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Rebecca L Sudore - One of the best experts on this subject based on the ideXlab platform.
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provider perspectives on Advance Care Planning for patients with kidney disease whose job is it anyway
Clinical Journal of The American Society of Nephrology, 2016Co-Authors: Ann M Ohare, Rebecca L Sudore, Jackie Szarka, Lynne V Mcfarland, Janelle S Taylor, Ranak B Trivedi, Lynn F ReinkeAbstract:BACKGROUND AND OBJECTIVES:There is growing interest in efforts to enhance Advance Care Planning for patients with kidney disease. Our goal was to elicit the perspectives on Advance Care Planning of multidisciplinary providers who Care for patients with Advanced kidney disease. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS:Between April and December of 2014, we conducted semistructured interviews at the Department of Veterans Affairs Puget Sound Health Care System with 26 providers from a range of disciplines and specialties who Care for patients with Advanced kidney disease. Participants were asked about their perspectives and experiences related to Advance Care Planning in this population. Interviews were audiotaped, transcribed, and analyzed inductively using grounded theory. RESULTS:The comments of providers interviewed for this study spoke to significant system-level barriers to supporting the process of Advance Care Planning for patients with Advanced kidney disease. We identified four overlapping themes: (1) medical Care for this population is complex and fragmented across settings and providers and over time; (2) lack of a shared understanding and vision of Advance Care Planning and its relationship with other aspects of Care, such as dialysis decision making; (3) unclear locus of responsibility and authority for Advance Care Planning; and (4) lack of active collaboration and communication around Advance Care Planning among different providers caring for the same patients. CONCLUSIONS:The comments of providers who Care for patients with Advanced kidney disease spotlight both the need for and the challenges to interdisciplinary collaboration around Advance Care Planning for this population. Systematic efforts at a variety of organizational levels will likely be needed to support teamwork around Advance Care Planning among the different providers who Care for patients with Advanced kidney disease.
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Provider Perspectives on Advance Care Planning for Patients with Kidney Disease: Whose Job Is It Anyway?
Clinical Journal of The American Society of Nephrology, 2016Co-Authors: Ann M. O’hare, Rebecca L Sudore, Jackie Szarka, Lynne V Mcfarland, Janelle S Taylor, Ranak B Trivedi, Lynn F ReinkeAbstract:Background and objectives There is growing interest in efforts to enhance Advance Care Planning for patients with kidney disease. Our goal was to elicit the perspectives on Advance Care Planning of multidisciplinary providers who Care for patients with Advanced kidney disease. Design, setting, participants, & measurements Between April and December of 2014, we conducted semistructured interviews at the Department of Veterans Affairs Puget Sound Health Care System with 26 providers from a range of disciplines and specialties who Care for patients with Advanced kidney disease. Participants were asked about their perspectives and experiences related to Advance Care Planning in this population. Interviews were audiotaped, transcribed, and analyzed inductively using grounded theory. Results The comments of providers interviewed for this study spoke to significant system–level barriers to supporting the process of Advance Care Planning for patients with Advanced kidney disease. We identified four overlapping themes: (1) medical Care for this population is complex and fragmented across settings and providers and over time; (2) lack of a shared understanding and vision of Advance Care Planning and its relationship with other aspects of Care, such as dialysis decision making; (3) unclear locus of responsibility and authority for Advance Care Planning; and (4) lack of active collaboration and communication around Advance Care Planning among different providers caring for the same patients. Conclusions The comments of providers who Care for patients with Advanced kidney disease spotlight both the need for and the challenges to interdisciplinary collaboration around Advance Care Planning for this population. Systematic efforts at a variety of organizational levels will likely be needed to support teamwork around Advance Care Planning among the different providers who Care for patients with Advanced kidney disease.
