What Kenya needs to do to end the taboo of talking about ‘end of life care’

Talking about advance care planning should be seen as part of palliative care. Shutterstock

Discussions about end-of-life care are deeply personal and grounded in cultural and religious values. Advance care planning is giving instructions on your medical care when you are unable to speak for yourself. The Conversation Africa’s Health and Medicine Editor Joy Wanja Muraya spoke to Dr. John Weru about Kenya’s work towards holding this sensitive yet critical discussion.

Why is it important for terminally ill patients to specify their medical care?

It’s important that people apply their minds to what their preferences would be should they become critically ill. This is known as an advance directive – a medical document, written or verbal – that legally communicates what should happen to them in the event that they become critically ill.

The document is used to guide decisions on, for example, life-sustaining treatment like surgery, dialysis, blood transfusions, diagnostic tests, antibiotics and other medications if a person is incapacitated.

For most people in Africa, discussing death is considered a taboo. Talking about advance care planning is therefore seen as a foreign concept. But it should be seen as part of palliative care – the holistic approach to care for patients facing any life limiting illness.

By planning in advance, people can have a timely discussion about how symptoms might be managed as well as how supportive care will be provided.

From the medical professions point of view, a plan offers guidance on when end of life care discussions should be initiated and provides suggestions on the categories of patients that should be considered for a talk on appropriate end of life care.

For example, doctors can initiate discussions once it’s clear that a disease is incurable or when curative treatment fails. These discussions are guided by a number of medical protocols and guidelines. But in Kenya there’s no legal backing to such arrangements. And some religions are against documents being drawn up, or even initiated, by either the patient or a doctor.

What did your study communicate on the use of advance directives?

In our study we analysed 216 records of terminally ill patients admitted to the Aga Khan University Hospital in Nairobi between July 2010 and December 2015. From the study, only 89 of the patients had advance directives while 127 did not.

Our study showed there is minimal use of the advance directive in Kenya even when death is imminent. In contrast, uptake is high in countries in Europe and in the US.

This could be attributed to the lack of laws governing advance directives in Kenya, although cultural factors may also have been responsible.

Patients with cancer recorded the highest number of those who had filled in the document.

Most of those analysed were non-Catholic Christians (65.42%) or Muslims (17.29%). But we found no significant association found between religion and advance care planning. We also didn’t find any significant difference between choices made by men and women.

What are the gaps in Kenya and what can be done?

There’s no law in Kenya covering advance directives. It’s only practised where institutions have policies in place. For example, the Aga Khan Hospital put in place a policy on end of life care in 2012. Although some other institution may not have protocols and policies in place, some report practising advance care planning.

There is an urgent need for clear legal as well as institutional policies and guidelines on advance directives and their implementation. There should also be national policy guidelines.

Advance directives should fit across various diseases, age groups, religions and cultures.

Health institutions should embrace and integrate advance directives as part of the basic health care especially for patients with progressive chronic illnesses.

Education across the board is key to improving the acceptance of the advance directive. This can be driven by the clinicians, patients and their families. But health workers need to approach the topic without attracting cultural and societal conflict.

What can be done to improve these gaps?

Integrating palliative care into general care for patients with chronic progressive illnesses will significantly increase the use of advance directives.

And early referral to palliative care services will lead to initiation of advance planning and encourage discussion on advance directives.

Education is also critical to bringing patients, families, policy makers and doctors on board.

Patients and families need to be told about the importance of reducing family distress and conflict. In particular patients with advanced illnesses such as heart, kidney, dementia and liver disease need to consider planning ahead as the trajectory of these diseases is similar to cancer though the time lines differ.

Once the wishes of a patient are known, future conflicts between family members about what sort of future treatment might be needed and where it should be administered can be lessened.

One common misconception that needs to be addressed is that filling in the advance directive means giving up on a patient’s recovery. It should instead be seen as a patient’s right.

Communication skills – particularly among health care workers - are critical when initiating any discussions on the issue. And finally, we should encourage more physician to patient discussions in Kenya.