Lighting
In Africa, the question of end of life centered on the emergence of palliative care
While in France, a law on end of life must soon be presented to the National Assembly, on the African continent, the question of euthanasia remains largely taboo.
The challenge lies in the development of palliative care, which is insufficient or even non-existent in many countries.
A cancer patient, who takes liquid morphine to relieve her pain, sits on her bed during a visit from a palliative care nurse, November 19, 2019, in a village in western Rwanda.
© AP - Ben Curtis
By: Aurore Lartigue Follow
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Are there discussions around the end of life in
Africa
?
As in many regions of the world, the question of euthanasia or assisted suicide is the subject of a fairly consensual rejection from Algiers to Dar es-Salam, and from Dakar to Khartoum, marked by cultural arguments and above all religious, Islam and Christianity – in the majority – highlighting the sacredness of life.
No country has specific end-of-life laws.
In this landscape,
South Africa
is still an exception.
If euthanasia remains a crime in the country, the question of assistance in dying has repeatedly stirred up debates in societies.
A few years before his death in 2021, the position taken by Archbishop and Nobel Peace Prize winner
Desmond Tutu in favor of the legalization of assisted suicide
had caused a certain stir in public opinion.
On the court side, several cases have brought the subject to the forefront.
In 2015, Robin Stransham-Ford, a lawyer suffering from terminal cancer who applied to the Pretoria High Court for the option of using physician-assisted dying, obtained a favorable decision , believing that, in this particular case, the patient had the right to obtain euthanasia or assisted suicide.
But the applicant died just before the decision was rendered, and it was ultimately
overturned on appeal
.
Also read: A brief history of euthanasia and assisted suicide since Antiquity
In 2019, euthanasia made headlines again when Sean Davison, campaigner for the legalization of euthanasia, was given an eight-year suspended prison sentence and placed under house arrest for helping three people to die.
A conviction but no prison time.
“
Clearly, judges do not consider assisted dying to be on the same level as murder with malicious intent
,” points out Willem Landman, co-founder with Sean Davison of the DignitySA association, which fights for the legalization of euthanasia. in South Africa.
In this photo taken on Wednesday April 29, 2015, members of the DignitySA association put up signs showing some of its terminally ill members outside the High Court in Pretoria after a judge ruled for the first time that Robin Stransham-Ford could be euthanized.
The decision will be overturned on appeal.
AP
Since then, other cases have involved patients at the end of their lives without any success.
But the association claims to be preparing a new legal offensive, carried out in its own name this time, to obtain the decriminalization of assisted dying and force Parliament to legislate.
The application must be submitted during the year, specifies Willem Landman.
“
Our central argument will be based on the right to bodily integrity, that is to say the right to freedom to dispose of one's body
,” he says.
But he knows that the road will be long and strewn with pitfalls.
Elsewhere, the local Kenyan press has reported on several occasions cases of terminally ill patients who have gone to Europe to resort to assisted suicide.
And some legal articles have looked at the Kenyan Constitution, but always with a view to stopping treatment or “letting die”, while the Penal Code criminalizes any act of assisting suicide.
Francophone Africa deprived
Although the question of legalizing a form of assisted dying does not seem to arise, the end of life is indeed a subject in Africa.
With the increase in population expectancy and life expectancy, the number of people suffering from cancer is exploding.
According to
The Lancet
, the incidence of cancer has doubled over the last thirty years in sub-Saharan Africa and mortality linked to this disease could double by 2030. However,
palliative care
is sorely lacking in many regions of Africa.
“
In France, we consider that one in five people hospitalized requires palliative care.
In Africa, it is much more because people only go to the hospital as a last resort, when the disease is very advanced, because of the cost
,” explains Benoît Burucoa, president of the International Francophone Federation of Palliative Care ( FFISP), which works for the dissemination of this care defined by the World Health Organization (WHO), as “
an approach to improve the quality of life of patients and their families, faced with problems linked to potentially fatal diseases , whether physical, psychosocial or spiritual
.
