As noted two issues ago, palliative care is no longer simply equated with pain relief or the idea of hospice and end of life care. Particularly in the developing world, the definition of palliative care has broadened to include the provision of patient- and family-centred care throughout the continuum of illness.
In resource-limited settings, palliative care typically requires an interdisciplinary team approach that includes both formal and informal caregivers. The goal of the collaborative effort is to alleviate suffering and treat the patient holistically addressing their physical, intellectual, emotional, social, and spiritual needs in a way that is appropriate to each persons culture and economic situation. The team could therefore include clinicians, nurses, community and family members, social workers, churches/mosques and non-governmental organisations. Ideally, the integration of palliative care with broad clinical, social, and spiritual support into the care of someone living with HIV/AIDS should promote quality of life and realistic life planning at any time in the course of the illness.
Thats the goal at least. But how do these collaborations work in the real world? Just how easy is it to put together an interdisciplinary team to work together for the patients best interest? The answer is highly dependent upon a settings economic and human resources.
In my experience, said Dr. Vijay Anthony Prabhu, of the C.S.I. Rainy Multispeciality Hospital, in Chennai, India, palliative care is a neglected area with most personnel not knowing what to do. It is extremely difficult to put together a multi-disciplinary team to address the issue of palliative care. The central issue is one of funding and economics. To get multiple personnel to visit a sick AIDS patient/orphan and to perform tasks related to emotional, physical, spiritual and medical care is easier said than done. Who will bear the costs involved - of transportation and of personnel and pay for the skills utilised?
Dr. Henry Barigye, who works at the Mildmay Centre, a site that offers palliative care for people with HIV/AIDS in Uganda, agrees that funding is a key hurdle. One challenge is to ensure that people with HIV disease receive care despite the limited resources. This is not unique to palliative care or HIV/AIDS it is a major limitation for health services in general. It will certainly be difficult to provide interdisciplinary care at the community and household level.
Dr. Gerard Van Osch, described his experience in St. Maarten, Dutch West Indies: On our island an interdisciplinary team would consist of the doctor and the nurses from the home-care system. No other professionals are available, but of course the team would include the family, and loved ones of the patient, and if necessary one or two members from the St. Maarten AIDS Foundation, more as "temporary buddies", and, on the request of the patient persons from the church he/she belongs to. It is relatively easy to get such a team together for most patients however, there is no financial support for this assistance so its existence depends completely on voluntary help that might make it at times fragmented.
In some developing countries, patients with HIV who have accessed primary care services from government-supported hospitals simply dont receive palliative care because linkages between these government institutions, community based organizations and other potential care providers simply do not exist.
According to Dr. Douglas Wilson, of Greys Hospital in Pietermaritzberg, RSA: In South Africa, many patients with advanced HIV infection are too ill to travel, and so drop off their clinics radar screen. Many re-present to the facility at the end of life in a delirious and dehydrated condition, and may be admitted to a medical ward for intravenous fluids, antibiotics and a hurried decision as to whether or not antituberculous therapy would be appropriate. Palliative care is seldom considered and is difficult to implement, as communication between hospital wards and community-based organizations (CBOs) is faulty at best. It is rare for an outpatient clinician, who has been following the course of the patient for months or years, to make an elective decision to initiate palliative care.
The reasons for such poor communication between hospital and community are complex. There is a desperate shortage of skilled healthcare managers who could co-ordinate the efforts of different role-players. In the absence of a unifying national game plan the heads of clinics and CBOs tend to be maverick self-starters who achieve miracles with little funding, but who may not be the best team players around. Nurses and doctors who feel passionately about HIV tend to focus on providing clinical care, and seldom have the time to assume a more hands-off managerial role. Junior clinicians find it difficult to move from the curative fix-it-all role they learn at medical school. It is sometimes helpful to emphasise to them that palliative care work still provides hope; but instead of holding out hope for a cure, the doctor or nurse can offer relief from physical suffering and emotional distress. Finally, most home-based carers in South Africa work on a voluntary basis, and often burn-out after a few months. Adequate remuneration and a policy of caring for the carers is essential if CBOs are to be viable in the long term.
Treatment advocates can sometimes address the problem of resources, facilitate communication between government facilities and community based organisations and persuade local organisations to contribute to the delivery of palliative care. According to Pauline Ngunjiri, who helped organize the Society For Women and AIDS in Kenya (SWAK), the largest grassroots womens organisation fighting AIDS in that country: "Aware of the limited resources in Kenya, we organised women into groups and sensitised them to respond to households affected and infected by HIV/AIDS and trained them to activate hospitals to link with communities. We trained community activists so they could activate and catalyse structures around them to offer palliative care to those affected and infected. Mobilising communities to use their available resources is crucial."
Dr Henry Barigye agrees that local resources are already available within the community, and can be tapped with the right training: "There is a lot that can be done. Health workers of all levels can be trained to understand the importance of palliative care concepts such as pain and symptom control, involvement of the family and other care-givers, such as pastoral care-givers. In fact, pastoral care is one of the services generally available in sub-Saharan Africa. Understanding the philosophy of palliative care will help to find other support resources, including the role of the family, that may have been ignored previously.