scholarly journals Addressing Patient-Reported Barriers to Advance Care Planning in Family Practice

2019 ◽  
Author(s):  
Carrie Bernard ◽  
Amy Tan ◽  
Marissa Slaven ◽  
Dawn Elston ◽  
Daren K. Heyland ◽  
...  
Keyword(s):  
Advance Care Planning ◽  
Family Members ◽  
Family Physicians ◽  
Response Analysis ◽  
Free Text ◽  
Care Planning ◽  
Medical Specialties ◽  
Free Text Response ◽  
Patient Reported ◽  
Advance Care

Abstract Background Although patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people’s expressed preferences. Patient and family engagement in Advance Care Planning (ACP) in the primary care setting could improve the concordance between patients’ wishes and the healthcare received when patients cannot speak for themselves. The aim of this study was to better understand the barriers faced by older patients regarding talking to their family members and family physicians about ACP. Methods In this multi-site cross-sectional study, three free text questions regarding reasons patients found it difficult to discuss ACP with their families or their family physicians were part of a self-administered questionnaire about patients’ knowledge of and engagement in ACP. The questionnaire, which included closed ended questions followed by three probing open ended questions, was distributed in 20 family practices across 3 provinces in Canada. The free text responses were analyzed using thematic content analysis and form the basis of this paper. Results 102 participants provided an analyzable response to the survey when asked why they haven’t talked to someone about ACP. 254 answered the question about talking to their physician and 340 answered the question about talking to family members. Eight distinct themes emerged from the free text response analysis: 1. They were too young for ACP; 2. The topic is too emotional; 3. The MD should be responsible for bringing up ACP 4. A fear of negatively impacting the patient-physician relationship; 5. Not enough time in appointments; 6. Concern about family dynamics; 7. It’s not a priority; and 8. A lack of knowledge about ACP. Conclusions Patients in our sample described many barriers to ACP discussions, including concerns about the effect these discussions may have on relationships with both family members and family physicians, and issues relating to patients’ knowledge and interpretation of the importance, responsibility for, or relevance of ACP itself. Family physicians may be uniquely placed to leverage the longitudinal, person- centred relationship they have with patients to mitigate some of these barriers.

scholarly journals Exploring Patient-Reported Barriers to Advance Care Planning in Family Practice

2020 ◽  
Author(s):  
Carrie Bernard ◽  
Amy Tan ◽  
Marissa Slaven ◽  
Dawn Elston ◽  
Daren K. Heyland ◽  
...  
Keyword(s):  
Advance Care Planning ◽  
Family Members ◽  
Family Physicians ◽  
Response Analysis ◽  
Free Text ◽  
Care Planning ◽  
Medical Specialties ◽  
Free Text Response ◽  
Patient Reported ◽  
Advance Care

Abstract Background: Although patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people’s expressed preferences. Patient and family engagement in Advance Care Planning (ACP) in the primary care setting could improve the concordance between patients’ wishes and the healthcare received when patients cannot speak for themselves. The aim of this study was to better understand the barriers faced by older patients regarding talking to their family members and family physicians about ACP. Methods: In this multi-site cross-sectional study, three free text questions regarding reasons patients found it difficult to discuss ACP with their families or their family physicians were part of a self-administered questionnaire about patients’ knowledge of and engagement in ACP. The questionnaire, which included closed ended questions followed by three probing open ended questions, was distributed in 20 family practices across 3 provinces in Canada. The free text responses were analyzed using thematic analysis and form the basis of this paper.Results: 102 participants provided an analyzable response to the survey when asked why they haven’t talked to someone about ACP. 254 answered the question about talking to their physician and 340 answered the question about talking to family members. Eight distinct themes emerged from the free text response analysis: 1. They were too young for ACP; 2. The topic is too emotional; 3. The MD should be responsible for bringing up ACP 4. A fear of negatively impacting the patient-physician relationship; 5. Not enough time in appointments; 6. Concern about family dynamics; 7. It’s not a priority; and 8. A lack of knowledge about ACP.Conclusions: Patients in our sample described many barriers to ACP discussions, including concerns about the effect these discussions may have on relationships with both family members and family physicians, and issues relating to patients’ knowledge and interpretation of the importance, responsibility for, or relevance of ACP itself. Family physicians may be uniquely placed to leverage the longitudinal, person- centred relationship they have with patients to mitigate some of these barriers.

scholarly journals Exploring Patient-Reported Barriers to Advance Care Planning in Family Practice

2020 ◽  
Author(s):  
Carrie Bernard(Former Corresponding Author) ◽  
Amy Tan ◽  
Marissa Slaven ◽  
Dawn Elston ◽  
Daren K. Heyland ◽  
...  
Keyword(s):  
Advance Care Planning ◽  
Family Members ◽  
Family Physicians ◽  
Response Analysis ◽  
Free Text ◽  
Care Planning ◽  
Medical Specialties ◽  
Free Text Response ◽  
Patient Reported ◽  
Advance Care

Abstract Background Although patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people’s expressed preferences. Patient and family engagement in Advance Care Planning (ACP) in the primary care setting could improve the concordance between patients’ wishes and the healthcare received when patients cannot speak for themselves. The aim of this study was to better understand the barriers faced by older patients regarding talking to their family members and family physicians about ACP. Methods In this multi-site cross-sectional study, three free text questions regarding reasons patients found it difficult to discuss ACP with their families or their family physicians were part of a self-administered questionnaire about patients’ knowledge of and engagement in ACP. The questionnaire, which included closed ended questions followed by three probing open ended questions, was distributed in 20 family practices across 3 provinces in Canada. The free text responses were analyzed using thematic analysis and form the basis of this paper. Results 102 participants provided an analyzable response to the survey when asked why they haven’t talked to someone about ACP. 254 answered the question about talking to their physician and 340 answered the question about talking to family members. Eight distinct themes emerged from the free text response analysis: 1. They were too young for ACP; 2. The topic is too emotional; 3. The MD should be responsible for bringing up ACP 4. A fear of negatively impacting the patient-physician relationship; 5. Not enough time in appointments; 6. Concern about family dynamics; 7. It’s not a priority; and 8. A lack of knowledge about ACP. Conclusions Patients in our sample described many barriers to ACP discussions, including concerns about the effect these discussions may have on relationships with both family members and family physicians, and issues relating to patients’ knowledge and interpretation of the importance, responsibility for, or relevance of ACP itself. Family physicians may be uniquely placed to leverage the longitudinal, person- centred relationship they have with patients to mitigate some of these barriers.

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.

Sign in / Sign up

Export Citation Format

Share Document