Respecting Choices

Published Research Involving Respecting Choices®

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Disease Specific Advance Care Planning for Heart Failure Patients: Implementation in a Large Health System

Schellinger, S., Sidebottom, A., & Briggs, L. (2011). Disease specific advance care planning for heart failure patients: Implementation in a large health system. Journal of Palliative Medicine, 14(11), 1224-1230. https://doi.org/10.1089/jpm.2011.0105.

This study evaluated the implementation of Disease Specific Advance Care Planning (DS-ACP) for heart failure patients in a large health care system. The DS-ACP model uses a trained facilitator to guide communication between patient and proxy regarding patient values and goals for treatment in worst-case scenarios, develop a disease specific documentation plan, and identify needed resources. A chart audit was completed on a sample of patients to examine differences in advance care planning documentation between participants and nonparticipants. Nearly one third (31.8%) of the 1,894 heart failure patients referred to DS-ACP participated. Referral method was associated with participation. A chart audit revealed 94.3% of those completing the DS-ACP process, had a health directive compared to 24.8% of noncompleters (p<0.001). Of the patients who died by the end of the study period (n=286), DS-ACP participants were more likely to have used hospice compared to nonparticipants (56% versus 37%, p=0.002).These initial evaluation results indicate the DS-ACP model, previously tested in randomized trials, can be successfully implemented among heart failure patients in a large health care system. Results demonstrate the importance of referral method and show initial positive results for participation, improved documentation, and hospice use.

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Implementing an Advance Care Planning Program in German Nursing Homes

in der Schmitten, J., Lex, K., Mellert, C., Rothärmel, S., Wegscheider, K., & Marckmann, G. (2014). Implementing an advance care planning program in German nursing homes. Deutsches Ärzteblatt International 111(4): 50−7. doi: 10.3238/arztebl.2014.0050.

This prospective, inter-regionally controlled trial focusing on German nursing homes, compared the number, relevance and validity of new ADs completed in the intervention region versus the control region.  Intervention nursing home residents and their families were offered professional facilitation (based on the Respecting Choices® model) including standardized documentation. Data from 136 residents of three intervention nursing homes were compared with data from 439 residents of 10 control nursing homes over a study period of 16.5 months.The implementation of an ACP program in German nursing homes led, much more frequently than previously reported, to the creation of advance directives with potential relevance to medical decision-making.

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Acceptability of Family-Centered Advanced Care Planning for Adolescents With HIV

Dallas, R. H., Kimmel, A., Wilkins, M.L., et al. (2016).Acceptability of family-centered advanced care planning for adolescents with HIV. Pediatrics, 138(6):e20. http://pediatrics.aappublications.org/content/early/2016/10/30/peds.2016-1854.

Small pilot study supporting the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). A randomized controlled trial was conducted at 6 US urban hospitals where adolescent/family member dyads were randomized to receive the 3-session FAmily-CEntered Advance Care Planning (FACE) pACP intervention or active comparator. Enrollees consisted of 53% of eligible participants with 97 adolescent/family dyads. Satisfaction Questionnaires were administered at each session. Conclusion: FACE enabled worthwhile conversations, while simultaneously eliciting.

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Family-Centered Advance Care Planning for Teens with Cancer

Lyon, M., Jacobs, S., Briggs, L., Cheng, Y., & Wang, J. (2013). Family-centered advance care planning for teens with cancer. JAMA Pediatrics, 167(5), 460-467. doi: 10.1001/jamapediatrics.2013.943.

This randomized controlled trial in a pediatric oncology program focused on the needs of 60 adolescent oncology patients for participation in Advance Care Planning to examine the efficacy of family-centered ACP. The goal was to test a model of ACP that anticipates these issues, fully empowers the family and adolescent, and keeps the key role of health care professionals central. Participants aged 14 to 21 years with cancer and their surrogates or families were enrolled in the study in 2011/12. Intervention dyads received 3- to 60-minute sessions 1 week apart. Intervention dyads completed (1) the Lyon Family-Centered ACP Survey, (2) the Respecting Choices interview, and (3) Five Wishes. Control subjects received standard care plus information. This study found that family-centered advance care planning enabled families to understand and honor their terminally-ill adolescents’ wishes and to lessen suffering and improve quality of life. Family-centered ACP facilitated access to ACP for adolescents and African American families, may potentially decrease health disparities. This study suggests that family-centered ACP may be a model for a system change to implement to existing American Academy of Pediatrics and Institute of Medicine recommendations.

