INTRODUCTION: Little is known about the effects of HIV reservoir research at the end of life on staff members involved. Staff members' perceptions and experiences were assessed related to their involvement in the Last Gift, a rapid autopsy study at the University of California San Diego enrolling people living with HIV who are terminally ill and have a desire to contribute to HIV cure-related research.
METHODS: Two focus group discussions consisting of clinical (n = 7) and rapid research autopsy (n = 8) staff members were conducted to understand the perspectives of staff members and the impact the Last Gift rapid autopsy study had on them. The total sample consisted of 66.7% females and 33.3% males and was ethnically diverse (66.7% Caucasian, 6.7% African American, 20.0% Asian descent, 6.7% Hispanic descent and American Indian) with a range of experience in the HIV field from 1 year to 30 years.
RESULTS: Qualitative focus group data revealed five major themes underlying study staff members' multilayered mental and practical involvement: 1) positive perceptions of the Last Gift study, with sub-themes including Last Gift study participants' altruism, fulfillment, and control at the end of life, 2) perceptions of staff members' close involvement in the Last Gift study, with sub-themes related to staff members' cognitive processing, self-actualization and fulfillment, stress management and resilience, coping mechanisms, and gratitude toward Last Gift participants and toward the study itself, 3) considerations for successful and sustainable study implementation, such as ethical awareness and sustained community and patient engagement, 4) collaborative learning and organizational processes and the value of interdependence between staff members, and 5) considerations for potential study scale-up at other clinical research sites.
DISCUSSION: Understanding staff members' nuanced emotional and procedural experiences is crucial to the Last Gift study's sustainability and will inform similar cure research studies conducted with people living with HIV at the end of life. The study's potential reproducibility depends on a robust research infrastructure with established, interdependent clinical and rapid autopsy teams, continuous community engagement, and an ethical and well-informed engagement process with people living with HIV.
One-quarter of annual Medicare expenses in the traditional program (non-Medicare Advantage) are expended for 5% of Medicare enrollees, with much of this expenditure occurring in the last year of life. Hospice use may reduce end-of-life costs. However, evidence has been inconclusive due to sample selection and differences in insurance coverage for hospice. Claims data for HIV-positive Californians enrolled in Medicare who died in the period 2008 to 2010 were used to examine the relationship between hospice use and costs in the last 6 months of life. Logit estimates related hospice use to sickness levels and demographics. Inpatient and outpatient costs were analyzed separately. Logit regressions examined hospitalization probability. Robust regressions were used to examine the determinants of conditional inpatient costs and non-inpatient costs. Bootstrapped post-estimates were then used to determine the marginal probability of costs for the sample by hospice use. Hospice users have greater disease burden and are less likely to be African American. Controlling for disease burden, hospice users would have non-inpatient costs that were $14 771 greater than hospice non-users, but inpatient costs that were $20 522 lower. Thus, hospice reduces costs on net. Hospice is chosen by patients with more comorbidities. Controlling for these comorbidities, hospice use is associated with lower inpatient costs, greater non-inpatient costs and reduced end-of-life costs.
OBJECTIVES: This study aimed to assess the lived experiences of palliative care among critically unwell people living with HIV/AIDS (PLHA), caregivers and relatives of deceased patients. It also aimed to understand the broader palliative care context in Bihar.
DESIGN: This was an exploratory, qualitative study which used thematic analysis of semistructured, in-depth interviews as well as a focus group discussion.
SETTING: All interviews took place in a secondary care hospital in Patna, Bihar which provides holistic care to critically unwell PLHA.
PARTICIPANTS: We purposively selected 29 participants: 10 critically unwell PLHA, 5 caregivers of hospitalised patients, 7 relatives of deceased patients who were treated in the secondary care hospital and 7 key informants from community-based organisations.
