Elsevier

The Lancet

Volume 354, Issue 9186, 9 October 1999, Pages 1287-1291
The Lancet

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Continuum of palliative care: lessons from caring for children infected with HIV-1

https://doi.org/10.1016/S0140-6736(98)12487-XGet rights and content

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Long-term survivors of perinatal HIV-1 infection

HIV-1 infection is an unpredictable disease in infants, children, and adolescents with multisystem involvement resulting in a chronic and very complex illness.10 It is a multigeneration disease because other family members, especially parents, are also infected and have varying symptoms and substantial psychosocial problems.11 At the onset of the HIV-1 epidemic, most perinatally infected infants died before they reached 4 years, but with improvements in treatment, prophylaxis for opportunistic

Guiding principles of palliative care

Palliative care for children with chronic, multisystem, and life-limiting disease, such as AIDS, should ensure the child's comfort and maximum function through the course of their illness.17 Children need to know about their disease, which raises the difficult issue of disclosure of diagnosis. Studies on disclosure of diagnosis have been based on children with cancer and have shown that, in general, disclosure should occur sometime after age 6 years and that this adds to the quality of life for

Critical components of end-of-life care

At some point in the care of children with AIDS, the issue of medical futility in continuing restorative care is raised by either the child, family, or health-care worker. A discussion with the family about the medical status and prognosis needs to be initiated at this point, including an age-appropriate discussion of death and dying with the child. The components and meaning of a “do not resuscitate” (DNR) order should be explained and a joint plan developed to recognise the need for control

Limitations in providing palliative care

Barriers to the provision of palliative and hospice care to these children exist. Perinatal HIV-1 infection is a family disease. Guilt, denial of disease progression, and resistance to the use of opioids and hospice services are often seen. The course of HIV-1 infection is unpredictable and physicians have difficulty knowing when the child is truly dying. Clinicians who are preoccupied with the management of HIV-1 infection sometimes neglect adverse symptoms and offer pain and symptom

Quality of life

The quality of life of patients should be the main concern of any physician and the driving force throug out chronic illness. Quality of life, defined in large part by the patient and their family, includes the ability of the child to carry on the activities of daily living with the minimum discomfort while receiving treatment for their illness. Pain should be aggressively managed and regularly assessed. The physician needs to form close alliances with other health-care providers for children

Meeting our obligations

Based on my experience in caring for HIV-1-infected children for the past 18 years, I have come to recognise that there are two essential qualities that we must possess if we are to meet our obligation to care and relieve suffering. The first quality is humility—the willingness to listen to others, including our patients and their families, and to avoid arrogance, which is the greatest threat to the wellbeing of our patients and our own personal and professional growth. The second quality is

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