There is no better antidote to bad news and some doctors do not know how to sugar-coat it. PHOTO | FILE
‘‘The patient on bed 12 is HIV positive.”
Cathy Mwende*, 62, lay still on the cold bed pretending to be asleep as a doctor and those around spoke about her status. She listened on.
That was how she knew her status in 2001, laid bare in the open.
She tells the Business Daily: “They said it in English, assuming that I did not understand. Perhaps thinking because I was blind, I was illiterate as well. It shocked me, I couldn’t ask anything.”
That was 13 years ago but that moment hurts her to date.
She was not counselled about her status or advised how to disclose to her family. She consequently denied her status and would shun any discussions on HIV.
Are doctors ever taught how to tell patients they are not going to get well? Or do they ever empathise and understand how devastating medical reports physically pierce?
There is no better antidote to bad news and some doctors do not know how to sugar-coat it. Some toss too many medical terms at patients as they fidget in their seats, others stare, tongue-tied until the patient guesses right.
For Wanjiku Kamau’s family, the news of their father, 62, being diagnosed with pituitary adenoma — a macro brain tumour behind the nose in the brain’s pituitary gland at an advanced stage was shocking.
The tumour is hard pressed on the optical nerves hence blocking light transmission to the brain, to allow the patient to perceive light. The probability of regaining sight is 70 to 30 per cent.
But it was more unsettling, how their aged father, who at this point had lost his eyesight due to the tumour, was made aware of his illness.
A neurosurgeon at Kenyatta National Hospital (KNH) broke the news, to the patient, in what Ms Kamau says was “uncouth” even as he was made aware the patient did not know of his diagnosis.
“You have a brain tumour and it is very big. I need to open up your head to drain the fluid first before removing the mass, this should be done by tomorrow,” she cites the doctor telling her father.
As a result, the patient’s pressure shot up and his condition worsened. Though the surgery was urgent, other doctors — on seeking second opinion — advised against rushing him to theatre as his condition was unstable.
The patient begged his family not let the doctor who broke the news to him touch him.
These are among countless other stories of patients whose right to information on their sickness and treatment was either infringed upon, abused or delayed.
However, for Dr Esther Cege Munyoro, the head of pain and palliative care unit at KNH, says it is important that doctors disclose to their patients, tactfully, about their illness and available treatment.
However, she admits, this is not something she learnt during her studies at the medical school.
“You can never make bad news, good news but you can make it bearable. Be at eye level with them, don’t tell a patient when he or she is lying on the bed or engaged in something else,” she says.
Dr Munyoro adds that doctors use the Spikes protocol — composed of six steps — to break unfavourable information to a patient about their illness.
It involves ensuring the patient has a strong support system such as family members when sharing the news. ‘‘We ask that they are accompanied by a family member,” she says.
The guideline consists gathering information from the patient, transmitting the medical information, providing support to the patient and eliciting the patient’s collaboration in developing a strategy or treatment plan for the future.
Oncologists, oncology trainees, and medical students who have been taught the protocol have reported increased confidence in their ability to disclose unfavourable medical information to patients. Directions for continuing assessment of the protocol are suggested.
Dr Munyoro says it is now a “very recent course given to medical student and hospital staff as part of basic training”.
For patients who in are denial, let them be, she says, adding that ‘‘is the only coping method otherwise they can harm themselves”.
Further, she says, doctors should ensure that the diagnosis is written down as patients may not hear anything else after a diagnosis.
“When you tell someone their child has chronic disease such as cancer (even as 90 per cent of children cancers are curable), they may shut down and miss out on the bit on available treatment. Write it down for them for a follow-up on the treatment.
“Use both verbal and body language and let them know you care for them. At times, be silent if you need to,” she says.
Dr Munyoro says some myths make it difficult for people to take up news on their diagnosis.
“Some people believe that people die quickly because they were told of their illness. That is not true, by knowing it gives you a chance to plan on the next step, the treatment available and this can greatly improve the quality of the life of the patient,” she said.
These are sentiments that Joyce Amondi, 19, understands too well. She knew of her HIV status while in Form Four after a series of illnesses and her diagnosis came to her by surprise.
“Knowing my status when I did was a significant turning point because it ensured I took, and still take, my drugs faithfully. It has strengthened my resolve for adherence to treatment and positive living,” says the peer educator who works with HIV positive youth.