RESULTS: Critically ill PLHA emphasised the need for psychosocial counselling and opportunities for social interaction in the ward, as well as a preference for components of home-based palliative care, even though they were unfamiliar with actual terms such as 'palliative care' and 'end-of-life care'. Critically unwell PLHA generally expressed preference for separate, private inpatient areas for end-of-life care. Relatives of deceased patients stated that witnessing patients' deaths caused trauma for other PLHA. Caregivers and relatives of deceased patients felt there was inadequate time and space for grieving in the hospital. While both critically ill PLHA and relatives wished that poor prognosis be transparently disclosed to family members, many felt it should not be disclosed to the dying patients themselves.
CONCLUSIONS: Despite expected high inpatient fatality rates, PLHA in Bihar lack access to palliative care services. PLHA receiving end-of-life care in hospitals should have a separate dedicated area, with adequate psychosocial counselling and activities to prevent social isolation. Healthcare providers should make concerted efforts to inquire, understand and adapt their messaging on prognosis and end-of-life care based on patients' preferences.
Young men of color who have sex with men (yMSM) living with human immunodeficiency virus (HIV) in syndemic environments have been difficult-to-retain in care resulting in their being at-risk for poor health outcomes despite availability of effective once-daily antiretroviral treatment (ART). Multiple methods have been implemented to improve outcomes for this cohort; none with sustainable results. Outpatient HIV staff themselves may be a contributing factor. We introduced multidisciplinary staff to the concept of using a palliative approach early (ePA) in outpatient HIV care management to enable them to consider the patient-level complexity of these young men. Young MSM (18-35 years of age) enrolled in and cared for at the intervention site of the Care and Support Access Study (CASA), completed serial surveys over 18 months. Patients' Global and Summary quality of life (QoL) increased during the study at the intervention site (IS) where staff learned about ePA, compared with patients attending the control site (CS) (p=.021 and p=.018, respectively). Using serial surveys of staff members, we found that in the era of HIV disease control, outpatient staff are stressed more by environmental factors than by patients' disease status seen historically in the HIV epidemic. A Community Advisory Panel of HIV stakeholders contributed to all phases of this study and altered language used in educational activities with staff members to describe the patient cohort.
Death and infection were closely linked from the start of the HIV epidemic, until successful treatments became available. The initial impact of mostly young, gay men dying from HIV was powerful in shaping UK responses. Neoliberal discourses developed at the same time, particularly focusing on how citizens (rather than the state) should take responsibility to improve health. Subsequently “successful ageing” became an allied discourse, further marginalising death discussions. Our study reflected on a broad range of meanings around death within the historical UK epidemic, to examine how dying narratives shape contemporary HIV experiences. Fifty-one participants including people living with HIV, professionals, and activists were recruited for semistructured interviews. Assuming a symbolic interactionist framework, analysis highlighted how HIV deaths were initially experienced as not only traumatic but also energizing, leading to creativity. With effective antiretrovirals, dying changed shape (e.g., loss of death literacy), and better integration of palliative care was recommended.
End-of-life (EOL) HIV cure-related research provides a novel approach to studying HIV reservoirs. The Last Gift is a rapid autopsy research study at the University of California San Diego that enrolls terminally ill people living with HIV (PLWHIV) with a desire to contribute to HIV cure-related research. We conducted in-depth baseline and follow-up interviews with Last Gift study participants. We analyzed interview data applying conventional content analysis. Since summer 2017, 13 participants have been enrolled (n = 11 males and 2 females; aged 45–89 years) and 8 participants interviewed. Terminal illnesses included cancers, heart diseases, and neurodegenerative illnesses. Our analysis revealed five key themes: (1) The Last Gift study has tremendous meaning for participants at the end of their life. (2) HIV-specific altruism was a primary motivator to join the Last Gift study, nested within the context of community, scientific advancement, and moral obligation. (3) Participants did not expect physical benefits yet they perceived emotional/psychological, financial, and societal/scientific benefits. (4) There were minimal participant-perceived risks and concerns. (5) Last Gift participants expressed immense gratitude toward study staff. The Last Gift study provides a framework for ethical HIV cure-related research at EOL and highlighted participants' perspectives, motivations, and experiences. Knowing how PLWHIV understand and experience such studies will remain critical to designing ethical, fully informed HIV cure research protocols that are acceptable to PLWHIV.
