scholarly journals Applying the Knowledge-to-Action Framework to Engage Stakeholders and Solve Shared Challenges with Person-Centered Advance Care Planning in Long-Term Care Homes

2021 ◽  
pp. 1-11
Author(s):  
George A. Heckman ◽  
Veronique Boscart ◽  
Patrick Quail ◽  
Heather Keller ◽  
Clare Ramsey ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Long Term Care ◽  
Sufficient Information ◽  
Care Planning ◽  
Term Care ◽  
Health Crisis ◽  
Knowledge To Action ◽  
Advance Care

Abstract As they near the end of life, long term care (LTC) residents often experience unmet needs and unnecessary hospital transfers, a reflection of suboptimal advance care planning (ACP). We applied the knowledge-to-action framework to identify shared barriers and solutions to ultimately improve the process of ACP and improve end-of-life care for LTC residents. We held a 1-day workshop for LTC residents, families, directors/administrators, ethicists, and clinicians from Manitoba, Alberta, and Ontario. The workshop aimed to identify: (1) shared understandings of ACP, (2) barriers to respecting resident wishes, and (3) solutions to better respect resident wishes. Plenary and group sessions were recorded and thematic analysis was performed. We identified four themes: (1) differing provincial frameworks, (2) shared challenges, (3) knowledge products, and 4) ongoing ACP. Theme 2 had four subthemes: (i) lacking clarity on substitute decision maker (SDM) identity, (ii) lacking clarity on the SDM role, (iii) failing to share sufficient information when residents formulate care wishes, and (iv) failing to communicate during a health crisis. These results have informed the development of a standardized ACP intervention currently being evaluated in a randomized trial in three Canadian provinces.

Challenges in implementing an advance care planning programme in long-term care

2016 ◽  
Vol 24 (1) ◽  
pp. 87-99 ◽  
Author(s):  
Ciara McGlade ◽  
Edel Daly ◽  
Joan McCarthy ◽  
Nicola Cornally ◽  
Elizabeth Weathers ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Long Term Care ◽  
Care Plan ◽  
Care Planning ◽  
Life Care ◽  
Term Care ◽  
Advance Care

Background: A high prevalence of cognitive impairment and frailty complicates the feasibility of advance care planning in the long-term-care population. Research aim: To identify challenges in implementing the ‘Let Me Decide’ advance care planning programme in long-term-care. Research design: This feasibility study had two phases: (1) staff education on advance care planning and (2) structured advance care planning by staff with residents and families. Participants and research context: long-term-care residents in two nursing homes and one community hospital. Ethical considerations: The local research ethics committee granted ethical approval. Findings: Following implementation, over 50% of all residents had completed some form of end-of-life care plan. Of the 70 residents who died in the post-implementation period, 14% had no care plan, 10% (with capacity) completed an advance care directive and lacking such capacity, 76% had an end-of-life care plan completed for them by the medical team, following discussions with the resident (if able) and family. The considerable logistical challenge of releasing staff for training triggered development of an e-learning programme to facilitate training. Discussion: The challenges encountered were largely concerned with preserving resident’s autonomy, avoiding harm and suboptimal or crisis decision-making, and ensuring residents were treated fairly through optimisation of finite resources. Conclusions: Although it may be too late for many long-term-care residents to complete their own advance care directive, the ‘ Let Me Decide’ programme includes a feasible and acceptable option for structured end-of-life care planning for residents with variable capacity to complete an advance care directive, involving discussion with the resident (to the extent they were able) and their family. While end-of-life care planning was time-consuming to deliver, nursing staff were willing to overcome this and take ownership of the programme, once the benefits in improved communication and enhanced peace of mind among all parties involved became apparent in practice.

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.

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.

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.

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 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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