Exploring patient-reported barriers to advance care planning in family practice

Bernard, Carrie; Tan, Amy; Slaven, Marissa; Elston, Dawn; Heyland, Daren K.; Howard, Michelle

doi:10.1186/s12875-020-01167-0

Cited by 63 publications

(77 citation statements)

References 43 publications

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“…International consensus definitions were recently adjusted and meant to encompass all "future" medical decision-making, which bundles together end of life decisions (under conditions of certainty) with serious illness (under conditions of uncertainty) [15]. ACP is widely misunderstood or not understood by lay people (even though they are engaging in ACP activities such as naming a substitute decision-maker) [6,16]. Nor is it really embraced and "trusted" by health care professionals.…”

Section: A New Approach: Advance Serious Illness Preparations and Plamentioning

confidence: 99%

“…substitute decision-maker) [6,16]. Nor is it really embraced and "trusted" by health care professionals.…”

Section: A New Approach: Advance Serious Illness Preparations and Plamentioning

confidence: 99%

“…Over the past decade, have we made progress in "preparing patients for end of life decision-making?" Recent studies suggest there are still considerable problems with the current approach [6][7][8][9][10][11][12][13][14]16]. Health care expenditures in the last years of life are increasing at a phenomenal rate suggesting the current approach to "end of life" planning is not working [20].…”

Section: A New Approach: Advance Serious Illness Preparations and Plamentioning

confidence: 99%

“…It has been more than a decade since leaders in the field proposed this concept of preparing patients for future decision-making, but it was still ensconced in the context of end of life medical care [ 19 ]. Over the past decade, have we made progress in “preparing patients for end of life decision-making?” Recent studies suggest there are still considerable problems with the current approach [ 6 , 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 , 16 ]. Health care expenditures in the last years of life are increasing at a phenomenal rate suggesting the current approach to “end of life” planning is not working [ 20 ].…”

Section: A New Approach: Advance Serious Illness Preparations and mentioning

confidence: 99%

“…This real-life anecdote highlights the complexity and challenge of communication and decision-making in the context of serious illness. Many people and health care professionals associate advance care planning (ACP) with planning for future end of life or terminal care [3][4][5][6]. This movement stems from society's understandable fear regarding how technology unleashed can keep people alive in health state's worse than death.…”

Section: Introductionmentioning

confidence: 99%

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Advance Care Planning (ACP) vs. Advance Serious Illness Preparations and Planning (ASIPP)

Heyland

2020

Healthcare

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COVID-19 has highlighted the reality of an impending serious illness for many, particularly for older persons. Those faced with severe COVID-19 infection or other serious illness will be faced with decisions regarding admission to intensive care and use of mechanical ventilation. Past research has documented substantial medical errors regarding the use or non-use of life-sustaining treatments in older persons. While some experts advocate that advance care planning may be a solution to the problem, I argue that the prevailing understanding and current practice of advance care planning perpetuates the problem and results in patients not receiving optimal patient-centered care. Much of the problem centers on the framing of advance care planning around end of life care, the lack of use of decision support tools, and inadequate language that does not support shared decision-making. I posit that a new approach and new terminology is needed. Advance Serious Illness Preparations and Planning (ASIPP) consists of discrete steps using evidence-based tools to prepare people for future clinical decision-making in the context of shared decision-making and informed consent. Existing tools to support this approach have been developed and validated. Further dissemination of these tools is warranted.

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Section: A New Approach: Advance Serious Illness Preparations and Plamentioning

confidence: 99%

“…substitute decision-maker) [6,16]. Nor is it really embraced and "trusted" by health care professionals.…”

Section: A New Approach: Advance Serious Illness Preparations and Plamentioning

confidence: 99%

Section: A New Approach: Advance Serious Illness Preparations and Plamentioning

confidence: 99%

Section: A New Approach: Advance Serious Illness Preparations and mentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Advance Care Planning (ACP) vs. Advance Serious Illness Preparations and Planning (ASIPP)

Heyland

2020

Healthcare

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Clinician- and Patient-Directed Communication Strategies for Patients With Cancer at High Mortality Risk