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Advance Care Planning meets group medical visits the feasibility of promoting conversations
Annals of Family Medicine, 2016Co-Authors: Jacqueline Jones, Daniel D Matlock, Russell E Glasgow, Ingrid Lobo, Cari Levy, Robert S Schwartz, Rebecca L Sudore, Jean S KutnerAbstract:Author(s): Lum, Hillary D; Jones, Jacqueline; Matlock, Daniel D; Glasgow, Russell E; Lobo, Ingrid; Levy, Cari R; Schwartz, Robert S; Sudore, Rebecca L; Kutner, Jean S | Abstract: Primary Care needs new models to facilitate Advance Care Planning conversations. These conversations focus on preferences regarding serious illness and may involve patients, decision makers, and health Care providers. We describe the feasibility of the first primary Care-based group visit model focused on Advance Care Planning.We conducted a pilot demonstration of an Advance Care Planning group visit in a geriatrics clinic. Patients were aged at least 65 years. Groups of patients met in 2 sessions of 2 hours each facilitated by a geriatrician and a social worker. Activities included considering personal values, discussing Advance Care Planning, choosing surrogate decision-makers, and completing Advance directives. We used the RE-AIM framework to evaluate the project.Ten of 11 clinicians referred patients for participation. Of 80 patients approached, 32 participated in 5 group visit cohorts (a 40% participation rate) and 27 participated in both sessions (an 84% retention rate). Mean age was 79 years; 59% of participants were female and 72% white. Most evaluated the group visit as better than usual clinic visits for discussing Advance Care Planning. Patients reported increases in detailed Advance Care Planning conversations after participating (19% to 41%, P = .02). Qualitative analysis found that older adults were willing to share personal values and challenges related to Advance Care Planning and that they initiated discussions about a broad range of relevant topics.A group visit to facilitate discussions about Advance Care Planning and increase patient engagement is feasible. This model warrants further evaluation for effectiveness in improving Advance Care Planning outcomes for patients, clinicians, and the system.
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development and validation of a questionnaire to detect behavior change in multiple Advance Care Planning behaviors
PLOS ONE, 2013Co-Authors: Rebecca L Sudore, Anita L Stewart, Sara J Knight, Ryan D Mcmahan, Mariko A Feuz, Yinghui MiaoAbstract:Introduction Advance directives have traditionally been considered the gold standard for Advance Care Planning. However, recent evidence suggests that Advance Care Planning involves a series of multiple discrete behaviors for which people are in varying stages of behavior change. The goal of our study was to develop and validate a survey to measure the full Advance Care Planning process. Methods The Advance Care Planning Engagement Survey assesses “Process Measures” of factors known from Behavior Change Theory to affect behavior (knowledge, contemplation, self-efficacy, and readiness, using 5-point Likert scales) and “Action Measures” (yes/no) of multiple behaviors related to surrogate decision makers, values and quality of life, flexibility for surrogate decision making, and informed decision making. We administered surveys at baseline and 1 week later to 50 diverse, older adults from San Francisco hospitals. Internal consistency reliability of Process Measures was assessed using Cronbach's alpha (only continuous variables) and test-retest reliability of Process and Action Measures was examined using intraclass correlations. For discriminant validity, we compared Process and Action Measure scores between this cohort and 20 healthy college students (mean age 23.2 years, SD 2.7). Results Mean age was 69.3 (SD 10.5) and 42% were non-White. The survey took a mean of 21.4 minutes (±6.2) to administer. The survey had good internal consistency (Process Measures Cronbach's alpha, 0.94) and test-retest reliability (Process Measures intraclass correlation, 0.70; Action Measures, 0.87). Both Process and Action Measure scores were higher in the older than younger group, p<.001. Conclusion A new Advance Care Planning Engagement Survey that measures behavior change (knowledge, contemplation, self-efficacy, and readiness) and multiple Advance Care Planning actions demonstrates good reliability and validity. Further research is needed to assess whether survey scores improve in response to Advance Care Planning interventions and whether scores are associated with receipt of Care consistent with one's wishes.
Jean Lake Holley - One of the best experts on this subject based on the ideXlab platform.
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Advance Care Planning for Patients with Advanced CKD: A Need to Move Forward
Clinical Journal of The American Society of Nephrology, 2015Co-Authors: Jean Lake Holley, Sara N. DavisonAbstract:For well over a decade, we have known that dialysis patients and their families and friends desire opportunities to engage in Advance Care Planning with their nephrologist and dialysis teams ([1][1]–[3][2]). Clinical practice guidelines have recommended Advance Care Planning as central tenets of
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Advance Care Planning in ckd esrd an evolving process
Clinical Journal of The American Society of Nephrology, 2012Co-Authors: Jean Lake HolleyAbstract:Summary Advance Care Planning was historically considered to be simply the completion of a proxy (health Care surrogate designation) or instruction (living will) directive that resulted from a conversation between a patient and his or her physician. We now know that Advance Care Planning is a much more comprehensive and dynamic patient-centered process used by patients and families to strengthen relationships, achieve control over medical Care, prepare for death, and clarify goals of Care. Some Advance directives, notably designated health Care proxy documents, remain appropriate expressions of Advance Care Planning. Moreover, although physician orders, such as do-not-resuscitate orders and Physician Orders for Life-Sustaining Treatment, may not be strictly defined as Advance directives, their completion, when appropriate, is an integral component of Advance Care Planning. The changing health circumstances and illness trajectory characteristic of ESRD mandate that Advance Care Planning discussions adapt to a patient’s situation and therefore must be readdressed at appropriate times and intervals. The options of withholding and withdrawing dialysis add ESRD-specific issues to Advance Care Planning in this population and are events each nephrologist will at some time confront. Advance Care Planning is important throughout the spectrum of ESRD and is a part of nephrology practice that can be rewarding to nephrologists and beneficial to patients and their families.
