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Audio. Michael A. Lacombe, MD, Annals Associate Editor, reads “The Myth of Choice” by Anonymous
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Elvira Parravicini, Frances McCarthy
Columbia University Medical Center
June 10, 2019
The Real Choice
A woman, pregnant with a baby with anencephaly comes to your hospital. Long-term survival is not an option. Her eyes plead with you. Help me. You take her hand, look her in the eye and offer to walk with her through this journey that she does not wish to be on. You explain to her that while her child’s life may be brief, it is precious and that she is not alone. The mother’s love for her baby does not die with the diagnosis or with the death of her child. Choice is the not the issue. Grief is. The truth of medicine is this: patients die. The issue here is about valuing the relationships that we, as providers, have with our patients. It requires us to be with them in the discomfort of delivering a terminal diagnosis.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
June 13, 2019
Elvira, it is commendable that you have developed a compassionate approach to the delivery of terminal fetuses. However, I interpret your response as a lecture on the ONLY way that grieving women should be allowed to deal with this horrific diagnosis. The issue at hand in this country is CHOICE. The woman who does not want to hold her horrifically deformed fetus, who does not wish to continue a pregnancy (and increasing the already significant risk to her health) in this scenario should be able to CHOOSE. It is her body, her pregnancy, her health at risk, and should be her CHOICE in the way, the time, and the method that this horrible scenario ends.
Anonymous. The Myth of Choice. Ann Intern Med. 2019;170:809. doi: 10.7326/M19-1005
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Published: Ann Intern Med. 2019;170(11):809.
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Print ISSN: 0003-4819 | Online ISSN: 1539-3704
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