Jerika Bolen and end-of-life decisions

Last month, we were introduced to 14-year-old Jerika Bolen, the Appleton girl who suffers from spinal muscular atrophy (SMA) type 2. She was honored and serenaded at a prom dubbed “J’s Last Dance.”

SMA is a genetic condition that affects the nerves controlling muscle movement and leads to respiratory failure and paralysis. There is no cure for SMA, which strikes about one in every 10,000 children born in the United States.

After her condition (which requires Jerika to use a ventilator to help her breath) continued to worsen, she decided, with her mother’s approval, to enter hospice this month and discontinue use of her ventilator. Her last wish was to have a prom, J’s Last Dance.

The community banded together for Jerika, with hundreds of people in attendance at the Grand Meridian ballroom in Appleton on July 22. Tears, no doubt, were mixed with well wishes and prayers for Jerika.

Sadly, Jerika isn’t the only person, young or old, to face life-threatening illnesses, ones which are accompanied with pain and suffering. The anguish and hopelessness they and their loved ones feel can turn to despair as they desperately seek options for relief, even death.

It’s a slippery slope and the Catholic Church wants people to understand the moral and ethical consequences. God created us in his image and likeness (Gn 1:26-27) and our dignity as humans cannot be taken lightly.

The Catechism of the Catholic Church states that euthanasia — “putting an end to the lives of handicapped, sick, or dying persons” — is morally unacceptable.

“An act or omission which, of itself or by intention, causes death in order to eliminate suffering constitutes a murder gravely contrary to the dignity of the human person and to the respect due to the living God, his Creator,” it states (2277).

There are cases, however, where discontinuing medical procedures that are “burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate.”

The National Catholic Bioethics Center based in Philadelphia offers a “Catholic Guide to End-of-Life Decisions.” It provides a good explanation of the church’s teachings on end-of-life issues and gives Catholics some guidelines on how to proceed when faced with these situations.

It also educates us on the redemptive nature of suffering.

“By virtue of our being made one with Christ in baptism, we can join our suffering to that of our savior on the cross at Calvary and so assist in his work of salvation for the whole human race,” it states. “Christ is with us during our illness and shares in our suffering as we share in his.”

Bishop David Ricken spoke about redemptive suffering last February during a visit to St. Paul Elder Services in Kaukauna. He told residents that they could “offer up” their physical difficulties to God.

“When we join in Jesus’ redemptive suffering – that is, when we carry our crosses, which are part of his cross – we alleviate the burdens and the pain of others through the mystical body of Christ.”

By offering up difficulties, he added, “you are doing your part to participate in the Gospel, in the promotion of mercy and carrying the cross of Jesus for others. That’s called redemptive suffering.”

Jerika Bolen’s decision to end her life should cause all of us to pause, reflect and pray. We must pause and consider the important decisions that all of us will eventually face. Are we making informed decisions based on Catholic moral teaching? Do we understand how redemptive suffering is part of God’s plan? If in doubt, contact a priest or get your hands on the guide to end-of-life decisions.

Other helpful resources are, “Now and at the Hour of Our Death: Catholic Guidance for End-of-Life Decision Making,” a website created by the New York State Catholic Conference, and a 22-page pastoral letter written by Wisconsin’s Catholic bishops in 2006. It is also titled “Now and at the Hour of Our Death.”

We should also reflect on breakthroughs in health care, which can both assist in our end-of-life decisions and complicate them. Advances in stem cell research, for example, may someday offer cures for SMA, muscular dystrophy and other neuromuscular diseases. At the same time, using stem cells derived from embryos instead of adult stem cells would be morally unacceptable.

Finally, let us pray for guidance. We all want to make the right decisions, especially for loved ones who face medical challenges. Confiding in God through prayer will ease these burdens and offer the grace we need to overcome doubts. Let’s also pray for Jerika Bolen and her mother, Jen. May God give them peace and bring comfort to them in the days ahead.

The post Jerika Bolen and end-of-life decisions appeared first on The Compass.