Takvorian,

Gabriel,

Wileyto

et al. 2024

JAMA Netw Open

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ImportanceSerious illness conversations (SICs) that elicit patients’ values, goals, and care preferences reduce anxiety and depression and improve quality of life, but occur infrequently for patients with cancer. Behavioral economic implementation strategies (nudges) directed at clinicians and/or patients may increase SIC completion.ObjectiveTo test the independent and combined effects of clinician and patient nudges on SIC completion.Design, Setting, and ParticipantsA 2 × 2 factorial, cluster randomized trial was conducted from September 7, 2021, to March 11, 2022, at oncology clinics across 4 hospitals and 6 community sites within a large academic health system in Pennsylvania and New Jersey among 163 medical and gynecologic oncology clinicians and 4450 patients with cancer at high risk of mortality (≥10% risk of 180-day mortality).InterventionsClinician clusters and patients were independently randomized to receive usual care vs nudges, resulting in 4 arms: (1) active control, operating for 2 years prior to trial start, consisting of clinician text message reminders to complete SICs for patients at high mortality risk; (2) clinician nudge only, consisting of active control plus weekly peer comparisons of clinician-level SIC completion rates; (3) patient nudge only, consisting of active control plus a preclinic electronic communication designed to prime patients for SICs; and (4) combined clinician and patient nudges.Main Outcomes and MeasuresThe primary outcome was a documented SIC in the electronic health record within 6 months of a participant’s first clinic visit after randomization. Analysis was performed on an intent-to-treat basis at the patient level.ResultsThe study accrued 4450 patients (median age, 67 years [IQR, 59-75 years]; 2352 women [52.9%]) seen by 163 clinicians, randomized to active control (n = 1004), clinician nudge (n = 1179), patient nudge (n = 997), or combined nudges (n = 1270). Overall patient-level rates of 6-month SIC completion were 11.2% for the active control arm (112 of 1004), 11.5% for the clinician nudge arm (136 of 1179), 11.5% for the patient nudge arm (115 of 997), and 14.1% for the combined nudge arm (179 of 1270). Compared with active control, the combined nudges were associated with an increase in SIC rates (ratio of hazard ratios [rHR], 1.55 [95% CI, 1.00-2.40]; P = .049), whereas the clinician nudge (HR, 0.95 [95% CI, 0.64-1.41; P = .79) and patient nudge (HR, 0.99 [95% CI, 0.73-1.33]; P = .93) were not.Conclusions and RelevanceIn this cluster randomized trial, nudges combining clinician peer comparisons with patient priming questionnaires were associated with a marginal increase in documented SICs compared with an active control. Combining clinician- and patient-directed nudges may help to promote SICs in routine cancer care.Trial RegistrationClinicalTrials.gov Identifier: NCT04867850

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Coaches Activating, Reaching, and Engaging Patients to Engage in Advance Care Planning

Rodriguez,

Parikh,

Kapphahn

et al. 2024

JAMA Oncol

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ImportanceAdvance care planning (ACP) remains low among patients with advanced cancer. Multilevel interventions compared with clinician-level interventions may be more effective in improving ACP.ObjectiveTo evaluate whether a multilevel intervention could improve clinician-documented ACP compared with a clinician-level intervention alone.Design, Setting, and ParticipantsThis randomized clinical trial, performed from September 12, 2019, through May 12, 2021, included adults with advanced genitourinary cancers at an academic, tertiary hospital. Data analysis was performed by intention to treat from May 1 to August 10, 2023.InterventionParticipants were randomized 1:1 to a 6-month patient-level lay health worker structured ACP education along with a clinician-level intervention composed of 3-hour ACP training and integration of a structured electronic health record documentation template (intervention group) or to the clinician-level intervention alone (control group).Main Outcome and MeasuresThe primary outcome was ACP documentation in the electronic health record by the oncology clinician within 12 months after randomization. Secondary, exploratory outcomes included shared decision-making, palliative care use, hospice use, emergency department visits, and hospitalizations within 12 months after randomization.ResultsAmong 402 participants enrolled in the study, median age was 71 years (range, 21-102 years); 361 (89.8%) identified as male. More intervention group participants had oncology clinician–documented ACP than control group participants (82 [37.8%] vs 40 [21.6%]; odds ratio [OR], 2.29; 95% CI, 1.44-3.64). At 12-month follow-up, more intervention than control group participants had palliative care (72 [33.2%] vs 25 [13.5%]; OR, 3.18; 95% CI, 1.91-5.28) and hospice use (49 [22.6%] vs 19 [10.3%]; OR, 2.54; 95% CI, 1.44-4.51). There were no differences in the proportion of participants between groups with an emergency department visit (65 [30.0%] vs 61 [33.0%]; OR, 0.87; 95% CI, 0.57-1.33) or hospitalization (89 [41.0%] vs 85 [46.0%]; OR, 0.82; 95% CI, 0.55-1.22). Intervention group participants had fewer hospitalizations than control group participants (mean [SD] number of hospitalizations per year, 0.87 [1.60] vs 1.04 [1.77]) and a lower risk of hospitalization (incidence rate ratio, 0.80; 95% CI, 0.65-0.98).Conclusions and RelevanceIn this randomized clinical trial, a multilevel intervention improved oncology clinician–documented ACP compared with a clinician-level intervention alone for patients with genitourinary cancer. The intervention is one approach to effectively increase ACP among patients with cancer.Trial RegistrationClinicalTrials.gov Identifier: NCT03856463

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Exploring patient-reported barriers to advance care planning in family practice

Cited by 63 publications

References 43 publications

Advance Care Planning (ACP) vs. Advance Serious Illness Preparations and Planning (ASIPP)

Advance Care Planning (ACP) vs. Advance Serious Illness Preparations and Planning (ASIPP)

Clinician- and Patient-Directed Communication Strategies for Patients With Cancer at High Mortality Risk

Coaches Activating, Reaching, and Engaging Patients to Engage in Advance Care Planning

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