A co-design process developing heuristics for practitioners providing end of life care for people with dementia

NMUH Staff Publications

15

<h4 style="font-size: 13px; margin: 0px 0.25em 0px 0px; text-transform: uppercase; float: left; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">BACKGROUND:</span></h4><p style="margin: 0px 0px 0.5em; line-height: 1.538em; font-size: 1.04em; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">The end of life for someone with <span class="highlight">dementia</span> can present many challenges for practitioners; such as, providing care if there are swallowing difficulties. This study aimed to develop a toolkit of heuristics (rules-of-thumb) to aid practitioners making end-of-life care decisions for people with <span class="highlight">dementia</span>.</span></p><h4 style="font-size: 13px; margin: 0px 0.25em 0px 0px; text-transform: uppercase; float: left; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">METHODS:</span></h4><p style="margin: 0px 0px 0.5em; line-height: 1.538em; font-size: 1.04em; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">An iterative co-design approach was adopted using a literature review and qualitative methods, including; 1) qualitative interviews and focus groups with family carers and 2) focus groups with health and care professionals. Family carers were recruited from a national charity, purposively sampling those with experience of end-of-life care for a person with <span class="highlight">dementia</span>. Health and care professionals were purposively sampled to include a broad range of expertise including; general practitioners, palliative care specialists, and geriatricians. A co-design group was established consisting of health and social care experts and family carers, to synthesise the findings from the qualitative work and produce a toolkit of heuristics to be tested in practice.</span></p><h4 style="font-size: 13px; margin: 0px 0.25em 0px 0px; text-transform: uppercase; float: left; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">RESULTS:</span></h4><p style="margin: 0px 0px 0.5em; line-height: 1.538em; font-size: 1.04em; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">Four broad areas were identified as requiring complex decisions at the end of life; 1) eating/swallowing difficulties, 2) agitation/restlessness, 3) ending life-sustaining treatment, and 4) providing "routine care" at the end of life. Each topic became a heuristic consisting of rules arranged into flowcharts. Eating/swallowing difficulties have three rules; ensuring eating/swallowing difficulties do not come as a surprise, considering if the situation is an emergency, and considering 'comfort feeding' only versus time-trialled artificial feeding. Agitation/restlessness encourages a holistic approach, considering the environment, physical causes, and the carer's wellbeing. Ending life-sustaining treatment supports practitioners through a process of considering the benefits of treatment versus quality-of-life and comfort. Finally, a heuristic on providing routine care such as bathing, prompts practitioners to consider adapting the delivery of care, in order to promote comfort and dignity at the end of life.</span></p><h4 style="font-size: 13px; margin: 0px 0.25em 0px 0px; text-transform: uppercase; float: left; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">CONCLUSIONS:</span></h4><p style="margin: 0px 0px 0.5em; line-height: 1.538em; font-size: 1.04em; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">The heuristics are easy to use and remember, offering a novel approach to decision making for <span class="highlight">dementia</span> end-of-life care. They have the potential to be used alongside existing end-of-life care recommendations, adding more readily available practical assistance. This is the first study to synthesise experience and existing evidence into easy-to-use heuristics for <span class="highlight">dementia</span> end-of-life care.</span></p>