Sharing Current Scottish Practice

Caring for an adult receiving palliative care at home - An exploration of the perceptions and lived experiences of carers

Author(s):Connolly J; Milligan S (NHS Ayrshire and Arran)

Aim: To explore the lived experiences of carers providing care for an adult receiving palliative care at home.

Objective: This study explored carers’ experiences about what they need to know to provide care to determine the practical skills that carers believe they need for their role.

Methodology: A qualitative research design and an interpretative phenomenological approach were chosen for this study. Recorded semi-structured interviews were undertaken and following transcription, Burnard’s method was used to guide the analysis of the data until final themes emerged.

Results: A total of six interviews were conducted with eight bereaved participants. The three themes that emerged summarised the data – Knowing what is the right thing to do; Doing the right thing at the right time; Personal experiences of caring.

Clinical implications for practice included adequate preparation of carers with timely information and knowledge, assessment and provision of practical and emotional support as well as the necessary skills and knowledge needed.

Conclusion: Carers need specific knowledge and skills at different points over the duration of their role. Ultimately carers need to know that they are doing the right thing and that appropriate help and guidance will be available if they need it. In these ways the whole experience of caring for someone with palliative care needs at home can be improved.

Changes in place of death preferences in patients receiving specialist palliative care

Author(s): Arnol E; Evans R; Finucane AM; Oxenham D; Vanhegan L (Marie Curie Hospice Edinburgh; University of Edinburgh)

To have choice and control of where death occurs is central to a good death. The aim of this study was to explore the extent to which preferred place of death (PPD) changes as a patient approaches death; and to examine the pattern of these changes.

A retrospective case note review of all patients who died under the care of Marie Curie Hospice Edinburgh during a six month period was undertaken (311 patients).

Overall 204 patients had their preferences assessed by a clinician more than once. First assessment occurred 55 days prior to death; while last assessment occurred 5 days prior to death. Overall, 57% showed a change in recorded preference between first and last assessment. When first assessed, 64% of patients had an ‘unclarified’ preference; this fell to 23% when last assessed. Furthermore, when first assessed 19% chose home and 15% chose hospice; preferences for these locations increased to 33% and 40% respectively by last assessment.

The majority of patients whose PPD was unclarified developed a clear preference over time/as death approached. It is important for specialist Palliative Care services to develop systems for regular review of PPD.

Note: This poster was presented at the Marie Curie Conference in March 2013.

Children and Young People's Palliative Care

Author(s):Davies JA (NHS Ayrshire and Arran; SCYPPEx)

Summary of the Framework for Children and Young People's Palliative Care in Scotland and how the recommendations link to Living and Dying Well, CYPADM (Children and Young People's Acute Deterioration Management, a parallel document to the Adult DNACPR but differs in that it advises what will be done at end of life for CYP). The poster also shows the connection to Getting it Right for Every Child (GIRFEC) and partners involved in teams working with children and young people.

This poster was presented at the Paediatric Nursing Associations Congress in Glasgow, June 2013 and at the Children and Young People's Palliative Care Study Day in Glasgow, October 2013.

CYPADM: Children/Young People Acute Deterioration Management - Lothian Dissemination Pathway

Author(s):Marshall K; Pyper J (NHS Lothian)

Good communication is imperative to delivering optimum care and support to children/young people (C/YP) and their family. Launch of the national policy for resuscitation planning for C/YP (under 16years) in 2010, required development of a robust communication process. Ensuring a clear and consistent approach in sharing information around the emotive subject of resuscitation and end of life planning for children/young people was the key objective.

CYPADM may be completed for C/YP who have a recognised life limiting condition. The complexity of the C/YP’s condition can often mean that they will have a number of services and disciplines involved in their care. Therefore challenges around communication of agreed intervention cannot be under estimated. The pathway aims to ensure there is clarity in how information is shared between all disciplines which is pivotal in avoiding duplication of difficult discussion for C/YP and their family.