A growing number of people living with HIV/AIDS are participating in HIV cure-related research at the end of life (EOL). Due to the novelty of EOL HIV cure-related research, there is a need to understand how their next-of-kin (NOK) perceive such research. We conducted in-depth interviews with NOK of the Last Gift study participants at the University of California, San Diego. The Last Gift study occurs in the context of the EOL and involves a full body donation. NOK completed two interviews: (1) shortly after the participants' enrollment in the study and (2) following death. We applied thematic analysis to analyze qualitative data. NOK included seven individuals (five males and two females), including two spouses, one ex-partner, one sister, a grandmother/grandfather, and a close friend. Thematic analysis revealed five key themes: (1) NOK viewed the Last Gift program in a positive light and had an accurate overall understanding of the study; (2) NOK identified factors that motivated participants to donate their body to science; (3) NOK identified benefits of the Last Gift program for both the donors and themselves; (4) NOK did not perceive any physical risks or decisional regrets of study but wanted to minimize psychosocial impacts and ensure the dignity of participants at all times; and (5) NOK noted elements that remained essential to the successful implementation of EOL HIV cure-related research, such as early involvement and clear communication. Our study uniquely contributes to increased understanding and knowledge of what is important from the point of view of supportive NOK to ensure successful implementation of EOL HIV cure-related research. More research will be needed to understand perspectives of less supportive NOK.
Trial tested effect of advance care planning on family/surrogates’ understanding of patients’ end-of-life treatment preferences longitudinally. A multisite, assessor-blinded, intent-to-treat, parallel-group, randomized controlled clinical trial in five hospital-based HIV clinics enrolled 449 participants aged 22 to 77 years during October 2013-March 2017. Patients living with HIV/family dyads were randomized at 2:1 ratio to 2 weekly ~ 60-min sessions either ACP (n = 155 dyads)—(1) ACP facilitated conversation, (2) Advance directive completion; or Control (n = 68 dyads)—(1) Developmental/relationship history, (2) Nutrition/exercise tips. ACP families/surrogates were more likely to accurately report patients’ treatment preferences at Time 1 (T1) and 12 months post-intervention (T2) compared to controls, experiencing high congruence longitudinally (high high transition), [63·6% vs 37·7% (difference = 25·9%, 95% CI: 11·3%, 40·4%, 2 = 11·52, p = 0·01)], even as patients’ preferences changed over time. ACP families/surrogates had eight times the odds of controls of having an excellent understanding of patients’ treatment preferences (Adjusted Odds Ratio 7.91, 95%CI: 3.08, 20.3).
Human immunodeficiency virus infection is incurable. About 770 000 people died of HIV worldwide in 2018. More than two-thirds of these died in Africa (UNAIDS Global Aids Update 2019). Although Statistics South Africa has recorded some improvement in the overall survival, HIV-related levels of morbidity and mortality remain high. Mortality is greatest among those not on antiretroviral therapy (ART), that is, either naïve to ART or those who have stopped taking medication and are outside of care. Mortality is also high in he first year after the start of ART. Of South Africa’s 7.97 million people living with HIV (PLWHIV) in 2019, only 4.94 million are on ART. A
detectable viral load while on ART is usually a sign of treatment failure or poor viral control. These persons are also at increased risk of HIV-related morbidity and mortality.
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BACKGROUND: Early palliative care addresses biopsychosocial needs for people living with HIV in an outpatient setting. We sought to describe patients referred to a palliative care program and compare the medical outcomes of emergency department (ED) visits, hospitalizations, primary care visits, and viral load suppression among patients enrolled in the program, to patients who did not enroll (no-show group).
SETTING: We completed a retrospective cohort study at an urban, academically- affiliated HIV primary care clinic.
