By Brian Nambale
Today, October 14th, we commemorate World Hospice & Palliative Care Day under the theme “Compassionate Communities: Together for Palliative Care” with main celebrations in Uganda being hosted at Taibah International School in Kampala.
Palliative care is an emerging specialty in Uganda which was pioneered by a British doctor Professor Dr. Anne Merriman thirty years ago in 1993 at Hospice Africa Uganda (HAU) as a single room with three nurses in Nsambya hospital before it got its permanent home in Makindye.
HAU is a national morphine (Restricted Strong pain killer) producer and a centre of excellence in training palliative care providers across Africa. Palliative care has attracted several Doctors, Clinicians, Registered Nurses, volunteers, spiritual carers, traditional healers, and social workers to train in the provision of holistic care as an integral of the multidisciplinary team.
In our focus and efforts as a country to improve access to the national minimum healthcare package all over Uganda through Universal Health Coverage (UHC) in line with Uganda’s Second National Health Policy (NHPII); palliative care need is one of the key components assessed for each health facility visiting patient as it appears in the outpatient register.
Registered Nursing and Medical Clinical Officers Trainees now have palliative care as a course unit. Not only that, at the Ministry of Health division palliative care now has a commissioner. Registered Nurses trained in Palliative care Medicine by Ugandan law are prescribers and the government has continually sponsored health workers for Advanced Diplomas in Palliative care Nursing at Mulago School of Nursing. Specialized Pediatric (children)palliative care training has been previously conducted at Mildmay.
The Institute of Hospice & Palliative Care in Africa (IHPCA) affiliated to Makerere University Kampala (MUK) has many more trainings ranging from short courses for spiritualists, traditional healers, volunteers, prescribers courses, Palliative care initiators’ courses and many more to long term with Postgraduate, Bachelors Degree & Masters programs in palliative care. Hospice Africa Uganda celebrated thirty(30) years this September on the 23rd for its compassionate care and support to patients and families for three decades.
During the 7th International Africa Palliative Care Conference last year in Kampala, it was revealed that up to 85 per cent of the 550000 Ugandans with chronic and life-limiting conditions that need Palliative care were not accessing the services because of low government prioritization and biting poverty in families wrote Tonny Abet published August 25, 2022, Daily Monitor. This shows the need for palliative care specialists for better integration to meet future staffing gaps.
So, the question that demands an answer is how and why this existing state of affairs continues to exist thirty years after Dr Merriman walked the first step. There is of course no simple response, with a number of factors identified as impeding palliative care. These include; palliative care delivery limits, political will, cost-benefit issues, and a lack of education.
Palliative Care Services: enable patients to avoid acute hospitalisation and remain safely and adequately cared for at home. The services lead to better patient and family satisfaction and significantly reduce prolonged grief and post-traumatic stress disorder among bereaved family members.
Benefits of Palliative care
The lower costs in delivering care that is aligned with patient and family needs, enable avoidance of unnecessary hospitalisations, diagnostic and treatment interventions, and inappropriate/futile intensive and emergency department care with high cost.
The palliative care approach facilitates the identification of the wishes of patients and their families regarding care throughout a period of declining health, especially during end-of-life care. The aim is to improve the quality of life of individuals affected with life-threatening illness and of their families, by preventing and relieving suffering through early identification, assessment and treatment of pain and other problems – physical, psychosocial, psychological and spiritual.
Today the delivery of health care services within this globalized environment has become increasingly complex and political with post-COVID-19 economic recoveries.
Apparently, after the recent World Bank Uganda fund cut-off there are regular news reports of national health agendas coming under attack by the public who demand more comprehensive and expanded health care services. While concurrently, District Local governments are scrambling to cut budgets forcing health departments to do more with less. Against this backdrop of re-entrenchment in health care budgets, the delivery of Palliative Care programs must be rethought and a policy should be considered by policymakers as soon as possible.
Role of Training in Palliative Care Provision
Education remains a key ingredient for expanding Palliative Care programs. This will help to demystify messages like “Death is a medical failure”; and “Palliative is for those almost dying”.
Healthcare issues as we know them are far more complex and solutions must reflect this reality that the more ambassadors you produce the better. Nevertheless, education targeting the right populations and utilizing the suitable approaches is a necessary step for realizing the dream and vision of the International Association of Hospice & Palliative Care (IAHPC) ensuring that everyone who needs palliative care has access all around the world.
To ensure success, education in Palliative Care must target several different and often distinct groups. The fact that they are different requires educational approaches that are appropriate for not only each group but also allow for differences that exist within each of these groups which include Fellow healthcare professionals, Policy makers, Elected government officials, and the Public and village health teams as volunteers.
To achieve this goal, the individuals working in this field need to:
Encourage other professionals to take up palliative care courses so that the Role of Interdisciplinary(different care teams come together to provide specialized care according to the patient’s need) Teams is realized. These teams should consist of professional healthcare workers such as palliative care nurses, community volunteers, clergy or religious leaders, family members, mental health counsellors, traditional healers when appropriate, and other healthcare and support service providers and community workers. This collaboration allows for a more integrated and holistic approach to complex and interrelated problems and patient needs.
Not only that, at Delivery sites for Palliative care services should be available at all levels of the healthcare system. This includes tertiary, secondary, primary, and community levels of care. Palliative care will be more effective when it is provided in combination with existing Healthcare services. This integration will help in assessing and treating pain and other symptoms, and psychosocial problems as part of routine Health care. Palliative care interventions are not specific to any one setting or location. These can be delivered as home-based, community-based, facility-based or hospice care.
The government of Uganda through the Ministry of Health should also increase the scholarship vote to interested Ugandan health workers especially those in service.
For God & My Country; To Love and Serve the Nation
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About the Author: Brian Nambale is a Clinical case manager at Medicure Trauma Centre-Nabumali, LCV Councillor in Mbale, specializing student at IHPCA home of Hospice Africa Uganda, Member of the Palliative Care Association of Uganda (PCAU), International Children’s Palliative care Network (ICPCN) and the International Association of Hospice & Palliative care (IAHPC)
