Introduction to the role of palliative care in the management of HIV and AIDS.
Summary
This article is planned as the first of two, exploring aspects of palliative care for people with HIV and AIDS. It has been written by Julian Meldrum with thanks to advisory panel members Chris W Green (Indonesia), Paul Roux, Francois Venter (South Africa) and Brian Gazzard (UK) for their comments.
Some countries, notably Uganda, have made great efforts to promote palliative care as part of the response to HIV and AIDS, and have well-defined national strategies. The Southern African HIV Clinicians' Society has commissioned and published guidelines for palliative care. Further professional initiatives are under way in South Africa. However, many other countries may have further to go before there is even a clear sense of what should be done.
'Palliative care' is often equated with the idea of hospice and care at the end of life, and many palliative care specialists do work in that area. However, current definitions of palliative care tend to be much broader. The implication is that virtually all health care providers working with people with HIV and AIDS need to practice palliative care to some extent.
Pain relief, similarly, is just one aspect of palliative care. However, it is an important aspect and in many settings is not adequately addressed for reasons which can include patients' expectations as much as lack of training and resources for service providers or fears about the use of opiates.
Addressing issues that come under the banner of 'palliative care' is not a distraction from providing treatment, because the prime duty of a physician in the face of illness is to deal with people's suffering and treatment that does not alleviate people's suffering won't be acceptable or sustainable.
Observations on the definition
ROUX: I agree with this definition of palliative care. It implies that every HIV/AIDS health care worker must be aware of the palliative content of whatever care he/she is delivering. The difficulty is that where resources are constrained, the human resource is also limited. Palliative care must address all the needs listed in the definition. This takes time, not least because the delivery of proper care depends on building a strong relationship. Consequently, the difficulty of delivering good palliative care in resource-poor regions may be as great as that of providing life-saving interventions.
In my view, a constraint on resources should be seen as a challenge to patient advocacy and a spur to individual effort to find the means to improve access to care in general. I see the need for palliative care and access to life-saving intervention as being a continuum and therefore of equal priority. To choose one over the other is not realistic - one needs both modalities, regardless of how well one is resourced. I would add that when one accepts rationing as an answer to scarce resources, one has capitulated to the status quo.
Many HIV-positive people living in resource-poor regions have never encountered the kind of health care (including palliative care) they need. If continuity of care and comprehensive care are not explained to prospective patients, they may well not adhere to care plans or attend appointments. Ultimately, the allocation of state resources requires political will. If enough resources are to be secured and sustained, enough people living with HIV need to discover what their health care needs are and then to lay political claim to these needs.
GAZZARD: Palliation is central to the management of all ill patients and HIV is no different and indeed no more important than any other disease [in this respect] and it is the prime duty of the physician to relieve suffering.
VENTER: I think this definition is increasingly being accepted in South Africa. I think doctors are often guilty of paying way too much time to pointless heroics in terms of prolonging life (not just AIDS, all things) and way too little time to symptom control.
GREEN: In general I agree. However, I think we do need to put terminal care, and grief and bereavement into the continuum, together with palliative care. We also need to identify the role of hospice. Death of younger people is rarely dignified, and death from AIDS especially sothere's no quietly slipping away. But preservation of dignity and understanding the feelings of loss (e.g. loss of control, loss of independence) do need special consideration.
There are definitely situations, at least in the developing world, in which healthcare workers may have to apply triage. There is a tendency to send dying patients home because 'there is nothing we can do for them.' But hospice can be based upon lay caregivers, with limited involvement by doctors.
There is a tendency to focus on other issues such as treatment of OIs, and now antiretroviral therapy (ART). We do need to recognise that ART can be 'Lazarus therapy.' But there is a risk that it will divert attention from palliative care, as this becomes less frequently required. Modern doctors often feel unempowered if they are unable to prevent death, especially in younger people, and thus avoid this issue - at least this is the impression I have in Indonesia. This is compounded by the difficulties in accessing effective pain relief, and (I suspect) lack of training in end-of-life issues.
How do we diagnose 'dying'? How do we communicate that diagnosis to the patient and the family? Terminal AIDS is vry frequently a 'roller-coaster', with family anticipating death during the night, only to find the patient demanding a large breakfast next morning. Conversely, such 'recoveries' are often followed by relapse and death. This is extremely stressful for carers.
What is palliative care?
Palliative care is an approach to treatment that is centred on the experience of the individual and family suffering directly and indirectly from an illness, which addresses their symptoms and concerns directly, and which is complementary to and does not exclude continuing efforts to treat the causes of that illness.
A definition put forwards by the US Health Resources and Services Administration (HRSA), in a manual on palliative and supportive care for people with AIDS and HIV (see resources, at the end of this article), is as follows:
Palliative care is patient- and family-centered care. It optimizes quality of life by active anticipation, prevention, and treatment of suffering. It emphasizes use of an interdisciplinary team approach throughout the continuum of illness, placing critical importance on the building of respectful and trusting relationships. Palliative care addresses physical, intellectual, emotional, social, and spiritual needs. It facilitates patient autonomy, access to information, and choice.
This is different to the way palliative care is sometimes understood, much more narrowly, as being limited to pain relief and making people comfortable at the end of their lives. However, it clearly includes pain relief and recognises that when someone dies, how they die has a deep and lasting effect on the people around them - for example, in shaping their ability to deal with their own illnesses and other problems.
Palliative care has developed and is still growing as a medical specialty, with a longer tradition in some countries than in others. However, it should be obvious from the definition given here that every clinician, nurse or other carer working in HIV and AIDS care - especially where resources are limited - has to provide palliative care to a greater or lesser extent.
