A randomized clinical trial of adolescents with HIV/AIDS: pediatric advance care planning

The objective of this study is to determine if pediatric advance care planning (pACP) increases adolescent/family congruence in end-of-life (EOL) treatment preferences longitudinally. Adolescents aged 14–21 years with HIV/AIDS and their families were randomized (N?=?105 dyads) to three-60-minute sessions scheduled one week apart: either the pACP intervention (survey administered independently, facilitated conversation with adolescent and family present, completion of legal advance directive document with adolescent and family present) or an active control (developmental history, safety tips, nutrition and exercise education). This longitudinal, single-blinded, multi-site, randomized controlled trial was conducted in six pediatric hospital-based HIV-clinics, located in high HIV mortality cities. The Statement of Treatment Preferences measured adolescent/family congruence in EOL treatment preferences at immediately following the facilitated pACP conversation (Session 2), and at 3-month post-intervention. The mean age of adolescent participants was 18 years (range 14–21 years); 54% were male; and 93% were African-American. One-third had an AIDS diagnosis. Immediately post-intervention the Prevalence Adjusted Bias Adjusted Kappa showed substantial treatment preference agreement for pACP dyads compared to controls (High burden/low chance of survival, PABAK?=?0.688 vs. 0.335; Functional impairment, PABAK?=?0.687 vs. PABAK=?0.34; Mental impairment, PABKA?=?0.717 vs. 0.341). Agreement to limit treatments was greater among intervention dyads than controls (High burden: 14.6% vs. 0%; Functional impairment?=?22.9% vs. 4.4%; and Mental impairment: 12.5% vs. 4.4%). Overall treatment preference agreement among pACP dyads was high immediately post-intervention, but decreased over time. In contrast, treatment agreement among control dyads was low and remained low over time. As goals of care change over time with real experiences, additional pACP conversations are needed.     

Changes in religiousness and spirituality attributed to HIV/AIDS

Background/Objective

Having a serious illness such as HIV/AIDS raises existential issues, which are potentially manifested as changes in religiousness and spirituality. The objective of this study was (1) to describe changes in religiousness and spirituality of people with HIV/AIDS, and (2) to determine if these changes differed by sex and race.

Methods

Three-hundred and forty-seven adults with HIV/AIDS from 4 sites were asked demographic, clinical, and religious/spiritual questions. Six religious/spiritual questions assessed personal and social domains of religiousness and spirituality.

Results

Eighty-eight participants (25%) reported being “more religious” and 142 (41%) reported being “more spiritual” since being diagnosed with HIV/AIDS. Approximately 1 in 4 participants also reported that they felt more alienated by a religious group since their HIV/AIDS diagnosis and approximately 1 in 10 reported changing their place of religious worship because of HIV/AIDS. A total of 174 participants (50%) believed that their religiousness/spirituality helped them live longer. Fewer Caucasians than African Americans reported becoming more spiritual since their HIV/AIDS diagnosis (37% vs 52%, respectively; P<0.15), more Caucasians than African Americans felt alienated from religious communities (44% vs 21%, respectively: P<0.01), and fewer Caucasians than African Americans believed that their religiousness/spirituality helped them live longer (41% vs 68% respectively: P<0.01). There were no significantly different reported changes in religious and spiritual experiences by sex.

Conclusions

Many participants report having become more spiritual or religious since contracting HIV/AIDS, though many have felt alienated by a religious group—some to the point of changing their place of worship. Clinicians conducting spiritual assessments should be aware that changes in religious and spiritual experiences attributed to HIV/AIDS might differ between Caucasian and African Americans.

     

Comparing utilization of life-sustaining treatments with patient and public preferences