METHODS: Data were collected from electronic medical records. Descriptive statistics characterized patient demographics at baseline, comorbidities, and reasons for referral to palliative care. Viral load suppression, rates of ED visits, hospitalizations, primary care visits, and retention in care were compared between the palliative and no-show groups.
RESULTS: The most common reasons for referral were chronic pain management and medication/appointment adherence. Median percent of viral load measurements suppressed increased over time, but did not differ statistically between groups (Pre: 28.6% and 15.5%, post: 70.8% and 50.0%, palliative and no-show groups respectively). Median rates of ED visits and hospitalizations were low and were not impacted by palliative care. Rates of primary care visit attendance remained stable in the palliative group (4.6/year) but declined in the no-show group (3.5/year), p<0.05. Retention in care improved significantly following the palliative intervention (Palliative: 85.4% to 96.1%, No-show: 94.4% to 82.5%), and at high and low palliative engagement, suggesting a threshold effect of the intervention.
CONCLUSION: Outpatient early palliative care is a promising intervention that might impact retention in HIV care.
BACKGROUND: Physicians and nurses play vital roles in addressing palliative care (PC) needs of people living with HIV/AIDS (PLWHA). The healthcare workers' (HCWs) experiences determine the success of palliative care delivery. There is paucity of data on PC for PLWHA. For this reason, we assessed the knowledge, attitude and practice of PC for PLWHA and associated factors among health care professionals.
METHODS: We conducted a cross-sectional descriptive study among HCWs in public health facilities in the Federal Capital Territory, Nigeria between February and May, 2017. Multistage sampling technique with proportionate-to-size allocation was used to determine facility sample size and HCWs per professional discipline. Data were collected with questionnaires adapted from Palliative Care Quiz for Nursing, Frommelt Attitude toward Care of the Dying and practical questions adapted from PC standard guidelines. Participants' knowledge, attitude and practice were assessed by awarding one (1) point for each correct answer; incorrect or "not sure" answers took a zero (0) score. Correct responses were summed up to get a total score for each participant. Descriptive statistics was done to describe frequencies and proportions displayed on tables. Linear regression was done to determine factors associated with HCW's knowledge, attitude and practice of PC for PLWHA.
RESULT: With a 100% response rate, the mean age of the 348 participants was 37.5 years (SD: ±8.9), 201 (57.8%) were female, 222 (63.8) were nurses and 230 (66.0%) had a work experience of 10 years or less. Majority of the participants, 310 (89.1%) agreed that palliative care focuses on the relief and prevention of suffering and 319 (91.7%) believe that PLWHA required palliative care. Misconceptions about palliative care include "palliative care is disease-oriented and not person oriented", 252 (72.6%) believed; "palliative care is concerned with prolongation of life", 279 (80.6%); and "use of placebos is appropriate in the treatment of some types of pain", 252 (72.6%). Among the participants, 52% disagreed that "palliative care should be given only for dying PLWHA" while only 18 (5.2%) were right on "family should be involved in the physical care of the dying PLWHA". Majority of the participants, 292 (84.1%) initiated palliative care discussion during patients' diagnosis while 290 (83.6%) informed terminally ill patients about their diagnosis. Regarding psychological issues, 22 (6.3%) participants hid the truth from the patients while 196 (56.3%) provided emotional support to the patients. Morphine 240 (69.0%) and Pentazocine 194 (55.7%) were the most commonly used drugs for treatment of severe pain by participants across all centres.
CONCLUSION: In-service training and undergraduate training on palliative care were associated with knowledge and practice of palliative care for people living with HIV/AIDS. We recommended continuous quality in-service training and education on palliative care for HCWs. While we ensure voluntariness of participation and other ethical principles, the high response rate could be as a result of more motivated health worker than the norm. The results are unlikely to be representative of doctors and nurses in primary health care centres.
