Palliative Care in People Living With HIV/AIDS: Integrating Into Standard of Care

2014-09-30 16:38:23 | BioPortfolio


Our goal is to advance palliative care with persons living with AIDS (PLWA) or life-limiting co-morbidities to decrease suffering and increase quality of life (QOL). Left without advance care planning (ACP) for end-of-life decision, miscommunication and disagreements may result in families being charged with neglect or court battles over treatment choices, unmet care or delivery of unnecessary or unwanted care, and non-relative caregivers being dismissed (e.g. gay partners). We hope to increase families' understandings of their family member's wishes for end-of-life care to decrease conflict through the FAmily-CEntered Advance (FACE) Care Planning intervention. We will also study communication, quality of life, and spiritual struggle. Families will be randomized into either the Control (N=96 families) or the FACE Intervention (n=192 dyads). FACE families will meet with a trained/certified researcher for two 60-minute sessions scheduled one week apart: Session 1: The Respecting Choices Interview®; and Session 2: Completion of The Five Wishes©. Control families will also meet with a researcher for two 60-minute sessions scheduled one week apart: Session 1: Developmental History; and Session 2: Nutrition and Exercise. Questionnaires will be administered five times, Baseline and at 3, 6, 12 and 18 month post-intervention, for an average of 2 years.

AIM 1. To determine the efficacy of FACE on congruence in treatment preferences between PLWA and their surrogates over time, and the effect of the pattern of congruence development trajectory on healthcare utilization (i.e., distal outcomes: number of hospitalizations, dialysis, ER visits).

Hypothesis A: Development of congruence may not be homogeneous and FACE may influence the pattern of congruence development.

Hypothesis B: Different patterns of congruence development may have different effects on health care utilization.

Hypothesis C: Compared to Controls, FACE participants will better maintain congruence over time.

AIM 2. To determine the efficacy of FACE on key components of QOL for PLWA. Hypothesis: FACE participants will increase or better maintain psychosocial QOL compared to Controls.

AIM 3. To minimize health disparities in ACP between Blacks and non Blacks and identify factors associated with disparities.

Hypothesis: Blacks in the FACE intervention will complete advance directives at a rate comparable to non Blacks, and at significantly greater rates compared to Controls.


Our goal is to advance palliative care with persons living with AIDS (PLWA) or life-limiting co-morbidities aimed at relieving suffering and maximizing quality of life. One objective is to identify variables which influence decision-making with respect to advance care planning (ACP) for PLWA, as well as to determine the unique person-centered needs of subgroups of PLWA, as these are unknown. The negative consequences of no ACP or poor ACP include: unmet care or delivery of unnecessary or unwanted care, conflict erupting in the ICU, or the importance of non-relative caregivers being dismissed, for example gay partners. A second objective is to identify a "best approach" for standard of care in ACP, a key component of palliative care, as an end of life support. This approach may minimize health disparities in the likelihood of both identifying a surrogate decision-maker and using advance directives. We propose building on our evidence based, theoretical model, FAmily-CEntered (FACE) Advance Care Planning intervention, an HIV specific ACP program for Black teens which gained acceptance and demonstrated efficacy through increased congruence in treatment preferences and universal complete of advance directives with a surrogate decision-maker. Given the demonstrated needs and benefits of ACP and the low utilization among adult Black PLWA, we propose meeting this need by building on our FACE model with adults living with advanced AIDS and/or life-limiting co-morbidities in Washington, District of Columbia (DC) a city with endemic HIV and significant health disparities in death rates by race in an adequately-powered, randomized, clinical, 2-arm, single-blinded, controlled trial. We will test the efficacy of the FACE intervention for increasing congruence in end-of-life treatment preferences between PLWA and their surrogate decision-maker, to determine if increased congruence can be maintained over time. We will also determine if FACE is acceptable to primarily Black inner city adult PLWA. We will recruit from four hospital-based clinics and randomize 288 patient/surrogate dyads (N=576 subjects) in a 2:1 ratio to either FACE Intervention (N=192 dyads) or Control (N=96 dyads). Participants with HIV dementia, suicidality, homicidality or psychosis will be excluded. Two 60-minuted sessions will be conducted with a trained/certified facilitator at weekly intervals: FACE Session 1: The Respecting Choices Interview (R); Session 2: Completion of The Five Wishes (c). Control will also be administered in a dyadic format: Session 1: Developmental History; Session 2: Nutrition and Exercise. Standardized self-report measures will be administered at baseline, 3 month post-intervention 6 month post-intervention, 12 month post-intervention, and 18 month post-intervention. Thus, participants will be followed for an average of 2 years. This will be the first study to test an ACP model, integrating person-centered (GMM) and variable-centered analysis (GEE) to assess study outcomes.

