Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel

Sudore, Rebecca L.; Lum, Hillary D.; You, John J.; Hanson, Laura C.; Meier, Diane E.; Pantilat, Steven Z.; Matlock, Daniel D.; Rietjens, Judith; Korfage, Ida J.; Ritchie, Christine S.; Kutner, Jean S.; Teno, Joan M.; Thomas, Judy; McMahan, Ryan D.; Heyland, Daren K.

doi:10.1016/j.jpainsymman.2016.12.331

Cited by 1,044 publications

(922 citation statements)

References 25 publications

Supporting

Mentioning

898

Contrasting

Unclassified

Order By: Relevance

“…The top 5 outcomes included (1) care consistent with goals, mean 6.71 (±SD 0.04); (2) surrogate designation, 6.55 (0.45); (3) surrogate documentation, 6.50 (0.11); (4) discussions with surrogates, 6.40 (0.19); and (5) documents and recorded wishes are accessible when needed 6.27 (0.11). Advance directive documentation was ranked 10 th , 6.01 (0.21).…”

Section: Resultsmentioning

confidence: 99%

“…Advance care planning (ACP) is defined as a “process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care.”(1–3) The conceptualization of ACP has broadened over the past decade from the completion of legal advance directives to a process that consists of many behaviors, such as choosing a surrogate decision maker, defining values and preferences for medical care, and communicating those wishes to others. (1, 2, 4) However, studies have used a wide variety of outcomes to measure the success of ACP programs and interventions, including advance directive completion, behavior change, healthcare utilization, and care consistent with goals, all of which have been variably measured.…”

Section: Introductionmentioning

confidence: 99%

“…(1, 2, 4) However, studies have used a wide variety of outcomes to measure the success of ACP programs and interventions, including advance directive completion, behavior change, healthcare utilization, and care consistent with goals, all of which have been variably measured. (5–10)…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Outcomes That Define Successful Advance Care Planning: A Delphi Panel Consensus

Sudore

Heyland

Lum

et al. 2018

Journal of Pain and Symptom Management

Self Cite

250

271

View full text Add to dashboard Cite

Context Standardized outcomes that define successful advance care planning (ACP) are lacking. Objective To create an Organizing Framework of ACP outcome constructs and rate the importance of these outcomes. Methods This study convened a Delphi panel consisting of 52 multidisciplinary, international ACP experts including clinicians, researchers, and policy leaders from four countries. We conducted literature reviews and solicited attendee input from 5 international ACP conferences to identify initial ACP outcome constructs. In 5 Delphi rounds, we asked panelists to rate patient-centered outcomes on a 7-point “not-at-all” to “extremely important” scale. We calculated means and analyzed panelists’ input to finalize an Organizing Framework and outcome rankings. Results Organizing Framework outcome domains included process (e.g., attitudes), actions (e.g., discussions), quality of care (e.g., satisfaction), and healthcare (e.g., utilization). The top 5 outcomes included (1) care consistent with goals, mean 6.71 (±SD 0.04); (2) surrogate designation, 6.55 (0.45); (3) surrogate documentation, 6.50 (0.11); (4) discussions with surrogates, 6.40 (0.19); and (5) documents and recorded wishes are accessible when needed 6.27 (0.11). Advance directive documentation was ranked 10th, 6.01 (0.21). Panelists raised caution about whether “care consistent with goals” 6.01 (0.21). Panelists raised can be reliably measured. Conclusion A large, multidisciplinary Delphi panel developed an Organizing Framework and rated the importance of ACP outcome constructs. Top rated outcomes should be used to evaluate the success of ACP initiatives. More research is needed to create reliable and valid measurement tools for the highest rated outcomes, particularly “care consistent with goals.”

show abstract

Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Outcomes That Define Successful Advance Care Planning: A Delphi Panel Consensus

Sudore

Heyland

Lum

et al. 2018

Journal of Pain and Symptom Management

Self Cite

250

271

View full text Add to dashboard Cite

show abstract

“…1 Although the prevalence of ACP documentation is increasing 2 and may continue to increase with both federal and local reimbursement programs for ACP, 3 the rates of ACP documentation are still low, 4 especially among older and disenfranchised populations. A lack of documented ACP can lead to medical interventions misaligned with patients’ wishes 5 as well as worse quality of life and stress for patients and surrogate decision-makers.…”

