Uganda’s palliative care – a global model for the provision of quality ‘end of life’ care for all

Guest blogger, Talia Augustine, discusses palliative care in Uganda and how one organisation is working to change attitudes towards terminal illness. (Image above: An elderly patient with chronic debilitating back pain receives a bottle of liquid morphine during a home visit from a representative of Hospice Africa Uganda)

After learning about Hospice Africa Uganda through my global health studies I felt, and still feel, a great respect and admiration for the health workers and volunteers who strive to provide high quality end of life care (EoLC) to all Ugandans in need. Not only do they deliver EoLC to patients within hospitals, but these health workers and volunteers have overcome challenges, such as impoverished health resources and poor transport connections, to travel vast distances across Uganda in order to deliver care to people who wish to die at home.  With efforts like this, it is no wonder Uganda has been ranked 35 out of 80 countries in the Economist’s Quality of Death Index 2015, with higher ranks filled predominantly by high-income countries. In this blog, I will explore how Uganda has achieved this feat, and the trials it has faced in doing so.

What is ‘end of life’ or ‘palliative’ care, and what does it entail for health care providers, patients and their families?

‘End or life’ or ‘palliative’ care refers to health care delivered by health care providers, to patients in their final days or hours, or to patients inflicted with a terminal illness which is advanced and incurable.

The National Institute for Health Care and Excellence (NICE) EoLC Quality Assessment Tool provides details on what EoLC provision entails for health care providers in the United Kingdom. I believe the following summarised guidelines underlie a shared ethos amongst EoLC health care providers practising in most western countries:

• Identification of people approaching end of life in a timely manner
• Sensitive and accessible communication with people approaching their end of life, and their families
• Patient autonomy is respected, and health care providers offer patients the opportunity to discuss, develop and review a personalised care plan
• The physical, social and psychological needs of people approaching end of life are met at all times, including access to medicines and equipment
• People approaching end of life care are offered social, practical, emotional, spiritual and religious support appropriate to their needs

In contrast, EoLC in Eastern European, Mediterranean, African, Asian and Southern American countries is often heavily influenced by cultural, spiritual and social beliefs, rather than placement of a patient at the heart of all decisions made about their care. To prevent what is culturally deemed unacceptable, there have been cases where EoLC health care providers have miscommunicated or refrained from communicating serious diagnoses to their patients.  For example, in 1987 Holland, JL and Company identified African, Italian, and Japanese clinicians using terms such as ‘unclean tissue’ and ‘growth’ in order to avoid use of the word ‘cancer’ when explaining cancer diagnosis. Moreover, many cultures have a long tradition of family-orientated health care, whereby extended members of the family make collective decisions with physicians on EoLC, often without the patient’s input. In Pakistan, physicians are adopted into the family unit and referred to as ‘uncle’, ‘aunt’, or a ‘sibling’, highlighting the role of the physician in intimate decision making regarding the concerned patient’s life.  Here, we can see that beliefs on how one should spend time at the end of their life and how they should be cared for, varies according to cultural, social and spiritual beliefs.

How has Uganda overcome barriers to effective EoLC acceptance and provision over the last 20 years?

Changes in cultural attitudes towards EoLC in Uganda

Uganda has been plagued by the HIV/AIDS epidemic for the last 30 years. HIV/AIDS has been, and continues to be viewed as an ‘immoral’ illness by many Ugandans, despite advances in sexual and maternal health education and availability of effective medicine, namely anti-retroviral drugs. Such advances have been aided by the efforts of HART and our partner in Uganda ‘Patongo Orphan Infants Health Rehabilitation’ (PAORINHER). For instance in 2015, 375 children were diagnosed as HIV positive as a result of PAORINHER providing access to CD4 testing. Moreover, these children were provided with anti-retroviral treatment, access to the anti-bacterial septrin, TB screening and further health and education support.

As many HIV/AIDS cases occur in people of who are of economically productive age (30-45 years), the burden of caring for these terminally ill individuals and their children is placed with elderly family members. These elderly care providers are often the subject of physical, emotional and social abuse, inflicted upon them by their communities because they are associated with persons infected by HIV/AIDS. Here, it is evident that the stigma associated with HIV/AIDS has extended to elderly family members providing EoLC. Deaths from HIV/AIDS and other life-impoverishing diseases such as cancer, can also have a stigma attached to those who are affected by the illness. Moreover Ugandans, as well as many other non-western citizens, often prefer care from traditional healers instead of western medicine, which can be expensive and therefore places huge financial burden on relatives providing funding for the care of a loved one.

However, Hospice Africa Uganda has pioneered EoLC education of Uganda’s citizens and with this, it is improving understanding and changing cultural beliefs previously connected to EoLC. In 1993, Hospice Africa Uganda commenced delivery of EoLC under the supervision of Dr Anne Merriman. She, along with a team of three passionate nurses (identities have not been disclosed), began to deliver at home care with additional hospital consultations to people who could travel to the hospice base in Kampala. Since this time, the team has grown to become comprised of 130 staff members and a budget of 2.8 million euros. This growth has enabled more staff to provide monthly educational outreach programmes, during which patients and carers receive affordable updated prescriptions, talks from patients of Hospice Africa Uganda, and psychosocial counselling. Nearly 200 people are seen per month this way, showing that the outreach programme has hugely alleviated fears held by Ugandans with regards to financial burden and fear of unknown western medicine.

Opioid prescribing and legislation

To alleviate the pain many suffer during their end of life stages, Dr Merriman introduced ‘liquid morphine’ in 1993, a formula for which she previously perfected whilst working in Singapore, which is accessible, affordable and easy to make. In 2002, after Dr Merriman’s liaison with government officials, it became legal for nurses and clinical officers to prescribe opioids following completion of 9 months training with Hospice Africa Uganda and registration with the Ministry of Health. This has enabled more Ugandans to receive a correct dosage of opioids, mainly oral liquid morphine, from trained healthcare professionals in order to treat pain associated with end of life.

Challenges still to overcome

The main challenge facing the palliative care infrastructure in Uganda is still a lack of trained opioid-prescribing healthcare personnel, despite legislation previously described to increase the number of these professionals. In addition, existing trained opioid prescribers need continual support and mentorship in the maintenance of medical records, assessment and evaluation of services offered, advertisement of service, and aid to build upon the foundations of the organisation where they are employed. Until these features can be put into place, 57% of Ugandans will still be unable to reach a qualified opioid prescriber, either because it is too difficult for people to reach the services due to the poor transport facilities alluded to earlier, or because of the lack of awareness that EoLC service even exist. 90 out of 112 districts in Uganda now have at least one palliative care provider, but with the growing burden of an ageing population and associated non-communicable diseases such as cancer, diabetes and cardiovascular diseases, the need for trained professionals is ever greater. Not only do the remaining 22 districts require a palliative care provider, but all districts need to expand services in order to meet and overcome the health care challenges ahead.

Disclaimer: This blog is a space for discussion and personal reflection. Any opinions expressed within the blog are those of the author and are not necessarily held by HART. Individual authors are responsible for the accuracy of statements made within the blog.