The real role of hope in fight­ing dis­ease

US on­col­o­gist’s ex­pe­ri­ence points to the power of an un­der­rated hu­man emo­tion, writes SHEREE BEGA

Weekend Argus (Saturday Edition) - - LIFE -

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.”

PIC­TURE: MATTHEWS BALOYI/AFRICAN NEWS AGENCY (ANA)

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.

Jerome Groop­man

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