Perhaps in recent days you have seen the name “Charlie Gard” in the media.
Little Charlie is in the terminal stages of a disease called mitochondrial DNA depletion
syndrome. Charlie is one of only 16 people to have ever had the condition.
He has been at the center of some media attention due to doctors stating he should be
allowed to die in dignity, and arguing his ventilator should be shut off. His parents and
supporters are striving to give him a final chance, raising more than a million pounds to
have him sent to America for treatment. In recent days the pope has offered the
services of the Vatican’s hospital and spoken up for him, as has President Trump.
A small bulletin column is much, much too small a space to get into the specifics of the
case. I am certainly not competent to give an opinion on it not knowing the specifics of
Charlie’s condition, his medical records, and going by just what I have read in the
media. From what I have read I think it’s clear that if there is any chance to help save
his life, it should be taken, so it was nice to see both the pope and president speak up
for life. But at a deeper level, even if only 16 people have ever had what Charlie has, all
of us will eventually die. And for some of us, or for loved ones who care for them, the
question of when can we allow someone to die is one that we have to think about, for
medicine has it’s limits.
To be sure, the Catholic Church is strongly against euthanasia or assisted suicide. I’ve
read chilling stories of a person even being assisted in their death by the state in
Europe. More commonly this is done when a person has a terminal diagnosis. We
cannot hasten death; a miracle cure is always possible, and a person should be made
to feel comfortable, but we cannot act to take their life.
It is also important that a person receive treatment for a condition that is treatable. For
instance if a person were just diagnosed with cancer, and the physician recommended
treatment and was hopeful, I’d urge that person to receive treatment and contend it is
Now, what if we are further down the line? It could be that treatments have failed, and a
person wants to stop receiving them. At a certain point, that is acceptable. But what is
not is a person doing nothing, and certainly parents and guardians of someone need to
seek treatment when there is a reasonable chance for a person overcoming a disease.
In doing some research for this article, I turned to the National Catholic Bioethics
Center, which has some helpful information for Catholics as they look at how to deal
with end of life issues. The following is taken from their publication “A Catholic Guide to
End-of- Life Decisions.” Specifically, they note:
One of the most important moral distinctions in end-of- life situations is that between
what is morally obligatory and what is morally optional. What is morally obligatory we
are bound to perform; what is morally optional we may include or omit at our own
Generally, a medical procedure that carries with it little hope of benefit and is unduly
burdensome is deemed “extraordinary” and is not obligatory. For example, in some
circumstances, a person may judge in good conscience that the pain and difficulty of an
aggressive treatment for cancer is too much to bear and thus decide to forgo that
treatment. Whether a particular treatment is excessively burdensome to an individual
patient is a moral question that may require the input and advice of others. Individual
patients and their families should seek the guidance of the Church whenever there is
any doubt about the morality of a particular course of action.
Most medical treatment received during the course of one’s lifetime is routine and does
not raise serious moral questions. Sometimes,however,medical circumstances require
considerable reflection about what procedures are appropriate for a given medical
condition and time of life. When aggressive and experimental methods are
recommended by a physician, the Church teaches that we are free to pursue such
treatment whenever there is a reasonable hope of benefit to the patient. We are also
free, however, to refuse treatment when it is of dubious benefit or when its burdens are
significant. The use of extraordinary means always remains optional, and the moral
obligation to conserve life obliges us simply to act in the most reasonable manner. For
example, I might want extraordinary medical means used to extend my life in order to
receive the sacraments of the Church, or to see friends or relatives one last time,
or to be reconciled with someone from whom I have been estranged.
To make sound moral decisions, a patient must receive all relevant information about
his or her condition, including the proposed treatment and its benefits, possible
risks,side-effects, and costs. The patient may also consider the expense that the
treatment may impose on the family and the community at large. It is important to know
of all the morally legitimate options that are available. Normally, the patient’s judgment
concerning treatment should guide others in their decisions, unless the treatment is
medically unwarranted or contrary to moral norms. Ideally, the patient, in consultation
with others, decides the course of medical treatment. There should be a presumption in
favor of providing food and water to all patients, even to those in a comatose state,
but there are exceptions. Obviously, when the body can no longer assimilate food and
water, they provide no benefit and may be withdrawn. Sometimes placement of a
feeding tube may cause repeated infections. Some patients with advanced dementia
may display agitation at the sight of a tube and may pull it out repeatedly. Certain
patients may experience other burdensome complications, such as repeated aspiration
and the constant need for suctioning of the throat. All of these are factors that may
cause one to reevaluate the placement of a feeding tube.
When there are no exceptional circumstances, tube feeding should be considered a part
of ordinary care. Normal care always remains morally obligatory, but refusal
of additional interventions deemed extraordinary is not equivalent to suicide. Such a
decision should be seen instead as an expression of profound Christian hope in the life
that is to come. An instruction to “avoid heroics,” when communicated ahead of time to
family and friends, may give great comfort to loved ones during emotionally stressful
The bottom line is that these issues are important to think about and pray about.
Certainly basic care is a must; when there is reasonable hope of success treatment
should be sought. But there comes a point when it can put a great burden on a person
too – and each case is unique. Through it all, we have the hope of the resurrection, and
the presence of Jesus who journeys with us through our Good Fridays.
Each case is unique, and requires prayer, thought, and counsel. Do think about these
issues when planning a will or end of life directives, and don’t be afraid to talk about
them. Saying goodbye to loved ones is among the most painful things we experience,
but we are not on this earth forever, and neither is a goodbye one that lasts forever, but
a crossing over into the love of God.
Have a blessed week,