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.
Les personnes vivant avec le VIH sont considérées comme « âgées » dès l’âge de 50 ans en raison du vieillissement physique prématuré qu’elles subissent. Compte tenu de l’âgisme qui prévaut dans les sociétés occidentales, on peut se demander comment les personnes vivant avec le VIH de 50 ans et plus (PVVIH50+) perçoivent leur vieillissement physique. S’appuyant sur des entrevues réalisées avec 38 PVVIH50+, cet article se propose d’explorer leur expérience du vieillissement à travers trois dimensions, à savoir le vieillissement physique, le sentiment de vieillir et le rapport au vieillissement. L’analyse des données révèle que le vieillissement revêt à la fois un caractère négatif et positif pour les PVVIH50+. Si, comme la population générale, elles tentent de s’en distancier et peinent parfois à l’accepter, le parcours relié au VIH peut en revanche teinter le vieillissement d’une valeur positive, puisque vieillir signifie être encore en vie.
Providing care to cancer patients in resource-poor settings often demands complex trade-offs regarding resource allocation. It is estimated that over 60% of all cancer deaths worldwide occur in low- and middle-income countries, where channels to care and appropriate symptom management interventions are overstressed or obsolete. Concepts of distributive justice underlie much of global health policy. As appetites for expanding global palliative care services increase, so do questions of fair and culturally appropriate distribution. The ethical principle of distributive justice underpins questions of resource allocation at a fundamental level. One of the most challenging concepts for health care workers immersing in cross-cultural contexts is the idea that ethics are somewhat malleable; they shape and are shaped by the unique sociopolitical, economic, intracultural, and power dynamics of a particular setting. In this article, we use the case of a young woman diagnosed with terminal cancer in an underserved community in rural Uganda to illustrate the conflicting concepts of fairness, which dictate distribution of scarce resources in low- and middle-income countries. Notions of distributive justice vary across cultural, societal, and even individual norms, with some definitions allowing for discrimination based on merit or need. Resource allocation in the absence of cultural humility or a genuine willingness to understand decision-making priorities in a given culture can contribute to inequity and may have harmful consequences.
Context: Nursing care on the spiritual aspect is focusing on the patients' acceptance of their diseases; thus, people living with HIV (PLWH) are able to accept their diseases and are able to take the lesson. PLWH do not only deal with the condition of the disease but also by discriminative social stigma.
Aim: The aim of this study was to explore, describe, and interpret the experience of spirituality to self-acceptance in patients with HIV/AIDS.
Research Methodology: This research is a qualitative approach by descriptive phenomenology of participants involving as many as 10 people, consisting of 5 men and 5 women. All paticipants are muslim with the education level range from junior high school to university. The ages ranged from 29 to 46 years.
Results: This research identified the two themes which are: (1) being able to take the lesson from their diseases, and (2) self acceptance as people living with HIV-AIDS. There were 10 participants participated in this study. A method of in-depth interviews and observation is a help of data collection. Data analysis used was Creswell method.
Conclusion: Results of the study suggested the patients to get motivated and to develop aspects of spirituality so that it can help to ease in the process of self acceptance, asgetting closer to God through pray, read the Quran, fasting, etc.
Advanced care planning (ACP) and end-of-life discussions are especially difficult among persons living with human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) as a result of patients' lack of trust in family and providers, HIV-related stigma, misunderstood spirituality concerns, social isolation, and other factors. Previous research has demonstrated that relatively few persons living with HIV/AIDS engage in ACP, yet developing culturally sensitive methods of ACP is imperative. One such method is digital storytelling, a video narrative that can be used to share ideas or aspects of a life story.
The aim of this study was to examine perspectives from providers and persons living with HIV/AIDS about the acceptability, benefits, and technological challenges of and barriers to using digital storytelling for ACP. A qualitative descriptive design was employed using focus groups of 21 participants in South Central Appalachia. Transcribed data were analyzed using qualitative content analysis. Findings revealed patient and provider ideas about ACP, factors related to digital story acceptability, stigma against persons living with HIV/AIDS, and concern for the legality of ACPs expressed in digital story format. Future research should focus on the process of creating digital stories as an intervention to improve ACP in this unique aggregate.