OBJECTIVE: The movement for advance planning of end-of-life care was motivated in part by the assumption that medical intervention for terminally ill patients varies from what these patients would prefer. We examined the validity of this assumption by comparing actual life-sustaining treatment practices for patients in critical illness scenarios and surveyed patients’ advance care preferences. MEASUREMENTS AND MAIN RESULTS: We selected at random and reviewed 7,400 inpatient medical records from a single urban teaching hospital during the period just prior to the Patient Self-Determination Act. Records of 198 patients with conditions that matched advance directive scenarios were examined, and practices to withhold or withdraw seven life-sustaining treatments were documented. Practices were compared with surveyed preferences of 102 members of the general public and 495 outpatients who were followed by the same physicians as the 198 patients. Concordance of practices and preferences for the 19 surveyed outpatients who eventually fell into one of the scenarios was also evaluated. One hundred sixty-seven inpatient cases met review criteria for the scenario coma with a small chance of recovery. Hospital patients received medical interventions that were not consistently greater or less than the preferences of the surveyed outpatients or members of the general public. Resuscitation, the most frequently withheld treatment (94% of cases), was withheld more often than surveyed preferences to decline it (56% of outpatients, p<.001). Four treatments—mechanical breathing, artificial nutrition, major surgery, and hemodialysis—were utilized comparably to suveyed outpatients’ preferences (range p=.704−.055). Antibiotics and artificial hydration were withheld (9% and 6%, respectively) less often than surveyed outpatient’s prior preferences to decline them (48% and 52%, respectively, p<.001 for each). Conversely, treatments given to the 19 surveyed patients who subsequently developed one of the illness scenarios were often incongruent with the patients’ prior preferences. Again, in some cases more interventions were provided (26 of 63 declined treatments were given), and in some cases less (10 of 21 desired treatments were withheld). CONCLUSIONS: This study does not support the assumption that, collectively, patients’ advance care preferences are less interventionist than actual practices for patients in corresponding scenarios. Nevertheless, these results do support the assumption that life-sustaining treatment decisions do not conform well to individual patients’ specific preferences. Progress in end-of-life care should focus on shared decision making at the patient-proxy-physician level rather than on overall life-sustaining treatments utilization. Received from the Division of Medical Ethics, Harvard Medical School, Boston, Mass. Supported by grants from the William F. Milton Fund and the Decamp Foundation.     

Sexuality and Aging:

Previous research has been conducted regarding preferences of physicians for life-sustaining treatments for themselves, but there is a dearth of data on personal use of advance directives (ADs) by geriatricians specifically. Using a phone survey, we contacted all graduates of the geriatric fellowship program to assess their personal use of advance directives and their personal preferences for life-sustaining treatment. Of the 124 living graduates of the Parker Jewish Institute for Health Care and Rehabilitation, 70 agreed to participate. One third of respondents had established ADs for themselves, with higher rates in women than men (p = .054). Older geriatricians were significantly more likely to have advance directives (exact trend test yields, p < .0001). In general, respondents did not inform their health care providers about their desires for end-of-life care. This study revealed that the majority of fellowship-trained geriatricians did not formally establish advance directives for themselves. Further research is needed to determine whether physicians who establish advance directives for themselves are more likely to encourage their patients to do so.     

Dialysis patients' preferences for family-based advance care planning.

BACKGROUND: Most patients do not participate in advance care planning with physicians. OBJECTIVE: To examine patients' preferences for involving their physicians and families in advance care planning. DESIGN: Face-to-face interviews with randomly selected patients. SETTING: Community-based dialysis units in one rural and one urban region. PARTICIPANTS: 400 hemodialysis patients. MEASUREMENTS: Questions about whom patients involve in advance care planning, whom patients would like to include in this planning, and patients' reactions to state legislation on surrogate decision makers in end-of-life care. RESULTS: Patients more frequently discussed preferences for end-of-life care with family members than with physicians (50% compared with 6%; P < 0.001). More patients wanted to include family members in future discussions of advance care planning than wanted to include physicians (91% compared with 36%; P < 0.001). Patients were most comfortable with legislation that granted their family end-of-life decision-making authority in the event of their own incapacity (P < 0.001). CONCLUSION: Most patients want to include their families more than their physicians in advance care planning.     

Barriers to communication about end-of-life care in AIDS patients

Objective

Patients and physicians do not adequately discuss patients’ preferences for medical care at the end of life. Our objective was to perform a qualitative study using focus groups to identify barriers and facilitators to communication about end-of-life medical care for patients with AIDS and their physicians.

Participants

Patients with AIDS and physicians with moderate or extensive HIV experience were recruited from clinics and community-based settings using network sampling. A total of 47 patients participated in six focus groups and 19 physicians participated in three groups.

