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Written evidence submitted by Help the Hospices 30 September 2009 About Help the HospicesHelp the Hospices is the
Help the Hospices is a member of and provides the secretariat for the Worldwide Palliative Care Alliance, a network of hospice and palliative care organisations around the world. General comments on the strategyIn the HIV strategy, Help the Hospices welcomed the inclusion in DFID's HIV strategy of a priority action 'supporting international, national and community-level strategies for care, including palliative care, that promote and protect human rights and that relevant to the local epidemic."
The recognition that 'good quality palliative care and home-based care must be made more available as part of a comprehensive approach to AIDS services" was welcomed as was the acknowledgement that 'oral opiates, including oral morphine, must be made routinely available for pain management' was also welcomed.
Summary of main points and recommendations1. We are keen to see the publication of the baseline study and how DFID will measure progress in relation to their priority action around supporting international, national and community level strategies for care, including palliative care for people living with HIV. 2. We urge DFID to be transparent and open about the work they are undertaking to meet their priority objectives and to make this information more easily accessible.
3. We urge DFID to hold regular
meetings with civil society in the 4. We welcome DFID's continued role working with the UK Consortium on AIDS and International Development
About hospice and palliative care around the world Palliative care and HIV
Palliative carePalliative care is a vital component of the overall continuum of care for people living with and affected by HIV, and should be an integral part of a comprehensive public health approach.
The World Health Organization (WHO) defines palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual."
"Palliative care is an essential component of a comprehensive package of HIV/AIDS because of the variety of symptoms they can experience - such as pain, diarrhoea, cough, shortness of breath, nausea, fatigue, fever and confusion. At the community level, lack of palliative care places an unnecessary burden on hospital or clinic resources." WHO definition of HIV palliative care
Palliative care adopts a comprehensive approach to the care and support of patients, families and carers including pain and symptom control, end of life care, psychosocial, spiritual and bereavement support. It is delivered from the point of diagnosis alongside curative treatment until the end of life. A number of models have been developed around the world utilising the skills of healthcare professionals, community health workers, volunteers, families, friends and carers.
Palliative care is provided in a variety of settings including hospitals, residential hospices, community health centres and the home. In resource-limited settings, the focus is largely on community and home-based care. Palliative care is delivered in government health systems as well as voluntary and faith-based health systems.
1. Palliative care and HIVPalliative care is universally recognised as an essential component of the HIV treatment and care continuum and yet UNAIDS acknowledges that it "is one of the most neglected aspects of healthcare"[1]. The benefits of palliative care in supporting people living with HIV have a strong evidence base and are recognised around the world.
Palliative care and treatmentPalliative care supports adherence treatment[2] and should be delivered alongside treatment from the point of diagnosis as: · there is a high prevalence of pain and symptom throughout the trajectory of the disease which needs to be controlled · anti-retrovirals (ARVs) are associated with high symptom prevalence and burden[3] · physical, psychological and global symptom burden is associated with poor adherence · late presenters require advanced disease care.
Palliative care and prevention· Hospice and palliative care team visits to a family member or community member living with HIV can be one of the most effective times for teaching prevention and behavioural change. · Hospice and palliative care outreach programmes can reach large numbers of HIV patients, particularly the most stigmatised and marginalised, in both urban and rural settings. · Hospice and palliative care is often an entry point for voluntary counselling and testing programmes · Hospice and palliative care can help to reduce stigma in communities.
Palliative care at the end of lifeAIDS continues to be a life-threatening disease. The reality is that many patients do not have access to ART, have developed problematic or even life-threatening complications from ARVs or are no longer able to take them. AIDS patients often present late and palliative care is the only option. It provides: · compassionate care · pain control · control of distressing symptoms · emotional, social and spiritual support to patients · bereavement support for families and carers.
2. Hospice and palliative care and HIV - what needs to be done?While palliative care is acknowledged in many national, bilateral and multilateral HIV policy and strategy documents, there is a long way to go to make hospice and palliative care accessible to all. The following actions need to be taken:
· Eliminate barriers in the laws and regulations for effective use of opioid analgesics such as morphine · Make palliative care drugs, including oral opioid analgesics available and accessible · Awareness of and commitment to palliative care by bilateral agencies, multilateral agencies, International NGOs, Civil Society, funders and governments · Clarity of terminology
in · Inclusion of palliative care in Government health policy and systems, HIV national strategies and National Cancer Control programmes · Integration of palliative care in undergraduate and postgraduate curricula of medicine, nursing, research, and other disciplines · Training, support and supervision of community health workers and non-professional caregivers · Evidence-based research on palliative care
3. An innovative example of hospice and palliative care service deliveryHospice and palliative care services began with the founding of Hospice Africa Uganda in 1993. After extensive advocacy, the Government of Uganda included palliative care as an essential part of its national health policy and strategic plan in 2000. Morphine is provided free of charge by the Government. In March 2004, a Statutory Instrument was signed by the Minister of Health authorising palliative care nurses and clinical officers to prescribe morphine as part of their clinical practice, thereby increasing access to palliative medication.[4]
4. Further
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Worldwide
Palliative Care |
International Association for Hospice and Palliative Care www.hospicecare.com |
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Regional Hospice and Palliative Care Associations |
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African Palliative Care Association www.apca.co.ug |
Asociación Latinoamericana de Cuidados Paliativos http://www.cuidadospaliativos.org/ |
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Asia Pacific Hospice Palliative Care Network www.aphn.org |
European Association of Palliative Care www.eapcnet.org |
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National Hospice and Palliative Care Organization (US) www.nhpco.org |
Canadian Hospice Palliative Care Association www.chpca.net |
[1] UNAIDS. Palliative Care [online]. Available from: http://www.unaids.org/en/Issues/Prevention_treatment/palliative_care.asp [Accessed 23 July 2008].
[2] Harding R, Norwood S, Leake-Date H, Fisher M, Edwards S, Arthur G, Anderson J, Johnson M. Successive switching of anti-retroviral therapy is associated with high psychological and physical burden. International Journal of STD & AIDS 2007; 18(10):700-704.
[3] Harding R et al. Is antiretroviral therapy associated with symptom prevalence and burden? International Journal of STD & AIDS 2006; 17(6):400-405.
[4]Wright M and Clark D. Hospice and palliative care in