Advanced care planning (ACP) and end-of-life discussions are especially difficult among persons living with human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) as a result of patients' lack of trust in family and providers, HIV-related stigma, misunderstood spirituality concerns, social isolation, and other factors. Previous research has demonstrated that relatively few persons living with HIV/AIDS engage in ACP, yet developing culturally sensitive methods of ACP is imperative. One such method is digital storytelling, a video narrative that can be used to share ideas or aspects of a life story. The aim of this study was to examine perspectives from providers and persons living with HIV/AIDS about the acceptability, benefits, and technological challenges of and barriers to using digital storytelling for ACP. A qualitative descriptive design was employed using focus groups of 21 participants in South Central Appalachia. Transcribed data were analyzed using qualitative content analysis. Findings revealed patient and provider ideas about ACP, factors related to digital story acceptability, stigma against persons living with HIV/AIDS, and concern for the legality of ACPs expressed in digital story format. Future research should focus on the process of creating digital stories as an intervention to improve ACP in this unique aggregate.
OBJECTIVES: The unmet palliative care need is intensified in resource-limited countries where there is inequitable access to healthcare and adolescents and young adults (AYA) fall between the cracks of paediatric and adult services. We aimed to examine palliative care for AYA with cancer and/or HIV in South Africa.
DESIGN: Individual and small group interviews using process mapping.
SETTING: Data were collected between November 2016 and March 2017 with staff from government hospitals, hospices and clinics from three provinces of South Africa.
PARTICIPANTS: Health and social care professionals (n=30) (eg, physicians, nurses, social workers, psychologists) from KwaZulu-Natal, Western Cape and Gauteng provinces.
METHODS: In this qualitative situational analysis study, participants were recruited to interviews and process mapping used to try and identify palliative care pathways of AYA with palliative care needs. We developed a thematic framework using a deductive approach to analyse the interview data.
RESULTS: Palliative care pathways were not easily identifiable, ambiguous and varied and participants reported on their experiences and perceptions of service provision. Participants expressed that resource challenges limited the service provision. A need for nurse prescribing of pain relief at community level was mentioned as AYA are reluctant to use hospitals and clinics. Lack of (1) palliative care education among professionals, (2) public awareness and (3) adolescent-specific care posed a challenge to service provision.
CONCLUSIONS: The changing burden of HIV and increase in cancer prevalence calls for integration of palliative care in mainstream health services. Despite good policies, the pragmatic aspect of training professionals will influence a change in practice. The main task will be to absorb palliative care philosophy and practice at all levels of care to avoid overburdening the care system and to integrate it in community care programmes.
Blanche Moncey est une pianiste qui voue sa vie à la musique. Quand elle découvre qu'elle est atteinte du sida, elle décide d'écrire un journal qu'elle tiendra jusqu'à sa mort. Elle se retourne sur son passé d'artiste et de femme, observe le monde qui l'entoure, l'évolution de sa maladie et réfléchit sur la musique qu'elle a servi avec passion.
CONTEXT: No prospective studies address disease-specific Advance Care Planning (ACP) for adults living with HIV/AIDS.
OBJECTIVE: To examine the efficacy of FAmily-CEntered (FACE) ACP in increasing advance care planning and advance directive documentation in the medical record.
METHODS: Longitudinal, two-arm, randomized controlled trial with intent-to-treat design recruited from 5 hospital-based outpatient HIV clinics in Washington, DC. Adults living with HIV and their surrogate decision makers (N=233 dyads) were randomized to either an intensive facilitated two-session FACE ACP (Next Steps: Respecting Choices goals of care conversation and Five Wishes advance directive) or Healthy Living Control (conversations about developmental/relationship history and nutrition).
RESULTS: Patients (n=223) mean age: 51 years, 56% male, 86% African-American. One hundred ninety-nine dyads participated in the intervention. At baseline, only 13% of patients had an advance directive. Three months post-intervention, this increased to 59% for the FACE ACP group versus 17% in the control group (p<0.0001). Controlling for race, the odds of having an advance directive in the medical record in the FACE ACP group was approximately 7 times greater than controls (Adjusted Odds Ratio=6.58, 95% C.I: 3.21-13.51, p<0.0001). Among African-Americans randomized to FACE, 58% had completed/documented advance directives versus 20% of controls (p<0.0001).
