Health care professionals’ perspectives of advance care planning for people with dementia living in long-term care settings: A narrative review of the literature

Dementia ◽  
2015 ◽  
Vol 16 (4) ◽  
pp. 486-512 ◽  
Author(s):  
Esther-Ruth Beck ◽  
Sonja McIlfatrick ◽  
Felicity Hasson ◽  
Gerry Leavey
Keyword(s):  
Health Care ◽  
Advance Care Planning ◽  
Health Care Professionals ◽  
Long Term Care ◽  
Care Planning ◽  
Term Care ◽  
Early Integration ◽  
People With Dementia ◽  
Advance Care

This paper provides an overview of the evidence on the perspective of health care professionals (HCPs) in relation to advance care planning (ACP) for people with dementia, residing in long-term care settings. A narrative approach was adopted to provide a comprehensive synthesis of previously published literature in the area. A systematic literature search identified 14 papers for inclusion. Following review of the studies four themes were identified for discussion; Early integration and planning for palliative care in dementia; HCPs ethical and moral concerns regarding ACP; Communication challenges when interacting with the person with dementia and their families and HCPs need for education and training. Despite evidence, that HCPs recognise the potential benefits of ACP, they struggle with its implementation in this setting. Greater understanding of dementia and the concept of ACP is required to improve consistency in practice. Synthesising the existing evidence will allow for further understanding of the key issues, potentially resulting in improved implementation in practice.

scholarly journals Evaluating the Conversation Starter Kit in Long Term Care: A Canadian Perspective

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 944-945
Author(s):  
Sharon Kaasalainen ◽  
Tamara Sussman
Keyword(s):  
Health Care ◽  
Advance Care Planning ◽  
Long Term Care ◽  
Family Members ◽  
Care Planning ◽  
Term Care ◽  
Before And After ◽  
Advance Care ◽  
Planning Intervention

Abstract This study evaluated an advance care planning intervention, the Conversation Starter Kit (CSK) booklet, for use in long term care (LTC) homes. This study used a quasi-experimental, one group pre/post design. Quantitative surveys were administered before and after a 3-month advance care planning intervention (CSK booklet). Data were collected at three LTC homes in southern Ontario. We collected data from 55 resident who were able to make decisions on their own paired with 11 family members of these residents. We also collected data from 24 family members of residents who were not able to make decisions on their own. Quantitative surveys were administered before and after the intervention. An additional structured interview was completed at the end of the intervention period, which included both closed and open-ended questions to assess perceptions about the CSK booklet’s use or non-use. Residents reported higher engagement in advance care planning after having completed the CSK booklet than before, particularly related to asking questions to health care providers about health care decisions. Family members reported feeling very certain that they would be able to make decisions on behalf of the resident but they felt less certain after completing the CSK booklet, implying that the CSK booklet raised their awareness of the types of decisions that they might need to make, hopefully triggering them to become more prepared for these decisions in the future. The CSK appears acceptable, easy to use for residents and family members/friends in LTC, and can improve resident engagement in ACP.

scholarly journals Evaluating the Implementation of the Conversation Starter Kit in Long Term Care

2021 ◽  
Vol 7 ◽  
pp. 237796082110518
Author(s):  
Sharon Kaasalainen ◽  
Tamara Sussman ◽  
Maria Nicula ◽  
Jack Lawrence ◽  
Genevieve Thompson ◽  
...  
Keyword(s):  
Health Care ◽  
Advance Care Planning ◽  
Long Term Care ◽  
Family Members ◽  
Care Homes ◽  
Care Planning ◽  
Term Care ◽  
Advance Care ◽  
Planning Intervention

