Discussing advance care planning: insights from older people living in nursing homes and from family members

Ingravallo, Francesca; Mignani, Veronica; Mariani, Elisabetta; Ottoboni, Giovanni; Melon, Marie Christine; Chattat, Rabih

doi:10.1017/s1041610217001983

Cited by 26 publications

(59 citation statements)

References 30 publications

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“…43,45,48–55,57–60,62–64,66,69–72,74–77,79–81,83 Abilities included difficulties reading and understanding documentation 58,60 and remembering ACP decisions. 59,60,66,70 The focus was on early engagement, prior to potential physical or cognitive deterioration 43,45,48,51–55,57–60,62,64,66,71,72,74,75,77,79–81 where ‘… the person may already be too sick to interpret their treatment preferences’. 43 Early engagement meant ‘… meaningful plans could be put in place […] so that the patient’s quality of life could be enhanced …’ 80 and that decisions could be reassessed throughout the frail elders’ end-of-life trajectory.…”

Section: Resultsmentioning

confidence: 99%

“…43 Early engagement meant ‘… meaningful plans could be put in place […] so that the patient’s quality of life could be enhanced …’ 80 and that decisions could be reassessed throughout the frail elders’ end-of-life trajectory. 45,48,52,57–59,62–64,69,76,81,83 For professionals, personal ability related to the knowledge and skills they required to proactively use and create ACP opportunities. Recommendations ranged from needing a greater understanding of what ACP meant, 72 to the ability to address cultural, socio-demographic and educational influences, 76 answer existential questions, 65 help frail elders connect ACP with their own values and beliefs, 56 and cross-sectoral liaison.…”

Section: Resultsmentioning

confidence: 99%

“…While it related to all stakeholders, recommendations focussed on professionals, organisations and systems. Several papers focussed on how ACP should be conducted, 45,51,52,58,59,61,64,73,75,77,78,80 for example, conversations should be ‘… focussed and brief …’, 78 use open questions ‘what things are most important to you, now and in the future?’, 75 be held in conducive environments 64 and include after-death arrangements. 59 Other papers recommended specific approaches.…”

Section: Resultsmentioning

confidence: 99%

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Implementing advance care planning with community-dwelling frail elders requires a system-wide approach: An integrative review applying a behaviour change model

et al. 2019

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Background: Facilitating advance care planning with community-dwelling frail elders can be challenging. Notably, frail elders’ vulnerability to sudden deterioration leads to uncertainty in recognising the timing and focus of advance care planning conversations. Aim: To understand how advance care planning can be better implemented for community-dwelling frail elders and to develop a conceptual model to underpin intervention development. Design: A structured integrative review of relevant literature. Data sources: CINAHL, Embase, Ovid Medline, PsycINFO, Cochrane Library, and University of York Centre for Reviews and Dissemination. Further strategies included searching for policy and clinical documents, grey literature, and hand-searching reference lists. Literature was searched from 1990 until October 2018. Results: From 3043 potential papers, 42 were included. Twenty-nine were empirical, six expert commentaries, four service improvements, two guidelines and one theoretical. Analysis revealed nine themes: education and training, personal ability, models, recognising triggers, resources, conversations on death and dying, living day to day, personal beliefs and experience, and relationality. Conclusion: Implementing advance care planning for frail elders requires a system-wide approach, including providing relevant resources and clarifying responsibilities. Early engagement is key for frail elders, as is a shift from the current advance care planning model focussed on future ceilings of care to one that promotes living well now alongside planning for the future. The proposed conceptual model can be used as a starting point for professionals, organisations and policymakers looking to improve advance care planning for frail elders.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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Implementing advance care planning with community-dwelling frail elders requires a system-wide approach: An integrative review applying a behaviour change model

et al. 2019

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“…However, they concluded that the capacity of some people with intellectual disabilities in terms of being able to understand would be a barrier to disclosure. Similarly, people with dementia have expressed how their views and opinions need to be listened to regarding their choice of care at the end of life even though their dementia affects their confidence in terms of such expression (Ingravallo et al., 2018).…”

Section: Discussionmentioning

confidence: 99%

Disclosure and plan of care at end of life: Perspectives of people with intellectual disabilities and families in Ireland

