Sharing Current Scottish Practice
This blog provides an opportunity for people to share examples of current Scottish palliative care practice that might be of interest to the palliative care community more widely. If you know of work underway that might be relevant for sharing on our website, please get in touch.
Poster abstracts of the month - March
The SPPC Annual Conference in 2014 featured 40 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:
End of Life Care – what matters
Family satisfaction with care in the in-patient unit IPU
Improving people’s experience of death, dying and bereavement
End of Life Care - What Matters?
Author(s) of poster: P Brooks-Young, S Fife, J Dunn, T Smith
This poster was designed initially for NHS Lothian Delivering Better Care Conference to share the key findings of unannounced visits to 71 ward areas across 14 sites within Lothian. This work helped to capture the delivery of end of life care within NHS Lothian in real-time, from the perspectives of patients, those important to them and health care staff.
Essentially for You - Stress Management for Carers. Impact of a Short Intervention on Carer's Stress
Author(s) of poster: Jenny Gilbert, Betty McGrory
Introduction: Family carers play a significant role in enabling people to be cared for at home in the last year of life. Yet many find themselves in a caring role and rarely identify themselves as ‘a carer’. Many describe their role as an overwhelming and stressful experience for which they feel ill-prepared.
Method: A 4-week stress management programme was offered to all carers from a hospice community caseload for 9 months from April 2013. Each session included structured reflection on the stresses of caring, explored how these could be managed and was followed by relaxation. An evaluation questionnaire was issued to participants in addition to a collective end-of-project focus group.
Results: Ten courses were delivered over 9 months. Out of 230 invitations, 52 carers were willing to participate. Evaluation identified a strong positive impact on carer’s wellbeing and affirmation that the stress management strategies discussed were helpful.
Conclusion: Recruitment was intensive but resulted in a good uptake. The group dynamic was a key success factor. The project enabled joint working between hospice and local carers groups. This will help build sustainable provision of this intervention for carers of people with palliative care needs.
Family satisfaction with care in the inpatient unit of a hospice
Author(s) of poster: Susan Campbell, Miriam Tadjali, Kirsty Cornwall
Using a validated questionnaire on the death of the patient, the opinions about admission to the hospice were sought from the ‘next-of-kin’. Pilot undertaken on 100 returned questionnaires. Comments and evidence provided shows that the carers felt the patients were treated with courtesy, dignity, respect and compassion. Symptoms of pain, breathlessness and agitation were assessed and treated well. Communication was of an excellent standard with all levels of staff and information was provided when required. Comments and suggestions were fed back to the team and where appropriate action taken. We also included an area for the name and address of the carer to be included if they wished to be contacted in the future to become involved in discussions regarding continuing improvements in Hospice care. From the pilot sample 38% completed this section and these people were invited to join a group looking into the needs of carers.
This group was supported by the Chaplain and senior nursing staff and is ongoing with the Family Care team. The survey is continuing - the comments and suggestions are important feedback to our multidisciplinary team.
Improving people's experience of death, dying and bereavement
Author(s) of poster: Mark Hazelwood, Rebecca Patterson
This poster describes the work of Good Life, Good Death, Good Grief (GLGDGG), an alliance working to make Scotland a place where people can be more open about death, dying and bereavement. The absence of such openness is a barrier to the delivery of person-centred health and care towards the end of life and to the development and mobilisation of individual and community assets in this field. 54,000 people die in Scotland each year and 224,000 people are bereaved. 29% of acute bed days are used by people in their last year of life. Nearly 1 in 10 patients will die during their current admission. Discussion is a pre-requisite for shared decision-making but is often absent in a culture reluctant to acknowledge death and dying. Low levels of public knowledge and awareness of practical, legal, medical and emotional aspects of death and bereavement limit capacity for self-management and provision of informal support. There is growing willingness by very varied organisations and individuals to promote greater openness about death, dying and bereavement. The presence of a national alliance to encourage and guide activity in this area is helpful in developing and mobilising individual and community assets.
Author(s) of poster: Norma Langford, Deputy Charge Nurse, University Hospital Cross house; Josaleen Connolly, Macmillan Project Lead, NHS Ayrshire and Arran
I have undertaken an education programme delivering practical palliative care through a distance learning module and placement shadowing members of the various specialist palliative care teams in hospital, community and at the Ayrshire Hospice. The education was provided by the University of the West of Scotland and the overall project was funded by Macmillan Cancer Support. This programme provided me with the knowledge, skills and competence in delivering general palliative care to patients who were admitted to Ward 4C where I work. I was concerned that the process for issuing the death certificate for the deceased sometimes caused unnecessary additional distress for families. Without a death certificate it is difficult for families to finalise funeral arrangements or to begin to inform other agencies that the person’s death has occurred. I felt there were a number of simple changes that could be made. I based my approach on the premise that families’ preferences should determine the way in which they obtained the death certificate. This small change has now become standard practice and has helped to minimise distress for families by creating a simple, clear and compassionate approach for handing over a death certificate to a family member.
Poster Abstracts of the Month - August
The SPPC Annual Conference in 2013 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:
Understanding palliative and end of life care through community engagement
Up-skilling generalist nurses in palliative care
Using an outcome measure in specialist palliative care settings
The South Edinburgh Care Homes Project: A community nurse specialist led intervention to improve palliative care
Author(s): Finucane AM; Gardner H; Gibson H; McCutcheon H; McLoughlin P; Muir L; Murray SA; Oxenham D; Stevenson B (Marie Curie Hospice, Edinburgh; University of Edinburgh)
Background: Approximately 20% of people die in long term care settings. Hospices are well placed to support care homes to deliver palliative care to residents who would benefit.
