[Editor’s Note: Amy Kuebelbeck is editor of perinatalhospice.org, a clearinghouse of information about perinatal hospice and palliative care, including many resources for parents and caregivers as well as an international list of more than 300 programs. She is lead author of A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life Is Expected to Be Brief (Johns Hopkins University Press), and she described her experience of continuing a pregnancy with a life-limiting prenatal diagnosis in her memoir, Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life (Loyola Press). She spoke with Charles Camosy.]
Camosy: You were recently at a perinatal hospice in Rome. What happened?
Kuebelbeck: It was incredible to hear Pope Francis say the words perinatal hospice — actually, in Italian, “hospice perinatale.” I wish all of the medical professionals who have pioneered this care or who are now providing it could have been in the room as well. Their cumulative work — along with the beautiful stories of many families — is inspiring people around the globe and helping more people than they may ever know.
The private papal audience on May 25 for conference attendees was the culmination of a three-day conference titled “Yes to Life! Caring for the precious gift of life in its frailness,” about caring for the most fragile of little lives, especially through the accompaniment of perinatal hospice. It was co-sponsored by the Vatican Dicastery for Laity, Family and Life and Fondazione Il Cuore in Una Goccia Onlus, an Italian nonprofit led by Dr. Giuseppe Noia, who started a perinatal hospice program at Gemelli hospital in Rome. The event drew about 400 people from all around the world for presentations from obstetricians, neonatologists, bioethicists and others about prenatal diagnosis, medical ethics and more. The conference was multilingual — attendees wore headsets for simultaneous translation of the presentations into English, Italian, Spanish and French. It was truly an honor to be invited to moderate one of the days.
For anyone who might be encountering the concept of perinatal hospice for the first time, some explanation: Perinatal hospice and palliative care is a practical and compassionate model of care for those continuing a pregnancy following a prenatal diagnosis indicating that their baby has a life-limiting condition and might die before or shortly after birth. As prenatal testing continues to advance, more families are finding themselves in this heartbreaking situation. In too many places, abortion still is the default recommendation — or the only option presented — and parents who desire to continue their pregnancies are essentially abandoned. Perinatal hospice accompanies these parents as they embrace the life of their baby for however long the baby is able to live.
Perinatal hospice support begins at the time of diagnosis, not just after the baby is born. It can be thought of as “hospice in the womb” (including birth planning, emotional support for the family, and preliminary medical decision-making before the baby is born) as well as more traditional hospice and palliative care at home after birth (if the baby lives longer than a few minutes or hours). It includes essential newborn care such as warmth, comfort, and nutrition. It involves siblings and extended family and friends, as well as memory-making such as photography. Palliative care can also include medical treatments intended to improve the baby’s life. Perinatal hospice is not a place. It is a model of care, an extra layer of support that can easily be incorporated into standard pregnancy and birth care just about anywhere. Perinatal hospice is a beautiful, practical and life-affirming response to one of the most heartbreaking challenges of prenatal testing.
The concept and the term “perinatal hospice” first appeared in the medical literature in 1997 in an article by Dr. Byron Calhoun, a U.S. maternal-fetal medicine specialist who was one of the presenters in Rome. As Dr. Noia told conference attendees, one good deed results in one good deed, while a good idea has a thousand effects. There are now well over 300 perinatal hospice and palliative care programs listed on my website.
I liked the gentle manner in which Dr. Ana Martín Ancel, a neonatologist at Hospital Sant Joan de Déu in Barcelona, explained her perinatal palliative care program at the conference. She said, “There are many actions and interventions that can help people experience these moments in a different way.”
Why do you think the Catholics should take an interest in perinatal hospice? In what ways did this conference try to make the case?
Although perinatal hospice did not originate out of a Catholic perspective, this model of care aligns beautifully with the Catholic principle of honoring life from conception through natural death. In these cases, the time between those two turning points is dramatically condensed. While this is a form of care that all hospitals that deliver babies should be providing, it is an especially good fit with hospitals and health care organizations that have a Catholic mission.
My sense was that this conference was mostly to help raise awareness in pastoral and medical circles and to help plant the seeds even more widely around the world.
Pope Francis made some interesting remarks at the event, including on abortion. The abortion language made headlines, but what were your takeaways from his remarks?
The heart of Pope Francis’s address was a passionate defense of fragile nascent life, a strong endorsement of perinatal hospice and palliative care when a baby is not expected to survive for long, and an urgent call for pastoral action to create “networks of love” for these families.