Introduction Advance care planning can improve the quality of life for residents in long-term care homes and reduce stress for families. However, care home staff and families often lack knowledge about advance care planning, making it especially difficult for residents with dementia to communicate their care plan wishes. A Conversation Starter Kit may increase advance care planning awareness among staff and families. Objectives This study evaluated an advance care planning intervention, the Conversation Starter Kit booklet, for use in long term care homes. Methods Data were collected at three long-term care homes in southern Ontario. We collected data from 55 residents who were able to make decisions on their own paired with 11 family members of these residents. We also collected data from 24 family members of residents who were unable to make decisions on their own. This study used a quasi-experimental, one group pre/post design. Quantitative surveys were administered before and after a three-month advance care planning intervention. An additional structured interview was completed at the end of the intervention period, which included both closed and open-ended questions to assess perceptions about the booklet's use or non-use. Results Residents reported more engagement in advance care planning after completing the Conversation Starter Kit booklet, particularly related to asking questions to health care providers about health care decisions. Family members reported feeling very certain that they would be able to make decisions on behalf of the resident but felt less certain after completing the booklet, implying the booklet raised their awareness of the types of decisions they might need to make, hopefully prompting them to be more prepared for decisions in the future. Conclusions An advance care planning intervention – The Conversation Starter Kit booklet - appears acceptable and easy to use for residents and family members/friends in long-term care and can improve resident engagement in advance care planning. Although using the booklet may decrease efficacy for decision making among family members of long-term care residents, it may highlight the importance of more actionable engagement in advance care planning among residents, their families/friends, and staff.

Palliative care provision in long-term care facilities differs across Europe: Results of a cross-sectional study in six European countries (PACE)

2019 ◽  
Vol 33 (9) ◽  
pp. 1176-1188 ◽  
Author(s):  
Maud ten Koppel ◽  
Bregje D Onwuteaka-Philipsen ◽  
Lieve Van den Block ◽  
Luc Deliens ◽  
Giovanni Gambassi ◽  
...  
Keyword(s):  
Palliative Care ◽  
Advance Care Planning ◽  
Long Term Care ◽  
Care Planning ◽  
Care Provision ◽  
Cross Sectional ◽  
Term Care ◽  
Care Facilities ◽  
Advance Care

Background: While the need for palliative care in long-term care facilities is growing, it is unknown whether palliative care in this setting is sufficiently developed. Aim: To describe and compare in six European countries palliative care provision in long-term care facilities and to assess associations between patient, facility and advance care planning factors and receipt and timing of palliative care. Design: Cross-sectional after-death survey regarding care provided to long-term care residents in Belgium, England, Finland, Italy, the Netherlands and Poland. Generalized estimating equations were used for analyses. Setting/participants: Nurses or care assistants who are most involved in care for the resident. Results: We included 1298 residents in 300 facilities, of whom a majority received palliative care in most countries (England: 72.6%–Belgium: 77.9%), except in Poland (14.0%) and Italy (32.1%). Palliative care typically started within 2 weeks before death and was often provided by the treating physician (England: 75%–the Netherlands: 98.8%). A palliative care specialist was frequently involved in Belgium and Poland (57.1% and 86.7%). Residents with cancer, dementia or a contact person in their record more often received palliative care, and it started earlier for residents with whom the nurse had spoken about treatments or the preferred course of care at the end of life. Conclusion: The late initiation of palliative care (especially when advance care planning is lacking) and palliative care for residents without cancer, dementia or closely involved relatives deserve attention in all countries. Diversity in palliative care organization might be related to different levels of its development.

Narrative analysis of the ethics in providing advance care planning

2013 ◽  
Vol 21 (1) ◽  
pp. 53-63 ◽  
Author(s):  
Kristin R Baughman ◽  
Julie M Aultman ◽  
Ruth Ludwick ◽  
Anne O’Neill
Keyword(s):  
Advance Care Planning ◽  
Narrative Analysis ◽  
Long Term Care ◽  
Ethical Dilemmas ◽  
Care Planning ◽  
Term Care ◽  
Care Managers ◽  
Home Based ◽  
Advance Care

Our objective was to better understand the values and ethical dilemmas surrounding advance care planning through stories told by registered nurses and licensed social workers, who were employed as care managers within Area Agencies on Aging. We conducted eight focus groups in which care managers were invited to tell their stories and answer open-ended questions focusing on their interactions with consumers receiving home-based long-term care. Using narrative analysis to understand how our participants thought through particular experiences and what they valued, we identified seven themes representative of their work with consumers and families: humility, respect, responsibilities, boundaries, empowerment, courage, and veracity.

scholarly journals Using a self-directed workbook to support advance care planning with long term care home residents

