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patient talking to doctor

Advance care planning and the trajectory of end-of-life treatment preference

patient talking to doctor

Advance care planning is a process that helps patients define their goals, values and preferences for future medical care. This information is shared with a surrogate decision maker who will make decisions for the patient if/when they are unable to make decisions for themselves. While ongoing conversations with the surrogate about goals of care are recommended, the optimal timing has not been empirically determined, until now.

Maureen Lyon, Ph.D., and her colleagues at Children’s National Hospital found that adults living with HIV and their chosen surrogate decision makers, who participated in a FAmily CEntered (FACE) advance care planning intervention, had seven times the odds of being on the same page about end of life decisions compared with controls. The researchers’ 5-year randomized clinical trial conducted in Washington, D.C., highlights a critical period 3 months after the intervention which might be optimal to schedule a booster session. FACE advance care planning had a significant effect on both surrogates’ longitudinal preparedness and confidence in decision-making and understanding of the patients’ end of life treatment preferences, compared to controls. These findings confirm advance care planning is beneficial and support African Americans’ desire to have family participate in decision making.

Children’s National researchers who contributed to this study include Maureen Lyon, Ph.D., Lawrence D’Angelo, M.D., MPH, Jichuan Wang, Ph.D., and Isabella Greenberg, MPH.

Read the full study in the American Journal of Hospice and Palliative Care.

doctor and patient filling out paperwork

How advance care planning can improve life in a pandemic and beyond

doctor and patient filling out paperwork

New research, published in AIDS and Behavior, shows the effectiveness of an Advance Care Planning model developed through participatory research with adolescents in improving palliative care among adult people living with HIV (PLWH).

Since the beginning of the COVID-19 pandemic, there has been a dramatic increase in advance care planning (ACP) and the creation of advance directives, also known as living wills, in the United States. New research, published in AIDS and Behavior, shows the effectiveness of an ACP model developed through participatory research with adolescents in improving palliative care among adult people living with HIV (PLWH).

These findings demonstrate that ACP positively contributes to the palliative care of adult PLWH by relieving suffering and maximizing quality of life. The intervention was based on the FAmily CEntered (FACE) Advance Care Model, which was developed and tested by principal investigator Maureen E. Lyon, Ph.D., and her colleagues.

Dr. Lyon’s team used this model successfully with adolescents living with HIV as part of five-year, five-site trial that included Children’s National Hospital. The trial was co-funded by the National Institutes of Health and National Institute of Nursing Research. The success of that study was parlayed into a new five-year study testing a slightly modified ACP intervention in adults, with Children’s National serving as the coordinating center. “The adolescents showed us the way,” says Dr. Lyon.

The paper details the findings of a longitudinal, two arm, randomized controlled clinical trial examining whether an ACP intervention aimed at adult PLWH and their families correlated with higher congruence in treatment preferences, as well as higher congruence over time. Patient-surrogate dyads were randomized to an ACP intervention arm or an active control arm at a 2:1 ratio (86 intervention dyads and 43 control dyads at 18-month follow up), due to prior demonstrated benefit of ACP.

The ACP intervention consisted of two 60-minute, patient-focused sessions. During session 1, Respecting Choices Next Steps® ACP Conversation, both patients and their surrogate decision-makers focused on the patients’ understanding of HIV, experience of symptoms, fears, hopes and worries. Next, a patient’s treatment preferences were explored via the Statement of Treatment Preferences (SoTP), which became a part of the patient’s electronic health record (EHR). Surrogates were questioned on their comprehension and willingness to comply with the patient’s wishes. Session 1 was acknowledged as the beginning of a conversation, and continued conversation between the dyad was encouraged.

Session 2, Five Wishes©, involved a facilitator guiding the dyad through a Five Wishes© advance directive. Session 2 resulted in legal documentation of a patient’s preferences in five specific areas: The patient’s preferred health care decision-maker, the kind of medical treatment the patient wants, how comfortable the patient wants to be, how the patient wants people to treat him/her and what the patient wants loved ones to know. The patient, surrogate and treating physicians all received a copy, and a copy was also submitted to the patient’s EHR.