Section: Introductionmentioning

confidence: 99%

Advance Care Planning Documentation Practices and Accessibility in the Electronic Health Record: Implications for Patient Safety

Walker

McMahan²,

Barnes

et al. 2018

Journal of Pain and Symptom Management

View full text Add to dashboard Cite

Importance Documenting patients’ advance care planning wishes is essential to providing value-aligned care, as is having this documentation readily accessible. Little is known about advance care planning documentation practices in the electronic health record. Objective Describe advance care planning documentation practices and the accessibility of documented discussions in the electronic health record. Design Cross-sectional study between 2013-2015. Setting Primary care clinics at the San Francisco Veterans Affairs Medical Center. Participants Veterans ≥60 years of age with ≥2 chronic/serious health conditions, ≥2 primary care visits, and ≥2 additional clinic/hospital/emergency room visits in the prior year who were participating in an advance care planning trial. Exposure Documentation of advance care planning in the electronic health record. Main Measures Advance care planning documentation, including all prior legal forms/orders and documented discussions within the prior five years. For discussions, the author’s discipline and documentation location in the electronic health record were determined. Discussions were defined as “accessible” if documented in a designated electronic posting location or “not easily accessible” if recorded as free-text in progress notes. Percentages and means were used to describe these measures. Key Results The mean age of 414 participants was 71 years (SD ±8), 9% were women, 43% were non-white, and 51% had documented advance care planning including 149 (36%) with forms/orders and 138 (33%) with discussions. Seventy-four participants (50%) with forms/orders did not have accompanying documented discussions. Most (55%) discussions were not easily accessible. Twenty-seven participants had a subsequent discussion documenting changes in treatment preferences from a prior form/order; however, 70% of these discussions were not easily accessible. Conclusions and Relevance Half of chronically ill, older participants had documented advance care planning wishes, including one third with documented discussions. However, half of the patients with completed legal forms/orders had no accompanying explanatory discussions. The majority of documented discussions were not easily accessible in the electronic health record, including 70% of those documenting a change in treatment preferences. Ensuring that patients’ preferences are documented and easily accessible is an important patient safety and quality improvement target to ensure patients’ wishes are honored.

show abstract

“…A frank discussion about the nature, challenges and progression of the disease early on will enable patients to receive medical care consistent with their values, goals and preferences 10. In the later stage of dementia, the emphasis of the care plan is generally the promotion of comfort and symptom control as the primary goal 11.…”

Section: Goals Of Carementioning

confidence: 99%

Challenges in end-of-life dementia care

Fetherston

Rowley²,

Allan³

2018

Evid Based Mental Health

View full text Add to dashboard Cite

Dementia is a chronic, progressive disease that is now much more widely recognised and treated. Patients with dementia may require palliative care when they reach the end stage of their illness, or they may have mild-moderate cognitive symptoms comorbid with a life-limiting illness. The variety of presentations necessitates a highly individual approach to care planning, and patients should be encouraged to set their own goals and contribute to advanced care planning where possible. Assessment and management of distressing symptoms at the end of life can be greatly helped by a detailed knowledge of the individuals' prior wishes, interdisciplinary communication and recognition of changes in presentation that may result from new symptoms, for example, onset of pain, nutritional deficits and infection. To navigate complexity at the end of life, open communication that involves patients and families in decisions, and is responsive to their needs is vital and can vastly improve subjective experiences. Complex ethical dilemmas may pervade both the illness of dementia and provision of palliative care; we consider how ethical issues (eg, providing care under restraint) influence complex decisions relating to resuscitation, artificial nutrition and treatment refusal in order to optimise quality of life.

show abstract

Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel

Cited by 1,044 publications

References 25 publications

Outcomes That Define Successful Advance Care Planning: A Delphi Panel Consensus

Outcomes That Define Successful Advance Care Planning: A Delphi Panel Consensus

Advance Care Planning Documentation Practices and Accessibility in the Electronic Health Record: Implications for Patient Safety

Challenges in end-of-life dementia care

Contact Info

Product

Resources

About