Challenges plaguing palliative care in Kenya

Caroline Okere was introduced to palliative care in June 2017 when her mother was diagnosed with a rare form of cancer that affected the left side of her face. 

The family turned to friends, family, and church members to raise funds to facilitate the woman’s treatment in India. This was a turning point for Caroline, who had to close her clothing business to focus entirely on her mother’s treatment.

In India, after consultations with several specialists, the family was given a heart-wrenching message. The doctors explained that her mother's condition was complex and required immediate surgery. They informed Caroline that her mother’s jaw had locked, preventing her from opening her mouth, and that her left eye might need to be removed. 

The surgery

“That night, I was unable to sleep thinking how my mother would look like after the surgery. I hesitated to sign the consent forms, prompting my mother to express her frustration, saying, "Caroline, I am the sick one. Just help me out."

The surgery lasted 12 long hours in what Caroline describes as one of the most agonising days of her life. Her mother recovered and was moved to the intensive care unit for a week before being transferred to a ward.

 Yet, the challenges were far from over. 

After spending 10 months nursing her mother back to health, she returned to Kenya only to find herself once again facing the difficulties of caregiving alone without any formal counseling or psychosocial support.

Caroline’s journey through the harrowing experience of her mother’s cancer diagnosis and treatment serves as an entry point into understanding the systemic issues plaguing palliative care in Kenya.

According to Kenya Hospices and Palliative Care Association (KEHPCA), each year, more than 800,000 Kenyans have life-limiting illnesses, but only about 14,552 receive necessary services. Alarmingly, fewer than five per cent of children requiring palliative care have access to it.

According to experts, with non-communicable diseases such as cancer and diabetes on the rise, the demand for effective palliative care is set to increase.

At a recent World Hospice and Palliative Care Day event, Dr Timothy Olweny, the chairperson of the National Cancer Institute, highlighted the glaring gaps in awareness and accessibility of palliative care in Kenya. 

"We celebrate our achievements, but we have a long way to go," he remarked, adding that many families remain unaware of the resources available to them.

According to David Musyoki, executive director of KEHPCA, palliative care is essential not only for cancer patients but also for anyone facing chronic, serious, or life-threatening conditions, but unfortunately, the focus in Kenya has predominantly been on cancer, neglecting other illnesses that require compassionate care. 

“This narrow perspective limits the support available to a significant portion of the population,” he said.

Dr Olweny emphasises that achieving Universal Health Coverage in Kenya is impossible without addressing the needs of those requiring palliative care, advocating for a coordinated approach that includes adequate resources—both human and financial—to meet the growing demand for these services. 

"We need to streamline our healthcare system and optimise the resources we have," he states, suggesting that technology could play a role in enhancing access.

Mr Musyoki further highlighted the existing disparities in service provision. 

“Currently, only around 106 facilities in Kenya offer palliative care, a mere drop in the ocean compared to the estimated 800,000 people in need.”

According to Caroline who now works as a caregiver and cancer advocate, patients face profound challenges. “Many lack access to essential medications, particularly for pain management. Basic needs like diapers, food and even rent become significant burdens for families already under stress,” she adds.

She recalls borrowing money for her mother’s diapers, a stark reminder of the economic strain that often accompanies chronic illnesses.

For caregivers like Caroline, the journey can be equally challenging. “We often face emotional and financial hardships while navigating a complex healthcare landscape,”she says, noting that throughout her experience, she found herself isolated, lacking the support that could have made her caregiving journey more manageable.

But despite the challenges, Caroline emerged with a newfound sense of purpose. After her mother’s death, she vowed to become involved in the cancer advocacy space. 

“Over the past three years, I have participated in support groups, gaining insights into how other families cope with non-communicable diseases. I even pursued training in counseling, equipping myself to offer psychosocial support to others in similar situations.”

According to Dr Olweny, while the National Cancer Control Strategic Plan 2023-2027 aims to strengthen cancer prevention and control efforts, there is a pressing need for focused attention on palliative care.

Mr Musyoki calls for public and private sector collaboration to create a more robust network of palliative care providers. "We must ensure that every sub-county hospital has access to palliative care teams," he emphasises. 

Dr Olweny echoes this sentiment, stating: "We need to unite—healthcare providers, policymakers and the community—to ensure that palliative care is recognised, adequately funded, and woven into the fabric of our healthcare system."

According to Mr Musyoki, the integration of palliative care into national health policies is vital to addressing the needs of patients and their caregivers, ensuring that no one has to face these challenges alone.

“In the pursuit of health equity, we must prioritise palliative care as an essential component of our healthcare system, offering compassion and dignity to all.”

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