Published Research Involving Respecting Choices^®

Summary:

Lyon ME, Fraser JL, Thompkins JD, Clark H, Brodie N, Detwiler K, Torres C, Guerrera MF, Younge T, Aoun S, Trujillo Rivera EA. Advance Care Planning for Children With Rare Diseases: A Pilot RCT. Pediatrics June 2024; 153 (6): e2023064557. 10.1542/peds.2023-064557

FACE Rare (FAmily CEntered Pediatric Advance Care Planning Intervention for Rare Diseases) was designed by Dr. Maureen Lyon of Children’s National Hospital and Respecting Choices® co-founder Ling Briggs to support the palliative needs of children and families.

Click here to view webinar from Dr. Lyon talk about how the FACE Rare program improves well-being of families during advance care planning conversations.

Few empirically validated interventions exist to support patients with rare diseases and their family caregivers with respect to palliative care needs, quality of life or end-of-life decision-making. Research nurses underwent two days of training to be certified in the FAmily CEntered (FACE) pediatric advance care planning (pACP) intervention. A pilot-phase, single-blinded, intent-to-treat, randomized controlled clinical trial enrolled families from Children’s Hospital between 2021 and 2023. Families assigned to the new approach received three, weekly 60-minute (FACE-Rare pACP) sessions and were evaluated using evidence-based assessment tools, including the Carer Support Needs Assessment Tool/Action Plan and the Respecting Choices® Next Steps Pediatric ACP Conversation. Measures of anxiety and spiritualization were tracked, and families returned after three months for follow-up. A total of 21 children and primary family caregiver dyads participated in the study. Families expressed challenges of caregiving: having time for themselves during the day, knowing what to expect in the future for their child’s care, and managing financial, legal and work issues. All families living below the poverty line reported greater anxiety, and noteworthy to the team, black caregivers were less likely to report caregiver distress than non-black caregivers. Seventy-four percent of the families in the intervention group reported feelings of sadness, yet 100% reported the intervention was a worthwhile experience.

What This Study Adds:

FACE Rare (FAmily CEntered Pediatric Advance Care Planning Intervention for Rare Diseases), the counseling tools were found to be safe, effective and increased feelings of peace among families in this underserved population. This study reinforces the need for clinicians to improve engagement and support for children and families. Even though these types of conversations can be sad and difficult, parents appreciate them and find them helpful as they navigate medical decisions about their seriously ill child.

RC Program: Next Steps™ ACP

Summary:

Younge T, Moore H, Thompkins JD, Lyon ME. Parental Goals of Care for Children With Rare Diseases: A Content Analysis of Pediatric Advance Care Planning Conversations. American Journal of Hospice and Palliative Medicine®. 2025;0(0). doi:10.1177/10499091251356237

Children’s National Research & Innovation

Caregivers and surrogate decision makers for children with rare diseases often make complex medical decisions with limited prognostic information specific to their child’s disease. FAmily CEntered (FACE) studies emphasize the importance of tailoring pACP to the individual needs and preferences of each family, recognizing the unique challenges and priorities associated with rare diseases.

What This Study Adds:
Researchers performed inductive content analysis of Respecting Choices® Next Steps FAmily CEntered (FACE) pediatric advance care planning conversations to identify themes related to goals of care. Thirteen (13) goals of care themes were identified: maintaining stability, being happy, moving the body, thriving along their own path, reducing interventions, living a long life, curing disease, avoiding complications, connecting with others, having a village, an understanding world, knowing our child, and partnering with our medical team. Parents of children with rare diseases have a multitude of holistic goals related to their child’s care. High-quality advance care planning conversations may help families articulate these goals. Using language expressed by families described here may help healthcare teams and families communicate effectively around treatment plans and goals of care. By understanding parental goals of care, healthcare professionals can better support families of children with rare diseases and facilitate meaningful conversations about the child’s future.

RC Program: Next Steps™ ACP

Summary:

Yael Schenker et al. Facilitated Versus Patient-Directed Advance Care Planning Among Patients With Advanced Cancer: A Randomized Clinical Trial. JCO Oncol Pract 0, OP-25-00046. DOI:10.1200/OP-25-00046

What’s Known on This Subject:
Guidelines recommend advance care planning (ACP) to improve patient-centered care near the end of life (EOL), but the optimal approach is unknown.

What this study adds:
This trial (Patient Centered and Efficacious Advance Care Planning in Cancer—PEACe-compare) compares the effects of facilitated ACP delivered via the Respecting Choices trained facilitator model with a patient-directed program delivered via the PREPARE for Your Care website and written materials. This study found facilitated ACP resulted in higher engagement than patient-directed written and web-based materials. A stepped care approach to ACP could involve providing patient-facing ACP materials to everyone first, with a plan to step up patients to facilitated ACP if they do not meet prespecified ACP engagement targets or need extra support from a trained facilitator to complete an advance care plan.

RC Program: First Steps® ACP

Summary:

Iris Boettcher, M.D., C.M.D.,¹ Rozanne Turner, M.ED., B.S.N., R.N.,² and Linda Briggs, M.S., M.A., R.N.³ (2014).
¹Spectrum Health Medical Group, Byron Center, Michigan
²Medical Affairs Department, Priority Health, Holland, Michigan
³Respecting Choices, Gundersen Health System, La Crosse, Wisconsin
https://doi.org/10.1017/S1478951514000698

Objective:

The insurance plan case managers (CMs) of Priority Health, part of a regional healthcare system located in Michigan, work telephonically with frail patients who have multiple comorbidities. However, these CMs have lacked facilitation skills for advance care planning (ACP) discussions in this vulnerable population. In 2012, the findings of a six-month pilot study of telephonic ACP (TACP) with some of the plan’s Medicare population were implemented with Medicare members under case management.

Method:

Case mangers were trained and certified by Respecting Choices® to introduce and facilitate ACP discussions telephonically utilizing both First Steps and Last Steps protocols. The CMs identified appropriate patients using hospitalization and emergency room utilization data, severity of illness, and diagnostic criteria. The primary goal was to complete both the ACP discussion and the documentation for each protocol on identified patients. They also attempted to schedule facilitated conversations with the patients’ healthcare advocates present.

Results:

During a 12-month period, 576 health plan members were offered First Steps discussions, with 198 interested in engaging in further ACP. Some 152 members were identified for Last Steps TACP using established criteria; discussions occurred with 56 members. TACP implementation resulted in 55 new or updated First Steps documents and 4 Last Steps documents. A total of 50 discussions included the designated healthcare advocate.

Significance of results:

Following TACP implementation with the Medicare CM team and evaluation of the results, processes and methods were instituted to increase engagement and completion of discussions and documents. These included enhancements to the electronic assessment and ongoing support of the CM team to increase the engagement of patients and advocates. Dissemination of the project to the entire Medicare CM team demonstrated opportunities and lessons learned for facilitated TACP discussions. The TACP model has the potential to be successfully utilized by other health insurance companies.

Summary:

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.

Summary:

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.

Summary:

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.

Summary:

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.

Summary:

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.

Summary:

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.

Summary:

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.

Summary:

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.