scholarly journals Elephant in the room - Family members´ perspectives on advance care planning

2020 ◽  
Vol 38 (4) ◽  
pp. 421-429
Author(s):  
Lisa Kastbom ◽  
Marit Karlsson ◽  
Magnus Falk ◽  
Anna Milberg
Keyword(s):  
Advance Care Planning ◽  
Family Members ◽  
Care Planning ◽  
Advance Care

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.

Association Between Advance Directives and Quality of End-of-Life Care (DRAFT)

2018 ◽  
Author(s):  
Donna S. Zhukovsky
Keyword(s):  
End Of Life ◽  
Advance Directives ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Family Members ◽  
Care Planning ◽  
Life Care ◽  
Care Providers ◽  
Advance Care

Advance care planning is a complex process whereby an individual reflects on future care options at the end of life after reflecting on his or her values and goals for care. These values, goals, and preferences are then communicated to key stakeholders in the process (i.e., proxy and surrogate decision-makers, family members, and health care providers). It is unclear how well the completion of advance directives and a written outcome of advance care planning affect desired patient outcomes. In this chapter, a critical review is provided of a mortality follow-back survey that evaluates the association of advance directives with quality of end-of-life care from the perspective of bereaved family members. Study strengths and limitations are described, as are directions for future research.

17 Conversations on Living and Dying: Facilitating Advance Care Planning for Older People Living with Frailty. A Qualitative Study

2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i1-i6
Author(s):  
S Combes ◽  
C Nicholson ◽  
K Gillett ◽  
C Norton
Keyword(s):  
Older People ◽  
Advance Care Planning ◽  
Behavioural Change ◽  
Family Members ◽  
Community Dwelling ◽  
Care Planning ◽  
Structured Interviews ◽  
Living Well ◽  
Advance Care ◽  
Community Dwelling Older People

Abstract Introduction Advance care planning (ACP) is a process that supports people to articulate their future care preferences. This process is a priority for older people living with frailty due to their vulnerability to sudden deterioration, something that has been highlighted during the current pandemic. However, ACP is uncommon for older people living with frailty, hindering choice and person-centred end-of-life care. This study aimed to identify the barriers, facilitators and behaviours required to support cognitively-able, community-dwelling older people living with frailty to engage with ACP. Findings will inform the development an ACP intervention underpinned by behavioural change theory. Methods Semi-structured interviews with community-dwelling older people living with frailty (Clinical Frailty Score 6 or 7) and family members were audio-recorded, filmed and transcribed verbatim. A thematic analysis framework was developed using a recent systematic review, and expanded to reflect new themes. Results Ten older people living with frailty and eight family members were interviewed. The older people’s median age was 85 and seven were female. Family members were spouses (n = 4) and children (n = 4). The key findings were that: the meaning of ACP could be unclear and at times confusing; many of the older people believed ACP was not relevant to them; relationships and relational autonomy were of greater relevance to older people than autonomous decision-making; older people were more interested in living well now than in planning for the future. Conclusions Older people living with frailty need to be engaged with ACP in a way that helps them to understand what ACP is and why it is relevant for them. Professionals need to develop their skills in assessing readiness and facilitating ACP conversations with this population at the older person’s pace. Reframing ACP to include living well now alongside encouraging family inclusion would also relate better to this populations’ lives.

scholarly journals Views of advanced cancer patients, families, and oncologists on initiating and engaging in advance care planning: a qualitative study

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
J. T. Toguri ◽  
L. Grant-Nunn ◽  
R. Urquhart
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Family Members ◽  
Formal Training ◽  
Team Approach ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care ◽  
Services And Supports

Abstract Background Advance care planning (ACP) is a process by which patients reflect upon their goals, values and beliefs to allow them to make decisions about their future medical treatment that align with their goals and values, improving patient-centered care. Despite this, ACP is underutilized and is reported as one of the most difficult processes of oncology. We sought to: 1) explore patients’ and families’ understanding, experience and reflections on ACP, as well as what they need from their physicians during the process; 2) explore physicians’ views of ACP, including their experiences with initiating ACP and views on ACP training. Methods This was a qualitative descriptive study in Nova Scotia, Canada with oncologists, advanced cancer out-patients and their family members. Semi-structured interviews with advanced cancer out-patients and their family members (n = 4 patients, 4 family members) and oncologists (n = 10) were conducted; each participant was recruited separately. Data were analyzed using constant comparative analysis, which entailed coding, categorizing, and identifying themes recurrent across the datasets. Results Themes were identified from the patient / family and oncologist groups, four and five respectively. Themes from patients / families included: 1) positive attitudes towards ACP; 2) healthcare professionals (HCPs) lack an understanding of patients’ and families’ informational needs during the ACP process; 3) limited access to services and supports; and 4) poor communication between HCPs. Themes from oncologists included: 1) initiation of ACP discussions; 2) navigating patient-family dynamics; 3) limited formal training in ACP; 4) ACP requires a team approach; and 5) lack of coordinated systems hinders ACP. Conclusions Stakeholders believe ACP for advanced cancer patients is important. Patients and families desire earlier and more in-depth discussion of ACP, additional services and supports, and improved communication between their HCPs. In the absence of formal training or guidance, oncologists have used clinical acumen to initiate ACP and a collaborative healthcare team approach.

