scholarly journals A Review of Advance Care Planning Programs in Long-Term Care Homes: Are They Dementia Friendly?

2014 ◽  
Vol 2014 ◽  
pp. 1-11 ◽  
Author(s):  
Abigail Wickson-Griffiths ◽  
Sharon Kaasalainen ◽  
Jenny Ploeg ◽  
Carrie McAiney
Keyword(s):  
Advance Care Planning ◽  
End Of Life Care ◽  
Long Term Care ◽  
Care Home ◽  
Family Members ◽  
Care Planning ◽  
Term Care ◽  
Advance Care ◽  
The Impact

Background. Persons living with dementia in the long-term care home (LTCH) setting have a number of unique needs, including those related to planning for their futures. It is therefore important to understand the advance care planning (ACP) programs that have been developed and their impact in order for LTCH settings to select a program that best suits residents’ needs.Methods. Four electronic databases were searched from 1990 to 2013, for studies that evaluated the impact of advance care planning programs implemented in the LTCH setting. Studies were critically reviewed according to rigour, impact, and the consideration of the values of residents with dementia and their family members according to the Dementia Policy Lens Toolkit.Results and Conclusion. Six ACP programs were included in the review, five of which could be considered more “dementia friendly.” The programs indicated a variety of positive impacts in the planning and provision of end-of-life care for residents and their family members, most notably, increased ACP discussion and documentation. In moving forward, it will be important to evaluate the incorporation of residents with dementia’s values when designing or implementing ACP interventions in the LTCH settings.

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.

scholarly journals Developing Strategies to Improve Advance Care Planning in Long Term Care Homes: Giving Voice to Residents and Their Family Members

2014 ◽  
Vol 2014 ◽  
pp. 1-8 ◽  
Author(s):  
Kimberly Ramsbottom ◽  
Mary Lou Kelley
Keyword(s):  
Palliative Care ◽  
Quality Improvement ◽  
Advance Care Planning ◽  
Long Term Care ◽  
Family Members ◽  
Care Homes ◽  
Care Planning ◽  
Term Care ◽  
Advance Care

Long term care (LTC) homes, also known as residential care homes, commonly care for residents until death, making palliative care and advance care planning (ACP) important elements of care. However, limited research exists on ACP in LTC. In particular, research giving voice to family members and substitute decision makers is lacking. The objective of this research was to understand experiences, perspectives, and preferences to guide quality improvement of ACP in LTC. This qualitative descriptive study conducted 34 individual semistructured interviews in two LTC homes, located in Canada. The participants were 31 family members and three staff, consisting of a front line care worker, a registered nurse, and a nurse practitioner. All participants perceived ACP conversations as valuable to provide “resident-centred care”; however, none of the participants had a good understanding of ACP, limiting its effectiveness. Strategies generated through the research to improve ACP were as follows: educating families and staff on ACP and end-of-life care options; better preparing staff for ACP conversations; providing staff skills training and guidelines; and LTC staff initiating systematic, proactive conversations using careful timing. These strategies can guide quality improvement of palliative care and development of ACP tools and resources specific to the LTC home sector.

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.

scholarly journals The Impact of Prior Advance Care Planning Documentation on End-of-Life Care Provision in Long-Term Care

2020 ◽  
Vol 23 (2) ◽  
pp. 172-183
Author(s):  
Henry Y.H. Siu ◽  
Dawn Elston ◽  
Neha Arora ◽  
Amie Vahrmeyer ◽  
Sharon Kaasalainen ◽  
...  
Keyword(s):  
Advance Care Planning ◽  
Long Term Care ◽  
Illness Management ◽  
Care Planning ◽  
Care Provision ◽  
Term Care ◽  
Advance Care ◽  
Eol Care ◽  
The Impact

Background The impact of prior advance care planning (ACP) documentation on substitute decision-makers’ (SDMs) knowledge of values for end-of-life (EOL) care, and its correlation with SDM satisfaction with EOL care provision, have not been assessed in long-term care (LTC). Methods A cross-sectional survey of 2,595 SDMs from 27 LTC homes assessed: 1) knowledge of pre-existing ACP documentation and values for EOL care, and 2) the importance and satisfaction of EOL care provision in LTC. Knowledge of values for EOL care was compared to administrative documentation. Importance and satisfaction were plotted on a performance-importance grid. Multiple linear regression assessed whether knowledge of pre-existing ACP documentation correlated with satisfaction. Results The response rate was 25% (658/2,595); 69% of LTC residents had pre-existing ACP documentation. Discordance was noted between SDMs’ knowledge of values for EOL care and administrative documentation. Pre-existing knowledge of ACP documentation was not correlated with EOL care provision satisfaction. Priority areas for increasing satisfaction include illness management, SDM communication, and relationships with LTC clinicians. Conclusions The discordance between SDMs’ knowledge of values for EOL care and formal documentation needs to be addressed. Although pre-existing ACP documentation does not impact satisfaction, EOL care provision could be improved by targeting illness management, SDM communication, and relationships with LTC clinicians.

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.

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