Monday, October 17, 2016

"Incompatible With Life," Compatible With Love: Perinatal Hospice and Palliative Care

by Amy Kuebelbeck

It's a relatively new phenomenon: With advances in prenatal testing, some parents who are happily anticipating the birth of their baby instead receive the devastating news that their baby is expected to die.

Then what? Often, the default recommendation is to terminate the pregnancy and try again. A growing number of parents prefer to continue their pregnancies and embrace their babies' lives for however long they might last, even if that time is only before birth. But a distressing number of these parents report feeling abandoned by their caregivers and even chastised and criticized for choosing this path.[1]

As one mother told me, “The only option offered was termination. In spite of us insisting we wanted to continue this pregnancy, the medical personnel who handled us on the day of the diagnosis didn’t offer us any other help. They kept emphasizing that ‘no one carries a baby with this condition’ and how terrible it would be. They kept saying that Trisomy 18 is ‘incompatible with life.’ The pressure to terminate was tremendous.”[2]

In response to the needs of parents like this, a new model of care has been quietly growing. First proposed in the medical literature in 1997[3] and then making its debut in the American Journal of Obstetrics and Gynecology in 2001,[4] the concept was dubbed perinatal hospice. It integrates the philosophy and expertise of hospice and palliative care with best practices in perinatal bereavement care for miscarriage, stillbirth, or infant death.

Perinatal hospice is not a place. It is an extra layer of multidisciplinary support that can easily be incorporated into standard pregnancy and birth care. This support begins at the time of a life-limiting prenatal diagnosis and continues throughout the remainder of the pregnancy and the baby's birth, life, and death. It can be thought of as "hospice in the womb" (including birth planning, preliminary medical decision-making before the baby is born, and support for anticipatory grief) 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. Rather than "doing nothing," perinatal hospice is an extraordinary form of physical and emotional care that honors the baby as well as the family.

As the concept of perinatal hospice has spread, and as palliative care has become a medical subspecialty in its own right, this concept has also come to be called perinatal palliative care. Like palliative care for adults, perinatal palliative care is not limited to end-of-life care and can include medical treatments intended to improve the baby's life. This is especially important for life-limiting conditions such as Trisomy 13 or Trisomy 18 that are often dismissed as "incompatible with life," a "lethal diagnosis," or a "fatal fetal abnormality," but for which extended survival is possible.[5] Perinatal palliative care allows these babies to lead the way. For many parents, even a life that lasts only a few minutes after birth is profoundly meaningful. In addition, for parents who are given a stark choice between termination or aggressive medical intervention that would be unduly burdensome to the baby, perinatal palliative care offers a third way.

This innovative and compassionate model of care aligns well with core principles of palliative care, including these from the World Health Organization: Palliative care "affirms life and regards dying as a normal process" and "intends neither to hasten or postpone death."[6] As one Australian neonatologist and bioethicist wrote, "We are now reaching palliative care's final frontier — the needs of infants and foetuses who are dying before they have even been born."[7]

This concept not only draws upon the field of hospice and palliative care, it incorporates advances in perinatal bereavement care that also have developed over the last few decades. For many years, the death of a baby was considered taboo. Parents were forbidden from even seeing a newborn who was stillborn or dying and were told to "forget about it" and have another one. Babies' bodies often were disposed of as medical waste. Although caregivers may have been motivated by compassion, in hopes of protecting parents (and perhaps themselves) from emotional pain, some parents eventually stepped forward to say that this pretend-it-never-happened approach was deeply damaging. Together with caregivers, they worked together to develop practices that would foster healthier grief.[8] Many hospitals have now adopted best practices for perinatal bereavement care, including encouraging parents to see and hold their baby if they wish; assisting parents in collecting keepsakes such as footprints and photographs;[9] providing respectful care of the baby's body after death; and acknowledging the baby as a unique and irreplaceable child.

