We post an ethical or situational concern that has arisen in a facility where one of our readers works. It has no identifiers included. It gives you only the facts of the case. Then, you can respond to that concern. This is an ongoing dialogue, with comments added as they come in. In the following issue, assuming it has been resolved, we give you the outcome from the facility where the incident took place.

We are always looking for cases. Please send any cases that you would like considered for inclusion to: info@plainviews.org We will ensure that it is stripped of any identifiers. For further guidance about how to write up a CaseConference, please refer to the CaseConference Archives, Vol. 4, No. 3 "How to Submit a Case for CaseConference." (Click HERE)

We hope that this will help to inform not only those who are dealing with the issue, but will enable all of our readers to learn from the experiences and perhaps mistakes of others.

PLEASE NOTE: Due to unanticipated continuing responses to both the case and the resolution of the case, added responses can be viewed in the archives. Click HERE.

Case #20 (see responses below)

Isaac was 14, the only child of older parents. At 12, he was diagnosed with an aggressive form of cancer that was wrapped around his spine at the base of his brain. After a year of chemotherapy and radiation treatments, which left Isaac weak and sick, the cancer was not diminished in any way.

At 13, surgery was performed to remove as much of the tumor as possible, which now was wrapped so tightly around his spine that it was affecting his limbs and causing great pain. The surgeons were unable to remove all of the tumor.

Within a few months, the tumor grew so much that Isaac lost the use of his left arm and could no longer walk unassisted. Oncologists at his hospital told Isaac’s parents that , medically, there was nothing more to do; they said Isaac had, at best, a few months to live. The parents refused to share this information with Isaac. A palliative care team was brought in to assist the family.

Isaac asked the palliative care physician if he could see the most recent CT scans of his tumor. His mother adamantly insisted he shouldn’t see them. Nonetheless, the palliative care physician arranged for him to see the scans and the palliative care team arranged for his beloved friend and neighbor and her also beloved dog to be with Isaac as he viewed the scans.

With the dog on his lap, the neighbor at his side, and his parents and the palliative care team present, in a private conference room at his hospital, Isaac listened intently as the palliative care physician carefully showed and explained the CT scans to Isaac. Isaac asked if more chemotherapy or radiation would help. The doctor explained that these treatments had been unable to stop the tumor’s growth. Isaac asked if more surgery could be done to remove it. The physician explained that the tumor was too deeply connected to the spine to be removed. For a few minutes, Isaac sat quietly with an inward gaze. Then he asked, “So what do we do now?”

The physician answered that now Isaac should spend time deciding what he most wanted to do in his life and find ways to do them. Within the next few days, Isaac decided he wanted to go home, to spend time with his neighbor and her dog, to eat a favorite meal, to finish a poem he’d been writing before this hospitalization, and to tell a girl in his class that he loved her. He wondered if she would kiss him just once. He wondered what beer tasted like and asked his Dad if he could try one when he got home.

Within two days of going home, Isaac was convinced by his parents to go to another children’s hospital where they begged for treatment for him. He was enrolled in a toxicity study, a drug trial designed to test dosage limits for an experimental treatment. He died in hospital two weeks later.

What would the chaplain's role be with Isaac? With his family? With the hospital staff at the first hospital? What about the staff at the second hospital?

What ethical issues are present here?

What can be learned about the needs of children in hospitals from Isaac’s story?

Responses

I recognize the difficulties of privacy here, the responsibility of a parent for a minor, and yet the emotional maturity of this 13 year old. While I don't think the parents could ever have fully acceded to Isaac's wishes, a family meeting with the chaplain present as moderator might have been helpful. Were Isaac's wishes truly heard by his family? Did he go to the final treatment to please them? Where was the chaplain in this story?

Judy Novak, M.Div., NACC Cert
Cudahy, WI

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