences.

06. An Innovative Approach To Community Nursing

Author(s)

Margaret O'Donnell

Introduction: Community palliative CNS, Margaret O’Donnell, identified many patients who were referred were in crisis with little understanding of their condition/ medications / and how to manage symptoms. To meet the needs of these patients an early intervention pilot was established

Aim: The overall aim of this pilot was to offer early intervention in symptom management and psychological support, for patients diagnosed with life limiting conditions by providing early access to specialist palliative care. The hope was that this would reduce the episodes of crisis noted by GPs and district nurses, and help to support patients and their families

Method: A seven month pilot was initiated, GP’s were asked to refer patients with life limiting illness to an outreach clinic held in the local health centre. Qualitative and quantitative audit was undertaken post pilot period. Activity at the clinic was monitored – patient referrals and outcomes, feedback regarding the care experience was sought from patients who attended the outreach clinic, healthcare professionals were asked for feedback regarding their experience of this service.

Results: Total referrals received/reason for referral/duration of care/patient outcome continuing care of patients from the pilot/other hospice services utilised

Feedback from patients and healthcare professions on their experience.

Strathcarron Hospice “Living Right up to the End” project

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

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

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

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

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

Clearly a different approach was required.

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

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

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

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

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

Individuals who had initially been anxious about engaging with “the hospice” gave us feedback on the experience of being involved in the project.

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

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

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

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

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

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

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

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

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

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