Palliative Care - Because I Matter

Dear Friends,

WHPCD 2018 Theme

Today I write to you about something different from my usual stories. This blog is about my thoughts. I intend to start writing about some of the work that I have been involved over time.
This piece is about my currently work. Its work not for the faint hearted. It is meaningful work - touching lives and all that. Please read up to the end.

On Saturday October 13th 2018, the world will commemorate the World Hospice and Palliative Care Day (WHPCD 2018) under the theme Palliative Care – Because I Matter! This is a unified day of action to celebrate and support hospice and palliative care around the world. The Palliative Care Association of Uganda (PCAU) where I currently work is spearheading the commemoration of this day in Uganda. The event will be held at Makerere University Sports Grounds. The aim of the events will be to create awareness and to promote collaboration for advancement of palliative care services in Uganda. 

These activities have been planned for the day:  

• A Palliative Care Walk around the Makerere University Hill to raise awareness about this important service
•  Exhibitions by hospices.
• A football game between Executive Directors of hospices and patients who will volunteer to play. - 
• Other games by staff working with hospices in the country. 

The World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and thorough assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Globally, the diseases that require palliative care for adults and children include cancer, cardiovascular diseases, HIV/AIDS, liver and kidney diseases, among others.

In era of increase in the incidence of Non Communicable Diseases (NDCs), palliative care services are as important as any other element of Universal Health Coverage (UHC) and cannot be ignored. There is evidence by research to show that early palliative care interventions improve survival and patient outcomes and, for this reason, should be provided from the point of diagnosis.

The provision of palliative care services in Uganda started in 1993 with the establishment of Hospice Africa Uganda (HAU) founded by Anne Merriman a British Doctor. It is now therefore, silver jubilee of Palliative Care service provision.  

Over the last 25 years, Uganda has realized milestones and registered globally recognized best practices in this field. Some of these achievements that are envied by the palliative care movement in the world include the following: 

• Palliative Care was integrated in Uganda’s Health Sector Strategic Implementation Plan since 2004. Palliative Care is included in the mission statement of the national health policy and is included within the Uganda Minimum Health Care Package (UMHCP). 

• Uganda was the first country in the world to allow specially trained palliative care nurses and clinical officers to prescribe specific opioid analgesics including oral liquid Morphine for pain control in 2004.  This greatly contributed to spread of Palliative Care in the Country.

• The government of Uganda pays for the production of Oral Liquid Morphine a World Health Organization (WHO) recommended medicine for management of moderate and severe pain. Patients access this medication free of charge.

• The World Health Organization (WHO) and Worldwide Hospice and Palliative Care Association mapping in 2014 highlights Uganda as the only country in Africa which had achieved advanced integration of palliative care into mainstream service provision.

• The Quality of Death Index published by the Economist Intelligence Unit in 2015 ranked Uganda as the second in Africa after South Africa and 35th globally out of the 80 countries studied. Parameters of measurement included: Palliative and healthcare environment, human resources, affordability of care, quality of care and community engagement.

• Research conducted by the Palliative Care Association of Uganda shows that there is a form of Palliative Care in at least 90% of all districts in Uganda

Whereas Uganda is hailed globally as a model of palliative care service provision in Africa, there is still a significant unmet need for palliative care and pain relief services. Currently only 11% of those who need pain control within the wider context of palliative care access it in our country. 

The recent  Annual Report by the Uganda Human Rights Commission (UHRC) to Parliament set out recommendations on the right to palliative care in Uganda. The recommendation made to government include: 

• The need to expedite the development of the National Palliative Care Policy to streamline the provision and regulation of palliative care in Uganda.

• Instituting of a clear monitoring and evaluation strategies for palliative health care services.

• Reinstating the legal instrument allowing specially trained nurses to prescribe morphine.

• Strengthening the national and district coordination mechanisms for the provision of palliative care services.

• Ensuring that the proposed National Health Insurance Scheme covers palliative care.

• Increasing the budgetary allocations to the Health Ministry for palliative care services.

• Scale up training of palliative care human resources and integrating palliative health care service professionals into the mainstream public service structure.

The Health Sector Development Plan 2016 – 2020 by the Ministry of Health shows that hospice and palliative care services are being offered in only 4.8% of the hospitals in the country. The African Palliative Care Association (APCA) Atlas of 2017 also revealed some gaps in policy, education, service delivery, access to medicines and data collection.

Whereas research by Hospice Africa Uganda shows that majority of the palliative care patients desire to die at home, the dominant health care arrangement in Uganda does not emphasized home care. Instead, the sick have to travel long distances or be transported to health facilities.

The standalone hospices which would fill this gap are few, scattered and greatly under resourced. They survive on minimal contributions by their founders, individual member’s donations and foreign aid which makes some of their programs unsustainable.

The WHPCD 2018 Flier from PCAU 

The Palliative Care Association of Uganda is also urging the government to put in place practical steps for the implementation of the 2014 World Health Assembly ((WHA) Resolution on the strengthening of palliative care as a component of integrated service at all levels within the continuum of care.

All stakeholders including government and civil society actors need to work together to realize action on these recommendations. Whereas the field of palliative care is still developing in our country, freedom from pain is a fundamental human right. No one ought to die in pain and suffering due to long term illness in the era of palliative care. Everyone deserves dignified care at end of life.

The WHPCD 2018  gives us the opportunity to come together as partners and friends share notes, talk about our services to humanity, strengthen our collaboration and networking, advocate for palliative care together and also have fun.  I mean, you could come along with your entre family. There will be some juice and all that. I hope you come. When you do, please let me me you read this here.