The needs are therefore immense, but in regions where health emergencies are numerous, this supportive care does not really appear to be a priority.
Among the obstacles, the first is the lack of knowledge and reluctance which can surround this particular care.
In Africa, “
the
very concept of end of life is not always something accepted.
Until the end, we remain hopeful,
explains Professor Désirée Kulimba Mashinda, head of the Congolese National Association for Palliative Care (ANCSP).
Moreover, we often see patients in our hospitals dying, to whom we continue to install IVs, transfusions, etc.
» Under these conditions, there is no question of creating palliative care units, “
it would be seen as a deathbed and no one would want to go there.
Instead, we create multidisciplinary mobile teams with doctors, nurses, physiotherapists, but also priests or pastors.
»
In the DRC, not everyone is yet familiar with palliative medicine, we already need to “
raise awareness
”, recalls Professor Mashinda.
“
In the east of the country,”
he notes, “
some academics have never heard of palliative care!
»
Rwanda, pioneer
When he started, Christian Ntizimira, a Rwandan born in the east of the Democratic Republic of Congo, also knew nothing about palliative care.
After his studies in Kigali, he dreamed of being a surgeon.
“
After the genocide, I thought it was the best way to contribute to the health reconstruction of the country.
» Until his path crossed that of a 24-year-old young man suffering from terminal liver cancer.
“
It was pain like I had never seen, excruciating, which was accompanied by a lot of moral suffering.
His mother asked me on my knees to do something.
But at that time, I was afraid to prescribe morphine and I didn't do anything.
» The young practitioner saw this experience as a failure.
“
I said to myself: what’s the point of being a doctor if I can’t help relieve the suffering of patients and loved ones?
» His path forked and he left to train in palliative care in the United States.
Under his leadership in particular, Rwanda was a pioneer in the integration of palliative care into the public health system in 2011. Thanks to this, in 2013, Rwanda began producing its own morphine syrup.
Painkillers are now on the list of medicines considered essential by the Ministry of Health, and available free of charge.
“
Rwanda also trained all district hospitals and university hospitals,”
explains Christian Ntizimira.
The ministry's plan is now to bring palliative care to the level of primary health care, that is to say at the community level, so that no one is isolated in the face of their illness.
»
Pragmatic approach, higher level of training, less bureaucracy... Overall, English-speaking countries are several steps ahead of their French-speaking neighbors.
South Africa, Uganda, Botswana, Zimbabwe, Kenya, Tanzania and Rwanda have in recent years adopted a public health policy on palliative care.
In French-speaking Africa,
Benin is the only country to have had a national palliative care program
since 2018. Even if the president of the FFISP says he is concerned about the evolution of Rwanda, where, according to him,
“the needs have evolved and funding has not increased
”, he recognizes that “
this has nothing to do
” with West Africa, where he considers the situation “
catastrophic
”.
Difficult access to morphine
Opioids, such as morphine, are essential in the management of pain.
Access to essential medicines and their financing in countries where there is generally no social coverage is one of the main challenges in palliative care.
Because while the consumption of opioids has doubled globally, driven mainly by Western consumption and in particular American overconsumption, in Africa, the use of these powerful analgesics has stagnated at abnormally low levels.
“
Even if the perception of palliative care has changed,”
believes Christian Ntizimira,
“there is still this myth around morphine which persists in Africa.
It is seen as hastening death.
It will take a long time to break it.
» Considered a narcotic, it is subject to very strict regulations which further worsens its accessibility.
Liquid morphine made from powder has changed the situation in many African countries.
AP - Ben Curtis
On this front, all our interlocutors emphasize, the continent has seen major progress in recent years with powdered morphine reconstituted into an oral solution.
“
The big advantage is that we cannot use it for drug addiction,”
analyzes Benoît Burucoa, “
and that it costs 50 to 75 times less.