CONCLUSIONS: The FACE ACP intervention significantly improved ACP completion and advance directive documentation in the medical record among both African-American and non-African-American adults living with HIV in Washington, D.C., providing health equity in ACP which can inform best practices.
BACKGROUND: The U.S. National Institute of Allergies and Infectious Diseases (NIAID) and the National Institute of Mental Health (NIMH) have a new research priority: inclusion of terminally ill persons living with HIV (PLWHIV) in HIV cure-related research. For example, the Last Gift is a clinical research study at the University of California San Diego (UCSD) for PLWHIV who have a terminal illness, with a prognosis of less than 6 months.
DISCUSSION: As end-of-life (EOL) HIV cure research is relatively new, the scientific community has a timely opportunity to examine the related ethical challenges. Following an extensive review of the EOL and HIV cure research ethics literature, combined with deliberation from various stakeholders (biomedical researchers, PLWHIV, bioethicists, and socio-behavioral scientists) and our experience with the Last Gift study to date, we outline considerations to ensure that such research with terminally ill PLWHIV remains ethical, focusing on five topics: 1) protecting autonomy through informed consent, 2) avoiding exploitation and fostering altruism, 3) maintaining a favorable benefits/risks balance, 4) safeguarding against vulnerability through patient-participant centeredness, and 5) ensuring the acceptance of next-of-kin/loved ones and community stakeholders.
CONCLUSION: EOL HIV cure-related research can be performed ethically and effectively by anticipating key issues that may arise. While not unique to the fields of EOL or HIV cure-related research, the considerations highlighted can help us support a new research approach. We must honor the lives of PLWHIV whose involvement in research can provide the knowledge needed to achieve the dream of making HIV infection curable.
BACKGROUND: The number of adults with heart failure (HF) and HIV infection is increasing. These patients may benefit from palliative care (PC).
OBJECTIVES: Determine the association between HIV infection, other HIV characteristics, and PC among hospitalized patients with HF in the Veterans Health Administration (VHA).
DESIGN: Nested case-control study of patients with HF hospitalized from 2003 to 2015 and enrolled in the Veterans Aging Cohort Study.
SETTING/PATIENTS: Two hundred and ten hospitalized patients with HF who received PC matched to 1042 patients with HF who did not receive PC, by age, discharge date, and left ventricular ejection fraction.
MEASUREMENTS: Palliative care use was the primary outcome. Independent variables included HIV infection identified by International Classification of Diseases Ninth Revision code and further characterized as the primary diagnosis for hospitalization, unsuppressed HIV-1 RNA, CD4 counts <200 cells/mm3, and other covariates. We examined associations between independent variables and PC using conditional logistic regression.
RESULTS: The sample was 99% male, mean age was 64 years (standard deviation ±10), 54% of cases and 59% of controls were black, and 30% of cases and 31% of controls were HIV-infected. In adjusted models, HIV as the primary diagnosis for hospitalization (odds ratio [OR]: 3.69, 95% confidence interval [CI]: 1.30-10.52), unsuppressed HIV-1 RNA (OR: 2.62, 95% CI: 1.31-5.24), and CD4 counts <200 cells/mm3 (OR: 3.47; 1.78-6.77), but not HIV infection (OR: 0.79, 95% CI: 0.55-1.13), were associated with PC.
CONCLUSIONS: HIV characteristics indicative of severe disease are associated with PC for hospitalized VHA patients with HF. Increasing access to PC for patients with HF and HIV is warranted.
La mise en oeuvre de soins dits palliatifs au cours des affections non cancéreuses correspond à un moment particulier de l'évolution d'une maladie potentiellement mortelle. Cette phase palliative est souvent moins évidente que dans les maladies cancéreuses.
Les thérapeutiques visent prioritairement à ralentir l'évolution de la maladie et à préserver la meilleure qualité de vie possible du patient.
La prise en charge du sida est complexe du fait du contexte de la maladie, des symptômes spécifiques en phases palliative et terminale, et des découvertes de nouveaux traitements antiviraux. L'évolution par aggravations successives et inéluctables de la sclérose latérale amyotrophique nécessite une collaboration et une coordination des différents acteurs de la prise en charge autour du patient dès le début. Dans les situations extrêmes, lorsque les symptômes sont incontrôlables, l'indication de faire dormir les malades peut être posée.