Fight­ing can­cer: Need for hu­mane ap­proach

If the em­pha­sis, and hence fund­ing, stays de­ter­minedly on find­ing a cure for the dis­ease only, the man­i­fold sup­port­ive care needs of pa­tients will con­tinue to go un­ad­dressed and we will keep iden­ti­fy­ing the gaps with­out fill­ing them

Gulf News - - Front Page - By Ran­jana Sri­vas­tava Dr Ran­jana Sri­vas­tava is an on­col­o­gist and an award-win­ning author. ON THE WEB To post your com­ment, log on to: www.gulfnews.com/opin­ions

Even a cur­sory search will re­veal the leaps of imag­i­na­tion and dis­cov­ery that have made can­cer medicine fas­ci­nat­ing, and in­deed life-chang­ing, for so many pa­tients.

Ioften see pa­tients rang­ing from a sto­ical univer­sity stu­dent to a dev­as­tated father to the frail oc­to­ge­nar­ian who can’t re­mem­ber the day, let alone that he has can­cer — each pa­tient an il­lus­tra­tion of a re­cent Macmil­lan Can­cer Sup­port UK find­ing that it is more com­mon for an in­di­vid­ual to be di­ag­nosed with can­cer than to get mar­ried or have a first child. One in two peo­ple will en­counter a can­cer di­ag­no­sis in their life­time, which is why the re­port says that, along­side mar­riage, par­ent­hood, re­tire­ment and the death of a par­ent, can­cer is now “a com­mon life mile­stone”.

I bear wit­ness to this “mile­stone” ev­ery day, yet I con­fess the re­port is a wake-up call be­cause it has prompted re­flec­tion on the chasm be­tween what medicine de­liv­ers and what pa­tients de­sire.

Even a cur­sory search will re­veal the leaps of imag­i­na­tion and dis­cov­ery that have made can­cer medicine fas­ci­nat­ing, and in­deed life-chang­ing, for so many pa­tients. In the short time that I have been an on­col­o­gist, I have gone from ru­ing that no ef­fec­tive ther­apy exists, to de­cid­ing how best to se­quence an ar­ray of choices. Sure, not all ther­a­pies have de­liv­ered stun­ning re­sults, un­ac­cept­able tox­i­c­ity looms large, costs are pro­hib­i­tive and our suc­cesses are largely con­fined to the rich world. Th­ese are prob­lems to pon­der but they don’t di­min­ish the gen­uine, in­cre­men­tal gains in can­cer care. Ev­ery day, I see the hu­man face of th­ese gains and whis­per thanks to the re­searchers who em­power clin­i­cians like me.

But as nearly ev­ery can­cer pa­tient ob­serves, what can­cer medicine has failed to keep up with is the need of the per­son be­hind the pa­tient. Though there are many dis­eases with no good treat­ments and far worse out­comes, the very men­tion of can­cer in­vites ter­ror like no other. A com­mon re­join­der to the state­ment, “You have can­cer” is, “Am I go­ing to die?” to which a com­mon, and un­help­ful, re­sponse is: “We can’t say.” For what pa­tients are re­ally ask­ing is not for on­col­o­gists to be for­tune tell­ers, but for re­as­sur­ance that we will be there to see them through the whole can­cer ex­pe­ri­ence, of which chemo­ther­apy is just a part. They want doc­tors who are not only pro­fi­cient but also hu­mane, as ca­pa­ble of con­sol­ing as treat­ing. Most on­col­o­gists as­pire to this, but two things get in our way.

The first is med­i­cal train­ing, which has an out­size fo­cus on “de­feat­ing” dis­ease at any cost and strug­gles to take into ac­count pa­tient choice. For all the rhetoric around pa­tient-cen­tred care, it has not been easy to put into prac­tice. Can­cer is a het­ero­ge­neous dis­ease and the peo­ple who get can­cer are a di­verse lot too. A cham­pion ath­lete, a vul­ner­a­ble refugee, a youth­ful re­tiree and a frail el­derly per­son all need care, but each mer­its spe­cial con­sid­er­a­tion. The ath­lete wants to avoid nerve dam­age and the ex­ec­u­tive begs to keep her hair so her col­leagues won’t know.

