Advance Care Planning for people with dementia

My future wishes: Advance Care Planning (ACP) for people with dementia in all settings | NHS England | Alzheimer’s Society | tide

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Image source: http://www.england.nhs.uk

The guide provides signposting, information and support for colleagues in health, social and community care settings, around advance care planning for people living with  dementia. It identifies key actions from the point of an initial diagnosis of dementia through to the advanced condition, in order to highlight and prompt best practice irrespective of care setting.

It also considers situations where it has not been possible to initiate an ACP / future wishes conversation early and provides some tips on how to manage this.

The aim of this resource is to help practitioners, providers and health and social care commissioners:

  • create opportunities for people living with dementia to develop an ACP through
    initiating and / or opening up conversations;
  • ensure advance care planning is fully embedded in wider inclusive, personalised care and support planning for dementia;
  • ensure people living with dementia have the same equal opportunities as those
    diagnosed with other life limiting conditions / diseases, in terms of accessing palliative care services / support.

Full document: My future wishes: Advance Care Planning (ACP) for people with dementia in all settings 

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Social workers’ involvement in advance care planning

Advance care planning is a process of discussion that enables competent adults to express their wishes about end-of-life care through periods of decisional incapacity | BMC Palliative Care

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Although a number of studies have documented social workers’ attitudes toward, knowledge about, and involvement in advance care planning, the information is fragmented. The purpose of this review was to provide a narrative synthesis of evidence on social workers’ perspectives and experiences regarding implementation of advance care planning.

Thirty-one articles met the eligibility criteria. Six research themes were identified: social workers’ attitudes toward advance care planning; social workers’ knowledge, education and training regarding advance care planning; social workers’ involvement in advance care planning; social workers’ perceptions of their roles; ethical issues relevant to advance care planning; and the effect of social work intervention on advance care planning engagement. The findings suggest that there is a consensus among social workers that advance care planning is their duty and responsibility and that social workers play an important role in promoting and implementing advance care planning through an array of activities.

This study provides useful knowledge for implementing advance care planning through illustrating social workers’ perspectives and experiences. Further studies are warranted to understand the complexity inherent in social workers’ involvement in advance care planning for different life-limiting illnesses or within different socio-cultural contexts.

Full reference: Chong-Wen, W. et al. (2017) Social workers’ involvement in advance care planning: a systematic narrative review. BMC Palliative Care. Published online: 10th July 2017

Patient values informing medical treatment: a pilot community and advance care planning survey

Milnes, S. et al. BMJ Supportive & Palliative Care | Published Online: 2 March 2017

Objectives: We sought to identify priorities of care for patients attending an advance care planning (ACP) clinic and among the general population, and to identify factors associated with priorities other than prolonging life.

Conclusions: ‘Living as long as possible’ was not the most important value for ACP patients, or for a younger general population. Prioritisation of other goals appeared to be independent of extreme age or illness. When end of life treatment is being discussed with patients, priorities other than merely prolonging life should be considered.

Read the full article here

Advance care planning uptake among patients with severe lung disease

Sinclair, C. et. al. (2017) BMJ Open. 7:e013415

Objective: Advance care planning (ACP) clarifies goals for future care if a patient becomes unable to communicate their own preferences. However, ACP uptake is low, with discussions often occurring late. This study assessed whether a systematic nurse-led ACP intervention increases ACP in patients with advanced respiratory disease.

Conclusions: Nurse-led facilitated ACP is acceptable to patients with advanced respiratory disease and effective in increasing ACP discussions and completion of formal documents. Awareness of symptom burden, readiness to engage in ACP and relevant psychosocial factors may facilitate effective tailoring of ACP interventions and achieve greater uptake.

Read the full article here

A qualitative study exploring use of the surprise question in the care of older people

Elliott, M. & Nicholson, C.A. (2017) BMJ Supportive & Palliative Care. 7:32-38.

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Objective: The question “Would you be surprised if this patient were to die in the next 6–12 months?” has been included in UK palliative care guidance with the aim of supporting the identification and care planning of those nearing the end of life. Little is known about how the surprise question is utilised in the care of older people within primary care. This study sought to explore the perceptions and experiences of general practitioners (GPs).

Conclusions: Greater understanding is needed as to the difficulties experienced by GPs when assessing prognosis in older people. We propose a thematic model which could support GPs by focusing assessment on the supportive and palliative care needs of older people nearing the end of life.

Read the full article here

Community-dwellers’ views on advance care planning in older people

Michael, N. et al. (2017) BMC Palliative. 16:2

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Background: Community-dwelling consumers of healthcare are increasing, many aging with life-limiting conditions and deteriorating cognition. However, few have had advance care planning discussions or completed documentation to ensure future care preferences are acted upon. This study examines the awareness, attitudes, and experiences of advance care planning amongst older people and unrelated offspring/caregivers of older people residing in the community.

Conclusions: Advance care planning programs traditionally assume participants are ‘planning ready’ to legally appoint a substitute decision maker (power of attorney) and record end-of-life treatment preferences in short time frames. This contrasts with how community dwelling older people and offspring/caregivers conceive future care decisions over time. Advance care planning programs need to include provision of information, which supports older people’s advance care planning understanding and management, and also supports offspring/caregivers’ development of strategies for broaching advance care planning with older people, and preparing for potential substitute decision maker roles. Development and integration of strategies to support older people’s decision-making when in the ‘grey zone’, with fluctuating cognitive capacities, needs further consideration. Findings support an advance care planning model with conversations occurring at key points across a person’s lifespan.

Read the full article here

A Randomized Trial of Palliative Care Discussions Linked to an Automated Early Warning System Alert.

Picker, D. et al. Critical Care Medicine. Published online: October 20 2016

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Objective: To determine whether an Early Warning System could identify patients wishing to focus on palliative care measures.

Design: Prospective, randomized, pilot study.

Setting: Barnes-Jewish Hospital, Saint Louis, MO (January 15, 2015, to December 12, 2015).

Patients: A total of 206 patients; 89 intervention (43.2%) and 117 controls (56.8%).

Interventions: Palliative care in high-risk patients targeted by an Early Warning System.

Measurements and Main Results: Advanced directive documentation was significantly greater prior to discharge in the intervention group (37.1% vs 15.4%; p < 0.001) as were first-time requests for advanced directive documentation (14.6% vs 0.0%; p < 0.001). Documentation of resuscitation status was also greater prior to discharge in the intervention group (36.0% vs 23.1%; p = 0.043). There was no difference in the number of patients requesting a change in resuscitation status between groups (11.2% vs 9.4%; p = 0.666). However, changes in resuscitation status occurred earlier and on the general medicine units for the intervention group compared to the control group. The number of patients transferred to an ICU was significantly lower for intervention patients (12.4% vs 27.4%; p = 0.009). The median (interquartile range) ICU length of stay was significantly less for the intervention group (0 [0-0] vs 0 [0-1] d; p = 0.014). Hospital mortality was similar (12.4% vs 10.3%; p = 0.635).

Conclusions: This study suggests that automated Early Warning System alerts can identify patients potentially benefitting from directed palliative care discussions and reduce the number of ICU transfers.

Read the abstract here