Scaling up and integrating palliative care for people living with HIV in Kenya

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Scaling up and integrating palliative care for people living with HIV in Kenya

19 October 2012

US congressman Jim McDermott presents the Red Ribbon Award to the representatives of the Kenya Hospice and Palliative Care Association during the International AIDS conference in Washington, 25 July 2012.
Credit: UNAIDS/Y.Gripas

Palliative care is the provision of care and treatment services for patients suffering from life-threatening or terminal illness, including AIDS. These services are improving the quality of life of many Kenyans and their families but it hasn’t always been like this.

In 1990, Kenya’s capital Nairobi opened its first hospice to provide pain management services to patients but even then, many of them were merely sent home with little options or hope for improvement in their health condition.

Twelve years later, health care workers around the country recognized the need to significantly increase the access to palliative care services and, in August 2002, created a national association representing all of the hospices and palliative care units in the country. They established the Kenya Hospice and Palliative Care Association (KEHPCA) which was registered in November 2005 and became fully operational in February 2007.

Since their establishment, KEHPCA saw the number of hospices in Kenya grow from seven in 2007 to 23 in 2010, and the palliative care units increased from four in 2007 to 21 in 2011.  KEHPCA’s dedicated staff and volunteers, through its member hospices and palliative care units, managed to increase the number of patients reached by hospices and palliative care units from 7 000 per year in 2007 to an estimated 30 000 patients in 2011.

“When the palliative care first came to see me, I had been discharged from the hospital to ‘go home and die’,” recalled Fred, a 42 year old labourer from Kibera and living with HIV. “I was hopeless, in pain, my lower limbs were covered in wounds, my family was miserable and at a loss on what to do, and I had given up hope.”

According to Fred, the palliative care team treated him with compassion, managed his pain and treated his wounds, and as a result his health begun to improve. “Now I am able to live a normal life. The team has made it possible for me to see my children grow and be there for them,” added Fred.

Integrating of palliative care in the health care system

In a country where up to 27% of hospice patients depend on palliative care, KEHPCA continued to advocate for the integration of palliative care as one of the care options in the Kenyan health care system.

KEHPCA’s partnership with the Ministry of Medical Services and the Ministry of Public Health and Sanitation allowed for palliative care to be effectively integrated into 11 provincial hospitals. The partnership also seeks to integrate the services in additional 30 level four (district) hospitals over the next two years.

Our vision is quality palliative care for all. But this cannot be achieved without us working together as a nation to fully integrate palliative care services into our health system

Dr Zipporah Ali, Executive Director of KEHPCA

“Palliative care is an important aspect of care for people living with life threatening illnesses and should be integrated into our health care services, so that all who need it can have access to it, even at the grassroots level,” said Dr. Izaq Odongo, Senior Deputy Director of Medical Services in the Ministry of Medical Services. “We are working in partnership with KEHPCA to ensure that this will one day be accomplished.”

Palliative care providers do not solely concentrate on addressing the physical needs, such as relief of pain, but rather weight is given to a holistic care in ensuring the psychological and emotional well-being of the patient. “We have seen many documented benefits of good palliative care which include improved quality of life of the patients and their families, reduced stay in hospital beds—hence reduced hospital expenditure, prolonged life and a dignified pain-free death when the time comes,” said Dr Zipporah Ali, Executive Director of KEHPCA. “Our vision is quality palliative care for all. But this cannot be achieved without us working together as a nation to fully integrate palliative care services into our health system,” she added.

Training health professionals on palliative care

In 2007 KEHPCA extended its services to training of health care professionals on the fundamental principles of palliative care to expand services and reach more people in need.  To date, the association has successfully trained more than 1 500 health care professionals.

“The hospital health care workers that were trained by KEHPCA are able to provide palliative care services, they have started a palliative care unit in the hospitals and are adding value to the hospitals’ work,” said Dr Muli, Medical Superintendent of Embu Provincial Hospital. “This has made a big difference to our patients.”

KEHPCA has also worked to increase the availability of training on palliative care in the country’s medical training schools. Over the past two years, it has worked with 17 major training institutions in Kenya to include palliative care into their curricula. The Nursing Council has added 35 units of palliative care to the core curriculum for the Bachelor of Science in Nursing and Kenya Medical and Training College (KMTC) has added 12 hours of palliative care to the diploma in nursing course. Through support from the Diana Princess of Wales Memorial Fund, KEHPCA is currently working with KMTC to start a higher Diploma course in palliative care in 2013.

“There is a need to train critical mass due to the high number of patients needing palliative care services,” said Dr Zipporah Ali. “Kenya faces the high burden of both infections diseased and non-communicable diseases. We need to be ready to deal with this and the diploma course at KMTC will help make a difference.” 

Red Ribbon Award

Since its establishment, KEHPCA has been working to scale up palliative care to reach every terminally-ill patient in the country in need of care with high quality and accessible services.

At the XIX International AIDS Conference that took place in Washington D.C. in July 2012, the organization received the Red Ribbon Award for their outstanding community work in the response to AIDS.

“With the help of all our partners, we will continue to ensure that palliative care services are accessible to patients all over the country,” said Dr Zipporah Ali. “I wish to thank the Red Ribbon Award for recognising the work we do, and look forward to a good working relationship to ensure that our vision is achieved.”