4 February 2013
We are all born equal but into very unequal circumstances. And we all die. And, like birth, the circumstances and the experiences of dying across the globe are markedly different. Despite good analgesia and good care systems to enable people to live towards death in as pain free and comfortable a way as possible, an estimated three quarters of the world’s population do not die well. Many in low income countries fail to receive any diagnosis of illness. They die in pain, unsure of what is happening, unclear of what is curable, what is treatable, and what is inevitable. Dying is also costly. Many spend their money ‘forever searching for cures and never finding them.’ The process of dying can drain families’ incomes, destroy life chances of children getting educated (as school fees are not paid), while farm land and farm animals have to be sold to in the hope that the money raised will be enough to make a loved one better.
The burden of cancer looms large. With an estimated 600,000 men, women and children dying from cancer last year in Africa alone, less than 1% of them are able to access any specific cancer treatments. The most common cancers recorded in Africa are cervical cancer, breast cancer, and cancer of the liver and prostate, alongside Kaposi’s sarcoma and non-Hodgkin’s lymphoma. The global consumption of morphine, one of the cheapest, most powerful and effective analgesics is centred in high income countries with North America, Europe, Australia, New Zealand and Japan consuming 92% of morphine in 2008. Less than 0.3% of morphine was available in Africa.
Though globally there are a number of shared risk factors leading to cancer such as tobacco, sexual activity, alcohol and obesity, the causes of a significant proportion of the burden of cancer in low income countries appears to be linked to poverty and injustice, where those most vulnerable are exposed to most risks: sexually transmitted HPV-infection, urban air pollution and exposure to indoor smoke from charcoal and other fuels burned in cooking.
Set alongside these risks are chronic health and social care system failures which result in the failure of many cancers to be detected early enough for effective interventions. As well as the failure of on-going treatment plans to alleviate suffering and stave the progress of the disease.
Ultimately there is the unacceptable failure to provide care as patients move towards the end of their lives.
Many die screaming from searing, constant pain. The words of one woman dying of breast cancer in Kenya speak of a terrible injustice. Speaking of her pain she explained, ‘I want to go to sleep and wake up dead.’
In April 2012 THET funded an extraordinary programme focussed on building and integrating palliative care into the health systems of four countries in Sub Saharan Africa. The University of Edinburgh, the African Palliative Care Association (APCA) and Makerere University Palliative Care Unit are working in partnership to strengthen current palliative care programmes in Kenya, Rwanda Uganda and Zambia. Guided by the Ministry of Health in each country, and working through the excellent National Associations of Palliative care, the programme is setting up additional training in palliative care approaches. In practices they are training link nurses and hospital and community staff in key areas such as symptom relief and holistic pain assessment.
Twelve hospitals, three in each country, are being tasked to model a new form of palliative care, comprehensive palliative care that does not stop at one disease. This care recognises that the patient rather than the illness determines the care needs, and builds on the importance of engagement from a multi-disciplinary team, and response from nurses, clinical officers, clinic and hospital based renal physicians, obstetricians and gynaecologists, paediatricians, cardiologists, diabetologists, internal physicians, surgeons, pharmacy and social workers and laboratory technicians. They all play a role in proving, enabling and supporting care systems. Systems that enable timely identification of illnesses that are life limiting, identification of the right pain control and symptom management, and holistic care that supports patients emotional, social and spiritual needs as well as their physical needs.
As one Chief Executive of a hospital engaged in the programme explained, ‘up until now we sent home patients who were dying, with the words “discharged to hospice at home” knowing that there was nothing more we could do in hospital, but also knowing that there was no hospice at home. It was our way of coping.’ He explained that now things were different. Through the programme a system of comprehensive care is being built. A system that establishes a pathway of care for all those with palliative care needs that includes an assessment of physical, social and spiritual needs, and ensures that patients are not just neglected or lost from care.