Written evidence submitted by Help the
Hospices
30 September 2009
ABOUT HELP
THE HOSPICES
Help the Hospices is the UK national charity
for the hospice movement. Help the Hospices' international programme
supports the development of hospice and palliative care worldwide
through advocacy, information, organisational development support
and grants.
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
STRATEGY
In 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 RECOMMENDATIONS
1. 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 UK to ensure we, and our partners worldwide,
are well informed and can support DFID meet their objectives.
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 care
Palliative 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 HIV
Palliative 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".[16]
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 treatment
Palliative care supports adherence treatment[17]
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;[18]
— physical, psychological and global symptom
burden is associated with poor adherence; and
— 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 life
AIDS 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:
— control of distressing symptoms;
— emotional, social and spiritual support
to patients; and
— 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 international
and national strategy and policy documents on the package of care,
and the role of palliative care within it.
— 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 delivery
Uganda
Hospice 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.[19]
4. Further information
For more information about hospice and palliative
care around the world, please contact the following organisations:
REGIONAL HOSPICE
AND PALLIATIVE
CARE ASSOCIATIONS
National Hospice and Palliative Care Organization
(US) www.nhpco.org
16 UNAIDS. Palliative Care [online]. Available
from:
http://www.unaids.org/en/Issues/Prevention_treatment/palliative_care.asp
[Accessed 23 July 2008]. Back
17
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. Back
18
Harding R et al. Is antiretroviral therapy associated with
symptom prevalence and burden? International Journal of STD
& AIDS 2006; 17(6):400-405. Back
19
Wright M and Clark D. Hospice and palliative care in Africa.
Oxford: Oxford University Press; 2006. Back
| 
