Anne Merriman

Founder of Hospice Africa, Director of Policy and International Programmes, Honorary Professor of Palliative Care at Makerere University and the Institute of Palliative Care in Africa at Hospice Africa Uganda

Email: hospug@gmail.com

This special issue for ecancer devoted to palliative care is long overdue. We are grateful to ecancer for taking the need for palliative care in Africa seriously and in this issue, presenting several papers based on African palliative care in 2014.

With this editorial, I would call on all working in cancer therapy and services for those with life limiting illnesses to realise that pain is often the presenting symptom, the most feared of all, yet often the least addressed. Pain affects millions, but only when surgery and radio-oncology teams are addressing pain and palliative needs, alongside curative therapy, will we be true humanitarian healers. Success in our research must not be measured in months or years of extension of life but in the quality of life that is left.

The World Health Organisation (WHO) pointed out in 1986 that the suffering in the developing world from cancer alone is greatest. Because of reduced economic circumstances, cancer sufferers are denied treatments with surgery and radio-oncology which are a given in developed countries. This was first indicated in the WHO best seller booklet Cancer Pain Relief. The first edition, described by the Lancet as “...the most influential publication in the field..” was written with the help of a leader from WHO itself through Dr Jan Sjernsward, oncologist and leader of the Cancer and Palliative Care Unit at WHO. Expert assistance from the palliative care world included Robert Twycross of London, Dr F Takeda of Japan and Professor Ventafridda of NCI, Milan, Italy.

This booklet pointed out that there is a simple way to control pain, even severe pain caused by cancer using the analgesic ladder. Morphine was pronounced as the best analgesic for severe pain as it does not have a ceiling and is usually affordable. It proved that no doctor should leave a patient in pain. A copy went to every Government in the world. I was in Singapore at the time, struggling to set up a service to comfort those who, failing to respond to the excellent curative services there, were at home, suffering from severe pain. The Minister of Health in Singapore had recently lost a sister from painful cancer and realised that this WHO book provided a solution that could be replicated in Singapore, still considered a developing country at that time but which had excellent resources for curing cancer but little for the care needed when such treatments failed. We were set free immediately from the myths and antagonism from senior health professionals who thought we might be practising euthanasia when we designed and introduced a simple formula for oral morphine that could be used in the home in conjunction with other medications for pain and other symptoms. Working within the structures of the University and the Colleges, education in palliative care took off, so that soon palliative care was available to all in need and Singapore went on to be one of the greatest success stories in palliative care with the able leadership of Cynthia Goh, the first Doctor to join me in that service.

However, the poorer countries were less fortunate. Africa and India have sad stories to tell of suffering from cancer and other painful conditions. In 1993, Hospice Africa took up this cause for Africa with the model set up in Uganda. In 1994, Dr Rajagopal took up the cause in Kerala, India and showed the sub-continent that affordable palliative care was possible once severe pain was controlled and health professionals were trained and knowledgeable. Meanwhile palliative care was extending to SE Asia as a result of the efforts initiated in Singapore through the Asia Pacific Hospice and palliative care Network (APHN).

The papers presented in this special issue are all from Africa. The inspiration for the special issue initially arose from the celebrations for 20 years of Hospice Africa in Uganda in May 2013. Among the celebrations, it was decided to have a day dedicated to young researchers in palliative care for cancer and AIDS, a disease that has doubled the cancer incidence in most African countries and has its own painful conditions requiring palliative care.

Ten papers were presented by young researchers in Uganda and the first three were awarded monetary prizes. One of these three is presented here. This paper, Palliative care needs of HIV exposed and infected children admitted to the inpatient paediatric unit in Uganda, is by Dr Jane Nakaweesi, a paediatrician from Mildmay et al and this was the winner of the presentations on the research day in 2013. This is an in depth study of the palliative care needs of children admitted to the special paediatric unit at Mildmay in Uganda. All were either infected or exposed to HIV. There is a myth in many countries, that since Anti Retroviral Therapy (ART) has become available, palliative care will not be needed for HIV patients. Here it is shown that there are multivariate needs requiring the approach of palliative care, to relieve physical symptoms, psychological, social, financial, cultural and spiritual needs for both the children and their families. The need for the holistic approach, originally a solution for improved quality of life in cancer patients by Dame Cicely Saunders, is just as much required for those with HIV and many other illnesses.

Then there are two papers describing the initiatives in two very different countries with differing cultures and needs. Dr Eunice Omeyene is the lead writer of Home based palliative care for adult cancer patients in Ibadan - a three year review, which describes a home based service still struggling to get off the ground, in a Hospice based at UCH Ibadan, Nigeria. This service commenced in the University Hospital and has struggled for some years to give home care to patients when they are discharged. There is reluctance for home care from hospital based clinicians, and experience in Africa has shown that services reach more people and are tailored more to African needs when commenced from home care within the communities than when commenced in bureaucratic hospital settings. The spirit and ethos of palliative care is difficult to get off the ground in the hospital services but may come into hospitals from community based services. This service, founded by Professor Olaitan Soyannwo, a leader in the field of pain control from her background in anaesthesiology, is moving forward.

The second service is from Sudan and is described in Palliative care for cancer patients in Sudan: an overview. The palliative care service, founded by the lead author Dr Nahla Gafer, originally commenced before the separation of Sudan from South Sudan, catering for 40M people in the largest country in Africa, with patients struggling to reach the only oncology services in two oncology hospitals both in, or very near to, Khartoum. Patients were witnessed arriving there in the early days, many dying as they arrived following long journeys, sometimes across the Sahara desert. This sad situation was identified and acted upon by Dr Nahla, a young oncologist, who initiated a palliative care ward within RICK, the major oncology unit, where patients could be relieved of pain and symptoms and if they survived, could move forward to the curative treatments available for cancer at RICK. Those who died were supported with her palliative care service and died in relative comfort. Having commenced this, she went further to follow up patients who lived within Khartoum and set up a limited home care service using volunteer nurses who she has trained with help from within Africa and elsewhere.

