OP64 Examining patient-reported barriers to talking about advance care planning (ACP) with family physicians: a multi-site survey

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.

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Primary care clinicians’ confidence, willingness participation and perceptions of roles in advance care planning discussions with patients: a multi-site survey

Family Practice ◽

10.1093/fampra/cmz050 ◽

2019 ◽

Author(s):

Michelle Howard ◽

Jessica Langevin ◽

Carrie Bernard ◽

Amy Tan ◽

Doug Klein ◽

...

Keyword(s):

Primary Care ◽

Advance Care Planning ◽

Response Rate ◽

Family Physicians ◽

Care Planning ◽

Site Survey ◽

Advance Care ◽

Primary Care Clinicians ◽

To Receive ◽

High Willingness

Abstract Background People who engage in advance care planning (ACP) are more likely to receive health care that is concordant with their goals at the end of life. Little discussion of ACP occurs in primary care. Objective The objective of this study was to describe primary care clinicians’ perspectives on having ACP conversations with their patients. Methods We conducted a survey of family physicians and non-physician clinicians in primary care in 2014–2015. We compared family physicians and non-physician clinicians on willingness, confidence, participation and acceptability for other clinicians to engage in six aspects of ACP (initiating, exchanging information, decision coaching, finalizing plans, helping communicate plans with family members and other health professionals) on scales from 0 = not at all/extremely unacceptable to 6 = very/all the time/extremely acceptable. Results The response rate was 72% (n = 117) among family physicians and 69% (n = 64) among non-physician clinicians. Mean ratings (standard deviation [SD]) of willingness were high (4.5 [1.4] to 5.0 [1.2] for physicians; 3.4 [1.8] to 4.6 [1.6] non-physician clinicians). There was little participation (mean ratings 2.4 [1.7] to 2.7 [1.6] for physicians, 1.0 [1.5] to 1.4 [1.7] for non-physician clinicians). Non-physician clinicians rated confidence statistically significantly lower than physicians for all ACP aspects. Acceptability for non-physician clinician involvement was high in both groups (mean acceptability ratings greater than 4). Conclusion Current engagement of primary care clinicians in ACP is low. Given the high willingness and acceptability for non-physician clinician involvement, increasing the capacity of non-physician clinicians could enable uptake of ACP in primary care.

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

10.21203/rs.2.10529/v3 ◽

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.

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

10.21203/rs.2.10529/v2 ◽

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.

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OP06 Primary care clinicians’ confidence, willingness and participation in advance care planning discussions: a multi-site survey

10.1136/spcare-2019-acpicongressabs.6 ◽

2019 ◽

Author(s):

M Howard ◽

C Bernard ◽

M Slaven ◽

A Tan ◽

D Barwich ◽

...

Keyword(s):

Primary Care ◽

Advance Care Planning ◽

Care Planning ◽

Site Survey ◽

Advance Care ◽

Primary Care Clinicians

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Paediatric advance care planning survey: a cross-sectional examination of congruence and discordance between adolescents with HIV/AIDS and their families

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2016-001224 ◽

2017 ◽

Vol 9 (1) ◽

pp. e22-e22 ◽

Cited By ~ 6

Author(s):

Maureen E Lyon ◽

Ronald H Dallas ◽

Patricia A Garvie ◽

Megan L Wilkins ◽

Ana Garcia ◽

...

Keyword(s):

Advance Care Planning ◽

Care Planning ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Paediatric Hospital ◽

Life Threatening Illness ◽

Patient Reported ◽

Registration Number ◽

Life Threatening ◽

Advance Care

ObjectivesTo identify patient-reported paediatric advance care planning (pACP) needs of adolescents living with HIV and to examine the congruence with their family’s perception of their needs.MethodsA cross-sectional survey among six paediatric hospital-based outpatient HIV specialty clinics. Participants included 48 adolescent/family dyads (n=96 participants) within a larger study facilitating pACP. The main outcome measure was the Lyon Advance Care Planning Survey – Adolescent and Surrogate Versions-Revised.ResultsAdolescents’ mean age was 18 years (range ≥14–<21); 54% male; 92% African-American; 27% with prior AIDS diagnosis. If dying, 92% believed in completing an advance directive; 85% preferred to die at home;88% knowing how to say good bye; 71% being off machines that extend life and 77% dying a natural death. Best timing for end-of-life (EOL) decisions was while healthy (38%), when first diagnosed (17%), when first sick from a life-threatening illness (4%), when first hospitalised (8%), if dying (4%) and all of the above (19%). Prevalence-adjusted bias-adjusted Kappa (PABAK) measured congruence in pACP needs within adolescent/family dyads. There was substantial congruence in that being free from pain (PABAK=0.83), and understanding your treatment choices (PABAK=0.92) were very important or important. There was discordance about being off machines that extend life (PABAK=0.08) and when is the best time to bring up EOL decisions (PABAK=0.32).ConclusionsAreas of discordance were associated with life-sustaining choices and when to have the EOL conversation. Targeted, adolescent/family-centred, evidence-based pACP interventions are needed to improve family understanding of youth’s EOL wishes.Trial registration numberNCT01289444; Results.

