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.

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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.

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Case #24 (Please see below for responses)

Serena was born with hypoplastic left heart syndrome, from which none survived twenty years ago and from which many still don’t survive today. She had her first open heart surgery within a few days of birth and returned to surgery multiple times in her first four months of life. She lived almost her entire life with multiple chest tubes draining blood from her tiny frame.

As a result of a clot formed at a line in her groin, the lower half of one of her legs died and was amputated. Because of other complications, she could not be fed. Because her body lacked the nutrition it needed, none of her wounds could heal, including wounds on the back of her head and elsewhere resulting from being sedated and paralyzed on her back in her tiny bed for weeks at a time.

In spite of all her wounds, her setbacks, her unending leakage from her chest cavity, her ongoing inability to sufficiently oxygenate her blood, and her failure to thrive, the various specialist physicians involved in her care continued to urge the parents to accept ongoing interventions, none of which healed her and some of which did additional harm. When one physician specialist was ready to stop, another would come forward and offer hope: “We can try this;” “She might turn around;” “Let’s give a few more days and see where we are.”

For most of these first months, Serena was intubated, attached to a ventilator and various lines delivering as many as twenty different medications, with chest tubes removing misplaced blood from within her, and sedated and paralyzed. During these months she was too fragile to be held, could not be fed, and had multiple open wounds on her body. Every time her parents were ready to stop, one or more physicians would urge them to go on.

What is the Chaplain's role in this situation with the parents? With the child? With the staff?

Should the Chaplain be advocating one way or the other based on stewardship of resources?

What are the ethical implications of this case for the baby, the family, the doctors, the hospital?

Responses

Glaringly absent from this scenario is a comprehensive care plan centered around a commitment to the quality of the child's current life and her future. The account reads like a chess match in which doctor/pieces are pitted against ailment/pieces, with the drama being played out on the child's body. The medical staff has misused the family's trust and sense of helplessness by engaging in piecemeal medicine pursuing symptom treatments rather than treating the more holistic familial circle.

On the threshold of death, we are called not to unrestrained heroics but to sober discernment; prayerful reflection, not single-minded exhortation. They need to stop 'trying' which risks becoming a romanticized form of medical experimentation. In this case, mutilation is justified as intervention. However high minded the intent of the interventionalists, their blindness to human dignity has done real harm.

Miracles are wonderful gifts, but the overzealous pursuit of a miracle leads into an unhealthy skewing of human and Divine relationships. At times, limits are more liberating than possibilities. The chaplain should initiate and steward a series of conversations among key staff and the parents to set meaningful and merciful limits on treatment options and access.

Keith Goheen, Chaplain
Beebe Medical Center
Lewes, DE USA

I think that this is one of the most painful of circumstances for a hospital chaplain. The lamentation is palpable to me. As we know, true compassion includes personally feeling and sharing the pain of those who are in our care. The parent's pain must be profoundly deep and, also complicated by the circumstances surrounding the care of their infant child. So, then is the pain of the chaplain who stands with them and for them. Included in the sharing of the anguish with the parents over their child is the sense of shared helplessness. This helpless child is being overwhelmed by her terminal conditions as well as by the lack of serious medical management of her critical care case.

In many of our facilities, we chaplains must wear many hats and we must function in many different capacities. We need to remember that we can not wear all the hats all at once. We will confuse and perhaps become confused if we try them on all at same time. There is a prime role here for the compassionate, non-anxious presence of a chaplain who will love and support the patient's family and the patient care staff involved in her care. These are precious people who deserve to be understood and appreciated. They each have their core values. The chaplain, as pastoral care practitioner, is called upon to discover, to cherish, and to support these people and their values. The chaplain can help them to clarify their values, and encourage them to appropriately assert themselves and their values through this painful trial. Family members could request a formal case conference in which they could hear and be heard. Staff who are conflicted could and should express their concerns to their managers for corporate procedure review. It is possible that there are corporate ethics and policy violations present regarding case management and/or human experimentation.

There are ample concerns and grounds for any involved entity to request an ethics consultation. I see potentially all five ethics principles being involved in this case: Autonomy, Maleficence, Non-maleficence, Veracity, and Justice. This is a team process that can be helpful at a time like this one, and certainly can be useful for case review as an educational tool for the facility that could affect future patient care.

Times and situations like this one require the most of us personally and professionally. My compassion is with the chaplain who struggles with those who are losing so much.

Stan Dunk, M.Div., BCC
Director of Pastoral Care
The Fort Hamilton Hospital
Hamilton, OH

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