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Charlie Gard and Purpose in Suffering

The World Watches Charlie Gard

With the international attention received by baby Charlie Gard in the United Kingdom (including my post from last week), good news has been received: the judge has granted a hearing of new evidence about experimental treatment available in the United States, claims that Charlie is not, in fact, suffering pain, and that damage to his brain caused by a rare mitochondrial disease is not permanent. The hearing began yesterday, and the judge is waiting for more information before a new decision is reached. Here is the latest from Life Site News: https://www.lifesitenews.com/news/charlie-gards-day-in-court

UPDATE: https://www.lifesitenews.com/news/breaking-american-doctor-will-examine-charlie-gard-on-monday

While the world awaits the updated decision, conversations are still taking place in the public square about the value of human life and the role of "quality of life" in medical decisions (even among Christians). My post from last week received a series of concerns that are commonly raised with those who have defended human life in these situations. I will quote the concerns and provide a response to help equip you, the reader, to think clearly and logically and respond with comfort and love regarding such issues.

I want to preface this with the fact that the person raising the concerns was a Christian who is also struggling through how to properly respond and act within the Christian worldview. All concerns in such emotional cases need to be understood in the context that we are not merely talking about ideas but lives, humans created in the Image of God, who may be struggling themselves with the pain of the (potential) loss of a friend or family member, such as baby Charlie. These concerns should not necessarily be seen as challenges to put the defender of life on the defensive but rather in the position of a comforter who God has put in this position to help guide in this painful time. We are the Body of Christ- God's "hands and feet" in this world , so we are called to minister to the broken in heart and in mind. With that in mind, let's look at these concerns.

Lack of Personal Experience

"It is easy for arm chair theologian to throw up objections based on superficial understanding of scriptures and or bioethics , but another thing when one is in the "mud" struggling, seeing your love one ,day after day, week after week, months after months with very, very unrealistic capability of recovery. And even if recovery is possible what would that Quality of Life be like?"
While we cannot always know what people have gone through, it can be helpful for us to know that they have personal experience with something, at least, similar to our own situation. There is a certain level of comfort we get when we know that the person speaking to us knows our pain the way we know our pain. The 'arm-chair' theologian may very well be speaking from experience of their own. But while this is important, a person's lack of personal experience does not necessarily invalidate their position or their arguments. It is important to reject or accept a position based upon the logic behind the position, not the (lack of) experience of the person presenting it. God is a God of love; He is also a God of reason, and He has created this world in such a way that some of the most effective comfort is found in seeing the logic (truth) behind the comfort a friend is offering in love and knowing that it is not merely some empty platitude but finds grounding in reality.

The Sanctity of Life and Quality of Life

"As Christian we should recognize tension between Sanctity of Life and the inevitable progress of medicine. The latter does pose a ” problem” in that when life is prolong we need to ask what will the ” Quality of Life ” be like? Does it alleviate or worsen it and what are the chances ie 20%, 30% etc better. Elderly, and unfortunate children and family struggle with decisions as to live their last days on earth with : What Quality of Life? For how long? and at what cost in terms of financial, emotional? Are we grabbing at straws?"
"Quality of life," risk, and length of time, are all subjective standards. One person's idea of a high "quality of life" may not match that of another's; length of time also comes into play here (what about quadriplegics or those with Down's Syndrom, or Parkinson's, etc.?). One person's preference for taking risk may be higher than another. The only objective standard here is that all humans are created in the Image of God with intrinsic worth. This does not do anything to help the hospital's case. God has a purpose for every person He has created (including quadriplegics, those with Down's Syndrom, and Parkinson's, etc.). The "quality of life" is not objectively judged merely by a lack of pain, but how the person can be used by God to build His Kingdom and encourage those in the Body of Christ. God gives us pain and suffering for the very reason that we can be of personal comfort to those who are suffering what we have suffered and not be merely "arm-chair theologians." If we do not allow God to work through suffering, we are essentially allowing Him to only create "arm-chair theologians" and not those who can offer comfort from personal experience. We cannot complain that God works through suffering then complain that those He sent to us have not suffered as we have. If we terminate the lives of people before they experience pain, then we become the creators of the "arm-chair theologian" issue.

