End of Life in HIV‐infected Children Who Died in Hospital

Abstract

The aim of this study was to evaluate terminal care among hospitalized children who died of HIV/AIDS. The design was a retrospective chart review of the terminal hospitalization. The setting was a public, secondary and tertiary children's hospital in Cape Town, South Africa (SA). The patients included a consecutive series of in-patient deaths from HIV-related causes. The main outcome measures included: documentation of do not resuscitate (DNR) orders and comfort care plans, intensity of diagnostic and therapeutic interventions in the last 24 hours of life, and presence of pain and distress in last 48 hours of life. The results are based on the review of 165 out of 167 in-patient deaths. Of those, 79% of patients died in general wards. Median age and length of stay were 4 months and 6 days respectively. A total of 84% of patients had a DNR order. DNR orders appeared simultaneously in only 41% of medical and nursing notes. Only 44% of patients had a comfort care plan. Pain and distress in the last 48 hours was documented in 55% of patients who died in the general wards. Respiratory symptomatology and painful skin conditions accounted for most discomfort. Half (36/72) the patients with pain and distress, including 16 with a comfort care plan, received no analgesia. Conclusions drawn found that, despite clinical uncertainty, doctors made tough end of life decisions that included DNR orders and comfort care plans. The lower rate of comfort care plans suggests doctors had difficulty making the transition from curative to palliative care. Many comfort care plans were incoherent and included interventions unlikely to promote patients' comfort. In light of the HIV/AIDS pandemic in SA, reforms are needed to integrate palliative care within mainstream hospital medicine. However, without adequate human resources including trained interpreters, doctors and nurses will struggle to deliver optimal terminal care in acute hospitals.

Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence

“…Optimal terminal HIV/AIDS care requires a primary focus on palliation, and palliation requires clear and precise terminology to avoid the inconsistency found in clinical instruction for HIV/AIDS terminal care. 41 The heterogeneous clinical studies included in this review reflect the diverse settings, clinical management strategies, and disease stages relevant to palliative care in HIV disease. A lack of detailed service description for many of the studies meant it was not possible to identify the effective elements of the service that might be replicated, although exceptions were found.…”

“…We attempted to minimise the bias resulting from terminology by including a broad range of common terms in the search strategy-for example, palliative care approaches being termed comfort care. 41 This review also was guided by the findings from a recent evaluation of systematic reviews of palliative care services. 47 Similarly, the grading criteria selected were purposefully broad and inclusive, allowing a full body of evidence rather than being narrow (and RCT focused).…”

“…56 The historical distinction between early/late stage disease that placed palliative care as solely terminal is inappropriate in the light of the clinical evidence that patients need pain and symptom management (and psychosocial care) throughout the disease trajectory. 5 6 Nursing homes, 57 58 brain impairment units, 59 hospices, 60 hospital palliative care teams, 61 62 prison hospice, 63 and hospital paediatric wards 41 face challenges of providing both curative and palliative care for people with HIV/AIDS. Therefore, clinical need throughout the disease trajectory and the range of settings in which patient care is delivered speaks of the need for specialist education and the inclusion of palliative care expertise into the multiprofessional care team.…”

Care and Treatment of HIV-Infected Children in Africa

“…Among the most common causes of distress during the last 48 hours of life are respiratory distress (49%), oral and esophageal candidiasis (37%) and painful skin conditions (32%). 89 Uganda is the first and only African country where palliative home-based care (including provision of free morphine) is part of the national health program. 90 There has been little research into psychosocial support for African HIV-infected children and their families.…”

Oral health needs of HIV/AIDS orphans in Gauteng, South Africa

“…The large numbers of HIV-infected patients and the lack of available resources for their care when they develop secondary complications, could contribute to patients dying much sooner than patients in developed countries. This speculation is substantiated by a study conducted in respect of bed charts of South African hospitalised paediatric HIV/AIDS patients, in which it was found that instructions not to resuscitate (DNR) appeared on 84% of the bed charts (Henley, 2002).…”