» The opioid program set up in Benin should make it possible to distribute the drug in oral solution throughout the country.
But for now, only “
16.5% of patients needing palliative care have access to oral morphine
,” according to a
May 2023 report
.
The lack of qualified personnel and training, particularly to prescribe morphine, is also a handicap.
Uganda, through the NGO Hospice Africa, has become a training platform for around ten years, both for English-speaking and French-speaking countries.
Sylvia Dive is a nurse and trainer, she coordinates the palliative care program for French-speaking countries.
Originally from the DRC, it was when she had to go to Uganda to accompany a loved one suffering from cancer that she had a revelation: “
He died peacefully
,” she remembers.
The nurse then decides to train in palliative care.
Coming from Senegal, Togo, Benin, Mali and even Ivory Coast, the latest class benefited from theoretical courses over three months remotely then three weeks of internships.
Non-certificate, the training is more of an “
initiation
”, indicates Sylvia Dive.
“
They can also see how we make our own morphine.
» Uganda was one of the first to get started.
It is also one of the first countries where nurses were able to prescribe morphine, recalls the trainer.
But she does not hide the difficulties in developing a palliative care offer in this area.
“
It really takes a lot of sacrifices
,” she concedes, even if the case of Benin “
gives a little hope
.”
Adapt to needs
Since 2014, Hospice Africa Uganda has trained just over 300 professionals from West Africa (doctors, nurses, psychologists, pharmacists, etc.).
Training is also where the problem lies.
There is a DU (university diploma) in Douala, Cameroon, lists Benoît Burucoa, president of the FFISP, also president of the Association for the Development of Palliative Care in Africa (Adespa).
This is the third promotion, which makes a total of 45 people, he explains.
“
Now we have to make it sustainable and make it autonomous.
» Two others are planned, one in Benin and the other in Bobo Dioulasso, in Burkina Faso, for the end of the year.
And the DRC has integrated a palliative care training module into the three years of nursing training at the Institute of Health Professions (IMS) in Kinshasa.
Apart from that, you have to make do with a few hours of courses on pain or palliative care at medical school, like in Congo-Brazzaville or Senegal.
Or even nothing at all.
Sustaining programs and funding is a perpetual challenge on the continent.
“
It’s a medicine that doesn’t cost much: we can do very good work and provide good palliative care at a cost that is not at all that of cancer or obstetrics
,” nevertheless pleads the president of the FFISP.
In the absence of efficient palliative care, does the question of assistance in dying arise to alleviate unbearable suffering?
Officially, in any case, there is no question of talking about it.
“
Even stopping treatments is not accepted here
,” recalls Professor Désiré Kulimba Mashinda, in the DRC, “
so we are sometimes not far from therapeutic relentlessness.
»
“
The expression
“end of life”
does not translate into Kinyrunda,
underlines Christian Ntizimira, refuting the idea of taboo around the questions of euthanasia and assistance in dying.
They say
“until the end of life”
.
It's not that people don't talk about death.
That’s because death is part of life.
”
The suffering no longer remains bearable, our interlocutors concede.
“
In Africa too,
underlines Benoît Burucoa,
patients speak of their death as a deliverance because of the unrelieved suffering they endure.
»
For Christian Ntizimira, the challenge also lies in adapting palliative care to local practices.
He founded a research center in Kigali, the African center for research on end of life care (Acreol), to integrate this “
sociocultural
” aspect.
“
We cannot transpose palliative care from Boston to Rwanda,”
he explains.
So we need all this research to understand what model of palliative care is needed here.
For example, unlike France, where we can deploy palliative care in nursing homes, here people stay at home.
The whole community takes care of the sick person.
» Hence mobile multidisciplinary teams to go to homes.
“
The family, the community is there,”
he insists, “
to make sure that the person does not feel less worthy because they have terminal cancer.
»
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