The real role of hope in fighting disease
US oncologist’s experience points to the power of an underrated human emotion, writes SHEREE BEGA
IN THE past few months, Tendai Kiwa has started to call his teenage son, Morris, the monster. His son doesn’t mind; he likes his new nickname. “On my phone, Morris’s number is listed as the monster,” said Kiwa, with a gentle laugh. “He knows the monster defeats sickness; that the monster is strong.”
Both Morris, 14, and his father, a part-time carpenter who lives in Johannesburg, believe he will survive the acute myeloid leukaemia, a rapid-spreading cancer of the blood, he was diagnosed with a year ago.
“I do have all the hope he will beat this disease. I walk around with hope. I wake up with hope. Just having my son around is something miraculous.”
Morris’s steadfast dream of his future – to become a doctor – shows his courage and resilience, said his father.
“I’ve been with him as he has had lumbar punctures. It’s something incredibly painful, but he pushes through. The same with the chemo. It’s very hard when your child has a life-threatening disease, but he always talks about his future.
“There’s good days and bad days, but he’s just a joy to have around.”
Why do some find hope, despite battling severe illness, but others don’t ? And can hope change the course of an illness, helping patients heal?
Dr Jerome Groopman thinks so. After years of studying the recovery of his patients, Groopman, the Recanati Professor of Immunology at Harvard Medical School and one of the world’s leading cancer and
Aids researchers, believes hope plays a real role in recovery from life-threatening illnesses and well-being.
Over the years the scientist has set out to delineate a biology of hope, intrigued by the changes that happen in the brain and body when sickly patients chart a hopeful path to the future.
“For all my patients, true hope has proved to be as important as any medication I might prescribe or any procedure I might perform,” he writes in his 2003 best-seller, The Anatomy of Hope: How people prevail in the face of illness.
This week, to celebrate Slipper Day, the Reach for a Dream Foundation flew the US oncologist and his wife, Dr Pamela Hartzband, both specialists at the Beth Israel Deaconess Medical Centre, to talk to doctors and nurses in Joburg and Cape Town about the importance of hope.
“Hope is one of our central emotions, but we are often at a loss when asked to define it. Many of us confuse hope with optimism, a prevailing attitude that things turn out for the best,” Groopman writes.
But hope differs from optimism. “Hope does not arise from being told to
‘think positively’ ... Hope, unlike optimism is rooted in unalloyed reality.”
In the face of often incredible suffering, sustaining hope takes courage, he said. “Hope is the elevating feeling we experience when we see – in the mind’s eye a path to a better future... Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to surmount them.”
For over 30 years, Groopman practised hematology and oncology, caring for patients with cancer, blood diseases, HIV and hepatitis C. At times, he gave the “customary nod” to hope, but like him, it was seen by many in the medical fraternity as a “dirty word” because it wasn’t hard science.
“During much of that time, at the bedside and at the laboratory bench, I failed to consider the impact of hope on my patient’s illness,” he writes. A vast amount of popular literature contends that positive emotions affect the body in health and disease, much of it vague, unsubstantiated and “merely wishful thinking”.
“These books depict hope as a magic wand in a fairy tale that will by itself miraculously restore a patient.”
As a scientist, he “fled the fairy tale claims of hope”.
It was only when he was confronted with his own “catastrophic” back injury – in the midst of the “hopeless” epidemic of Aids deaths in the early 1980s in the US – that he began to seek out the authentic biology of hope.
“Researchers are learning that a change in mindset has the power to alter neurochemistry. Belief and expectation – the key elements of hope – can block pain by releasing the brain’s endorphins and enkephalins, mimicking the effects of morphine.”
In some cases, he writes, hope can have important effects on fundamental physiological processes such as respiration, circulation and motor function.
Hartzband explained how there’s a powerful biology to belief and expectation.
“There’s been a lot of study recently about placebos and the placebo effect. That is based on the expectation of an improvement, which is similar to hope, approximates hope.
“So if you look at studies where they have a no-treatment group, a few people have improvement in their disease usually. If you have a placebo group, a much higher proportion of patients improve. Now, you’ve specifically chosen an inert substance or a sham surgery, something that doesn’t work and yet why are all those people getting better?
“It turns out, studies in the past 10 years have shown that there’s an increase in dopamine in the brain and the feel-good chemicals. In Parkinson’s disease for example, which is characterised by the depletion of dopamine in the brain, there’s a strong placebo effect, where there’s an improvement in muscle stiffness and gait.”
Over the years, Groopman has learnt the difference between true hope and false hope. At times, he acknowledges he “foolishly thought the latter was justified”.
“False hope is when you have colon cancer, but I tell you ‘don’t worry, it’s in your liver, we have treatments for you’. It sounds to a lay person like we have a cure. Then what you do is take away the agency of a person, the person’s capacity to make decisions over time.”
True hope “has no room for delusion”. Similarly, he pointed out, telling those with breast cancer to think positively to wipe out the disease, is cruel. “You believe that having a negative thought leads to your demise.”
He writes how in 1979, while training for the Boston Marathon, he ruptured a lumbar disc. For years, he would be “frozen in a prison of pain” until in 2000, when a specialist at a rehabilitation centre told him to stop worshipping the “volcano god of pain. He explained how my hopelessness was increasing my pain and the fact that my muscles were becoming so debilitated. The only way to get out of it was to instill a sense of hope”.
“He brought me into a room where people had similar conditions. There, this little old lady who was five feet tall and 50 years older than me, was lifting a crate filled with lead bricks. It showed a concrete realistic possibility, a path that wasn’t guaranteed.”
He recognised that only hope could have made his recovery possible. “You need to push forward and through it. You need someone to show you the path and believe you have the capacity to reach a better future. That’s hope.”
The couple remembered the horror in the early 1980s, of treating the first young
Aids patients in California, dying from “weird” cancers. “There was nobody living in that group. I felt so hopeless. But to me there was great hope in science... Who would have known that there would be six drugs combined in a cocktail that would radically change the survival rate of Aids patients?
“We’ve just discovered in the past few years after 120 years of failure, how to trigger the immune system to attack some cancers. Sometimes, diseases are incurable... but one cannot predict the rate of scientific progress.”
Julia Sotiriankakos, the chief executive of the Reach for a Dream Foundation, said hope is a real factor in cancer treatment for her NGO, which works to provide hope to children fighting serious illnesses.
Children like Bonnie Suckling’s son, Jed. There’s a tattoo that runs across her back. It reminds her: “Let’s make today the funniest day ever!” It’s a philosophy that Suckling, a Randburg-based gym instructor, tries to live by. She got the tattoo for Jed, diagnosed with a terminal brain tumour at 4.
“He had such an amazing zest for life, as terminal kids do,” she said. “I remember how just after he had brain surgery, he would race down the ICU centre in his little black scooter with the drips hanging behind him.”
Jed died in July 2011, just before his seventh birthday. “He was 6 years, 8 months and 21 days old.”
His parents strived to make every single day “bright and happy” for their only child.
Suckling was moved this week as she listened to one of Groopman’s talks. “I was thinking how hope carried me, as a parent. My son was terminal at diagnosis... As a parent you never accept the diagnosis that your child is going to die.
“You just need something to hold on to, just so you can survive your child going through an enormous amount of torture, pain and trauma. I don’t think I would have the strength and the capacity to deal with Jed’s illness and his treatments, if it wasn’t for the fact that I had a little bit of hope.”
Morris Mdlongwa, 14, with his dad Tendai Kiwa at their home in Johannesburg. Morris suffers from leukaemia and is recovering at home under his father’s care.