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The POLST Program: A Retrospective Review of the Demographics of Use and Outcomes in One Community Where Advance Directives Are Prevalent

Hammes, B.J., Rooney, B.L., Gundrum, J.D., Hickman, S.E., & Hager, N. (2012). The POLST program: A retrospective review of the demographics of use and outcomes in one community where advance directives are prevalent. Journal of Palliative Medicine, 15(1), 77-85. doi:10.1089/jpm.2011.0178. Epub 2012 Jan 10.

A retrospective review of medical record and death certificate data of 400 adults who died in 2007/08 in the La Crosse County, Wisconsin, community. Information about POAHC, POLST forms, and medical treatments provided in the last 30 days of life were abstracted from decedents’ medical records;67% of decedents had a POLST form, whereas 22% had POAHC alone. In comparison with decedents with POAHC alone, decedents with a POLST form were significantly older (83 versus 77 years, p<0.001), more likely to die in a nursing home than in a hospital (p<0.001), and more likely to die from a terminal or chronic illnesses (97%). Decedents with POLST orders for higher levels of medical treatment received more treatment, and in only 2 cases was there evidence that treatment was discrepant with POLST orders. In 31% of all POLST forms, the person appointed in the POAHC consented to the POLST orders. POLST can be a highly effective program to ensure that patient preferences are known and honored in all settings.

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Effect of a Disease-Specific Advance Care Planning Intervention on End-of-Life Care

Kirchhoff, K., Hammes, B., Kehl, K., Briggs, L., & Brown, R. (2012). Effect of a disease-specific advance care planning intervention on end-of-life care. Journal of American Geriatrics Society, 60(5), 946-950. doi: 10.1111/j.1532-5415.2012.03917.x

A randomized controlled trial was conductedwith 313 individuals from two centers in Wisconsin with congestive heart failure or end-stage renal disease and their surrogates who were randomized to receive patient-centered advance care planning (PC-ACP) or usual care (standard AD counseling). PC-ACP interviews were conducted by trained facilitators. 110 individuals died before the end of the study. Days from entry into the study until death ranged from 19 to 997 (control) and 5 to 1,010 (intervention). Concordance of documented patient preferences and care received at the end of life was evaluated through surrogate interviews or medical charts. 74% of patients continued to make their own decisions about care to the end. Care received matched initial choices for 46 of the 62 intervention patients (74.1%) and for 30 of 48 control patients (62%). This study demonstrated that when disease-specific planning is done, the patient and surrogate are being helped to face future decisions in a more informed and prepared way.

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The Impact of Advance Care Planning on End of Life Care in Elderly Patients: Randomised Controlled Trial

Detering, K. M., Hancock, A. D., Reade, M. C., & Silvester, W. (2010). The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ, 340:c1345. http://www.bmj.com/content/340/bmj.c1345.

Models of advance care planning such as Respecting Choices® have shown that a coordinated, systematic, patient-centered approach to advance care planning by trained non-medical facilitators can improve outcomes for patients. Evidence also showed that advance care planning and end of life discussions reduce stress, anxiety, and depression in surviving relatives.

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A Comparative, Retrospective, Observational Study of the Prevalence, Availability, and Specificity of Advance Care Plans in a County that Implemented an Advance Care Planning Microsystem

Hammes, B., Rooney, B.L., & Gundrum, J. (2010). A comparative, retrospective, observational study of the prevalence, availability, and specificity of advance care plans in a county that implemented an advance care planning microsystem. Journal of the American Geriatrics Society, 58(7), 1249-1255. http://onlinelibrary.wiley.com/doi/10.1111/j.1532-5415.2010.02956.x/abstract

Retrospective comparison of medical record and death certificate data of 400 adults who died over a 7-month period in 2007/08 with those of 540 adults who died over an 11-month period in 1995/96. Data published in 2010 showed that of all adult residents of La Crosse County who died in any setting of care in the county over a seven-month period (400), 96 percent had some type of an advance care plan, 99 percent of these plans were available in the patient’s medical record and treatments were consistent with instructions 99 percent of the time.These latest results are a continuation of highly successful advance care planning program that hasbeen in place for more than 20 years.

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