“What happens in Vegas – is recorded in Heaven”
“THEY WISH FOR THEIR BABY TO GO QUICKLY. BUT I KNOW, AS THEY CAN’T, THE UNIQUE HORROR OF WATCHING A CHILD SHRINK AND DIE
Here is an abridged version of one doctor’s anonymous testimony, published in the BMJ under the heading: ‘How it feels to withdraw feeding from newborn babies’.”
The voice on the other end of the phone describes a newborn baby and a lengthy list of unexpected congenital anomalies. I have a growing sense of dread as I listen.
The parents want ‘nothing done’ because they feel that these anomalies are not consistent with a basic human experience. I know that once decisions are made, life support will be withdrawn.
Assuming this baby survives, we will be unable to give feed, and the parents will not want us to use artificial means to do so.
Regrettably, my predictions are correct. I realise as I go to meet the parents that this will be the tenth child for whom I have cared after a decision has been made to forgo medically provided feeding.A doctor has written a testimony published under the heading: ‘How it feels to withdraw feeding from newborn babies’
The mother fidgets in her chair, unable to make eye contact. She dabs at angry tears, stricken. In a soft voice the father begins to tell me about their life, their other children, and their dashed hopes for this child.
He speculates that the list of proposed surgeries and treatments are unfair and will leave his baby facing a future too full of uncertainty.
Like other parents in this predicament, they are now plagued with a terrible type of wishful thinking that they could never have imagined. They wish for their child to die quickly once the feeding and fluids are stopped.
They wish for pneumonia. They wish for no suffering. They wish for no visible changes to their precious baby.
Their wishes, however, are not consistent with my experience. Survival is often much longer than most physicians think; reflecting on my previous patients, the median time from withdrawal of hydration to death was ten days.
Parents and care teams are unprepared for the sometimes severe changes that they will witness in the child’s physical appearance as severe dehydration ensues.
I try to make these matters clear from the outset so that these parents do not make a decision that they will come to regret. I try to prepare them for the coming collective agony that we will undoubtedly share, regardless of their certainty about their decision.
I know, as they cannot, the unique horror of witnessing a child become smaller and shrunken, as the only route out of a life that has become excruciating to the patient or to the parents who love their baby.
I reflect on how sanitised this experience seems within the literature about making this decision.
As a doctor, I struggle with the emotional burden of accompanying the patient and his or her family through this experience, as much as with the philosophical details of it.
‘Survival is often much longer than most physicians think; reflecting on my previous patients, the median time from withdrawal of hydration to death was ten days’
Debate at the front lines of healthcare about the morality of taking this decision has remained heated, regardless of what ethical and legal guidelines have to offer.
The parents come to feel that the disaster of their situation is intolerable; they can no longer bear witness to the slow demise of their child.
This increases the burden on the care-givers, without parents at the bedside to direct their child’s care.
Despite involvement from the clinical ethics and spiritual care services, the vacuum of direction leads to divisions within the care team.
It is draining to be the most responsible physician. Everyone is looking to me to preside over and support this process.
I am honest with the nurse when I say it is getting more and more difficult to make my legs walk me on to this unit as the days elapse, that examining the baby is an indescribable mixture of compassion, revulsion, and pain.
Some say withdrawing medically provided hydration and nutrition is akin to withdrawing any other form of life support. Maybe, but that is not how it feels. The one thing that helps me a little is the realisation that this process is necessarily difficult. It needs to be.
To acknowledge that a child’s prospects are so dire, so limited, that we will not or cannot provide artificial nutrition is self selecting for the rarity of the situations in which parents and care teams would ever consider it.
Still the many veils
Stand between us.
I know they are the weave
Of my concupiscence,
Hanging over my heart,
Weighing the corners
Of my smile,
Hiding me from You
In my shame.
Must I forgive myself
For being other
Than Your Christ?
And repeated falls
Spoil my high hopes,
But I find them useful as well,
For the crushing of my pride.
The temptation to reign
In the place of God
Is Satan’s prompt,
And plays persistently,
Appealing in its disguise
And Evolution at its finest.
Unveiled before you
I see my call to be least,
And allow You to reign
Great in me.
Lord, triumph over vain glory,
The Father desires for me,
That my baptismal garment
Of purest white
In all the colors
Of Your Glory,
Even in His smallest work
And humblest creature.
From a homily on Matthew by Saint John Chrysostum, bishop
As long as we are sheep, we overcome and, though surrounded by countless wolves, we emerge victorious; but if we turn into wolves, we are overcome, for we lose the shepherd’s help. He, after all, feeds the sheep not wolves, and will abandon you if you do not let him show his power in you.
What he says is this: “Do not be upset that, as I send you out among the wolves, I bid you be as sheep and doves. I could have managed things quite differently and sent you, not to suffer evil nor to yield like sheep to the wolves, but to be fiercer than lions. but the way I have chosen is right. It will bring you greater praise and at the same time manifest my power.” That is what he told Paul: My grace is enough for you, for in weakness my power is made perfect. “I intend,” he says, “to deal the same way with you.” For, when he says, I am sending you out like sheep, he implies: “But do not therefore lose heart, for I know and am certain that no one will be able to overcome you.”
The Lord, however, does want them to contribute something, lest everything seem to be the work of grace, and they seem to win their reward without deserving it. Therefore he adds: You must be clever as snakes and innocent as doves. But, they may object, what good is our cleverness amid so many dangers? How can we be clever when tossed about by so many waves? However great the cleverness of the sheep as he stands among the wolves – so may wolves! – what can it accomplish? However great the innocence of the dove, what good does it do him, with so many hawks swooping upon him? To all this I say: Cleverness and innocence admittedly do these irrational creatures no good, but they can help you greatly.
What cleverness is the Lord requiring here? The cleverness of a snake. A snake will surrender everything and will put up no great resistance even if its body is being cut in pieces, provided it can save its head. So you, the Lord is saying, must surrender everything but your faith: money, body, even life itself. For faith is the head and the root; keep that, and though you lose all else, you will get it back in abundance. The Lord therefore counseled the disciples to be not simply clever or innocent; rather he joined the two qualities so that they become a genuine virtue. He insisted on the cleverness of the snake so that deadly wounds might be avoided, and he insisted on the innocence of the dove so that revenge might not be taken on those who injure or lay traps for you. Cleverness is useless without innocence.
Do not believe that this precept is beyond you power. More than anyone else, the Lord knows the true natures of created things; he knows that moderation, not a fierce defense, beats back a fierce attack.