Cithambaram

Duffy

Courtney

2020

Brit J Learn Disabil

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Accessible summary Professionals are reluctant to discuss sensitive information with people with intellectual disabilities. People with intellectual disabilities and families wish to engage in end‐of‐life discussions. People with intellectual disabilities expressed how they could handle bad news and they felt that this information could be used to help make choices. People with intellectual disabilities and families want to develop a plan based on their choices and wishes and there is a need to respect this at the end of life. Abstract BackgroundRecently, more and more people with intellectual disabilities have been dying from life‐limiting conditions, and on many occasions, people with intellectual disabilities have not been informed of this. There is limited evidence concerning the views and opinions of this cohort regarding the information that is needed in order for decision‐making to occur at the end of life. Therefore, this study aimed to explore the perceptions of people with intellectual disabilities and families in terms of the information that is needed as part of end‐of‐life decision‐making. Materials and MethodsA qualitative approach was employed to explore the information needed by, and the decision‐making ability of, people with intellectual disabilities at the end‐of‐life phase. One‐to‐one interviews were carried out with nineteen people following the obtaining of ethical approval. The constant comparative method was used to analyse the data. ResultsIt was found that people with intellectual disabilities were comfortable with, and wished to know about, what was happening in their lives, including the existence of life‐limiting conditions, so that they would be able to create a good plan for their future care. It was also expressed how it was essential to create a plan of care that allowed professionals to provide excellent care and use of which prevented the occurrence of any ambiguity. ConclusionsThe study found that people with intellectual disabilities, especially those with mild and moderate, are able to handle complex and sensitive information and make decisions for themselves regarding their care when adequate support is in place.

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“…Elderly persons with early-stage Alzheimer’s disease did not reflect on future care,40 and elderly persons with dementia were not always able or wanted to discuss future care 41. Finally, most nursing home patients in a study of experiences with ACP expressed a desire not to think about the future and instead preferred to “live for the day” 42. Future not being important to patients in this study may partly be a consequence of their cognitive impairment;40,43 however it could relate to patients trusting health care professionals in making the right decisions for them, a finding also found by others 44.…”

Section: Discussionmentioning

confidence: 99%

<p>Significance of advance care planning in nursing homes: views from patients with cognitive impairment, their next of kin, health personnel, and managers</p>

Sævareid¹,

Førde²,

Thoresen³

et al. 2019

CIA

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Purpose: Advance care planning (ACP) performed by regular staff, which also includes patients with cognitive impairment and their next of kin, is scarcely studied. Thus, we planned an implementation study including key stakeholders (patients, next of kin, and health care personnel) using a whole-ward/system approach to ACP. We explored how they experienced ACP and its significance. Patients and methods: This qualitative study is part of a mixed-method implementation study of ACP. In four nursing homes, we did qualitative interviews and audio-recordings of meetings. We completed 20 individual semistructured interviews with participants soon after ACP conversations. The interviews included patients with cognitive impairment, their next of kin, and health care personnel. We also conducted four focus group interviews with staff and managers in the nursing homes and audio-recorded four network meetings with the project teams implementing ACP. Results: All participants appreciated taking part in ACP. Patients and next of kin focused more on the past and present than future treatment preferences. Still, ACP seemed to contribute to a stronger patient focus on end-of-life conversations. More generally, ACP seemed to contribute to valuable information for future decision-making, trusting relations, improved end-of-life communication, and saving time and resources. Conclusion: Safeguarding a strong patient focus on ACP and fostering a person-centered care culture in nursing home wards seem to be achievable through implementation of ACP that includes regular staff, patients with cognitive impairment, and their next of kin.

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Discussing advance care planning: insights from older people living in nursing homes and from family members

Cited by 26 publications

References 30 publications

Implementing advance care planning with community-dwelling frail elders requires a system-wide approach: An integrative review applying a behaviour change model

Implementing advance care planning with community-dwelling frail elders requires a system-wide approach: An integrative review applying a behaviour change model

Disclosure and plan of care at end of life: Perspectives of people with intellectual disabilities and families in Ireland

<p>Significance of advance care planning in nursing homes: views from patients with cognitive impairment, their next of kin, health personnel, and managers</p>

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