Memorandum submitted by Help the Hospices
1. UK forum members aim to improve the extent
and quality of hospice and palliative care in developing countries
in particular. The membership now comprises over 200 individuals
and organisations working in the UK to support hospice and palliative
care provision overseas. The UK forum aims to have a facilitative
and enabling role that covers the development of a UK network
of interested people and organizations; creating a funding structure
to support hospices overseas; Facilitating twinning arrangements;
a training and education programme and an information-giving and
influencing role. The UK forum is part of Help the Hospices.
2. Addressing the HIV/AIDS pandemic: what
are the priorities in 2006?
2.1 We would like to see more of a balance of
priorities to include palliative care. Palliative care is also
not just about giving painkillers or end of life care, both of
which are important and vital. It is also, however, about the
support and empowerment of the patient and family through the
provision of that care, treatment and information. Increasingly
palliative care in HIV/AIDS is being delivered by community home
based teams of workers who have received basic training in physical
care and communication skills and who work under the supervision
of a trained nurse. The role of such workers is to:
(a) Identify patients in need of palliative
treatments (eg pain killers, anti-fungal therapy, nursing care)
and
(b) Support and empower the carer/family by:
— Teaching them basic caring skills,
— Giving information of what is happening
and what to expect and
— Giving reassurance of continued support.
(c) Provide education and prevention of further
spread of HIV. Many teaching opportunities arise when helping
relatives to care for a patient.
(d) Monitoring patient compliance and side effects.
This model has particular possibilities for integrating care and
making good use of resources in the rolling out of the ARV programmes.
(e) Linking with other agencies by identifying
families in need of financial/welfare assistance.
(f) Support in bereavement issues eg starting
"Memory Boxes" with children of dying parents to ensure
that the child has some tangible memories, eg by taking photographs
or helping illiterate patients write letters.
3. International targets for ARV provision—Lessons
learnt from the WHO 3x5 initiative; The G8 commitment to universal
ARV provision by 2010; UNAIDS strategy to achieve the 2010 goal
3.1 The UK forum for hospice and palliative care
worldwide supports the role of anti retrovirals (ARVs) in HIV/AIDS
programmes. However, we note that the delivery of ARVs to all
people with HIV/AIDS in programmes such as WHO 3 x 5 is problematic
for a variety of reasons, and that ARVs is not effective for all
patients. In particular, even when ARVs are available, some will
not be able to maintain or access treatment because of health
care delivery systems for example.
3.2 We call for the provision of palliative care
to improve the quality of life for those who are ill or dying.
Palliative care should not be seen as an alternative to the provision
of ARVs, or a service for those who cannot access ARVs, but rather
viewed as part of a continuum of care for people with HIV/AIDS
throughout the course of their illness, whether or not they are
able to access, or tolerate, ARVs. We call for the provision of
hospice and palliative care as part of treatment and management
of HIV/AIDS.
4. The UK contribution
4.1 UK government's Department for International
Development (DFID) HIV and AIDS treatment and care policy mentions
palliative care but it has been disappointing to witness the minimal
attention paid to palliative care by DFID. This omission has been
a missed opportunity to promote excellence in patient care. The
vital role of palliative care as an essential component of the
continuum of quality, integrated management of HIV disease is
not being recognised. As stated above, in the era of antiretroviral
therapy, it is important for a number of reasons that palliative
care is widely available from diagnosis through to bereavement
as
(i) Pain and symptoms are experienced throughout
the disease trajectory.
(ii) Antiretroviral therapy is associated with
significant side effects that need to be managed to maintain adherence
and maximize quality of life.
(iii) Access to antiretrovirals is limited globally.
Therefore terminal care, the historically defining element of
palliative care, is still necessary.
(iv) Fourthly, as life expectancy increases,
co-morbidities, particularly cerebrovascular disease, end stage
liver disease, and malignancies are increasingly apparent.
4.2 We would like to see DFID policy and practice
on HIV/AIDS include the following:
— Advocate for Palliative care to
be part of government's health or national HIV/AIDS strategic
plans.
— Support training for policy makers,
health professionals, community health workers, patients and their
families. Everyone concerned needs to understand the basic principles
of palliative care and how it can be delivered.
— Facilitate availability of pain-relieving
drugs and antibiotics. In countries like Kenya, Malawi and Zambia,
strong painkillers (opioids) are not accessible or are only imported
under very tight restrictions. The causes of pain in HIV/AIDS
vary, and include pain due to the illness itself, abdominal pain
or peripheral neuropathy. However, opportunistic infections—like
Herpes zoster infection or meningitis—can also cause pain,
as can tumours, like Kaposi's sarcoma. Many HIV/AIDS patients
can also suffer from back pain, arthritic pain and rheumatic pain.
Consequently, morphine and other opioids are vital for pain control.
5. References
Fact sheets on HIV/AIDS for nurses and midwives.
WHO/EIP/OSD/2000.5.
AIDS Palliative Care. UNAIDS Technical Update, October
2000.
Cancer pain relief, 2nd Edition. WHO, 1996.
Symptom relief in terminal illness. WHO, 1998.
Caring for carers, managing stress in those who care for PLWHA.
UNAIDS case study, 2000.
AIDS Home Care Handbook. WHO/GPA/IDS/HCS/P3.2.
Home-based and long-term care, annotated bibliography. WHO/HSC/LTH/99.1.
Home-based long-term care. WHO TRS 898. WHO 2000.
Suggested essential WHO drug list for palliative care: consultation
on HIV patients with cancer: December 2000.
Clinical AIDS Care Guidelines for Resource-poor Settings, MSF,
Belgium-Luxembourg, March 2001.
Confronting AIDS: Public Priorities in a Global Epidemic. Oxford
University Press for the World Bank, 1997
November 2005
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