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Tamara Sussman ◽  
Sharon Kaasalainen ◽  
Jack Lawrence ◽  
Paulette V. Hunter ◽  
Valerie Bourgeois-Guerin ◽  
...  
Keyword(s):  
Advance Care Planning ◽  
Long Term Care ◽  
Cognitive Capacity ◽  
Care Planning ◽  
Term Care ◽  
Resident Care ◽  
Advance Care

Abstract Background While advance care planning (ACP) has been shown to improve the quality of end-of-life (EOL) communication and palliative care, it is rarely practiced in long term care (LTC) homes, where staff time to support the process is limited. This study examines the potential of a publicly available self-directed ACP workbook distributed to LTC residents to encourage ACP reflection and communication. Methods Recruitment took place across three LTC homes, between June 2018 and July 2019. To be eligible, residents had to have medical stability, cognitive capacity, and English literacy. The study employed a mixed methods concurrent design using the combination of ranked (quantitative) and open (qualitative) workbook responses to examine documented care preferences and ACP reflections and communications. Results 58 residents initially agreed to participate in the study of which 44 completed self-directed ACP workbooks. Our combined quantitative and qualitative results suggested that the workbooks supported the elicitation of a range of resident care preferences of relevance for EOL care planning and decision making. For example, ranked data highlighted that most residents want to remain involved in decisions pertaining to their care (70%), even though less than half expect their wishes to be applied without discretion (48%). Ranked data further revealed many residents value quality of life over quantity of life (55%) but a sizable minority are concerned they will not receive enough care at EOL (20%). Open comments affirmed and expanded on ranked data by capturing care preferences not explored in the ranked data such as preferences around spiritual care and post mortem planning. Analysis of all open comments also suggested that while the workbook elicited many reflections that could be readily communicated to family/friends or staff, evidence that conversations had occurred was less evident in recorded workbook responses. Conclusions ACP workbooks may be useful for supporting the elicitation of resident care preferences and concerns in LTC. Developing follow up protocols wherein residents are supported in communicating their workbook responses to families/friends and staff may be a critical next step in improving ACP engagement in LTC. Such protocols would require staff training and an organizational culture that empowers staff at all levels to engage in follow up conversations with residents.

scholarly journals Exploration of the acceptability and usability of advance care planning tools in long term care homes

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Tamara Sussman ◽  
Sharon Kaasalainen ◽  
Rennie Bimman ◽  
Harveer Punia ◽  
Nathaniel Edsell ◽  
...  
Keyword(s):  
Content Analysis ◽  
Focus Group ◽  
Advance Care Planning ◽  
Long Term Care ◽  
Care Planning ◽  
Term Care ◽  
Usual Practice ◽  
Frail Older Persons ◽  
Advance Care

Abstract Objectives Despite known benefits, advance care planning (ACP) is rarely a component of usual practice in long-term care (LTC). A series of tools and workbooks have been developed to support ACP uptake amongst the generable population. Yet, their potential for improving ACP uptake in LTC has yet to be examined. This study explored if available ACP tools are acceptable for use in LTC by (a) eliciting staff views on the content and format that would support ACP tool usability in LTC (b) examining if publicly available ACP tools include content identified as relevant by LTC home staff. Ultimately this study aimed to identify the potential for existing ACP tools to improve ACP engagement in LTC. Methods A combination of focus group deliberations with LTC home staff (N = 32) and content analysis of publicly available ACP tools (N = 32) were used to meet the study aims. Results Focus group deliberations suggested that publicly available ACP tools may be acceptable for use in LTC if the tools include psychosocial elements and paper-based versions exist. Content analysis of available paper-based tools revealed that only a handful of ACP tools (32/611, 5%) include psychosocial content, with most encouraging psychosocially-oriented reflections (30/32, 84%), and far fewer providing direction around other elements of ACP such as communicating psychosocial preferences (14/32, 44%) or transforming preferences into a documented plan (7/32, 22%). Conclusions ACP tools that include psychosocial content may improve ACP uptake in LTC because they elicit future care issues considered pertinent and can be supported by a range of clinical and non-clinical staff. To increase usability and engagement ACP tools may require infusion of scenarios pertinent to frail older persons, and a better balance between psychosocial content that elicits reflections and psychosocial content that supports communication.

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