How terminally ill patients prepare for death

Dr. Esther Munyoro gives a talk on optimizing cancer pain management during the KNH and University of Nairobi Cancer Symposium. [Jenipher Wachie/Standard]
The recent deaths of Bomet Governor Joyce Laboso, Kibra MP Ken Okoth and Safaricom boss Bob Collymore, who were terminally ill, came with reports from relatives and friends that they were prepared for their final journey.

In one instance, it was revealed that one had requested not to be placed on life support.

While the three died of cancer, two of them had something else in common — advance directive — a wish given by a patient on how they want to be handled as death approaches.

It is a practice that Esther Munyoro, a specialist in palliative care at Kenyatta National Hospital, says is slowly gaining acceptance.

It involves one putting in writing, verbal or submission of an audio recording how they want to be taken care of in preparation for death.

Every hospital has its own version of the document that may involve a lawyer; to authenticate it.

At times, says Dr Munyoro, the directive can be confidential between the doctor and the patient.

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As disturbing as it is, it is the painful reality that terminally ill patients have to face when all possible medical intervention has failed.

Reversible conditions

While life support is always an open option, Munyoro says it should not be the case. “You should never get to the Intensive Care Unit (ICU) if your condition is not reversible,” she says, adding that doctors are obligated to prioritise patients with reversible conditions for ICU.

An irreversible condition is one which has impaired the critical organs of the body: the digestive system, lungs, heart, kidney and the brain.

“However, for the brain, it is debatable since we have cases of people who live forever,” she says. For kidney too, there is dialysis and the option of a transplant.

However, a case like that of Mr Collymore whose bone marrow collapsed after a transplant, would not be reversible even if he was put on life support.

Mr Okoth was also battling multiple organ failure by the time he was rushed to Nairobi Hospital.

A patient in this state is allowed to have an advance directive, which may range from the simplest requests like the choice of food or colour of bed-sheets to complex ones like if they want to continue with treatment.

Their condition is managed by painkillers and steroids if they have trouble breathing.

“We had a woman whose only wish was to have a white wedding and we conducted one at the hospital. There was also a child who had leukaemia who wanted to be baptised. We had to convince the parents and we had the baptism ceremony attended by her friends,” said Munyoro.

This “11th-hour death scene” is so familiar to Munyoro that she reveals she has almost mastered the time when a patient will finally pass away. At times, she advises patients to hold parties to celebrate their achievements as part of their send-off.

Some patients, however, choose solitude and request that the lights in their rooms remain on throughout.

“From experience, I have found that you can easily tell how someone will die. There are those who die immediately everyone leaves the room and those who die when everyone is around them. It usually happens according to their wishes,” she said.

Munyoro said in cases when the advance directive is not available, doctors hold a conference with the family of the patient to inform them of the possible scenarios. For example, the family is asked if they are willing for the patient to be given inotropes-drugs which keep the heart beating.

“Sometimes we start you on a treatment and see it is not working, but you know we can’t withdraw... but then the patient chooses not to go on with the treatment when they see it is not working,” she says.

In some cases, the patient will evaluate the outcome possibilities of the treatment if it works.

“They may look at it and say, if this treatment is actually going to add me just one month, and I can’t go back to the life I used to have, then there is no need for me to take it and sometimes we support those decisions. It is not always that we think these patients are wrong,” she says.

But if the family or the patient wants to be in ICU, even when their condition is irreversible, doctors must oblige.

“You see the problem is sometimes when you die in ICU your dignity is taken away. We have to put catheters, we have to turn you, you are always exposed. There are people who tell me ‘I want to die with dignity’ they do not want their urine or stool removed with tubes,” Munyoro says.

In other countries, like Netherlands and Belgium, if someone has been made aware that they will soon be writhing in bed in pain as they wait for death, they might opt for euthanasia, also known as assisted dying.

This is when a doctor prescribes medicine — mostly anaesthesia in high doses — to help someone sleep through their death to avoid suffering.

Not legal

In Kenya, however, it is not legal, and Munyoro says such practice will interfere with the development of medicine since people will always opt for the easiest way out.

“You can get cancer that totally does away with your digestive system. If you are abroad you can be on intravenous feeds, but they have very many side effects. We do a few of the same here but the patients later die of other things. That is why I say if we have euthanasia, then our health system will not progress,” says Munyoro.

The medic says most times when a patient requests to be euthanised, the first call should be to a psychiatrist.

For Munyoro, the worst place someone can die is a hospital. If the doctor has explained that one’s condition is irreversible, it is better for one to die at home surrounded by their loved ones.

She, however, insists that doctors should never tell a patient that “there is nothing they can do”.

“Even if they are in a bad state and bleeding all over. Control that bleeding and tell them to pray to God so that when they die, they will get to heaven,” she says.

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Bomet Governor Joyce LabosoKibra MP Ken OkothTerminal illnessesSafaricom boss Bob Collymore