A woman meets a man, starts a relationship, wants a family. She comes to your hospital so pregnant that her belly is huge. She hasn't come before because she has no car. Her man works long days, paid cash for his labor. Turns out the baby has no brain, no skull. Only a stem. This condition has no survivors. None.
You are in OB triage, crammed on a stool between the woman's stretcher and the wall. When you move, the stool squeals. Her hand rubs her belly. You find an interpreter, you sit beside her, you tell her congratulations and you are so sorry all in the same breath. The interpreter is a stranger on a screen, mounted to a pole on wheels. You try to angle the screen so the interpreter sees your face. He is aghast at what you ask him to repeat. The cadence of your words is carefully measured, but your beautiful cadence is mangled by his hesitation.
You wait for the patient to break the silence. The baby's heartbeat trots through the monitors while you softly hold her gaze. Her eyes plead with you. End it. You talk to the obstetricians, because eventually it will end. But nobody will do it. Not in this state. Not in this hospital. And so, the mother goes home, pregnant and grieving.
She returns a few days later. She's having a miscarriage. Her labor is managed just like that, like labor. The baby is born with no skull, eyes like gumballs too big for their sockets. Alive, briefly. It hurts to look. Grotesque is all you can think, but you cannot say it. Thinking it calms you inside so you can calm everyone else. That is your job. To lead, to calm. Because everyone is upset. Some of the nurses need you to fix it, to save this baby with the magic of medicine. You remind them that he is very premature, that he has no brain, that he cannot survive. This is not an ambiguous diagnosis. You encourage the mother to hold her child, but she does not want this bond. She cannot see the deformed creature she birthed, because once seen it cannot be unseen.
It doesn't last long, these precious but vulnerable moments. Gently, the baby dies. He is warm, whole, and not alone. There are no doughnuts at the nurses' station that night as this young mother is wheeled to a room in the back corner of labor and delivery, away from the other mothers and their pink, crying babies. She will walk out of the hospital with breasts swollen and weeping for her dead child. Her hips loose and large will force her pants to tug. She will struggle with her gait for weeks, punctuating loss in the waddle of each step, until, gradually, she retires her maternity pants and her steps become firm, upright, and forward.
You've done this before, cared for women whose wishes were warped by politics. You've commanded millions of health care dollars on behalf of infants born with fatal diagnoses. You've seen these infants cut, lanced, and battered in the name of intensive care. Do everything. Because who does not want to save her child? Sometimes all we can control is our grief. The middle-of-the-night pangs for a world where motherhood means potty training and muddy cleats. Sometimes the idea of choice is just a lie. And sometimes all you can provide is compassion. Dignity in grief is the gift. You've enabled false hopes, not for cures but for time to bond, hope, and heal. It is the parents you are healing. The hopes false. All these children died in the end.
Civilization of Death
What are compassion and dignity?
The author is concerned about the parents, the health care team and society (costs). The position taken clearly places the interests of the unborn and newborn child subservient to others. Traditionally, the patient’s interests are paramount. Disturbing changes in medical ethics have devalued the humanity of patients when they are seriously disabled and ill. There is a growing trend towards paternalism and unilaterally applying the concepts of societal over individual interests.
The author uses language that is contradictory such as “baby” and “infant” followed by objectifying, grotesque, and dehumanizing descriptions followed by the paternalistic cry of “end it.” Is the unborn or severely disabled child human or not? Is such a child worthy of dignity and care? The author’s revulsion betrays the true subject of “compassion” and “dignity.” It is not the child but the suffering author who represents each of us in this story.
Does this approach capture the fullness and true meaning of dignity and compassion? In the Judeo-Christian tradition, compassion can be described as: “Quality of showing kindness or favor, of being gracious, or of having pity or mercy” and human dignity is grounded in the imago Dei. Therefore, human dignity is: “The unalterable, inherent value due every person by virtue of being a human being.” Utilitarian ethics are foreign to these concepts and ministries that flow from them.
The author fails to identify the cultural and religious beliefs and values of the parents and in turn the child. Actions desired by the author as compassionate may be abhorrent to others. The family’s view of human dignity may extend fully to their anencephalic child. They may view abortion as murder. External pressure by providers, hospitals and insurers adds to their agony.
I am not disagreeing with the decision to withhold high-tech neonatal care from the anencephalic infant. I am questioning the underlying assumptions behind the author’s appeal for compassion and dignity as uncompassionate and undignified by traditional theological and ethical standards. Tragedy and suffering do not demand a utilitarian response but one of grace, mercy, kindness, and love towards all those affected.
At the heart of the debate are two opposing worldviews: utilitarian and Judeo-Christian. History attests that the utilitarian worldview takes us down the same dark road as the Baby Bollinger Case and the Aktion T4 program. We must teach current and future generations of physicians to critically think these issues through and understand the true meaning of compassion and dignity lest we repeat the same horrors.
Soanes, C. & Stevenson, A. eds., 2004. Concise Oxford English dictionary.
Smith, W. J., 2016. Culture of Death Revised ed., Encounter Books, New York
Elwell, W.A. & Beitzel, B.J., 1988. Compassion. Baker encyclopedia of the Bible, 1, p.504.
Grenz, S.J. & Smith, J.T., 2003. Pocket Dictionary of Ethics, p.54.
Robertson, J. D., The Case of the Bollinger Baby., JAMA. 1915;LXV(23):2025
Choice
The Real Choice
Can we then, walk with them during such sad and difficult times in their lives?
When born, the baby is gently placed on her mother skin to skin. She dies quietly, peacefully in the arms of her mother, never knowing hunger, pain, or sadness (1). Her mother will grieve her in some way for the rest of her life. She has loved and lost, but she has also gained. She was able to bond, to love and to hope and she will heal. She is changed but not defeated.
She is not the first and she will not be the last to face the death of a child. Hope for a cure eludes us daily but hope for healing is different. Healing is not just about disease; it is about the spirit, the resilience that rests in all of us. This baby’s life, while brief, was filled with love and dignity and without pain. This baby made her a mother. This baby changed her. All of us die in the end. It is the nature of everything that lives. Death is the final act but it does not tell the whole story. In medicine, we cannot be there only for the living; we must be there for the dying as well.
This is the real story of a real family who delivered in 2015 at Morgan Stanley Children’s Hospital / Columbia University Medical Center in New York, NY under the care of the Neonatal Comfort Care Program (2). In the US there are more than 200 services of Perinatal Palliative Care (3).
References:
1. Parravicini E, Daho M, Foe G, Steinwurtzel R, Byrne M. Parental assessment of comfort in newborns affected by life-limiting conditions treated by a standardized neonatal comfort care program. J Perinatol 2018;38(2):142-7.
2. www.neonatalcomfortcare.com
3. www.perinatalhospice.org