One of the saddest events in the life of a family is the death of a baby. Sometimes parents are faced with the reality of saying hello and goodbye at the same time. Often, completely stunned by the unexpected outcome, they are left devastated and unable to plan in advance the way they and their baby want to be cared for in the death of their precious little one. In some situations parents have some warning, such as the parents of a baby who know well in advance, in fact, even early in their pregnancy that a good outcome is not expected. Also, parents of a baby in the Neonatal Intensive Care Unit who were not expecting the news that their baby most likely will not survive are often faced with decisions to be made about how to proceed. In the latter two circumstances, perinatal advance directives can aid families and the entire hospital interdisciplinary team to care well for the baby and family in their baby’s dying.
Families in situations in which the reality or risk of losing a baby is realized suffer multiple losses in addition to the anticipated death of a newborn: loss of the expectation for a healthy baby, loss of a normal pregnancy, loss of normal parenting, loss of normal routines and life celebrations such as preparing a nursery or baby showers and birthday parties, loss of future hopes, loss of the opportunity for a joyous homecoming or welcoming, and an overall loss of control.
Original hopes and life plans often have to be realigned and new ones established. A sense of control and coping can be gained through identifying attainable new goals through a birth plan, or perinatal advance directive. When time after a baby is born may be much shorter than expected or much more precious than originally realized, identifying specific realistic wishes to accomplish and providing direction to the health care team on how to best provide compassionate care to their baby is important.
Our large tertiary care hospital has a perinatal palliative care team with the acronym, IMPACT (Infant, Maternal, Pediatric Advanced Care Team), to aid families in difficult situations. The team partners alongside the primary medical team that is already caring for the family and adds an extra layer of support for the family and staff. IMPACT’s goal is to support the best quality of life for the baby (as defined by the family) by giving meaning, dignity, and comfort to babies and their families through holistic family-centered care. IMPACT cares for babies and their families who may be facing life-threatening situations and who pursue curative medical interventions or those who choose to place limits on medical care.
Families who meet the team prenatally are assisted in developing a birth plan including advance directives for their baby to outline the goals of care and identify special opportunities for memory making. Also, IMPACT can assist in establishing a similar plan for babies in Labor & Delivery or the Neonatal Intensive Care Unit, if requested. IMPACT consists of neonatologists, neonatal nurse practitioners, nurses, and a chaplain and works very closely with social work, obstetrics, labor and delivery, and maternal-fetal medicine.
When a family knows in advance of the delivery that their baby will likely not survive or extraordinary measures will need to be implemented to keep their baby alive a consult is made to IMPACT. The neonatologist and often at least one other member of IMPACT will review the medical records of the mother and baby addressing questions they might have, ensuring the family’s understanding of the medical situation, and clarifying the medical condition if needed. IMPACT will develop the birth plan together with the family, addressing each anticipated step along the way from prenatal visits to the delivery and the postpartum period. The goal is to establish a comprehensive unique plan of care that best aligns with the family’s goals. Ultimately, we review appropriate advance directive options such as allowing a natural death while in a supported environment, offering a trial of medical support, or pursuing life-prolonging interventions such as respiratory support with intubation, oxygen without intubation, cardiovascular support, nutritional support, etc. Life-prolonging interventions may be desired while the family comes to terms with the reality of the diagnosis, or may be part of a plan for a special, hoped-for moment. The family may be awaiting a grandparent to arrive to say hello/goodbye, or deeply desire to be able to take their baby home, if only for minutes. These specific advance directives regarding the family’s level of desired medical support often are better addressed after establishing a relationship that includes realizing a family’s hopes and goals, and are often decided after much discussion.