Measurements and main results

Patients or physicians identified 29 barriers and facilitators to communication about end-of-life care. Many patients and physicians expressed discomfort talking about death and dying, and some felt that discussing end-of-life care could cause harm or even hasten death. Several patients expressed the view that a living will obviated the need for discussion with their physician. Previous experience of discrimination from the health care system was a strong barrier to end-of-life communication for some patients with AIDS. Some patients hesitate to bring up end-of-life issues because they want to protect their physicians from uncomfortable discussions. Many patients identified the quality of communication as an important facilitator to these difficult discussions.

Conclusions

Improving the quality of patient-physician communication about end-of-life care will require that physicians identify and overcome the barriers to this communication. To improve the quality of medical care at the end of life, we must address the quality of communication about end-of-life care.     

An increase in religiousness/spirituality occurs after HIV diagnosis and predicts slower disease progression over 4 years in people with HIV

Background

Most studies on religion/spirituality predicting health outcomes have been limited to church attendance as a predictor and have focused on healthy people. However, confronting a major medical crisis may be a time when people turn to the sacred.

Objective

The purpose of this study was to determine the extent to which changes in spirituality/religiousness occur after HIV diagnosis and whether changes predict disease progression.

Design/participants

This longitudinal study examined the relationship between changes in spirituality/religiousness from before with after the diagnosis of HIV, and disease progression (CD4 and viral load [VL] every 6 months) over 4 years in 100 people with HIV. Measures included change in religiousness/spirituality after diagnosis of HIV, religiousness/spirituality at various times in one’s life, church attendance, depression, hopelessness, optimism, coping (avoidant, proactive), social support, CD4/VL, and health behaviors.

Results

Forty-five percent of the sample showed an increase in religiousness/spirituality after the diagnosis of HIV, 42% remained the same, and 13% decreased. People reporting an increase in spirituality/religiousness after the diagnosis had significantly greater preservation of CD4 cells over the 4-year period, as well as significantly better control of VL. Results were independent of (i.e., held even after controlling for) church attendance and initial disease status (CD4/VL), medication at every time point, age, gender, race, education, health behaviors (adherence, risky sex, alcohol, cocaine), depression, hopelessness, optimism, coping (avoidant, proactive), and social support.

Conclusions

There is an increase in spirituality/religiousness after HIV diagnosis, and this increase predicts slower disease progression; medical personnel should be aware of its potential importance.

     

Lessons Learned from “Integrating” Intensive Family-based Interventions into Medical Care Settings for Mothers Living with HIV/AIDS and their Adolescent Children

Centers for Disease Control and Prevention (CDC) has recommended integrating behavioral interventions into medical care settings for persons living with HIV. Delivering an intensive, family-based intervention for mothers living with HIV (MLH) (n = 173) and their adolescent children (n = 116) integrated into medical care was problematic. Despite the fact that nearly half of MLH were recruited at HIV/AIDS clinics, community centers and children’s hospitals were the most popular and most successful sites for the delivery of the intervention. We provide recommendations for how to integrate intensive interventions into medical care, given the needs of MLH, their adolescents, and the organizations serving them.     

Faith,Spirituality, Fatalism and Hope

ABSTRACT

This study represents an illumination of the voices of Ghanaian women affected by HIV/AIDS. This phenomenological study provides meaningful insight into Ghanaian women's perspectives on living with HIV/AIDS. Emerging from the experiences of the 20 co-researchers is a construction of the phenomenon of living with HIV/AIDS. Core dimensions of this phenomenon include The Pre-Illness Experience, The Core Experience of Living with HIV/AIDS and The Transformation of Self. This article will focus on one of the prominent themes of the co-researchers' Core Experience of Living with HIV/AIDS, namely coping through faith, spirituality, fatalism and hope.     

Content of advance care planning among Japanese elderly people living at home: A qualitative study

Purpose of studyElderly peoples’ values and preferences for end-of-life care have not yet known in details. The aim of the present study was to investigate the end-of-life wishes and decision making among Japanese elderly people who required home care services. The study was designed to qualitative research strategies, using face to face interview data recorded in nursing care records, with a focus on advance care planning.Design and methodsA total of 102 elderly people (47 males, 55 females) of 6 home care support offices in Hyogo prefecture participated.Results and implicationsWe finally extracted the following 5 themes: anxiety about the future, abandonment of control, clinging to current daily life, precarious mutual support, delegating decision-making. While elderly people living at home generally feel anxious and fearful about the future, they seemed to try to avoid thinking too seriously about possible complications in their life.They also tend to leave end-of-life decision to someone else, and their decisions tend to change as they advance in age and as their condition deteriorates. Our findings suggest that medical professionals and care managers always support their patients’ decisions, allowing for the views of the informal caregivers on whom elderly people rely for decision-making.     