How well this is done will impact on the ability of a health care team to deliver other services, as treatment that does not deal with the problems that are seen by the patient as being their most serious will not inspire confidence in the expertise of that team.
Pain control and pain relief
Effective pain control has been championed by the hospice movement and is an advocacy priority, for example, for the international palliative care initiative of the Diana, Princess of Wales Memorial Fund based in the UK (see resources, below).
The basic principle, endorsed by the WHO, is the use of an 'analgesic ladder' in which the strength of painkilling drugs is matched to the nature, intensity and persistence of the pain reported. (This is very well described in the US manual already mentioned, in which the WHO chart and lists of relevant drugs and their starting doses are provided online as PDF files.)
In many countries, there are legal issues which may limit access to effective pain relief, especially when this requires the use of the more powerful opiates. However, even when these are resolved there are often practical and cultural barriers to be overcome to ensure effective access to treatment.
Observations on pain relief
ROUX: Access to proper pain relief in South Africa is limited more by a lack of training in palliative care than by legislation. In particular, there is a lack of knowledge and skill regarding the assessment and management of pain in children. Nurse practitioners would, as things stand, have limited access to the analgesic ladder. There are lingering and inappropriate inhibitions to the use of morphine for pain control. There are a number of programmes offering training in palliative care in South Africa.
VENTER: There remains a strong belief that opiates lead to addiction, and that we may be facilitating this. This is particularly common amongst nurses. The other commonly exaggerated side effect of the opiates is respiratory depression. I am very aggressive with opiates, and have never seen a case of addiction. I have also never seen respiratory depression in a patient where the side effect was explained to the patient and care giver, where the dose is rapidly titrated up while watching for signs. I have, however, seen countless patients undertreated while clinicians wring their hands over these perceived dangers. I sort of understand killing someone with your drugs is a very basic fear for medical staff, but it remains hopelessly exaggerated.
GREEN: In Indonesia (which stretches over more than three time zones), there are only four hospitals allowed to prescribe morphine, and in those the number of doctors allowed to prescribe is limited. Even then, stocks may not be available. There seems to be very little pressure among the medical profession to get this changed.
That said, even in those places, doctors may be unwilling to prescribe because of fear of dependency, especially to those with a drug-using background. There is fear that patients are faking it to get narcotics, lack of understanding that doses need to be higher due to tolerance. Also drug users in recovery may be unwilling to take narcotics for fear of relapse.
Most patients and lay carers (and also some nurses) seem to accept that pain is an inevitable - even appropriate - side effect of sickness and death, especially from AIDS, and that little can be done about it. Thus they do not demand relief.
The wider picture of palliative care
As a starting point for a wider discussion of palliative care and the implications of the definition set out earlier in this article, members of the advisory panel were invited to highlight a few of the most pressing concerns.
The first point to emerge is the need to keep an open mind and listen to patients and caregivers to identify what is really most important and distressing to them at a given time. This leads, for example, to the observation that thrush is particularly painful and needs active treatment, regardless of the stage of a person's illness, and to the need to take skin conditions seriously.
The mental health dimension of caring for people with HIV and looking after their carers too is integral to palliative care, which recognises that it needs to be addressed, as that definition emphasised, in terms of 'intellectual, emotional, social, and spiritual needs' which inevitably require more than medication. However, medical treatment for depression may be appropriate and further comments on strategies to manage this would be welcome.
Care for the care-giver is clearly essential, and two members of the panel set this out as a major challenge. A discussion to be continued in the next issue, on which further contributions from readers are encouraged.
Observations on the wider picture
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)
Four key resources
UNAIDS Technical Update: AIDS Palliative Care Oct 2000
A Clinical Guide to Supportive and Palliative Care for HIV/AIDS, 2003 edition
Edited by Joseph O'Neill, Peter A Selwyn and Helen Schietinger, and available online, in print and CD-ROM formats from the US Department of Health and Human Services. This is a well-written and thorough manual although the section on 'Palliative care in limited-resource settings' is mainly about national policies, so practitioners will want to use other parts of the resources given here. Many sections discuss the use of drugs which are available in the USA but may be less available in other countries. Readers are sometimes referred to publications which are distributed free of charge to US practitioners but may not be available internationally (not least, because the free-phone numbers given cannot be called from overseas). The resource list at the end is very useful, but mainly US-based, even where international resources are concerned. The following contacts are in addition to those listed here.
UK Forum for Hospice and Palliative Care Worldwide
http://www.hospiceinformation.info/
Membership of the UK Forum is open to people involved in palliative care worldwide. It offers "up to date information on hospice and palliative care, first access to our training and education grants scheme, advocacy opportunities and access to policy papers on key issues .. and it's free!" Associate membership is in fact open to individuals as well as organisations, anywhere outside the UK. A two-monthly email newsletter, Worldwide Hospice and Palliative Care Online, is available free of charge on request to: anne@hospiceinformation.info
Diana, Princess of Wales, Memorial Fund Palliative Care Initiative
Where countries are still failing to address basic palliative care needs, such as provision of painkilling drugs, the Diana Memorial Fund is ready and willing to assist in advocating for change. Their grant-making capacity is currently very restricted and in any case their policy in respect of palliative care is to choose their own partners to work with. The initiative is not limited by disease, but has given absolute priority to countries in Southern and Eastern Africa, all of which are heavily affected by HIV and AIDS. The Diana Memorial Fund is also a founding sponsor of the UK's Stop AIDS Campaign which is pressing for increased international assistance to countries where HIV and AIDS are most severe and is an active supporter of the South African Treatment Action Campaign.