An Impasse In the Decision

"Prior to court involvement the hospital will have bioethicists, lawyers, risk management personnel involve. They would have discuss with parents and when an impasse occur than the decision would be to the court. It should be understood that there are steps or procedure hospitals go through before it come to this unfortunate step. These steps or protocol occurs irregardless of socialized or US type of practice."
When there is an impasse, the hospital needs to respect the wishes of the parents rather than force their beliefs on the parents by the courts. This is especially if the parents already have funds raised to administer treatment elsewhere. If we use the fact that this treatment is "untested" as a valid reason to not try it in cases where we believe it could cause more pain (all cases with any untested treatment), then medical research comes to a halt. (I would like to note that in the testimony for Charlie heard yesterday, there are indications that Charlie is not even in pain at all.) Even though we live in a world with pain, God, in His love and providence, has given us many resources to discover ways to minimize the pain for many people. If we are to avoid testing new treatments because they have the potential to cause pain, then we deny those who are suffering a possible remedy, and we become the creators of the "bad qualify of life" issue. In Charlie's case, by not attempting to save his life and treat his disease, we are denying him and those stricken as he has been with a "good quality of life."

Termination of Life-Support

"Termination of life support : Death is not intentionally caused by stopping life support but the disease is responsible for death. Remember technology or progress of medicine, tension with Sanctity of Life."
What has been described here is called "passive euthanasia." There is a legitimate debate within Christian ethics as to whether or not this is permissible. However, that debate is only legitimate when there is not knowledge of any possible cures. In Charlie Gard's case, there is, so even passive euthanasia is not permissible until the options have been exhausted. And even then, when someone is on life support, they can still function for the purpose in which they were created: to minister to individuals in the same situation- either encouraging them in Christ's love and comfort or encouraging them to accept Christ's sacrifice that they can experience His love and comfort. This function does not always have to be direct; it can also be indirect- through the love, concern, and dedication of others who are suffering the experience of a loved one being in that position (even if for a limited time), who can then use their suffering to minister.

Ordinary and Extraordinary Means of Management

"We should also be able to distinguish between: a)ordinary and b) extraordinary means of management. By a) ordinary , I mean disease can be treated and there is a reasonable hope of benefit to patient with good or decent quality of life without being excessively burdensome to family, society. b) Extraordinary by that I mean the opposite --where very unrealistic goals, unrealistic hope and place undue burdens on the patient, society."
The idea in this concern is that we must do what will benefit the most people not just a single individual. This is called utilitarianism. However, utilitarianism, especially based upon subjective factors (described above), as a way to determine what is right in any case, fails miserably because no one knows the future (what could happen given different attempted treatments). No one knows what course of action will ultimately benefit the greatest number of people. So this cannot be used as a guide for determining what to do in this case (or any others). Because Charlie (and all humans) is created in the Image of God, is intrinsically valuable, and has a purpose, when ordinary means fail, extraordinary means must be used. This life is short (even a full-length life), but the next life is for eternity. The suffering that we (and others) experience can be used to offer unbelievers, who are suffering, hope in Christ. The suffering that we (and others) experience can be used to encourage fellow Christians, who are also suffering, to persevere in Christ.  For those who accept and persevere in Christ will have an eternal life of no suffering. It is a promise given to us: 
"For I consider that the sufferings of this present time are not worth comparing to the glory that will be revealed in us" (Romans 8:18).
It is not for us to end a life because of suffering. Suffering has much meaning and purpose; it has an eternal, good purpose. Cutting life support (passive euthanasia) is not the cure for suffering. Jesus Christ, the one who suffered death by crucifixion and suffered the judgment of the morally perfect God against sin, is the cure for suffering. Christ conquered death and suffering by physically rising from the dead: "Because I live, you also will live" (John 14:19b). The escape from suffering was never meant for this physical life, rather God has placed us here, with suffering, to prepare us and others for the life that is to come without suffering. Your suffering has meaning and purpose and Charlie's suffering has meaning and purpose through Christ.

To go deeper, please refer to these other posts: