According to the World Health Organization (WHO) only one in 10 people who need palliative care are receiving it. It is estimated that by 2060 the need for palliative care will have doubled as the global demand for care for people with life threatening illnesses, non-communicable diseases, and an ageing youth population increases.
In Kenya, approximately 800,000 Kenyans need palliative care every year. Unfortunately, only about 14,552 Kenyans are accessing these services.
Commonwealth Alumnus Zipporah Ali is the founder and former Executive Director of Kenya Hospices and Palliative Care Association (KHPCA). Here, she shares her motivations for and experiences of raising awareness about hospice and palliative care in Kenya and the positive impact of her work for future generations.
Striving to deliver better care for cancer patients
Zipporah started her career as a doctor working at the National Referral Hospital in Kenya, the only public hospital treating cancer patients in the country at that time. During this time, her older brother was diagnosed with leukaemia and was treated at the same hospital. Sadly, he passed away very suddenly and Zipporah was left to reflect on the quality of care and treatment he had received.
“Everything about his illness, his death, everything was just not right. He didn’t know what he was dying from. The doctors didn’t tell him. We [his family] never told him.
“For about one year, I was really low because I just thought I’d failed him as his sister and I’d failed him as a doctor. And I realised that this was happening with every patient that I came across that had cancer, because the same things were going on for all the patients. We [doctors] were not telling them the exact diagnosis because we didn’t want them to feel they’re dying.”
Cancer treatment at this time was limited and Zipporah admits that the treatment prescribed was not always appropriate and that doctors and healthcare workers struggled to control cancer symptoms, including managing patients’ pain.
Without oral morphine and opioids to deliver pain management, the only medication available was an opioid typically used for patients undergoing surgery and not usually offered to cancer patients. Owing to the lack of appropriate available medication, Zipporah and other healthcare workers watched many patients die in pain.
Determined to find a better process, Zipporah came across the Nairobi Hospice, a charitable organisation supporting patients and families faced with life-threatening conditions such as cancer, HIV/AIDS, stroke, organ failure, and congenital anomalies. This was the start of a new career for Zipporah and the development of palliative care in Kenya.
Establishing the Kenya Hospices and Palliative Care Association
On visiting the hospice, Zipporah was inspired by the care she saw being provided to cancer and end-of-life patients.
“The hospice’s motto was, put life into their days, and not just days into their life. And that’s what they did. They controlled people’s pain. They did a lot of counselling. They supported families of dying patients. They did bereavement services. I thought, this is what I would like to do. This is mainly why I became a doctor.”
After volunteering her time and providing locum support to the hospice, they offered her a full-time role as a doctor in 1996 and she continued working at the hospice for 15 years. In 1999, she was promoted to Senior Medical Doctor and became responsible for leading the hospice’s medical team.
During this time, six further hospices were founded in Kenya, largely based in central Kenya. Despite the provision of these additional services, Zipporah stresses many people who needed hospice or palliative care were still not able to reach it.
In 2005, the Nairobi Hospice bought together representatives from each of the seven hospices, and they agreed to register the Association of Hospice and Palliative Care. Due to time constraints and the pressures of their daily lives, the association remained registered on paper only and was not active in achieving its aims of promoting and strengthening hospice and palliative care in Kenya.
Two years later, Zipporah experienced another personal loss which motivated her to re-focus on the aims of the association. In 2007, she left the Nairobi Hospice and founded the Secretariat for the Kenya Hospices and Palliative Care Association (KEHPCA). At the time, Zipporah acknowledges that the global discussion about palliative care and the importance of integrating palliative care into healthcare services may have contributed to her success in securing funding to set up the KEHPCA and take on staff to run the Secretariat.
Promoting the importance of integrated palliative care
Initially, Zipporah met with doctors and healthcare workers at public and private hospitals across Kenya to engage them in discussions on the importance of integrated palliative care. This included reaching out to the Ministry of Health and highlighting the inequity of hospice and palliative care for the patients most in need.
Her work attracted the attention of researchers at the University of Dundee, who approached Zipporah about their plans to introduce a course on palliative care and asked if she could help recruit students from Kenya.
“The University of Dundee asked me to help them with a few logistics here and there, so I said, yes, I’m happy to do that. I sent out the advert to colleagues, people applied, and then after some time, I received an email. Why did you not apply?’
“I said, I’m so busy, I’m running up and down the country. I can’t do a course right now. I’m just too busy. They said, no, please you have to come on this course. Please.”
Zipporah joined the MSc in Palliative Care in 2007, studying on a Commonwealth Distance Learning Scholarship. Upon discovering the content of the first study module, she was pleased to have made this decision.
“And after I joined, actually I was so happy, because the first module that we did was talking about integration of palliative care, and this is something that I have been trying to do and really having a challenge, trying to find out who to talk to at the advocacy level, who to influence.”