Study Design

Allocation: Randomized, Endpoint Classification: Efficacy Study, Intervention Model: Parallel Assignment, Masking: Single Blind (Outcomes Assessor), Primary Purpose: Supportive Care




FAmily-CEntered Advance Care Planning, Healthy Living Control


Children's National Medical Center
District of Columbia
United States




Children's Research Institute

Results (where available)

View Results


Published on BioPortfolio: 2014-09-30T16:38:23-0400

Clinical Trials [2716 Associated Clinical Trials listed on BioPortfolio]

RCT of Advance Care Planning in Primary Care

Sometimes people with health conditions become ill suddenly and can no longer speak for themselves and another person (such as a family member) will make health care decisions for them. Th...

Utilizing Advance Care Planning Videos to Empower Perioperative Cancer Patients and Families

Through close engagement with our patient and family member co-investigators, we have developed a video-based advance care planning aid for cancer patients and their family members who are...

FAmily CEntered (FACE) Advance Care Planning for Teens With Cancer

Advance Care Planning (ACP) prepares patients and their loved ones for future health care decisions, including end-of-life decisions. Yet, the needs of adolescent oncology patients for pa...

Patient-Centered Advance Care Planning

Based on theories regarding decision-making and patient education the investigators have developed Patient-Centered Advance Care Planning (PC-ACP). This intervention is designed to improv...

Reducing Disparities in the Quality of Advance Care Planning for Older Adults

This study compares the effectiveness of two different approaches to advance care planning among older African Americans and older Whites living in the community. The two approaches are a ...

PubMed Articles [29446 Associated PubMed Articles listed on BioPortfolio]

FAmily CEntered (FACE) Advance Care Planning among African-American and non-African-American Adults Living with HIV in Washington, DC: A Randomized Controlled Trial to Increase Documentation & Health Equity.

No prospective studies address disease-specific Advance Care Planning (ACP) for adults living with HIV/AIDS.

Advance care planning in a multi-cultural family-centric community: A qualitative study of healthcare professionals', patients' and caregivers' perspectives.

Advance care planning has been shown to improve end-of-life care but it was developed in the USA and most research has been conducted in western communities.

Development of Nurse Practitioner Competencies for Advance Care Planning.

This article describes the development of nurse practitioner (NP) competencies for advance care planning. Nurse practitioners are well positioned to implement advance care planning with their patients...

Unintended harm? Race differences in the relationship between advance care planning and psychological distress at the end-of-life.

Research has revealed racial disparities in advance care planning and intensity of end-of-life care. Studies of the relationship between advance care planning and sadness and anxiety at the end-of-lif...

Components of the Advance Care Planning Process in the Nursing Home Setting.

The purposes of this study were to describe the advance care planning process for nursing home residents and identify common concerns regarding advance care planning. We conducted a content analysis o...

Medical and Biotech [MESH] Definitions

Discussions with patients and/or their representatives about the goals and desired direction of the patient's care, particularly end-of-life care, in the event that the patient is or becomes incompetent to make decisions.

Health care programs or services designed to assist individuals in the planning of family size. Various methods of CONTRACEPTION can be used to control the number and timing of childbirths.

A food service control process involving scheduling of meals in advance.

A course or method of action selected, usually by a government, to guide and determine present and future decisions on population control by limiting the number of children or controlling fertility, notably through family planning and contraception within the nuclear family.

Declarations by patients, made in advance of a situation in which they may be incompetent to decide about their own care, stating their treatment preferences or authorizing a third party to make decisions for them. (Bioethics Thesaurus)

More From BioPortfolio on "Palliative Care in People Living With HIV/AIDS: Integrating Into Standard of Care"

Quick Search


Relevant Topics

Palliative Care
Palliative care is the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the ...

Public Health
Alternative Medicine Cleft Palate Complementary & Alternative Medicine Congenital Diseases Dentistry Ear Nose & Throat Food Safety Geriatrics Healthcare Hearing Medical Devices MRSA Muscular Dyst...

Health care (or healthcare) is the diagnosis, treatment, and prevention of disease, illness, injury, and other physical and mental impairments in humans. Health care is delivered by practitioners in medicine, chiropractic, dentistry, nursing, pharmacy, a...

Searches Linking to this Trial