Sharing Current Scottish Practice

Poster Abstracts of the Month - July

The SPPC Annual Conference in 2013 featured 36 poster displays, sharing work and research underway across Scotland. Each month, this blog will focus on the content of a few of these posters. This month, we focus on:

• Planning ahead for people with dementia

• Should a person who is near to death never be enrolled as a subject in clinical research? A critical appraisal of the literature on this key question

• Staff perceptions of To Not Attempt Cardiopulmonary Resuscitation discussions in a palliative care setting - a qualitative study

• The 100% Project

Planning ahead for people with dementia
Author(s): Haining G; McKechnie L (Alzheimer Scotland; NHS Dumfries and Galloway; University of Edinburgh)

Forward planning has been internationally recognised as an effective approach to facilitating person-centred health and social care, but there is little evidence of this approach specifically designed for people with dementia. This innovative project provides an exciting opportunity to explore this emotive subject further and enable people with dementia to remain at the centre of decision making now and as they progress through their dementia journey.

The ‘planning ahead’ resources were designed to ensure that end of life issues were addressed in a timely fashion as part of the post diagnostic care provided for people with dementia.

Palliative care for people with dementia should commence at point of diagnosis.

An information booklet specifically designed for people with dementia addresses the many ‘what if’ questions regarding physical, psychological and social aspects of dementia. This helps people to make informed decisions about their future care. This allows people to make informed choices about their care and treatment as their illness progresses.

The ‘planning ahead’ booklet and documentation facilitates end of life care planning as part of post diagnosis support.

Should a person who is near to death never be enrolled as a subject in clinical research? A critical appraisal of the literature on this key question
Author(s): Mullin J (Cicely Saunders Institute; NHS Lothian)

Introduction: The consequence of not researching is a poor evidence base. However, some argue that persons near to death should never be enrolled into research projects, as they are vulnerable.

Aims: To pick apart the ethical maze surrounding research at the end of life:

• How can we justify research on anyone?
• Are persons approaching the end-of-life are truly vulnerable?
• What are the main ethical challenges to research at the end of life?

Method:

• Review of the published English-language literature
• Analysis with respect to: the biomedical framework of ethical and philosophical theory eg conflict between deontology and utilitarianism

Conclusions: We have a moral imperative to:
1. Both protect and empower vulnerable groups, ensuring that they also have access to the fruits of research (Justice)

2. Improve the evidence base for palliative care thus:
a) Avoiding administration of inappropriate, useless or harmful treatments and preventing
informal ‘n=1 trials’ without consent (non-maleficence)
b) Finding treatments which do work (beneficence)

3. Respect that some patients wish to take part in research, even if it is not of direct benefit to
them (autonomy)

4. Provide the utmost dignity and the highest levels of care for individuals (deontology) and our
population as a whole (utilitarianism)

Staff perceptions of Do Not Attempt Cardiopulmonary Resuscitation discussions in a palliative care setting - a qualitative study
Author(s): Finucane A; Low C; Mason B; Spiller J (Marie Curie Hospice Edinburgh; University of Edinburgh)

Background: Do not attempt cardiopulmonary resuscitation (DNACPR) decisions are made to prevent the distress caused by performing inappropriate CPR attempts. Clinical staff in specialist palliative care settings are often the people who discuss DNACPR with patients. Little is known about how staff experience and feel about these discussions; the factors that help and hinder
discussion of DNACPR; and how these discussions are best managed.
Method: Semi-structured interviews were conducted with 11 clinicians at Marie Curie Hospice Edinburgh working in inpatient and community settings. Interviews were digitally recorded, transcribed, and a thematic analysis was undertaken.
Findings: Most clinicians experience anxiety in advance of discussing DNACPR with patients, particularly when the discussion is not patient-initiated. Factors facilitating discussions include: patient characteristics (openness to discussion; acceptance of illness); clear trigger point (e.g. discharge from inpatient unit); and the clinician’s belief in the benefit of the discussion to the patient. Hindering factors include the clinician’s fear of causing patient distress; uncertainty
regarding whether CPR would be successful; and working in an environment where responsibility for the discussion does not lie with a specific staff member.
Conclusion: Acknowledging the challenging nature of DNACPR discussions and sharing experiences on what works well is warranted. A set of recommendations on how best to approach and manage DNACPR discussions will be outlined.

The 100% Project
Author(s): Neely R (Children's Hospice Association Scotland)
There is anecdotal evidence that families who have a child with a life-limiting condition experience isolation and stress because people avoid engaging with them about issues around death, dying and bereavement. Scotland has a number of organisations who are now focussing on how to encourage a societal shift in attitudes. As a children’s palliative care organisation, there is a
responsibility to families for CHAS to contribute to this work.

The 100% Project is a community engagement project which aims to start conversations about death, dying and bereavement in a life-affirming way. The poster highlights some of these activities to date.