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 Family involvement in advance care planning for people living with advanced cancer: A systematic mixed-methods review

2022 ◽  
pp. 026921632110682
Author(s):  
Megumi Kishino ◽  
Clare Ellis-Smith ◽  
Oladayo Afolabi ◽  
Jonathan Koffman
Keyword(s):  
Mixed Methods ◽  
Advanced Cancer ◽  
Family Involvement ◽  
Advance Care Planning ◽  
Family Members ◽  
Logic Model ◽  
Future Research ◽  
Care Planning ◽  
Advance Care ◽  
Family Integrated

Background: Advance care planning is important for people with advanced cancer. Family involvement in advance care planning may be instrumental to achieving goal-concordant care since they frequently become surrogate decision-makers. Aim: To examine components, contexts, effects and linkages with intended outcomes of involving family members in advance care planning. Design: A mixed-methods systematic review, in which quantitative and qualitative data were extracted and synthesised using thematic synthesis leading to a logic model. Prospectively registered on PROSPERO (CRD42020208143). Data sources: Primary quantitative and qualitative research regarding family-involved advance care planning for people with advanced cancer were identified using Medline, Embase, PsycINFO and CINAHL from inception to September 2020. Quality appraisal was performed with ‘QualSyst’. Results: Fourteen articles were included. The synthesis identified perceptions of individuals and family members concerning family involvement in advance care planning and presents components for family-integrated advance care planning intervention. The logic model includes (i) addressing family members’ concerns and emotions and (ii) facilitating communication between individuals and family members which are distinctive when healthcare professionals engage with individuals as well as family members. Conclusions: This review provides a comprehensive understanding of family involvement in advance care planning and could inform its assessment and implementation in clinical practice. The number of included articles was limited. Therefore future research must focus on family integration and exploration of stakeholders’ perceptions to identify additional components and linkages between them within family-integrated advance care planning.

Voicing their choices: Advance care planning with adolescents and young adults with cancer and other serious conditions

2021 ◽  
pp. 1-9
Author(s):  
Lori Wiener ◽  
Sima Bedoya ◽  
Haven Battles ◽  
Leonard Sender ◽  
Keri Zabokrtsky ◽  
...  
Keyword(s):  
Social Support ◽  
Young Adults ◽  
Family Member ◽  
Advance Care Planning ◽  
Family Members ◽  
Generalized Anxiety ◽  
Care Planning ◽  
Care Providers ◽  
Formal Tool ◽  
Advance Care

Abstract Objectives To determine whether engaging in advance care planning (ACP) using a formal tool, Voicing My CHOiCES (VMC), would alleviate adolescent and young adults (AYAs) anxiety surrounding ACP and increase social support and communication about end-of-life care preferences with family members and health care providers (HCPs). Methods A total of 149 AYAs aged 18–39 years receiving cancer-directed therapy or treatment for another chronic medical illness were enrolled at seven US sites. Baseline data included prior ACP communication with family members and HCPs and measures of generalized anxiety, ACP anxiety, and social support. Participants critically reviewed each page of VMC and then completed three pages of the document. ACP anxiety was measured again immediately after the completion of VMC pages. One month later, participants repeated anxiety and social support measures and were asked if they shared what they had completed in VMC with a family member or HCP. Results At baseline, 50.3% of participants reported that they previously had a conversation about EoL preferences with a family member; 19.5% with an HCP. One month later, 65.1% had subsequently shared what they wrote in VMC with a family member; 8.9% shared with an HCP. Most (88.6%) reported they would not have had this conversation if not participating in the study. No significant changes occurred in social support. There was an immediate drop in anxiety about EoL planning after reviewing VMC which persisted at 1 month. Generalized anxiety was also significantly lower 1 month after reviewing VMC. Significance of results Having a document specifically created for AYAs to guide ACP planning can decrease anxiety and increase communication with family members but not necessarily with HCPs. Future research should examine ways ACP can be introduced more consistently to this young population to allow their preferences for care to be heard, respected, and honored, particularly by their healthcare providers.

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.

Sign in / Sign up

Export Citation Format

Share Document