Catherine is a 28 year old mother who lost her daughter to advanced leukemia.
After doctors had informed her that there was nothing they could do about her condition, they were sent back to their home in rural Mayuge District.
The daughter was in excruciating pain and her mother could not afford the best pain-relief medication; but most importantly both mother and daughter did not have the necessary support to prepare themselves psychologically for the looming death.
Palliative care according to the World Health Organisation is an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illnesses, through the prevention and relief of pain and suffering by means of early identification and impeccable assessment of pain and other problems, physical, psychological and spiritual.
This does not mean that palliative care is only given to patients facing an inevitable death. In many cases, it is provided alongside treatment from the time of diagnosis till recovery.
Palliative care involves a comprehensive approach to health care which includes but is not limited to pain relief, symptom alleviation, counseling for the patient and family to affirm life and regard death as a normal process etc.
Palliative care as a human rights issue is part of the content of the right to health and because of the inter-relatedness of human rights, it also forms a big part of the right to dignity and freedom from cruel, inhuman degrading treatment.
General Comment 14 by the United Nations Committee on Economic, Social and Cultural Rights elaborates on the right to the Highest Attainable Standard of Health to include access to curative, rehabilitative and palliative care services. It further states that there should be “attention and care for chronically and terminally ill persons, sparing them avoidable pain and enabling them to die with dignity.”
The UN Special Rapporteur on Torture, Juan E Mendez in his report concluded that “[w]hen the failure of States to take positive steps, or to refrain from interfering with health-care services, condemns patients to unnecessary suffering from pain, States not only fall foul of the right to health but may also violate an affirmative obligation under the prohibition of torture and ill-treatment.”
This means that states should as a minimum core obligation on the right to health ensure the accessibility and availability of essential medicines for the relief of pain and suffering in order to fulfill its obligations under the prohibition of torture and cruel inhuman degrading treatment. The WHO Essential Medicines List includes at least 14 palliative care medicines that should be accessed easily in all countries.
The accessibility of inexpensive and easy-to-find pain medication should be made priority by incorporating them into the National Public health policy/plan.
In Uganda, although the right to palliative care is not expressly set out in the constitution, it can be read into as a component of the right to health as well as Uganda’s International Human Rights obligations.
Uganda has made significant strides in ensuring that there is affordable and culturally appropriate palliative care mainly through efforts of Civil Society Organisations, the government is slowly coming on board but more needs to be done to ensure availability of free pain medication in public health facilities, training of staff such as doctors, nurses and counselors in palliative care approaches in order to help families like Catherine’s who cannot afford to get specialised care from private service providers.
Ms. Daniella Kagina
Intern at Center for Health, Human rights and Development (CEHURD).