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Advance Care Planning in CKD/ESRD: An Evolving Process
Clinical Journal of The American Society of Nephrology, 2012Co-Authors: Jean Lake HolleyAbstract:Summary Advance Care Planning was historically considered to be simply the completion of a proxy (health Care surrogate designation) or instruction (living will) directive that resulted from a conversation between a patient and his or her physician. We now know that Advance Care Planning is a much more comprehensive and dynamic patient-centered process used by patients and families to strengthen relationships, achieve control over medical Care, prepare for death, and clarify goals of Care. Some Advance directives, notably designated health Care proxy documents, remain appropriate expressions of Advance Care Planning. Moreover, although physician orders, such as do-not-resuscitate orders and Physician Orders for Life-Sustaining Treatment, may not be strictly defined as Advance directives, their completion, when appropriate, is an integral component of Advance Care Planning. The changing health circumstances and illness trajectory characteristic of ESRD mandate that Advance Care Planning discussions adapt to a patient’s situation and therefore must be readdressed at appropriate times and intervals. The options of withholding and withdrawing dialysis add ESRD-specific issues to Advance Care Planning in this population and are events each nephrologist will at some time confront. Advance Care Planning is important throughout the spectrum of ESRD and is a part of nephrology practice that can be rewarding to nephrologists and beneficial to patients and their families.
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Dialysis patients' preferences for family-based Advance Care Planning.
Annals of Internal Medicine, 1999Co-Authors: Stephen C. Hines, Jean Lake Holley, Jacqueline J. Glover, Austin S. Babrow, Laurie Badzek, Alvin H. MossAbstract:Background: Most patients do not participate in Advance Care Planning with physicians. Objective: To examine patients' preferences for involving their physicians and families in Advance Care Planning. Design: Face-to-face interviews with randomly selected patients. Setting: Community-based dialysis units in one rural and one urban region. Participants: 400 hemodialysis patients. Measurements: Questions about whom patients involve in Advance Care Planning, whom patients would like to include in this Planning, and patients' reactions to state legislation on surrogate decision makers in end-of-life Care. Results: Patients more frequently discussed preferences for end-of-life Care with family members than with physicians (50% compared with 6%; P < 0.001). More patients wanted to include family members in future discussions of Advance Care Planning than wanted to include physicians (91% compared with 36%; P < 0.001). Patients were most comfortable with legislation that granted their family end-of-life decision-making authority in the event of their own incapacity (P < 0.001). Conclusion: Most patients want to include their families more than their physicians in Advance Care Planning.
Catherine Exley - One of the best experts on this subject based on the ideXlab platform.
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A qualitative study: Professionals' experiences of Advance Care Planning in dementia and palliative Care, 'a good idea in theory but⋯'
Palliative Medicine, 2013Co-Authors: Louise Robinson, Claire Bamford, Alexa Clark, Julian Hughes, Claire Dickinson, Catherine ExleyAbstract:BACKGROUND: Advance Care Planning comprises discussions about an individual's wishes for future Care while they have capacity. AIM: To explore professionals' experiences on the implementation of Advance Care Planning in two areas of clinical Care, dementia and palliative Care. DESIGN: Qualitative study, focus groups and individual interviews. Setting: North East of England. Sample: Ninety-five participants from one Primary Care Trust, two acute National Health Service Hospital Trusts, one Ambulance Trust, one Local Authority and voluntary organisations and the legal sector. RESULTS: Fourteen focus groups and 18 interviews were held with 95 participants. While professionals agreed that Advance Care Planning was a good idea in theory, implementation in practice presented them with significant challenges. The majority expressed uncertainty over the general value of Advance Care Planning, whether current service provision could meet patient wishes, their individual roles and responsibilities and which aspects of Advance Care Planning were legally binding; the array of different Advance Care Planning forms and documentation available added to the confusion. In dementia Care, the timing of when to initiate Advance Care Planning discussions was an added challenge. CONCLUSIONS: This study has identified the professional, organisational and legal factors that influence Advance Care Planning implementation; professional training should target these specific areas. There is an urgent need for standardisation of Advance Care Planning documentation. Greater clarity is also required on the roles and responsibilities of different professional groups. More complex aspects of Advance Care Planning may be better carried out by those with specialist skills and experience than by generalists caring for a wide range of patient groups with different disease trajectories.