Dyads in the control arm participated in two 60-minute sessions entitled Developmental or Relationship History (excluding any medical questions) and Nutrition & Exercise.

The researchers then assessed treatment preference congruence for each patient-surrogate dyad by presenting them with five different hypothetical scenarios. After the first session, congruence across all scenarios was significantly higher among ACP intervention dyads compared to control dyads. ACP patients were also significantly more likely to give their surrogates leeway in treatment decision making compared to control patients.

Compared to control dyads, ACP dyads were significantly more likely to maintain High → High congruence transition and significantly less likely to experience Low → Low congruence transition as measured from immediately post-intervention to 12-months post-intervention. The only two cases of Low → High congruence transition occurred in the intervention arm. Of note, ACP surrogates accurately reported on changes in patient preferences over one year, showing the positive impact of early conversation on longitudinal congruence.

Dr. Lyon hopes these results will encourage people to talk to their loved ones as soon as possible about ACP, not only during the current pandemic but into the future. “People can use what’s happening in the news as a trigger to begin these conversations,” she says. “The 1990 Patient Self-Determination Act (PSDA) encourages persons of all ages– including children and their parents– to decide the type and extent of medical care they want to accept or refuse if they become unable to make those decisions due to illness. Our research shows conversations matter.”

The original research paper, “Effect of FAmily CEntered (FACE®)Advance Care Planning on Longitudinal Congruence in End-of-Life Treatment Preferences: A Randomized Clinical Trial,” was recently published in AIDS and Behavior. Dr. Maureen E. Lyon, Ph.D., FABPP, of the Center for Translational Research/Children’s Research Institute, was the principal investigator of the trial and a co-senior of the paper.

people sitting in a circle holding hands

Religiousness linked to improved quality of life for people with HIV

people sitting in a circle holding hands

Adults living with HIV in Washington, D.C., were more likely to feel higher levels of emotional and physical well-being if they attended religious services regularly, prayed daily, felt “God’s presence,” and self-identified as religious or spiritual.

Adults living with HIV in Washington, D.C., were more likely to feel higher levels of emotional and physical well-being if they attended religious services regularly, prayed daily, felt “God’s presence,” and self-identified as religious or spiritual, according to research published online Jan. 29, 2020, in Psychology of Religion and Spirituality. By contrast, patients living with HIV who had the lowest levels of quality of life and more mental health challenges were privately religious, potentially eschewing organized religion due to fears about being stigmatized or ostracized.

“These findings are significant because they point to the untapped potential of encouraging patients living with HIV who are already religious to attend religious services regularly.  Scientific evidence suggests that religions that present God as all-powerful, personal, responsive, loving, just and forgiving make a difference in health-related quality of life. By contrast, belief systems and religions that see God as punishing, angry, vengeful and distant and isolate members from their families and the larger community do not have health benefits or contribute to health-related quality of life. People who identify as spiritual also benefit from improved overall health-related quality of life,” says Maureen E. Lyon, Ph.D., FABPP, a clinical health psychologist at Children’s National Hospital, and senior study author.

“In general, patients living with HIV have reported that they wished their health care providers acknowledged their religious beliefs and spiritual struggles. Additional research is needed to gauge whether developing faith-based interventions or routine referrals to faith-based programs that welcome racial and sexual minorities improve satisfaction with treatment and health outcomes,” Lyon adds.

More than 1 million people in the U.S. live with HIV, and in 2018, 37,832 people received an HIV diagnosis in the U.S., according to the Centers for Disease Control and Prevention (CDC). In 2017, the Washington, D.C., region recorded one of nation’s highest rates of new cases of HIV: 46.3 diagnoses per 100,000 people, according to the CDC.

A research team that includes current and former Children’s National faculty wanted to learn more about the degree of religiousness and spirituality reported by people living with HIV and the interplay between religion and health-related quality of life. They recruited patients to participate in a clinical trial about family-centered advance care planning and enrolled 223 patient/family dyads in this study.