End-of-life care preferences of patients enrolled in cardiovascular rehabilitation programs

STUDY OBJECTIVES: The study assessed the interests of ambulatory cardiac patients in advance planning and their willingness to participate in rehabilitation program-based end-of-life education. DESIGN: Observational survey study. SETTING: Fourteen outpatient cardiac rehabilitation programs in 11 states. PARTICIPANTS: Four hundred fifteen subjects enrolled in cardiac rehabilitation. MEASUREMENTS AND RESULTS: A questionnaire determined patient preferences for advance planning, completion of advance directives, completion of patient-physician discussions on end-of-life care, and effects of health status on patient acceptance of life-sustaining interventions. Seventy-two percent of patients wanted to direct their own end-of-life care, 86% desired more information on advance directives, 62% wanted to learn about life-sustaining care, and 96% were receptive to advance-planning discussions with their physicians. Seventy-two percent of patients had considered that they might require life-sustaining care in the future; acceptability of resuscitative care depended on health status and probability of survival. However, only 15% had discussed advance planning with their physicians, and 10% were confident that their physicians understood their end-of-life wishes. Physicians and cardiovascular rehabilitation programs were considered desirable sources of information on advance planning. CONCLUSIONS: Cardiac patients enrolled in rehabilitation programs want to learn more about end-of-life care and need more opportunities to discuss advance planning with their physicians. Patients consider cardiovascular rehabilitation programs to be acceptable sites for advance planning education.     

Racial variations in end-of-life care

OBJECTIVES: To identify differences in advanced care planning and end-of-life decision-making between whites and blacks aged 70 and older. DESIGN: The Asset and Health Dynamics Among the Oldest Old (AHEAD) study is a nationally representative survey of adults who were aged 70 and older in 1993. Relatives (proxy respondents) for 540 persons who died between the first (1993) and second (1995) waves of the study were surveyed about advanced care planning and end-of-life decisions that were made for their family member who died. SETTING: Respondents were interviewed at home by telephone (n = 444) or in person (n = 95). PARTICIPANTS: The 540 proxy respondents included 454 whites and 86 blacks. MEASUREMENTS: Questions were asked about advance care planning and end-of-life decisions. RESULTS: Whites were significantly more likely than blacks to discuss treatment preferences before death (P = .002), to complete a living will (P = .001), and to designate a Durable Power of Attorney for Health Care (DPAHC) (P = .032). The treatment decisions for whites were more likely to involve limiting care in certain situations (P = .007) and withholding treatment before death (P = .034). In contrast, the treatment decisions for blacks were more likely to be based on the desire to provide all care possible in order to prolong life (P = .013). Logistic regression models revealed that race continued to be a significant predictor of advance care planning and treatment decisions even after controlling for sociodemographic factors. CONCLUSIONS: These findings suggest that there are important differences between blacks and whites regarding advanced care planning and end-of-life decision-making. Health professionals need to understand the diverse array of end-of-life preferences among various racial and ethnic groups and to develop greater awareness and sensitivity to these preferences when helping patients with end-of-life decision-making.     

The quality of patient-doctor communication about end-of-life care: a study of patients with advanced AIDS and their primary care clinicians.

