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End-of-life-care goals for adults living with HIV

Nurse comforting patient

Palliative care is specialized medical care for people living with a serious illness with the goal of improving quality of life. HIV is one illness where studies have shown that palliative care for persons living with HIV (PLWH) can improve pain and symptom control as well as psychological well-being.

There are about 1.2 million people living with human immunodeficiency virus (HIV) in the U.S., according to the CDC. In 2018, more than 37,000 people were newly diagnosed.

Integrating culturally sensitive palliative care services as a component of the HIV care continuum may improve health equity and person-centered care.

In a recent article published in the American Journal of Hospice and Palliative Medicine, Maureen Lyon, Ph.D., clinical health psychologist at Children’s National Hospital, and her colleagues examined factors influencing end-of-life care preferences among PLWH. Researchers conducted a survey of 223 adults living with HIV from five hospital-based clinics in Washington, DC. Participants completed an end-of-life care survey at as part of the FACE™-HIV Advance Care Planning clinical trial. Two distinct groups of patients were identified with respect to end-of-life care preferences: (1) a Relational class (75%) who prioritized family and friends, comfort from church services and comfort from persons at the end-of-life; and (2) a Transactional/Self-Determination class (25%) who prioritized honest answers from their doctors and advance care plans over relationships. African Americans had three times the odds of being in the Relational class versus the Transactional/Self-determination class, Odds ratio=3.30 (95% CI, 1.09, 10.03), p=0.035.

Those who prioritized relationships if dying were significantly more likely to be females and African Americans; while those who prioritized self-determination over relationships were significantly more likely to be males and non-African Americans. The four transgendered participants prioritized relationships.

Survey results show that most PLWH receiving care in Washington, D.C., preferred to die at home, regardless of race. Yet in the United States, most persons who die of HIV related causes die in the hospital. Sexual minorities feared dying alone, consistent with the stigma and discrimination which places many at risk of social isolation. Non-heterosexuals were less likely to find the church as a source of comfort, which may reflect feelings of discrimination, due to homophobic messages. However, if the church community is affirming of sexual minority status, religion could serve as a protective factor. Study findings may generate interventions to decrease social isolation and increase palliative care services for non-heterosexual PLWH.

These results fill a gap in our understanding of the self-reported goals and values of adults living with HIV with respect to end-of-life care. Findings contribute specificity to previous research about the importance of family, relationships and religiousness/spirituality with respect to end-of-life issues for ethnic and racial minorities.

Researchers from Children’s National involved in this study include Maureen Lyon, Ph.D., Jichuan Wang, Ph.D. and Lawrence D’Angelo, M.D., M.P.H.

The full study can be found in the American Journal of Hospice & Palliative Medicine.

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.

Thurlow Evans Tibbs, Jr. Award

Community-based AIDS prevention organization recognizes Children’s National Health System

Thurlow Evans Tibbs, Jr. Award

Credit: Don Bon Photography

The Division of Adolescent and Young Adult Medicine at Children’s National Health System was honored with the Thurlow Evans Tibbs, Jr. Award for outstanding service in HIV prevention by Us Helping Us, People Into Living, a community-based AIDS service organization committed to reducing HIV infection in the African American community on April 2, 2019 in Washington, D.C.

“We are so honored to receive the Thurlow Evans Tibbs, Jr. Award from our colleagues and friends, Us Helping Us, People Into Living,” said Dr. Lawrence D’Angelo, director of the Youth Pride Clinic and Burgess Clinics, a division of Adolescent and Young Adult Medicine at Children’s National. “We have always considered Us Helping Us as an essential partner in this struggle and so it’s ingrained as a part of the community. It has been our honor to work with them, and an equal honor to be recognized in this way by them. We are so grateful and so proud!”

Dr. Lawrence D’Angelo and his team at the Burgess Clinic have cared for over 750 HIV infected youth, many who have gone on to live long and productive lives since the clinic opened its doors in 1988. The clinic started the Washington Area Consortium on HIV infection in Youth (WACHIVY) which later became MetroTeenAIDS Metro TeenAIDS, one of the largest and most successful prevention education programs for youth in the country. The Burgess Clinic is the home of over a dozen NIH and foundation grants that supported the diagnosis and treatment of HIV infected youth, accounting for over $55M in support.

“Receiving the Thurlow Evans Tibbs, Jr. Award from Us Helping Us, People Into Living is an honor beyond anything we could have hoped for,” says Dr. D’Angelo. “Our programs were started at the same time to meet similar needs and for years we have worked together and appreciated each other’s efforts in serving our community. D.C. could not have attained the progress it has made in the struggle against HIV without Us Helping Us, People Into Living and knowing that makes this award all the more special.”

Us Helping Us, People Into Living was incorporated in 1988 as a support group for HIV-positive black gay men.