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Disrupting end-of-life cancer care delivery: Results from the engagment of patients with advanced cancer trial.

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.15_suppl.6525 ◽

2017 ◽

Vol 35 (15_suppl) ◽

pp. 6525-6525

Author(s):

Manali I. Patel ◽

Vandana Sundaram ◽

Manisha Desai ◽

VJ Periyakoil ◽

James Kahn ◽

...

Keyword(s):

Decision Making ◽

End Of Life ◽

Healthcare Utilization ◽

Advanced Cancer ◽

Advance Care Planning ◽

Cancer Care ◽

Care Planning ◽

Patient Reported ◽

Advance Care

6525 Background: Sustainable approaches to improve quality and safety of care of patients with advanced cancer while concurrently reducing costs is a growing national need. As part of the Veterans Administration Engagement of Patients with Advanced Cancer (EPAC) trial, we trained a lay health worker (LHW) to engage patients with stage 3 and 4 cancer in early advance care planning (ACP). The goal of this follow-up study was to examine the effect of the LHW intervention on patient-reported care experiences, healthcare utilization, and costs in the last 30 days of life for patients who died within 15 months of enrollment. Methods: We evaluated patient-reported experiences with decision-making, healthcare utilization, and total healthcare costs 30 days prior to death. A T-test was used to compare patient experiences with decision-making. To compare ED use and hospitalizations, we utilized an exact Poisson regression. A generalized linear model with gamma link-log function was used to compare total costs. The latter methods adjusted for length of follow-up. Results: In the 30 days prior to death, 60 patients died in each arm within 15 months of enrollment (difference not statistically significant). Patients in the intervention had significantly improved rates of ACP documentation (98% versus 18% p < 0.001), improved experiences with decision-making as measured by an index ranging from 0-5 with higher values representing more favorable experience (4.73 (SD 0.61) vs 4.15 (SD 1.02)) p < 0.001), higher utilization of hospice (77% vs 52%, p < 0.005), lower rates of any emergency department use (5% versus 45% p < 0.001) and any hospitalization (5% versus 43% p < 0.001), and significantly lower total costs of care ($1,048 versus $23,482 p < 0.001) compared to the patients randomized to the usual care arm. Conclusions: Integrating a LHW into oncology care to engage patients in early advance care planning resulted in significantly improved patient experience, decreased utilization and decreased total costs in the last month of life. LHWs may represent a sustainable resource to facilitate optimal patient-centered cancer care at the end-of-life. Clinical trial information: NCT02966509.

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Determining the influence of patient-perceived curability on advance care planning in patients with cancer.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.27_suppl.198 ◽

2019 ◽

Vol 37 (27_suppl) ◽

pp. 198-198

Author(s):

Cameron Pywell ◽

Aidan Gilbert ◽

Rachel Charles ◽

Star Ye ◽

Gabrielle Betty Rocque

Keyword(s):

Marital Status ◽

Advance Care Planning ◽

Early Stage ◽

Performance Status ◽

Eastern Cooperative Oncology Group ◽

Patient Specific ◽

Care Planning ◽

Likelihood Ratios ◽

Patient Reported ◽

Advance Care

198 Background: Advance Care Planning (ACP) allows patients to express their wishes regarding medical interventions when they are no longer able to make decisions. We hypothesized that among cancer patients treated at the University of Alabama at Birmingham (UAB), those who perceived their disease to be incurable were more likely to have an ACP. Methods: This cross-sectional study utilized data from patient reported outcome (PRO) surveys administered at the UAB outpatient oncology clinic. PRO responses included Eastern Cooperative Oncology Group (ECOG) performance status, perceived curability, and ACP status. Clinical and demographic information abstracted from the electronic health record included sex, stage, disease progression, phase of care (treatment: diagnosis to 1 year; survivorship: 1 year to 6 months before death; end of life: 6 months prior to death), diagnosis date, race, and marital status. The association between perceived curability and ACP was evaluated using likelihood ratios (LR) and 95% confidence intervals (CI) from generalized linear models with a log link and Poisson distribution with robust variance estimates adjusting for sex, race, stage, phase of care, ECOG, and marital status. Results: We analyzed PRO responses from 818 patients with a variety of different cancers. The majority of patients were female (68%), white (74%), were married (61%), had an early stage (0/I/II/III) cancer with no progression (56%), and had an ECOG of 0 or 1 (74%). Gynecologic (30%) and hematologic (28%) were the most common malignancies. The majority of patients were in the treatment (46%) or survivorship (48%) phase of care. Most patients did not have an ACP (59%). The majority of patients believed that their cancer was curable (61%). In adjusted models, there was no difference in ACP status between those believing their cancer was curable versus incurable (LR: 0.97, CI: 0.77-1.23). Conclusions: The absence of difference in ACP with respect to perceived curability suggests that patients’ completion of ACP depends on other factors, which may be more patient-specific rather than disease-specific. Our data reinforce the importance of addressing ACP for all patients.

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