OBJECTIVE: To assess prevalence and quality of end-of-life communication between persons with advanced AIDS and their clinicians and to identify patient and clinician characteristics associated with this communication. DESIGN: Prospective cohort study of 57 patients with AIDS and their primary care clinicians. SETTING: University-based and private clinics in Seattle, Washington. PATIENTS: Patients had a prior AIDS-defining illness and a CD4 cell count of less than 100 x 10(6) cells/l. MAIN OUTCOME MEASURES: Quality of patient-clinician communication about end-of-life care, validated against patient satisfaction and patient-clinician concordance on advance directives and treatment preferences. RESULTS: Patients reported they had communication about end-of-life care with their clinician in 31 of 57 cases (54%) while clinicians reported they had this discussion in 36 of 57 cases (64%). Patients and clinicians gave concordant answers in 42 patient-clinician pairs. In 15 pairs (26%), patients and clinicians disagreed about whether end-of-life communication had occurred. African-American and Hispanic patients were less likely to report having communication than non-Hispanic white patients (chi-square analysis: chi2 = 4.67; P < 0.05); injection drug users and women with high-risk sexual partners were less likely to report communication than homosexual or bisexual men (chi2 = 4.67; P < 0.05). A four-item measure of patients' assessment of the quality of communication about end-of-life care had good internal consistency (Cronbach's alpha 0.81) and was significantly correlated with overall satisfaction with medical care (r2 = 0.76; P < 0.0001). Patients with lower income reported lower quality of communication (chi2 = 5.82; P = 0.05). If patients assessed quality of communication as high, their clinicians were more likely to know if the patient had a durable power of attorney for health care (chi2 = 4.95; P = 0.03) but were not more likely to predict patients' preferences for life-sustaining treatments. CONCLUSIONS: Quality of patient-clinician communication about end-of-life care can be measured in a brief questionnaire; higher quality of this communication is associated with higher satisfaction with care and increased clinician knowledge of patients' advance directives. Since socioeconomic status and ethnicity are associated with both the occurrence and quality of this communication, future interventions in end-of-life care should assess the effect of these variables. Given the important and independent goals of improving patient-clinician communication about end-of-life care and improving the quality of care at the end of life, future studies should test interventions to improve the quality of communication and determine whether improving this communication improves the quality of care at the end of life.     

An Increase in Religiousness/Spirituality Occurs After HIV Diagnosis and Predicts Slower Disease Progression over 4 Years in People with HIV

BACKGROUND: Most studies on religion/spirituality predicting health outcomes have been limited to church attendance as a predictor and have focused on healthy people. However, confronting a major medical crisis may be a time when people turn to the sacred.
OBJECTIVE: The purpose of this study was to determine the extent to which changes in spirituality/religiousness occur after HIV diagnosis and whether changes predict disease progression.
DESIGN/PARTICIPANTS: This longitudinal study examined the relationship between changes in spirituality/religiousness from before with after the diagnosis of HIV, and disease progression (CD4 and viral load [VL] every 6 months) over 4 years in 100 people with HIV. Measures included change in religiousness/spirituality after diagnosis of HIV, religiousness/spirituality at various times in one's life, church attendance, depression, hopelessness, optimism, coping (avoidant, proactive), social support, CD4/VL, and health behaviors.
RESULTS: Forty-five percent of the sample showed an increase in religiousness/spirituality after the diagnosis of HIV, 42% remained the same, and 13% decreased. People reporting an increase in spirituality/religiousness after the diagnosis had significantly greater preservation of CD4 cells over the 4-year period, as well as significantly better control of VL. Results were independent of (i.e., held even after controlling for) church attendance and initial disease status (CD4/VL), medication at every time point, age, gender, race, education, health behaviors (adherence, risky sex, alcohol, cocaine), depression, hopelessness, optimism, coping (avoidant, proactive), and social support.
CONCLUSIONS: There is an increase in spirituality/religiousness after HIV diagnosis, and this increase predicts slower disease progression; medical personnel should be aware of its potential importance.     

Smoking Among HIV Positive New Yorkers: Prevalence,Frequency, and Opportunities for Cessation

Tobacco use presents unique health risks for persons living with HIV/AIDS (PLWHA). There is an urgent need to characterize tobacco use among PLWHA, and to assess the capacity of HIV/AIDS service providers to deliver smoking cessation interventions. Questionnaires were administered to PLWHA in care in New York State (n = 1,094) and to State-funded HIV/AIDS service providers (n = 173) from 2005 to 2007. Current PLWHA smoking prevalence was 59%, three times the general population rate. Over 50% of current smokers were moderately or highly dependent on nicotine. Three-quarters of smokers indicated an interest in quitting, and 64% reported a least one quit attempt during the past year. Less than half of HIV/AIDS service providers reported always assessing tobacco use status, history, dependence, or interest in quitting at intake. Medical care providers were more likely to conduct assessments and provide services. Although 94% of providers indicated a willingness to incorporate tobacco cessation services, 65% perceived client resistance as a barrier to services. HIV/AIDS service providers are inadequately addressing the high smoking rate among PLWHA, despite being uniquely suited to do so. Efforts are needed to educate providers about the need for, and interest in, tobacco cessation.     