The remark that made headlines was not in his prepared address; it was an off-script comment. (Attendees were given printed translations of his prepared text in English, Spanish and French, and he spoke in Italian.) Those few sentences went over my head, and I was surprised afterward to see that “Pope compares abortion to hiring a hitman” became the headline of the day in some media. He has used that word before, and it isn’t news that the Catholic Church rejects abortion. Unfortunately, in focusing on this comment some coverage missed the crux of his address and missed what really was new.
Some excerpts from Pope Francis’s address that were more representative:
“These are the children that the culture of rejection sometimes describes as being ‘incompatible with life.’ No human being can ever be incompatible with life, either because of their age, their state of health or the quality of their existence. Every child that presents itself in a woman’s womb is a gift that is about to change a family’s story, that of a father and a mother, of grandparents and of siblings. This child needs to be welcomed, loved and nurtured. Always!”
“Fetal therapies, on the one hand, and perinatal hospices, on the other, achieve surprising results in terms of clinical care, and they provide essential support to families who embrace the birth of a sick child.”
“Perinatal comfort care is an approach to care that humanizes medicine. It involves a responsible relationship with the sick child who is accompanied by the staff and his or her family in an integrated care process. They never forsake the child but allow the little one to feel human warmth and love.”
“This is especially necessary, with our current state of scientific knowledge, for children who are destined to die immediately after birth or shortly afterwards. In these cases, the treatment may appear to be an unnecessary use of resources and further suffering for the parents. However, with attentive observation, one can perceive the true purpose of this effort which is aimed at bringing family love to fulfillment. Indeed, it is in taking care of these children that parents are helped to process their mourning and to comprehend it as not only loss, but also as a stage in a journey that has been travelled together. That child will remain in their lives forever. And they will have had the opportunity to love their child.”
“The practical, human and spiritual difficulties are undeniable, but it is precisely for this reason that more incisive pastoral action is urgent and necessary to support those who have sick children. It is necessary, therefore, to create spaces, places and ‘networks of love’ to which couples can turn, as well as devote time to assisting these families.”
“Thank you, then, to all of you who are working for this. Thank you in particular to the families, mothers and fathers, who have accepted fragile life who are now supporting and helping other families. Your witness of love is a gift to the world.”
A thread that includes the full text of his prepared remarks is here.
One would think that the two major factions in the abortion debate would support perinatal hospice. Pro-lifers want to protect prenatal children, especially those who are sick or disabled, from the violence of abortion — and pro-choicers want to give women more support to more choice and options. So why hasn’t there been widespread, bipartisan support for perinatal hospice?
During the past 20 years there has been a groundswell of quiet, apolitical support among medical professionals and parents. This model of care has been spreading so widely and so quickly in the medical field because it fills a real need and because parents have found it to be beautiful, profoundly meaningful and healing.
I think there hasn’t been widespread public bipartisan support yet for a number of reasons, including the fact that severe fetal anomalies affect only a tiny percentage of pregnancies; societal reluctance to deal openly with death, especially at the beginning of life, and an assumption that we already have a solution for cases like these.
Perinatal hospice and palliative care appeals to people all along the spectrum of opinion on abortion and deserves even wider support. People who oppose abortion can support perinatal hospice as a way to honor a baby whose life has intrinsic value, no matter how brief or “imperfect.” People who support legalized abortion can also support perinatal hospice as a rational, healing, affirming choice that should be offered to parents as an alternative to terminating the pregnancy.
Parents who prefer to continue their pregnancies hold varying opinions on the issue of abortion; many say their decision to continue is a parenting decision, not a political one. Perinatal hospice transcends the abortion debate.
Where can those who want to support perinatal hospice, perhaps in their local health care communities, get resources for thinking about this?
Many programs have started with the inspiration of one person — perhaps a caregiver who has seen firsthand the need for this kind of support, or perhaps a parent who lived the experience and wants to ensure that other parents don’t walk this path alone. Most programs are based in hospitals or clinics, some are hospice-based, and a few are faith-based or independent. Many resources are available at perinatalhospice.org.
Although this care is not expensive, some costs for staff time and training are involved. There are many ways to help, including helping a program to grow and funding education for health professionals. Many perinatal hospice and palliative care programs operate on shoestring hospital budgets or depend on grants and donations. If someone would like to support this care financially, consider contacting one of the existing programs — or a hospital or hospice that hasn’t yet created a program — to ask if you can help with any needs, such as donating to a hospital foundation account earmarked specifically for perinatal hospice and palliative care or providing funding for other specific needs.
Raising awareness is also a way of supporting this care. Sometimes parents aren’t given information about this option at the time of their baby’s diagnosis and learn about it only because someone had previously shared information on social media. Much shareable information is at facebook.com/perinatalhospice and on Twitter under @perinatalhospic.
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