Both Professor Olaitan and Dr Nahla initially visited the home care service at Hospice Africa Uganda.  International Programmes have been involved with the initial training both for those coming to Uganda for the 5 week Initiators programme and in their own countries: Nigeria and Sudan.

A paper on education in palliative care, Education and training of health care professionals across Africa to optimise the delivery of palliative care for cancer patients, is led by Professor Fiona Rawlinson of Cardiff University, Wales, supported by a team well versed in African educational services for palliative care. Education is essential if palliative care is to be provided for all in need in Africa. The following paper, Palliative care in Africa: a global challenge, from Rwanda, points out that millions are still living and dying in severe pain, in spite of the simple solutions known to Africa since 1993. This has been proven and with the commencement of using a simple formula allowing patients to die at home, together with education, affordable morphine should now be available to many more. At least 30 countries out of 56 in Africa have had training in palliative care but many of the services, if commenced in these countries are confined to the capital or one service and are not spreading to the rest of the country. Every palliative care service must have an education arm or it just stays in the catchment area where they are working. Essential to education is an “impeccable service” so that those trained can see it in action in the African social, cultural and economic circumstances which vary from country to country and then apply this to their own circumstances. Sadly they are missing the political will to move forward due to many myths surrounding the use of opioids.

Commencing with undergraduate training of doctors and nurses, community volunteers and spreading to traditional healers, usually the first port of call in sickness in the rural areas, education has now developed degree programmes in two countries (University of Cape Town in S Africa and Makerere University through IHPCA with Hospice Africa Uganda). These degrees are to support leaders in advocacy, education and service in their own countries. We are developing a core of essentials for African palliative care and it is very important that each African country is involved. We need to ensure that the services in the developed world are not transferred or palliative care will die as our economies in Africa cannot afford them and the culture is so different. The basic elements of palliative care are universal, but teachers from the developed world must gain experience in Africa to be able to teach effectively, so that they are aware of the restrictions as well as the solutions, from economies and cultural beliefs etc.  African palliative care is now also being introduced into Francophone countries through Initiators programmes from Hospice Africa in Uganda together with African Palliative Care Association (APCA).   But only Cameroon has affordable oral morphine available in the Anglophone section and limited to Yaoundé for the Francophone section.  Eventually these services must move into the Lusophone countries. The health services differ in each country. These too need to be studied and palliative care services geared towards their need, economy and culture must be introduced.

This comprehensive paper looks also at the global challenge that is being exposed through publications on palliative care in Africa. This paper gives the horrific statistics of the extent of suffering from cancer and AIDS and the need for the whole world to recognise that this suffering is not acceptable and is against our Human rights and ethics, in a world so developed for those more economically sound.

The Public health approach which has been in place in palliative care since 1993 for Africa, is often not referred to in the pressure of the individual suffering that comes to our door. But we must look at this and try to extend our care more widely through getting our Governments involved in designing services which reach the poorest. In most countries in Africa today less than 50% actually see a health worker, using the traditional healer as the first port of call. This is especially true of cancer which is not only a death sentence but a heralder of a death of torture for the patient and family. Governments must be as aware of this form of torture as they are of other human rights issues. Palliative care must be a priority within their health plans translated into services reaching as many as possible.

The statistics of cancer in Africa and of deaths are shocking. Most countries do not register the cause of deaths so many statistics come from the privileged few that reach a hospital or a health centre where statistics are kept. This makes them at best a guestimate from whichever source. We must be aware of these limitations and admit to them in our scientific papers. Many papers are written as if services are available to all yet those of us who are working in the poorer countries in Africa are aware that our medical services are far from available to all.

These five papers give a cross section of palliative care developments since 1993. There has been a rapid spread into several countries in the last 20 years. Nairobi Hospice commenced in 1990 but the first initiative to reach all Africa commenced in Uganda in 1993 and has been taken up by APCA.  Today we are working with 30 countries but only 16 have affordable morphine within their country being made up and used by trained professionals whereas in the previous ten years (1979-89), only two countries had palliative care and available morphine, Zimbabwe (1979) and S Africa (1980).

This year’s World Health Assembly has brought the message home to us, where all the World Health Assembly member countries agreed to include palliative care in their strategic health plans, as an essential service for their people. We must have faith in the integrity and goodwill of our leaders for the health of the future. They have a heavy burden and palliative care is now added to the many other calls for priorities. Let those of us working in cancer, HIV and other areas, give them support and bring them advocacy to ensure this moves forward.

What can we do as readers of ecancer? All in cancer care and other life limiting conditions must work together with palliative care services and ensure palliative care integration into health and education systems. Palliative care needs to be introduced into the training of each specialty, but particularly oncology which should be introduced into all training programmes for palliative care, from the simplest to the degree level. When radio-oncologists and surgeons are promoting palliative care in their units and ensuring that their patients are pain free, we will be almost there.

I hope that this special issue will contribute to all our efforts in spreading the need for compassion in the field of palliative care, and lead us to the simplest affordable solutions to stop the pain and suffering we witness daily in the developing world, bringing peace to patients and families at this special time of life.

Access ecancer's free Palliative care elearning course for healthcare professionals in Africa here.