GAZZARD: My personal feeling is that there is sometimes too much emphasis on pain relief and too little emphasis on symptomatic remedies that can improve the patient's quality of life. Thus an obvious example is oral/oesophageal thrush which is a very painful and unpleasant way to die. Provision of effective remedies against this seems to me to be a priority in palliative care. Similarly diarrhoea is a very distressing symptom which can often be alleviated by opiates which need to be used freely in this situation.
VENTER: Dermatologic problems are often dismissed, but can cause significant psychological stresses and negatively affect self-image. It is rare for a patient with more advanced disease not to have symptoms, but medical staff often dismiss or under-treat common skin and scalp conditions.
In South Africa, a recent audit showed that HIV-positive status was one of the strongest risk factors for suicide. Anecdotal evidence from psychiatrist friends of mine is that they have seen a steady increase in depression and psychosis, with a disproportionate number of these being positive. The psychological stress of the condition should not be underestimated. Medical staff sometimes do not appreciate the public perception that this is a sexually transmitted disease (we see it presented as pneumonia, TB, meningitis, etc hardly ever as a conventional STD) with significant stigma and shame attached.
Substance use problems are less common than one would think alcohol is a problem, as disinhibition leads to risk taking behaviour. The number of injecting drug users is still relatively small as a proportion of patients with HIV in South Africa.
Among children and adolescents, precious little research has been done on how to tell children that they or their parent is HIV positive. We've had several cases of a mother dying and a bewildered dad or grandparent pitching up wanting to know what is wrong with the child!
Care for the caregiver is all lip-service and no action. The burn-out rate amongst the nurses working with HIV positive patients is high in the public service. Everyone says we need burnout prevention, no-one does it. I think compulsory debriefing sessions should be held weekly in work hours institutionalise it as part of the working week.
GREEN: Conditions such as nausea are often not viewed as 'pain'. Especially for this, we need to press for access to marijuana (even if this is going to be a long battle!) Other issues include: feeding (nutrition, requests for unusual foods); dementia; palliative care of children; patients without families (or money); suicidal intentions.
Don't let's forget that grief and bereavement can affect the patient as much as the family or other caregivers. Loss of independence, of mobility, of opportunity to bring up the children, and many other losses can be very unempowering for those dying young. We should note that there have been few if any other epidemics which have killed people so early in their lives, just when hopes are beginning to be achieved. Often forgotten are legal issues, such as making wills (unusual for young people), powers of attorney, directions for bringing up children, living wills. Also non-biologic family (often significant others) may be excluded from grieving processes, and even from access to the partner during the last days.
Again, because of youth, many caregivers have little experience or knowledge of their role. Parents tend to treat the patient as when he or she was still a child, e.g. attempting to force them to eat, while the patient finds it difficult to refuse parents wishes. Patient-clinician communication is terrible in this country (Indonesia); which is in many ways still feudal, and in which doctors are not seen as someone to communicate with, rather to accept often impossible and ill-understood instructions from. End of life issues are rarely raised; living wills are most unusual; discussions around 'heroic' interventions are not held.
Although the theory is that healthcare workers should not become emotionally involved, this is often not realistic. Yet few if any are provided with adequate bereavement counselling. As Thomas Eversole puts it, new for many therapists is the role of accompanying their clients to the ends of their lives, being one of few if any significant friends at the clients deathbed. (in Mark G Winiarski, ed, HIV Mental Health for the 21st Century. New York University Press, 1997 - reviewed at http://www.aegis.com/pubs/books/1998/BK980813.html)