Shame­ful de­cep­tion de­stroyed moth­ers’ right to tell their chil­dren the truth

Irish Independent - - News Cancer Scandal - Stella O’Mal­ley Stella O’Mal­ley is a men­tal health pro­fes­sional, best­selling au­thor and pub­lic speaker

FOR all we know, any one of us might have ter­mi­nal can­cer. Any one of us could get a let­ter in­form­ing us to­day that the re­sults of the test we had last year were mis­taken and, in fact, there is a can­cer grow­ing within.

We don’t en­dure these hor­ri­ble tests for any other rea­son than we want to know the truth about any forth­com­ing ill­ness, but the peo­ple who are involved in this toxic story of se­crecy and con­ceal­ment self­ishly took the de­ci­sion to dis­miss our right to know the truth about our bod­ies.

Sev­en­teen women involved in this smear test scan­dal have al­ready died and half of the 206 women involved don’t even know of their in­volve­ment yet. Pre­sum­ably they will hear about their in­cor­rect re­sults soon; but can we rely on any­thing any more? Can we re­ally hope to be­lieve that we have the full de­tails of this story?

We know, cour­tesy of Vicky Phe­lan’s brave and coura­geous de­ter­mi­na­tion, that there has been a series of cover-ups, ob­fus­ca­tions and con­ceal­ments in this par­tic­u­lar scan­dal but what do we know of the other more suc­cess­ful con­ceal­ments?

We need to know about our health so we can pre­pare our­selves and our loved ones for the news.

Re­ceiv­ing a di­ag­no­sis of can­cer is a shock­ing ex­pe­ri­ence and when a per­son is faced with their mor­tal­ity, a deep vul­ner­a­bil­ity rises within.

Some of us will do al­most any­thing to avoid the news and some peo­ple with a ter­mi­nal di­ag­no­sis may pre­tend to them­selves they’re get­ting bet­ter even when they’re ev­i­dently get­ting worse.

The har­row­ing le­gal fight of Al­fie Evans’ par­ents for the right to con­tinue to re­ceive treat­ment for their ter­mi­nally ill baby shows how some of us can be­come al­most mad­dened in our de­ter­mi­na­tion to avoid death. But death comes to us all and it is a gen­er­ous act of hu­man de­cency to turn to­wards the truth so that you and your loved ones can forge mean­ing from what re­mains of your lives to­gether.

The gen­eral con­sen­sus is that it is bet­ter to choose a quiet place to sit down with each child to tell them the news of a se­ri­ous ill­ness.

If it is can­cer then it is rec­om­mended you use the word can­cer – eu­phemisms can of­ten cause un­nec­es­sary hurt and con­fu­sion.

It is im­por­tant to give the child time to ask any ques­tions and let them know that more ques­tions might come to them in the fu­ture so they can ask them at any time. It can be very help­ful for the child to be re­as­sured that it’s not the child’s fault, that you aren’t in pain and – un­less you have been ex­pressly told oth­er­wise – that there is al­ways hope.

Telling your child about a ter­mi­nal di­ag­no­sis is a more rav­aging and se­ri­ous con­ver­sa­tion. The par­ent might start by ask­ing the child how they think things are go­ing.

From this the par­ent can out­line how the treat­ment they have re­ceived isn’t work­ing as well as they thought. Sen­tences such as the fol­low­ing could be used: “If the ill­ness con­tin­ues to grow as it is at the mo­ment then it will pre­vent my body from work­ing prop­erly. When my body stops work­ing then I will die.”

This will be an un­ut­ter­ably sad con­ver­sa­tion but chil­dren sense things any­way and many imag­ine the worst be­fore the worst is in dan­ger of hap­pen­ing.

If the par­ent can be clear about the pro­ce­dure, it is much more help­ful.

Al­though it might be tempt­ing to use phrases such as “go­ing to sleep” or “pass­ing away” it can of­ten cause be­wil­der­ment and so clar­ity is more im­por­tant.

This is of­ten one of the most im­por­tant con­ver­sa­tions in the child’s life and so it is bet­ter if the con­ver­sa­tion is truth­ful and, if pos­si­ble, ends up with a chat about how love sur­vives within us all.

Sadly, many chil­dren won’t fully take in what the par­ent tells them and so the con­ver­sa­tion may have to be re­peated many times.

Other chil­dren may re­spond in what seems to be an ex­traor­di­nar­ily self­ish way and de­mand to know who will take care of them. The rea­son for this is that with mat­ters of life and death, pri­mal in­stincts can take over and the loss of a par­ent can un­leash a tremen­dous fear within the child that they won’t be able to sur­vive this.

A ter­mi­nal di­ag­no­sis is agonising for ev­ery­one but it is es­sen­tial the truth is hon­oured. With­out the truth then what’s left of our lives can be­come false and mean­ing­less.

WE need the truth so we can one day come to make sense of our lives and be­gin the process of say­ing good­bye; some of us only truly con­nect with our loved ones dur­ing those last special days.

When we try to make sense of life and death there re­ally isn’t much to work with but beauty, truth and love can con­sole even the sick­est of in­di­vid­u­als.

Nei­ther beauty nor love can prop­erly emerge with­out the truth.

We need to hold on to truth be­cause it is one of the high­est con­cepts on this earth and this is why it is im­pos­si­ble to quan­tify the dam­age the con­ceal­ment of these smear test re­sults have done to peo­ple’s lives.

These peo­ple who de­cided to con­ceal the truth from Vicky Phe­lan and the other 205 women involved in this tragedy con­demned the fam­i­lies to live in a false world ex­actly at the mo­ment when the truth mat­tered most. May they hang their heads in shame.

When we try to make sense of life and death there isn’t much to work with but beauty, truth and love can con­sole even the sick­est per­son

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