Background: Timely identification of people who are at risk of dying is an important first component of end-of-life care. Clinicians often fail to identify such patients, thus trigger tools have been developed to assist in this process. We aimed to evaluate the performance of a identification tool (based on the Gold Standards Framework Prognostic Indicator Guidance) to predict death at 12 months in a population of hospitalised patients in South Africa.
Methods: Patients admitted to the acute medical services in two public hospitals in Cape Town, South Africa were enrolled in a prospective observational study. Demographic data were collected from patients and patient notes. Patients were assessed within two days of admission by two trained clinicians who were not the primary care givers, using the identification tool. Outcome mortality data were obtained from patient folders, the hospital electronic patient management system and the Western Cape Provincial death registry which links a unique patient identification number with national death certificate records and system wide electronic records.
Results: 822 patients (median age of 52 years), admitted with a variety of medical conditions were assessed during their admission. 22% of the cohort were HIV-infected. 218 patients were identified using the screening tool as being in the last year of their lives. Mortality in this group was 56% at 12 months, compared with 7% for those not meeting any criteria. The specific indicator component of the tool performed best in predicting death in both HIV-infected and HIV-uninfected patients, with a sensitivity of 74% (68–81%), specificity of 85% (83–88%), a positive predictive value of 56% (49–63%) and a negative predictive value of 93% (91–95%). The hazard ratio of 12-month mortality for those identified vs not was 11.52 (7.87–16.9, p < 0.001).
Conclusions: The identification tool is suitable for use in hospitals in low-middle income country setting that have both a high communicable and non-communicable disease burden amongst young patients, the majority under age 60.
Background: Liberia faces a critical shortage of palliative care services, particularly for persons with advanced-stage HIV/AIDS, tuberculosis, diabetes, and cancers. Access to healthcare services is especially limited in rural areas, along with a lack of supportive social and economic resources. Home of Dignity (HoD) Health Center was established in 2013 in Yarbah's Town to fill a last-option palliative care gap. The mission emphasizes patient wellbeing and worth. HoD integrates health, agriculture, and education on-site for immediate medical needs, broader sustainable development, and reducing disease-associated stigma in local communities.
Objective: We aimed to describe the Center's integrated approach and conduct a descriptive analysis of the HoD patient population.
Methods: We reviewed patient characteristics (sex, age distribution, mobility status, and CD4 count on arrival) and outcomes (survival rate and community reintegration) for patients with HIV seeking care at the Center between 2013-2017.
Findings: Of 182 patients (ages 3 months-50 years), over half arrived to the facility bedridden and over 82% had CD4 counts between <100-350. Of the 182 patients, 66% survived, 27% died, and 7% were lost to follow-up. Of surviving patients, 90% were successfully reintegrated into their communities. The clinic also served over 365 chronically ill patients that had been rejected by other health providers during the 2014-2015 Ebola outbreak.
Conclusions: The Center is providing last-option palliative care services in the country. As a trusted healthcare center, patients also seek care for acute conditions, resulting in unanticipated resource demands. HoD's experience underscores the need for development of training programs for medical professionals, supply chains, community outreach, and resourcing channels to ensure adequate and sustainable service provision for hospice and palliative care services and reduce stigma in the country. There is an urgent need to invest in holistic palliative and overall healthcare services in Liberia.
Context: The psychosocial and spiritual needs of individuals with life-limiting conditions in low- or middle-income countries have not been well described. Understanding these needs is important to providing holistic palliative care.
Aim: This study aims to better understand the psychosocial and spiritual needs and supports of patients with advanced, incurable illness in Bangladesh.
Subjects and Methods: Individuals with advanced incurable illnesses (advanced cancer and HIV/AIDS) from a wide geographical distribution across Bangladesh were interviewed about their health status, emotional and spiritual experiences with their illness, coping and support systems, and greatest needs and fears.