An initial consult with the mother/family often takes two hours as they work through the questions, concerns, and the family’s wishes and desires. It is important work to honor the life of a baby as well as the role of the mother/family in the process. In the beginning of all conversations, it is important to ask if the family has chosen the baby’s name, and if so, inquire about the significance of the chosen name, and use the first name at all times in referring to the baby. The team will ask about how they are honoring the baby in pregnancy, knowing the baby may not survive. This begins by encouraging the family to acknowledge the life alive inside of the mother and recognizing the relationship that already exists. We often encourage the mother and family to actively create memories while still pregnant and offer possibilities such as keeping a diary, playing songs to the pregnant belly, reading books, listening to the heartbeat at each visit, offering a teddy bear that records the heartbeat, and obtaining ultrasound pictures at each visit that can be used in developing a memory book. Pictures of the mother’s pregnant belly can also be stored in such a memory book. We also discuss experiencing memorable activities such as identifying special places to go to while pregnant, such as a park and swinging on a swing.
Details about the circumstances of the delivery are reviewed, including who should be present: family members, friends, religious support, medical team, and IMPACT team members. Also discussed is where the baby’s initial time should be spent: together in mother’s delivery room or transition to a private postpartum room, less intensive pediatric floor, or the Neonatal Intensive Care Unit. Through this discussion each family can establish the desired/anticipated mood for the day of delivery such as private and respectful or a traditional celebratory gathering. A family’s interest in religious or spiritual support during pregnancy, after birth, and at the end-of-life is reviewed. IMPACT strives to support families through considering many possible activities to experience in the time that they have toward the end of the baby’s life—to actively create memories and share lessons learned from previous family’s experiences. We review special opportunities to consider such as holding their baby with warm blankets, bathing and dressing the baby, bringing special blankets or clothing for the baby, taking pictures, making footprints, making molds of the baby’s hands and feet, obtaining a lock of hair, or creating artwork with imprints of hands of the entire family. We are fortunate at our hospital to be able to offer Now I Lay Me Down To Sleep photography services for families and many cherish the very sensitive and beautiful pictures that they provide. Other families have had a birthday cake celebration on the baby’s birth, made Christmas ornaments with the baby’s footprints on them, placed footprints on special cloths, and requested to listen to the baby’s heartbeat with a stethoscope. Importantly, each family and baby’s experience is unique and time is spent the way in which they feel most comfortable. Understanding that families may hold different cultural beliefs, we strive to be open-minded as to what families may deem appropriate, and embrace when they decline or choose something we had not yet considered.
We spend time providing reassurance that the staff will do their best to pay attention to their baby’s comfort and the need for pain control through warmth, holding, drops of colostrum or sucrose, or sublingual opioid medication. Finally, when death has come, we focus on supporting them through their grief. The value of anticipatory guidance about physical changes and expectations through the dying process cannot be overstated. Education regarding physical changes and expectations through the dying process are critical, as many people are unfamiliar with what to expect as physical life ends. Preemptive discussions regarding autopsy, postmortem genetic testing, and funeral planning can be started prenatally to alleviate the need to spend time on those options in the sensitive time after a baby’s death. We also provide information on available community and national resources such as support groups as well as funeral/after death options. We reinforce the awareness that any element of the birth plan/advance directive may be altered at any point and that the development of such a plan is a supported process.
After our team had been working with families for a while, we wondered about a structured advance directive for such a population. Recognizing the uniqueness of each family’s experience and goals, it seems a greater benefit to have a consistent document for the perinatal population to prompt similar opportunities for all families. Our hospital recently embraced the document 5 Wishes as a useful tool throughout the hospital for the adult population. We are grateful that our IMPACT team chaplain was aware of the 5 Wishes document and reached out to the team to see if we knew such a document existed. We were aware of its use in the older pediatric population who could write and advocate for themselves, as well as one in place for teenagers and young adults. A similar document is lacking for the perinatal population and so we embraced the idea of working towards that goal. Currently a multidisciplinary team has been working on such a document and welcomes input from the larger perinatal palliative care community.
- RESTORE CONTROL
- REALIGN HOPE
- CREATE MEANINGFUL MEMORIES
- ACKNOWLEDGE AND HONOR A BABYS LIFE
This article was originally published in the May 2015 edition of NHPCO’s pediatric e-journal that is produced by the ChiPPS workgoup. Learn more about NHPCO’s pediatric palliative and hospice care resources and find links to past editions of the e-journal at nhpco.org/pediatrics.