Fifty-six percent of patients were male. Eighty-six percent were African American, and their mean age was 50.8. Seventy-five percent were Christian.

The researchers identified three distinct classes of religious beliefs:

  • Class 1, the highest level of religiousness/spirituality, applied to people more likely to attend religious services in person each week, to pray daily, to “feel God’s presence” and to self-identify as religious and spiritual. Thirty-five percent of study participants were Class 1 and tended to be older than 40.
  • Class 2 applied to privately religious people who engaged in religious activities at home, like praying, and did not attend services regularly. Forty-seven percent of study participants were Class 2.
  • Class 3 participants self-identified as spiritual but were not involved in organized religion. Nearly 18 percent of study participants were Class 3, the lowest overall level of religiousness/spirituality.

Class 1 religiousness/spirituality was associated with increased quality of life, mental health and improved health status.

“Being committed to a welcoming religious group provides social support, a sense of identity and a way to cope with stress experienced by people living with HIV,” Lyon says. “We encourage clinicians to capitalize on patients’ spiritual beliefs that improve health – such as prayer, meditation, reading spiritual texts and attending community events – by including them in holistic treatment programs in a non-judgmental way.”

What’s more, the research team encourages clinicians to appoint a member of the team who is responsible for handling religiousness/spirituality screening and providing referrals to welcoming hospital-based chaplaincy programs or community-based religious groups.

“This is particularly challenging for HIV-positive African American men who have sex with men, as this group faces discrimination related to race and sexual orientation. Because HIV infection rates are increasing for this group, this additional outreach is all the more important,” she adds.

In addition to Lyon, study co-authors include Biostatistician Jichuan Wang, Ph.D., and Yao I. Cheng, MS., both of Children’s National; and Lead Author Katherine B. Grill, Ph.D., the former clinical coordinator for this randomized clinical trial who is currently an adjunct professor at the California Institute of Integral Studies.

Financial support for research described in this post was provided by the National Institutes of Health under award Nos. R01NR014-052-05 and UL1RR031988.

 

Maureen E Lyon

Maureen E. Lyon receives American Cancer Society grant

Maureen E Lyon

Children’s Clinical Health Psychologist Maureen E. Lyon, Ph.D., has received the “Judy White Memorial Clinical Research Pilot Exploratory Projects in Palliative Care of Cancer Patients and their Families” grant from the American Cancer Society (ACS).

Over two years, Lyon will be allotted $144,000 to translate Children’s evidence-based Family-Centered (FACE) pediatric advance care planning (ACP) protocol into Spanish through a process of community-based participatory research for teens with cancer.

Lyon’s research focuses on enabling families to understand their adolescents’ treatment preferences and describing patient-reported palliative care needs for teens with cancer. Ultimately, the research will help identify the wants, values, goals and beliefs of teens with cancer.

Along with the ACS research grant, Lyon and Jessica Thompkins, BSN, R.N., CPN, research nurse coordinator at Children’s National, will present at the Annual Assembly of Hospice & Palliative Medicine conference, March 13-16, 2019 in Orlando, Fla. on data from the current multi-site, five-year randomized clinical trial funded by National Institute of Health/ National Institute of Nursing Research for English-speaking teens with cancer.

During the presentation, they will speak about the effect of FACE ACP on families’ appraisals of caregiving for their teens with cancer and describing advance care planning communication approaches.

Lyon and other researchers at Children’s National look forward to making significant contributions to the science of advance care planning aimed to minimize suffering and enhancing quality of life for young adults. Their contributions give teens a voice in their future medical care and help families “break the ice,” by providing an extra level of support to treating clinicians.

Telemedicine

A rare prescription: Providing children with palliative care

Telemedicine

A pilot program at Children’s National enabled parents of children with extremely rare diseases to receive in-person or virtual health consultations with a trained provider.