Engaging healthcare workers across Kenya
There was very little understanding of palliative care in Kenya at this time, so Zipporah had to focus her attention on both raising awareness of palliative care and developing palliative care services. One of the biggest misconceptions she had to tackle was the idea that palliative care is end-of-life care. This lack of understanding about palliative care had led to doctors referring palliative care patients to hospices at too late a stage for any support or treatment to be effective. There was also a perception amongst the public that hospices were a place to abandon patients whilst they died.
Zipporah approached the Ministry of Health for support and in 2010 they allowed the KEHPCA to work with public hospitals to begin to integrate palliative care services and train healthcare workers.
To support the advocacy work and to set up palliative units, Zipporah secured funding from the Diana, Princess of Wales Memorial Fund and True Colours Trust in the UK, as well as the Open Society Foundation, Hospice Care Kenya, and African Palliative Care Association. This enabled her to grow the KEHPCA and hire more staff to work with hospitals across the country.
In 2012, the Ministry of Health commissioned Zipporah and the KEHPCA to approach a further 33 public hospitals, increasing their reach to 43 out of the 47 counties in Kenya. In the same year, 25 hours of palliative care was introduced into Kenya’s core nursing curriculum, and in 2013, it was integrated in the core curriculum for undergraduate training for doctors. Soon afterwards, KEHPCA introduced a higher diploma course in palliative care at the Kenya Medical Training College (KMTC), the biggest training college for healthcare professionals in the country. This was further supported by funding from the Diana, Princess of Wales Memorial Fund, the True Colours trust and Hospice Care Kenya.
Over the last 10 years, more than 500 nurses have completed the higher diploma and all graduating nurses and doctors have received basic training in palliative care as part of their curriculum. This has ensured that all healthcare workers have a foundational knowledge of palliative care and understand its importance as part of wider patient care.
Transforming public policy on palliative care
Zipporah retired from the KEHPCA in 2021 and is proud of the work she and the Secretariat achieved over 15 years.
“I retired in June 2021. After all that time, I thought it’s time now to let somebody else take over and take the organisation to the next level. I still remain close to KEHPCA and provide support when required. But we achieved quite a lot as an organisation during those years. We were able to have palliative care integrated into our healthcare system, into the training curriculum.”
Addressing her earlier experiences of patient pain management, Zipporah is also pleased to share that the KEHPCA successfully petitioned the government to procure prescription morphine powder for palliative care patients experiencing moderate to severe pain. Another win was the inclusion of palliative care in the Health Bill and the Patients’ Rights Charter
In 2021, as a final project before retiring, Zipporah and her team in collaboration with the Ministry of health launched the Palliative Care Policy 2021-2030. The policy was the first of its kind in Kenya and sought to ensure the provision of timely, evidence-based, holistic palliative care services for in Kenya by guaranteeing access to quality services at every point of demand.
Since the introduction of the policy, palliative care has also been included in all necessary frameworks and strategies for the treatment of cancer and other non-communicable diseases, including the National Cancer Control Programme in Kenya.
Despite retiring from the KHPCA, Zipporah remains an active advocate for palliative care and uses her extensive knowledge and experience in voluntary roles, including as Chair of the Non-Communicable Diseases Alliance of Kenya and as the Vice-President of the African Organisation for Research and Training in Cancer.
“I still do a lot of advocacy in terms of palliative care. Even being the Chair of the NCD Alliance has opened even bigger opportunities for me to talk about the fact that NCDs must integrate palliative care. Because palliative care cuts across any illness that is life-threatening, life-limiting, that can affect a patient’s day-to-day quality of life.”
Advocating for patient care above all else
Zipporah has led significant change in healthcare in Kenya and in raising the importance and integration of palliative care services. Despite this, she stresses there are still challenges to overcome. Advocacy is still needed to ensure patients can access palliative care through the National Health Insurance Fund (NHIF) and as part of universal health coverage, and funding remains an ongoing challenge for healthcare services more generally in Kenya. Zipporah also notes that in north-eastern Kenya, there are no palliative care services available due to security concerns in the region and the traditional nomadic lifestyle of people living in this region.
Looking back over the last 15 years of her work, she cites her achievements in developing palliative care policies and establishing strong networks with the Ministry of Health as her career highlights. In 2018, the University of Dundee awarded her an honorary doctorate for her work and research in palliative care.
“For me, the biggest gain is that it has been recognised as a priority. Palliative care has been recognised as a priority by the government, by the healthcare professionals.
“And even the patients who need it, recognise how important it is, how it can change their life. They know that it’s not going to cure them, but they see the difference when they come to palliative care.”
Zipporah Ali is a 2007 Commonwealth Distance Learning Scholar from Kenya. She completed an MSc Palliative Care at the University of Dundee.