Aim: To improve the delivery of palliative care to care home residents using a hospice-led model of care home support.
Approach used: Twenty-two South Edinburgh nursing care homes agreed to take part in the project. Care homes were divided into two geographically defined clusters. The intervention is currently being delivered to the first cluster. Key components of the intervention include: support from a dedicated Community Palliative Care CNS; two palliative care leads in each care home; palliative care training; palliative care review meetings with GPs, and implementation of the Supportive and Palliative Care Action Register.
Results: Baseline data relating to the deaths of 77 residents from eight care homes was collected. A high proportion died in the care home (92%); 83% had DNACPR documentation in place; 64% had some evidence of anticipatory care planning; and 55% had anticipatory medicines prescribed.
Conclusion: Despite a large proportion of residents dying in the care homes a significant proportion of deceased residents had no evidence of any anticipatory care planning. The intervention is will build on these results.
The Square Table Programme
Author(s): McGill M; McNamara K (Children's Hospice Association Scotland; Together for Short Lives)
This poster will describe the collaboration between two national organisations in the United Kingdom dedicated to children’s palliative care joining together to host three national conversations about children’s palliative care in Scotland.
Children’s Hospice Association Scotland (CHAS) is a national charity in Scotland and the sole provider of vital hospice services for children and young people with life-shortening conditions working at national, local and regional levels.
Together for Short Lives is the UK CPC organisation, working to help ensure that every child unlikely to reach adulthood, and their family have the best possible care and support whenever, and wherever they need it.
The Square Table programme offered a series of events which offered a structured environment in which the aspirations of children and young people with life limiting and life threatening conditions, together with the views and concerns of their parents and key carers were heard and understood in
common forum with key representatives from the entire children’s palliative care provider community.
Understanding palliative and end of life care through community engagement
Author(s): Connelly M; Hekerem D; Layden J; McLoughlin P; Sandeman K; Tyrell P (Argyll and Bute, Marie Curie Cancer Care)
Three Marie Curie service redesign programmes in Scotland (Argyll and Bute, Lanarkshire and Lothian) have been addressing the issue of health promoting palliative care and changing the culture around death, dying and bereavement.
This work has been led by extensive local community and stakeholder involvement to ensure that future initiatives and service design responds to the local needs and population. A series of stakeholder workshops were held in the
three areas and were attended by patient/carer representatives, voluntary, independent, health and social care. Participants were encouraged to brainstorm ideas and solutions to the question, ‘How would you improve the culture of death, dying and bereavement in your local area?’ A range of options were identified. This poster will describe the benefits of community engagement in health promoting palliative care, the common themes from across the three geographic areas and proposed work. It is anticipated that the engagement work will positively contribute to changing the culture towards death, dying and bereavement.
Up-skilling generalist nurses in palliative care
Author(s): Connolly J (NHS Ayrshire and Arran)
Aim: To up-skill 48 nurses’ knowledge and skills in palliative care who were working in the generalist areas within NHS Ayrshire & Arran over a 2 year period.
The programme was developed and implemented between the NHS, Ayrshire Hospice and the University of the West of Scotland (UWS) and funded by Macmillan Cancer Support. The purpose was to offer an opportunity to NHS nursing staff to complete a programme of academic and experiential learning in palliative care. The programme involved undertaking an academic distance
learning module with the University and a practice placement of 5 days with the different specialist palliative care teams. Time out to attend the scheduled placement and 6 study days was funded by Macmillan Cancer Support. A qualitative external evaluation was commissioned.
Results: Over 2 years, 39 nurses completed the programme. The impact of the academic and experiential learning was captured through semi structured interviews with the nurses, managers and key stakeholders. Ten key themes emerged.
Conclusion: The learning opportunity has been appreciated. Nurses feel more confident and are more aware of the other palliative care resources and services that are available to them and for patients in the wider community.
Using an outcome measure in specialist palliative care settings
Author(s): Cochrane E; Colville E; Doogan D; Ferguson M; Walker G (NHS Tayside - Specialist Palliative Care Services Dundee)
Patients were invited to participate in a 6-month pilot using the St Christopher’s Index of Patient Priorities (SKIPP) questionnaire within the Hospice, Day Care and Community Macmillan Nurse Team. Data was collected and analysed using the recognised and validated tool.
Results: Findings from this pilot would suggest that patients did benefit from input from all three teams and identified a positive shift for patients over a period of time. 121 completed questionnaires were analysed there was significant evidence to suggest a positive impact on patients’ quality of life, key symptoms and major concerns.
Discussion: It is recognised that obtaining valid and reliable measurement of the outcomes achieved by palliative care for patients is extremely challenging often because patients are too ill or because of fluctuating and changing needs. However the questionnaire takes account of response shift, a well known phenomenon in which a persons’ perception of subjective sensations can
change over time.
Conclusion: Having a tool such as SKIPP has been deemed a very useful way of evaluating the impact three areas within a Specialist Palliative Care Service have on a patients quality of life, key symptoms and major concerns. It is planned to repeat this exercise again for a 6 month period.
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