Since the concept was proposed two decades ago, perinatal hospice and palliative care has had exponential growth. More than 280 support programs in the U.S. and around the world are now listed at perinatalhospice.org, the website I founded in 2006. Protocols and training have been developed.[10] Growing numbers of parents are choosing to continue their pregnancies when perinatal hospice care is offered—in one study, as high as 85 percent.[11] New prenatal testing practice guidelines from the American College of Obstetricians and Gynecologists and the Society for Maternal-Fetal Medicine recommend that post-diagnosis counseling for parents should include the option of perinatal palliative care.[12] And according to a literature review published in the Journal of Obstetric, Gynecologic, and Neonatal Nursing, "The science suggests that perinatal palliative care is welcomed by parents and is a medically safe and viable option."[13]

In the words of another mother, "By giving my son the protection of my body to face the announced death, I was giving him life, all of his life, so that it would be recorded in our family, in all of our history, and in the hearts of each of us. It wasn’t a morbid walk but a formidable surge of love."[14]

We welcome your thoughts about this in the upcoming #HPM tweetchat on Wednesday October 19, when we will discuss the following questions:

T1 - Are perinatal hospice/palliative care services available at your institution/agency, or in your area?
T2 - What barriers do you see to providing perinatal hospice/palliative care services? What tools would be most useful to overcome those?
T3 - What strengths do #hpm professionals bring to the care of seriously ill babies both before and after birth? What would you like to see happen in this field next?

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 10/19/2016 - 9p ET/ 6p PT
Host: Amy Kuebelbeck

 and go to www.hpmchat.org for up to date info.

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

For more on past tweetchats, see our archive here.

Amy Kuebelbeck, MA, a former reporter and editor for The Associated Press and other news organizations, 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, 2011.)  She can be reached on Twitter at @PerinatalHospic.

References:
  1. Sumner LH. Taking Palliative Care into Pregnancy and Perinatal Loss. National Perinatal Association Bulletin. 2004 Fall; 5(2).
  2. Kuebelbeck A. and Davis DL. A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief (Johns Hopkins University Press, 2011), p. 23.
  3. Calhoun BC, Hoeldtke NJ, Hinson RM, Judge KM. Perinatal hospice: should all centers have this service? Neonatal Netw. 1997 Sep;16(6):101-2.
  4. Hoeldtke NJ, Calhoun BC. Perinatal hospice. Am J Obstet Gynecol. 2001 Sep;185(3):525-9.
  5. Linebarger J. Trisomy 13 and 18: When a lethal condition is no longer lethal. Pallimed: A Hospice & Palliative Medicine Blog, Aug. 15, 2016.
  6. World Health Organization definition of palliative care: who.int/cancer/palliative/definition/en/
  7. Wilkinson D. "We need palliative care for babies facing certain death." The Conversation (Australia), July 15, 2013. 
  8. See Share Pregnancy & Infant Loss Support, founded in 1977, and Resolve Through Sharing Bereavement Services at Gundersen Health System, founded in 1981.
  9. See Now I Lay Me Down to Sleep, an international network of thousands of professional photographers who volunteer to provide grieving families with remembrance photography of their baby, founded in 2005. See also the pioneering work of photographer Todd Hochberg, toddhochberg.com.
  10. See the Resources for Caregivers page at perinatalhospice.org.
  11. Calhoun BC, Napolitano P, Terry M, Bussey C, Hoeldtke NJ. Perinatal hospice: Comprehensive care for the family of the fetus with a lethal condition. J Reprod Med. 2003 May;48(5):343-8.
  12. American College of Obstetricians and Gynecologists and the Society of Maternal-Fetal Medicine Practice Bulletin No. 162: Prenatal Diagnostic Testing for Genetic Disorders. May 2016
  13. Wool C. State of the Science on Perinatal Palliative Care. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 2013 May/June; 42(3):372–382.
  14. Kuebelbeck and Davis, p. 343. Quotation translated from the book Un enfant pour l’éternité (A Child for Eternity) by Isabelle de Mézerac (Éditions du Rocher, 2004) and used with permission of the author. De Mézerac is the founder of Soins Palliatifs et Accompagnement en Maternité (SPAMA), a support association based in France.
Photo credit: iStock.

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