In Kenya, once
a person has been declared brain dead, you can’t sign a death certificate until they are off the life-support machine.
Dead but alive. That was the status of Kenyan mask-vendor
Boniface Kariuki, whom doctors declared brain dead last week.
Kariuki spent nearly two weeks on a life-support machine,
before his family was
told by doctors that his heart was still beating but his brain had ceased to
function.
“Mwangi is confirmed brain dead. We know what it means.
We are just waiting for the doctor to tell us he is no more,” family
spokesperson Emily Wanjira said on Sunday.
The family later on Monday confirmed he was off the life
support machine, hence dead.
“Boniface is no more. We have just viewed his
body,” Wanjira said on Monday.
So what is brain death, and does it mean a person is
actually dead?
The definition of death in Kenya shifts dramatically
depending on whether you ask a doctor, a lawyer, a religious leader or a
community elder. And the controversy is not unique to Kenya. The idea of brain
death is currently facing its greatest challenge
since its conception in the 1960s.
This definition of death matters. It influences decisions
around life support, grieving, court cases, and funerals among others.
Dr Ahmed Kalebi, the principal pathologist and CEO at Dr Kalebi Labs (DKL) explains that in all
definitions, there a point of permanence, a cessation of life.
The question is, how do you define that permanent cessation
of life?
There are two ways doctors decide if a patient is dead: One is when the heart and lungs stop working. The other is when the entire brain has stopped working (brain death).
But Dr
Kalebi says brain is surest marker of life and death. “Stopping
breathing is not death because someone
can be put on a machine. The heart stopping is also not death because
you can be put on mechanical heart lung machine,” says Dr Kalebi, who is also a
board member of the Indipendent Medico-Legal Unit (Imlu).
“But brain function is irreversible and is usually the final marker of death. If
someone’s heart and lungs have stopped but brain is active, they’re alive but
if you’re brain dead but your body is functioning, you’re clinically dead.”
Brain dead
patients do not hear or feel anything, including pain.
This is
because the parts of the brain that feel, sense, and respond to the world no
longer work. They cannot even breathe on their own.
Dr Ahmed Kalebi, the principal pathologist and
CEO at Dr Kalebi
Labs (DKL).
According to the landmark paper Brain Death
Determination: The Imperative for Policy and Legal Initiatives in Sub Saharan
Africa, the concept is clear:
“The concept of brain death (BD), defined as irreversible
loss of function of the brain including the brainstem, is accepted in the
medical literature and in legislative policy worldwide.”
But how do you determine someone is brain dead? Two doctors will run a
series of tests. They both have to agree on the results for a diagnosis of
brain death to be confirmed. These tests are carried out twice to minimise any
chance of error.
“You look at the pupils of the eyes, gut reflex, run an EEG
(electroencephalogram) test to the electrical activity of the brain, and a
breathing test to see if the patient makes any attempt to breathe on their
own,” Dr Kalebi says.
The pupils can be tested simply by shining a torch into both
eyes to see if the patient reacts to the light.
Gut reflext can be tested by inserting a thin, plastic tube
down the patient’s trachea to see if they gag or cough, while for breathing,
you disconnect the person from the ventilator briefly to see if they make any attempt to breathe on
their own.
Once declared
brain dead, patients have “100 per cent mortality”, they cannot recover
even if their hearts keep beating on ventilators.
“But once
a person has been declared brain dead, you can’t give a death certificate until
heart and lung stop, so
until the life-support machine
stops,” Kalebi says.
Legal definitions of death vary
worldwide. In the US, the Uniform Determination of Death Act (UDDA) defines
death as: “Irreversible
cessation of circulatory and respiratory functions, or irreversible cessation
of all functions of the entire brain, including the brain stem … in accordance
with accepted medical standards.”
But in Sub Saharan Africa, including Kenya, the picture is
murkier. A person switching off the “life-support” for a brain dead person
might be seen as taking away life.
The 2015 Global Public Health article highlights the
problem: “However, in most of Sub
Saharan Africa there are no legal guidelines regarding Brain Death. Barriers to the development of BD laws exist in countries such as Kenya.
Cultural, ethnic, and religious diversity creates a complex perspective about
death challenging the development of uniform guidelines for BD.”
Nairobi-based public health
lawyer Fabian Oriri
confirms that Kenya lacks a legal framework that defines or governs the state
and consequences of brain death.
“In the absence of legal clarity, brain death in Kenya is
not legally considered actual death. A person diagnosed as brain dead is often
regarded, in legal and social terms, as still alive although in a state of
total incapacitation, unable to act or comprehend,” he says.
“As a result, this creates a legal and ethical dilemma,
raising questions about whether a medically accepted determination can stand
without legal recognition especially when it involves decisions about life and
death.”
Public health lawyer Fabian Oriri.
Without this legal backing, doctors hesitate to withdraw “life support”, even when brain death is
medically certain. This prolongs care that may be futile, burdens limited ICU
resources, and causes anguish for families.
Dr Kalebi says doctors follow guidelines given by the Kenya
Medical Practitioners and Dentists Council (KMPDC).
“So the
biggest issues becomes who switches off the machine, life support? In Kenya it
has not been defined because we don’t practical cases. KMPDC says the doctors
must consult the family, because of the patient dignity,” he says.
Oriri says in the absence of a clear statutory provision, a
public interest petition may be filed before the High Court of Kenya “to seek judicial
clarification on the legal recognition of brain death, the circumstances under
which it applies, and its broader implications on the legal definition of
death.”
Critics of brain death as actual death say some parts of the brain continue to
function in brain dead people.
For instance, the hypothalamus, which helps manage very
basic functions such as temperature, blood pressure and hormones.
They point to rare cases like Jahi McMath, a 13-year-old
girl who was declared brain dead in 2013 in the US. Her family refused to withdraw life support for
years. She continued to grow and even went through puberty. But she never recovered and eventually
died.
“I’ve never heard of a corpse that underwent puberty
before,” Dr Alan Shewmon, a professor emeritus of pediatrics and neurology
at the University of California, Los Angeles, said in an NPR broadcast in
February last year.
There was
also the case of Adriana Smith, a pregnant US woman who was declared brain dead
in February this year but was kept on life support to continue her pregnancy. She gave birth
via a caesarean section on June 13, and was afterwards taken off life-support.
Dr Stephen Asatsa is a thanatologist – an expert in the
scientific study of death and the practices associated with it. He also
studies indigenous knowledge systems in psychology.
Dr Stephen Asatsa is well-regarded for his studies in thanatology (the scientific study of death and the practices associated with it), and indigenous knowledge systems in psychology.
He says culturally, life often extends beyond a medical
moment. “When you go cultural even physical death is not end, they say death
occurs when the spirit has left. So culturally, human life cannot be reduced to
biology.
“The heart was seen as the centre of human life. Religion
also talks of heart. It was thought to be the seat of soul, spirit. With
understanding of medicine, we know that brain is the centre of life,” he explains.
“If talking to a family of a brain dead patient, I would say
the brain stopped working. So is he
alive or dead? I would accept their view the heart is still there so there’s
life, culturally. Until everything has stopped that’s when we can say death has occurred, to them,”
he says.
He praises the medics at the Kenyatta National Hospital,
because they did not switch off life-support machine for Boniface, even after
declaring him brain dead.
“We cannot remove
culture, but at the same time we cannot dispute medical and legal definitions. There are
places where religion, medical and cultural psychology draw from the same
understanding, but other areas there are differences. We should always find the
areas of convergence.”