Palliatives offer hope
to those living with Aids
By JUDY SIRMA
Palliative care is not much talked about as a response to HIV/Aids. In many countries, it does not even feature as an integral part of the national health strategies. It is often a mere oasis of good practice in a desert of neglect.
Yet palliative care can change the lives of many who would otherwise be bedridden with much uncontrolled pain.
Communities and governments have responded to Aids at different levels. But often they struggle with international donor policies, which give priority to prevention at the expense of care.
Most of the 2.3 million Africans killed by Aids in 2001 had no adequate care or pain relief and little dignity at the end of their lives.
Yet there is much that can be done – and affordably – to improve the quality of life for millions of such people and their families.
In Africa, palliative care is not well developed. Several challenges need to be addressed before it can become widely available. Millions of Aids patients need palliatives but do not get it. They have to suffer out of sight, frequently out of mind.
The World Health Organisation (WHO) recommends that palliative care be part of the national health strategy. Without this, provision will never be even and proper policies to make strong painkillers available are unlikely to be adopted.
Unfortunately, however, most African states have no national policy on palliative care. Only Uganda has formally adopted WHO’s foundation measures. Kenya, South Africa and Zimbabwe have hospice services but these remain outside the national health strategy.
Speaking during a palliative care workshop recently, Health Minister Charity Ngilu recalled that the 1997 Sessional Paperon Aids spells out the Government's commitment to promoting home care to reduce suffering.
Although the ministry has developed guidelines, the minister says lack of infrastructure is a challenge. But she reaffirms Government commitment to incorporating palliative care into university and mid-level college curriculums to equip health care providers with skill to deal with pain.
"It has been supportive to institutions and projects that provide palliative care to those in need by seconding staff to various hospices, providing room and land to such institutions and releasing support staff to train in this important field locally and abroad," the minister adds.
The launch of the Diana Princess of Wales Memorial Fund in Kenya three months ago only intensified the need to include palliative care in national health policies.
The fund’s chief executive, Andrew Purkis, says palliative care – care for people suffering from life-limiting illnesses – aims for the best possible life quality, embracing physical, psychological and spiritual needs.
This holistic approach aims to enable people to die with dignity when the time come and to support those close to them. The doctor says good palliative care should be accessible to all. It should thus be integrated into home-based care, otherwise it will benefit only a minority.
Hospices like Nairobi's, he says, are centres of excellence which can transmit good palliative care far and wide, providing training, knowledge and skills which then flow through home systems to care for millions of families.
However, he argues, it is important for good palliative care to be not just home-based or limited to bereavement care. Many people have to endure agonising pain during illness and, as death approaches, their families have to sit and watch.
To give love and care in such circumstances without pain control is not palliative care. The Kenya HIV/Aids strategy acknowledges that home-based care has been ad hoc and NGO/CBO-dependent.
The private sector carries much of the burden and has highlighted a need to standardise the practice.
Dr Purkis says: "We need a vision in which each of the three dimensions – a national policy, appropriate training in palliative care and access to effective pain relieving drugs – is present. If any is not there, the table will not stand properly,"
The Princess of Wales Memorial Fund Kenya representative, Yvonne Wamalwa, says palliative care should be an integral part of the national care and management system for those infected with Aids and other terminal illnesses.
Yvonne, widow of Vice-President Michael Wamalwa, says palliative care is crucial because Kenya has a high number of people with Aids. Secondly it is affordable and can be provided through home-based care.
She says provision of anti-retroviral drugs should also be a Government priority in response to Aids. "The Government should consider a national policy on palliative care which, once adopted, will ensure appropriate drugs," says Mrs Wamalwa.
It would also facilitate a palliative care system, training doctors, paramedics and community.
The Government's vision has generated a new momentum and hope in the fight against Aids. Many community responses have incorporated some of the palliative care principles, including family involvement and support of carers.
For any terminal illness, especially Aids, palliative care can both lengthen active life and improve its quality. Treatment of symptoms and pain control mean that even people previously bedridden are able to return to productive activity, says Dr Purkis.
Palliative care, with its focus on the family and on spiritual and psychosocial issues, can help people not only to look after their families but also to plan. In addition, palliative care is affordable and the technique and principles are relatively simple to transfer to the health care personnel.
For example, the Uganda hospice, like the Nairobi, takes care of the terminally ill by offering them modern methods of pain and symptom control, counselling and, most importantly, psychological and spiritual support. As a result, Uganda's Ministry of Health, through the five-year Health Policy and Strategic Plan (1999-2004), includes palliative care as part of the package of essential clinical services to be offered in 49 districts.
A person who sees himself as without care and, therefore, responsible for his or her infection is unlikely to seek confirmation of infection, especially without care or treatment.
Palliative care involves families and carers, where people can be helped to understand and accept their own infection and have access to accurate information on HIV transmission. They are powerful prevention advocates.
Palliative care is a humane and realistic way of dealing with Aids or cancer. It includes planning for survivors and children. Children whose parents are helped to plan for the future are less likely to be vulnerable to HIV.
Besides improving life quality, integrating the Aids treatment into palliative care initiatives may help reduce the stigma over time. Treatment itself helps reduce stigma. It shows that people with Aids are valued and a lot can be done to instill the idea that carriers can be productive and an asset to their families.
According to WHO principles, control measures must be adopted as part of a nation's essential health care strategy.
There is a need for a strong education and training programme for health professionals, public workers and lower grades of health care staff in palliative care and family carers.
The public need to be made aware that pain treatment exists. Rather than concentrating palliative services on institutions like hospitals, there must be a broad approach that accounts to population needs, especially rural.
The most important hurdle is to provide retrovirals at affordable price, to use strong opiates to control pain and other appropriate drugs to treat opportunistic infections.
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