Louise Robinson - One of the best experts on this subject based on the ideXlab platform.
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A qualitative study: Professionals' experiences of Advance Care Planning in dementia and palliative Care, 'a good idea in theory but⋯'
Palliative Medicine, 2013Co-Authors: Louise Robinson, Claire Bamford, Alexa Clark, Julian Hughes, Claire Dickinson, Catherine ExleyAbstract:BACKGROUND: Advance Care Planning comprises discussions about an individual's wishes for future Care while they have capacity. AIM: To explore professionals' experiences on the implementation of Advance Care Planning in two areas of clinical Care, dementia and palliative Care. DESIGN: Qualitative study, focus groups and individual interviews. Setting: North East of England. Sample: Ninety-five participants from one Primary Care Trust, two acute National Health Service Hospital Trusts, one Ambulance Trust, one Local Authority and voluntary organisations and the legal sector. RESULTS: Fourteen focus groups and 18 interviews were held with 95 participants. While professionals agreed that Advance Care Planning was a good idea in theory, implementation in practice presented them with significant challenges. The majority expressed uncertainty over the general value of Advance Care Planning, whether current service provision could meet patient wishes, their individual roles and responsibilities and which aspects of Advance Care Planning were legally binding; the array of different Advance Care Planning forms and documentation available added to the confusion. In dementia Care, the timing of when to initiate Advance Care Planning discussions was an added challenge. CONCLUSIONS: This study has identified the professional, organisational and legal factors that influence Advance Care Planning implementation; professional training should target these specific areas. There is an urgent need for standardisation of Advance Care Planning documentation. Greater clarity is also required on the roles and responsibilities of different professional groups. More complex aspects of Advance Care Planning may be better carried out by those with specialist skills and experience than by generalists caring for a wide range of patient groups with different disease trajectories.
Angela Hult - One of the best experts on this subject based on the ideXlab platform.
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physicians views on Advance Care Planning and end of life Care conversations
Journal of the American Geriatrics Society, 2018Co-Authors: Terry Fulmer, Marcus Escobedo, Amy Berman, Mary Jane Koren, Sandra Hernandez, Angela HultAbstract:OBJECTIVES To evaluate physicians' views on Advance Care Planning, goals of Care, and end‐of‐life conversations. DESIGN Random sample telephone survey. SETTING United States. PARTICIPANTS Physicians (primary Care specialists; pulmonology, cardiology, oncology subspecialists) actively practicing medicine and regularly seeing patients aged 65 and older (N=736; 81% male, 75% white, 66% aged ≥50. MEASUREMENTS A 37‐item telephone survey constructed by a professional polling group with national expert oversight measured attitudes and perceptions of barriers and facilitators to Advance Care Planning. Summative data are presented here. RESULTS Ninety‐nine percent of participants agreed that it is important to have end‐of‐life conversations, yet only 29% reported that they have formal training for such conversations. Those most likely to have training included younger physicians and those caring for a racially and ethnically diverse population. Patient values and preferences were the strongest motivating factors in having Advance Care Planning conversations, with 92% of participants rating it extremely important. Ninety‐five percent of participants reported that they supported a new MediCare fee‐for‐service benefit reimbursing Advance Care Planning. The biggest barrier mentioned was time availability. Other barriers included not wanting a patient to give up hope and feeling uncomfortable. CONCLUSION With more than half of physicians reporting that they feel educationally unprepared, there medical school curricula need to be strengthened to ensure readiness for end‐of‐life conversations. Clinician barriers need to be addressed to meet the needs of older adults and families. Policies that focus on payment for quality should be evaluated at regular intervals to monitor their effect on Advance Care Planning.