Results: We interviewed 221 individuals with incurable cancer (82%) or HIV/AIDS (18%). Self-reported health status was poor or very poor for 48%, and 44% reported feeling unhappy all of the time. The majority (61%) rated their current level of unhappiness as 10/10. Spouses (50%), children (15%), and parents (13%) were the most common caregivers. Money and medical care were equally the most common needs (46%). Participants' greatest fears were for the future of their children (38%), being in pain (29%), and dying (28%).
Conclusions: There is a significant burden of psychosocial and spiritual concerns among patients with advanced incurable illness in Bangladesh, with sadness being very frequent and of high intensity. Family and friends provide significant emotional and practical support to patients who are seriously ill, but very few patients access any professional support for these concerns.
AIDS has devastated communities across southern Africa, leaving many children orphaned. Grandmothers are considered ideal caregivers because of cultural expectations of intergenerational care, and because they have not been decimated by AIDS to the same extent as younger adults. However, these grandmothers, who currently carry the majority of the burden of care for AIDS orphans, are themselves aging and dying. I argue here that in Lesotho, the caregiving demanded of grandmothers late into their lives not only alters kin relations for the living but has increasingly made a “good” death unachievable for elderly caregivers.
OBJECTIVES: To understand the meaning attributed by the nurse to the management of nursing care to the person hospitalized due to clinical complications caused by AIDS; to analyze actions related to palliative care; and to construct a theoretical matrix regarding the management of nursing care.
METHOD: Qualitative, exploratory research, guided by the Grounded Theory. Seven nurses and ten nursing technicians were interviewed between May and September 2015, in a university hospital, located in Rio de Janeiro State, Brazil.
RESULTS: Five categories that covered the profile of the hospitalized person, palliative care, intervening conditions for care management, the need for professional qualification, and other aspects to better organize and manage care, including conflict management arose.
FINAL CONSIDERATIONS: The theoretical matrix values the quality of life, the need to understand the flow of care to avoid readmissions and not adherence to medications, requiring new research in the area, such as implementation.
BACKGROUND: Considerable gains are being made in data-driven efforts to advance quality improvement in health care. However, organizations providing hospice-oriented palliative care for structurally vulnerable persons with terminal illnesses may not have the enabling data infrastructure or framework to derive such benefits.
METHODS: We conducted a pilot cross-sectional qualitative study involving a convenience sample of hospice organizations across North America providing palliative care services for structurally vulnerable patients. Through semistructured interviews, we surveyed organizations on the types of data collected, the information systems used, and the challenges they faced.
RESULTS: We contacted 13 organizations across North America and interviewed 9. All organizations served structurally vulnerable populations, including the homeless and vulnerably housed, socially isolated, and HIV-positive patients. Common examples of collected data included the number of referrals, the number of admissions, length of stay, and diagnosis. More than half of the organizations (n = 5) used an electronic medical record, although none of the record systems were specifically designed for palliative care. All (n = 9) the organizations used the built-in reporting capacity of their information management systems and more than half (n = 6) augmented this capacity with chart reviews.
DISCUSSION: A number of themes emerged from our discussions. Present data collection is heterogeneous, and storage of these data is highly fragmented within and across organizations. Funding appeared to be a key enabler of more robust data collection and use. Future work should address these gaps and examine opportunities for innovative ways of analysis and reporting to improve care for structurally vulnerable populations.
There is a significant gap in the provision of palliative care for children living with HIV (CLHIV) in Indonesia. While Indonesia has one of the highest rates of HIV infection amongst children in Asia, there is limited availability and access to palliative care services for CLHIV, especially for those living in rural areas. This paper highlights the need to scale up the provision of pediatric palliative care services for CLHIV in the country through the integration of palliative care into existing HIV care. This integration would not only increase the accessibility of palliative care for CLHIV, but also improve the quality of HIV care by addressing and meeting individual needs, enhancing retention in HIV care and improving quality of life amongst CLHIV. An effective integration of palliative care may be achieved by adopting World Health Organization’s Public Health Strategy for Palliative Care, with adaptations made to accommodate the unique geographical and cultural contexts of Indonesia.