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       A Child, A Ventilator and A Choice

 

     All the passages below are taken from William H. Griffith’s book, “More than a Parting Prayer---Lessons in Care-giving for the Dying.” It was published in 2004.

 

A terminal illness doesn't belong only to the one who is sick---it affects family members, friends, neighbors, and coworkers. Not unlike a still pond disturbed by a falling stone, an impending death sends ripples through all the relationships in the life of the dying.

-Maggie Callanan and Patricia Kelley

 

Hospice Professionals, by nature of their job descriptions, confront death on a daily basis. Although each patient is unique, with each favoring his or her own personal plan of care, the staff is often able to recognize common dynamics that are present with the various diseases. Experience teaches us what to look for and how to anticipate and document the decline of each patient. To do this on a daily basis demands that staff members maintain a professional distance that enables them to fulfill their duties to the families and the dying patients. This professional control is hardest to maintain when the dying patient is a child. For me, it is even more difficult when the child arrives in our unit connected to a ventilator and the family has made the decision to remove the child from life support.

It was Saturday morning when I learned that Martina had been admitted to our unit earlier in the week. The girl was three years old and had been on a ventilator since birth. Following her birth, she remained in the hospital for five months and then was taken home, where she had been cared for by her parents for the past three years. I was informed that Martina's father was a pastor in a local congregation.

The nursing staff had been asked to plan to disconnect the ventilator on Monday morning. It was important to wait until Monday because Sunday was Father's Day, and Martina's father planned to conduct worship and preach that day. The staff decided to share a special Sunday lunch and a Father's Day cake with the family after the church service. Since Martina's parents were not in the unit when I was there on Saturday, I was not able to meet them until the following day.

That evening, I shared with my wife this family's circumstances, the difficulty of their choice, and the plans being made by the staff. As she listened to me, she was finishing sewing the binding on a small child's quilt. Without skipping a stitch, she said, "I want you to take this quilt and give it to the mother. I wasn't sure why or who I was making it for, but now I know."

The next day I met Martina's parents. After being introduced and sharing my concern for them, I gave Martina's mother the quilt as an expression of my wife's love and prayers for them. The woman was overcome with the joy of such an unexpected gift. When she had composed herself, she said, "You will never know how much this means to me. I prayed, only today, that God would give me a sign that what we were doing was within his will and that we would have people support us in our decision."

Needless to say, I, along with the nurse who was with me, was a bit choked up by the mother's words. I asked if we could talk after they finished their lunch, and Martina's parents quickly agreed. After lunch, we sat in the lounge together, and I asked if they would share with me what the past three years had been like and how difficult this decision was for them to make.

The mother began by saying, "God has been so good and given us so much of his grace. We are so grateful for Martina and for the love we share with her." She told me how the care of their child had become central to their home and all of their schedule".

I asked, "Have you had good support from your church?"

Her lips tightened and she shook her head from side to side, indicating that she hadn't had the support she had hoped for. She explained that she knew that it was hard for others to understand what she and her family were experiencing, but "if they would have just stopped by ..." She didn't complete her thought, but she didn't need to.

She shared with me that six months earlier they had discussed the matter of disconnecting the ventilator, but someone in the church had found out about it and confronted them with words that laid a heavy guilt trip on them. They stepped back from their decision and rethought it. Six months later, however, they came back to the same decision. They were at peace with the decision and felt it was God's will. Although they knew that not everyone would understand, they knew it was best. Their spiritual journey had brought them to a place of being accountable only to God.

The next day when I arrived, just before 6 a.m., Martina's mother was taking off the child's pajamas and dressing her in a pretty pink dress. She lovingly combed Martina's hair and braided it, tying the braids with two pink ribbons. The room was silent except for the sound of the ventilator that had been Martina's life source for the past three years.

The pediatric nurse arrived along with the pediatric physician. They had already met previously with the parents, but they reviewed the steps they were going to take. They explained the medicines that would be given to the girl to provide comfort in her last moments and what the family should expect when the ventilator was removed. As the doctor and nurse left the room I said to the parents, "Would this be a good time to offer a prayer together?"

The girl's father replied, "Prayer is always appropriate, especially now."

Following the prayer, Martina's father asked one of his other daughters to put on their favorite gospel CD. The song was "I Can Only Imagine," a song in which the singer attempts to imagine what heaven will be like.

At 7 o'clock the physician indicated that it was time to remove the tube. When the process was complete, the father picked up his child, who was for the first time free of the tubing that had for three years tied her down, and placed her in her mother's arms. The sight of the mother sitting in the rocking chair cuddling her three-year old gave a whole new meaning to "Madonna and Child."

For the next three hours the parents took turns holding their child while they listened to gospel music. The father read aloud from the book of Psalms. Staff members provided support by being present, but also from time to time left the room so that the family could have some time alone.

When Martina took her last breath, we were there with the family. The finality of the moment was overwhelming for all of us, and the staff provided individual comfort to each family member in the room. The waiting had ended.

The parents' faith enabled them to speak of their daughter as now being more whole than she had ever been. They spoke of her knowing more of God's love than any of us could in this life ever imagine. For the next two hours the mother cradled Martina in her arms. The mortuary was called and given a time when the parents would be ready for the body to be removed. Eventually, Martina's father gently took the child from her mother's arms, and they laid her on the bed. They hugged each other and then for some time cried together.

As I stood in the hallway looking in through the open door, I saw two parents who had traveled a difficult road but were claiming the promise that the God who had supplied all of their needs would continue to do so. I knew that the tears in my eyes were not so much for them but for myself. My wife and I have been blessed with three healthy children and eight healthy grandchildren, and I could only hope that if the same circumstances had been mine, my faith would sustain me in the same way.

 

Lessons for Caregivers

Caregivers, whether professionals or laypersons, face no more difficult situations than caring for families when a child is dying. The situation is even more difficult when an intentional decision must be made to turn off a ventilator. No amount of training can prepare a person for the emotional assault, and it might well be that such preparation is not even possible.

The best care-giving I have ever witnessed was provided by Martina's father and mother. Their three years of loving care included dealing with the pain caused by insensitive church members whose thoughtless remarks created undue anxiety and stress. It is important to learn from those people's thoughtless mistakes how hurtful it can be when a person makes judgments on others. What Martina's family needed was not criticism but understanding and a helpful presence, and yet no one in their church cared enough to drop by the house and offer support. I believe that speaks volumes about how hard it is to care in such difficult situations. It's far easier to gossip and criticize.

The caregivers who provided support for Martina's family did so in many different ways, and most often it was the little gestures and kindnesses that proved to the family that someone cared. Care-giving is rarely about highly developed plans and events that take a great deal of effort or money. It is usually the small, seemingly insignificant gesture that signals to the dying or the grieving that they are not alone.

A tear is not very large, but when it runs down the cheek of a caregiver and drops onto the shirt of a grieving father, it is a Niagara Falls of Support. Caregivers who share not only their presence but also their tears sometimes discover an amazing strength as a result of how the family members respond.

Caregivers must also be honest in recognizing that their tears are not only for others but in many ways are for themselves. Any time that we identify with those who are dying and grieving and begin to transfer the possibility of their circumstances to our own personal relationships, we grieve personally. It is our ability to imagine such a personal loss in our own lives that stirs our emotions, and there is nothing wrong with this honest recognition, because it enables the caregiver to truly empathize, and it also reminds us of our own humanity. [102-107]

 

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