The refugee doesn’t own a car and can’t travel to have in­tra­venous in­fu­sions and the el­derly man trem­bles at the thought of his in­abil­ity to care for his dis­abled wife. He val­ues qual­ity of life over ex­tent; he val­ues stay­ing to­gether over be­ing forced into care, but finds this a nearly im­pos­si­ble con­ver­sa­tion to in­ter­est any­one in. Faced with an age­ing pop­u­la­tion for whom a can­cer di­ag­no­sis is but one of sev­eral se­ri­ous chal­lenges, this par­tic­u­lar prob­lem will test us all. Stud­ies show that the frail el­derly are will­ing to forego ag­gres­sive treat­ments in favour of pre­serv­ing their qual­ity of life, pro­vided they are of­fered the choice. We will need to be re­al­is­tic about what de­fines suc­cess­ful can­cer treat­ment. It will mean look­ing be­yond the tu­mour at the whole per­son.

Aged-care ser­vices

Now let me be the first to ad­mit how dif­fi­cult it can be to do this, even for the most well-in­ten­tioned on­col­o­gist. Given pa­tients’ myr­iad needs — from re­ha­bil­i­ta­tion and nutri­tion to fi­nan­cial, so­cial and emo­tional wel­fare — it is ob­vi­ous that one doc­tor can­not come close to ful­fill­ing them all. Can­cer pa­tients need team sup­port but on any given day, it is far easier to pre­scribe a £50,000 (Dh249,504) drug with du­bi­ous ben­e­fit than find a phys­io­ther­a­pist or so­cial worker. It takes months to ac­cess aged-care ser­vices in the com­mu­nity un­til the same pa­tient falls and frac­tures a hip, after which ser­vices swing into place. There is no rea­son to bunch to­gether cog­ni­tively im­paired, men­tally ill and non-English speak­ing pa­tients, ex­cept that they con­sis­tently re­ceive in­ad­e­quate care across all parts of the health care sys­tem.

Pal­lia­tive care has value for pa­tients and on­col­o­gists, yet the nexus be­tween on­col­ogy and pal­lia­tive care re­mains weak in many places due to a lack of ed­u­ca­tion, col­lab­o­ra­tion and re­sources. If the em­pha­sis, and hence fund­ing, stays de­ter­minedly on find­ing a cure for can­cer (which, as we are now re­al­is­ing, is not one dis­ease) the man­i­fold sup­port­ive care needs of pa­tients will con­tinue to go un­ad­dressed. We will keep iden­ti­fy­ing the gaps with­out fill­ing them. On­col­o­gists need to ap­pre­ci­ate the broader needs of their pa­tients but they also need ac­cess to help. When peo­ple reach this sober­ing “mile­stone”, the sci­ence and art of medicine must co­ex­ist.

My next pa­tient is late be­cause there is no park­ing and the scarce wheel­chairs are all in use. While wait­ing, I duck out to see my pa­tient in the chemo­ther­apy chair but stop at a dis­tance. Sa­line cour­ses through his veins and a crisp white blan­ket pro­tects his stretched body. His nau­sea is gone, his pain has set­tled, and fi­nally he is asleep, his ag­i­tated tears re­placed by rare calm. Amid the low-level hum, he is fast asleep, his son dozes, and my heart can’t help but skip a beat at how far a mea­sure of kind­ness goes.

The nurse comes over to join me and we look on, feel­ing like proud par­ents who have averted a cri­sis.

“What did you give him?” I ask qui­etly, although I know the drugs that I charted.

“Noth­ing more. He just needed to know he was safe.”

Pal­lia­tive care has value for pa­tients and on­col­o­gists, yet the nexus be­tween on­col­ogy and pal­lia­tive care re­mains weak in many places due to a lack of ed­u­ca­tion, col­lab­o­ra­tion and re­sources.

Hugo A. Sanchez/©Gulf News

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