Factors associated with adherence to antiretroviral therapy among adolescents living with HIV/AIDS in low- and middle-income countries: a systematic review

Adolescents living in low- and middle-income countries (LMICs) are disproportionately burdened by the global HIV/AIDS pandemic. Maintaining medication adherence is vital to ensuring that adolescents living with HIV/AIDS receive the benefits of antiretroviral therapy (ART), although this group faces unique challenges to adherence. Knowledge of the factors influencing adherence among people during this unique developmental period is needed to develop more targeted and effective adherence-promoting strategies. This systematic review summarizes the literature on quantitative observational studies examining correlates, including risk and resilience-promoting factors, of ART adherence among adolescents living with HIV/AIDS in LMICs. A systematic search of major electronic databases, conference-specific databases, gray literature, and reference lists of relevant reviews and documents was conducted in May 2014. Included studies examined relationships between at least one factor and ART adherence as an outcome and were conducted in primarily an adolescent population (age 10–19) in LMICs. The search identified 7948 unique citations from which 15 studies fit the inclusion criteria. These 15 studies identified 35 factors significantly associated with ART adherence representing a total of 4363 participants across nine different LMICs. Relevant studies revealed few consistent relationships between measured factors and adherence while highlighting potentially important themes for ART adherence including the impact of (1) adolescent factors such as gender and knowledge of serostatus, (2) family structure, (3) the burdensome ART regimens, route of administration, and attitudes about medication, and (4) health care and environmental factors, such as rural versus urban location and missed clinic appointments. Rates of adherence across studies ranged from 16% to 99%. This review identifies unique factors significantly related to ART adherence among adolescents living in LMICs. More research using longitudinal designs and rigorous measures of adherence is required in order to identify the range of factors influencing ART adherence as adolescents living with HIV/AIDS in LMICs grow into adulthood.     

Managing AIDS stigma

According to anecdotal reports, AIDS stigma and discrimination continue to influence people living with and affected by HIV disease as well as their health care providers, particularly in southern Africa where the burden of AIDS is so significant. Stigma is perceived as a major limiting factor in primary and secondary HIV/AIDS prevention and care. It reportedly interferes with voluntary testing and counselling, and with accessing care and treatments, thereby increasing suffering and shortening lives. Many health care workers in southern Africa have come to the conclusion that unless stigma is conquered, the illness will not be defeated. While there is substantial anecdotal evidence of the impact of stigma on AIDS care, very little rigorous research has been conducted. This article explores three questions: What is AIDS stigma? What is the impact of AIDS stigma? How can health care providers help to manage AIDS stigma?     

The disclosure model versus a developmental illness experience model for children and adolescents living with HIV/AIDS in São Paulo, Brazil

Whether, how, and when children's HIV/AIDS diagnosis needs to be disclosed to them has received growing attention. This paper describes and conceptualizes how communication about HIV/AIDS influences disease knowledge and psychosocial development in a group of children and adolescents living with perinatally acquired HIV infection in an AIDS institution in S?o Paulo, Brazil. Data consist of the lived experience of 36 children ages 1 to 15 and was gathered through ethnographic research methodologies: participant observation and semistructured informal interviews. Results show that AIDS diagnosis is not disclosed to children, who experience a growing confusion about the interconnected meanings of sickness, medications, living at a house/institution, and having AIDS. Children younger than 6 learn to accept medication taking and to silence illness-related questions. Seven to 9-year olds perceive that the word AIDS and/or being sick are considered negative attributes, but are confused about how these relate to their lives. Preadolescents' growing awareness of the relationship between their lives and negative social values associated with AIDS produces shame and anger. Adolescents exhibit a poor understanding of the implications of HIV/AIDS for their lives and cynicism toward AIDS care, their future, and information about risks to their health. In conclusion, lack of communication about HIV/AIDS creates a context of confusion and mistrust, is detrimental to psychosocial development and coping, compromises disease knowledge, and increases vulnerability to risk behavior. Providing developmentally appropriate information about HIV/AIDS that matches children's illness experiences at all ages would eliminate the need for disclosure and reduce children's emotional distress.