Pediatric advance care planning (pACP) and making complex  medical decisions is especially difficult for parents of children with extremely rare diseases. Imagine if your child is the only person in the world with a rare disease that may limit basic functions: eating, breathing, walking and talking. Now, imagine you are presented with two scenarios: Experiment with a new drug to see if it improves your child’s conditions or plan for near-future, end-of-life care.

While these types of difficult decisions for parents of children with rare diseases are common, a new counseling model, based on a four-session pilot program conducted at Children’s National, aims to ease this process by providing parents with a comprehensive support plan.

On Oct. 15 and 16, Maureen Lyon, Ph.D., a clinical psychologist at Children’s National and a professor of pediatrics at the George Washington University School of Medicine and Health Sciences, will present “Living on the Precipice: The Journey of Children with Rare Diseases and Their Families” at a poster session at the National Organization for Rare Disorders’ Rare Disease and Orphan Products Breakthrough Summit at the Marriott Wardman Park in Washington.

Dr. Lyon will highlight key take-home points she observed during the pilot program:

  • Background: Eight families were recruited for the pilot program and seven enrolled. Six completed the four-session program, which was spread out over two months.
    • All parents were mothers, but two fathers joined for the goal-planning care conversation sessions. Some families brought their children to visits.
    • Five parents were married and two were single.
    • Four families identified as Caucasian, three families identified as African American, and one family identified as American Indian or Alaska Native.
  • Visits: About half of the families – three – attended the sessions at Children’s National. Four used the telemedicine option. A research nurse, clinical psychologist and advanced practice nurse participated in the 60- to 90-minute sessions.
  • Plans: The families discussed basic palliative care needs, such as comprehensive care coordination, which is highly individualized, before discussing their goals of care. After their needs and goals were discussed, the families created advance care plans to guide them during a medical crisis.
  • Results: Out of the six parents who completed the study, the mean positive caregiver appraisal score increased from 4.5. To 4.7, mean family well-being increased from 3.9 to 4.1, and the mean score for meaning and peace increased from 21.4 to 23.3. The scores were calculated by using the Carer Support Needs Assessment Tool (CSNAT) during the assessment and with modified protocols to assess quality of life and caregiver appraisal after the intervention.
Maureen Lyon

“The goal of palliative care is to optimize quality of life for children with life-threatening illnesses and their families by anticipating, preventing and treating suffering in all its forms,” explains Maureen Lyon, Ph.D. “This is delivered throughout illness and addresses physical, intellectual, emotional, social and spiritual needs.”

“These sessions increased a family’s sense of overall well-being,” says Jessica Thompkins, B.S.N., R.N., C.P.N., a research nurse coordinator with the FAmily CEntered Advanced Care Planning Team (FACE) and a co-author of the poster. “The families felt better just by knowing that they had time scheduled each week to connect with a trained medical provider to discuss a range for options they need as a caregiver, from everyday care at home to long-term health care planning at the hospital.”

The top-rated support need identified by all parents, according to the survey: “Knowing what to expect in the future when caring for their children.”

“The goal of palliative care is to optimize quality of life for children with life-threatening illnesses and their families by anticipating, preventing and treating suffering in all its forms,” says Dr. Lyon. “This is delivered throughout illness and addresses physical, intellectual, emotional, social and spiritual needs.”

The researchers would like to use this pilot to partner with other medical centers to create an evidence-based template to support the palliative care needs of family caregivers who have children with life-limiting rare diseases. Their goal is to improve a family caregiver’s quality of life, over time, and increase the completion and documentation of advance care plans for children of all ethnic and racial groups.

Rare diseases are defined as a disease that affects fewer than 200,000 people in the U.S. Extremely rare diseases, including those observed in this pilot, may affect just one or a few people in the world.

The rare disease pilot program is based on previous pACP models with adolescent HIV and pediatric cancer populations.

Additional poster authors include Jichuan Wang, Ph.D., Karen Fratantoni, M.D., M.P.H., Kate Detwiler, Ph.D., Yao Cheng, M.S., and Marshall Summar, M.D.