Palliative assessment and advance care planning in severe dementia: An exploratory randomized controlled trial of a complex intervention

Abstract

Patients with advanced dementia often receive poor end-of-life care. We aimed to design and pilot a palliative care and advance care plan (ACP) intervention. Patients had undergone emergency hospital admission and had severe dementia. The intervention consisted of a palliative care patient assessment which informed an ACP discussion with the carer, who was offered the opportunity to write an ACP for the person with dementia. Carer-patient dyads were randomized to 'usual care' or the intervention. Carer-related outcome measures included the Kessler Distress Scale, Decision Satisfaction Inventory, Client Satisfaction Questionnaire and the Euroqol-5D, measured at baseline, six weeks, six months and three months after bereavement. The Satisfaction with End of Life Care in Dementia Scale was completed if the patient died. The 32 patient participants were physically frail and in the advanced stages of dementia: 62% had pressure damage to the skin, all needed feeding assistance and 95% were in pain. Nearly 50% died during the six-month follow-up period. Carers were difficult to recruit during acute admission; 33 patients and carers entered the study (22 intervention arm; 11 control arm). Only seven carers made ACPs. The care planning discussion was well received, but few carers wrote an ACP, despite intensive support from an experienced nurse specialist. Advance care planning is, in theory, a necessary intervention for people with severe dementia; the reluctance of carers to write plans needs to be explored further.

Prior Advance Care Planning Is Associated with Less Decisional Conflict among Surrogates for Critically Ill Patients

“…Our main finding is consistent with data from a randomized controlled trial in which researchers found that advance care planning with patients during a hospitalization resulted in improved psychological outcomes for their surrogates (24). This contrasts with a study in which investigators found that advance care planning increased decisional conflict among surrogates for hospitalized patients with advanced dementia (25). However, that was a secondary finding in a small, exploratory trial, and, most important, the discussions involved only surrogates.…”

Towards improved decision support in the assessment and management of pain for people with dementia in hospital: a systematic meta-review and observational study

“…A study undertaken in one UK hospital showed that 95% of patients with advanced dementia were in pain as assessed using three observational pain tools [Abbey Pain Scale, Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC) and the Doloplus] as part of a randomised controlled trial in palliative care. 30 Research suggests that hospital patients with dementia are less likely to receive pain control than those without. 31 Poor pain control in the context of the acute environment is associated with neuropsychiatric symptoms, particularly aggression and anxiety, 32 as well as behavioural responses such as agitation, vocalisations and withdrawal.…”

Addressing Decision Making on End of Life Care for People with Dementia

“…With dementia, it is suggested that these discussions should take place in the early stages of the disease [5]. However, the topic can be distressing for some people and their families especially when health and social care professionals are challenged by the lack of interpersonal skills or training to facilitate such a sensitive discussion or are reluctant to assume responsibility for discussing ACP [6].…”