Saturday, December 2, 2023
Baby George lived only 15 minutes. Fifteen minutes that for his mother, Marcella, would last a lifetime. At first, Marcella didn't understand the strong aching she felt in her arms. Why she found herself carrying around a 5-lbs. bag of flour, a pineapple wrapped in a towel.
When brand new life and death are separated by mere minutes, as they were for Marcella's infant son, how can we help families celebrate these short lives? In "Neonatal Palliative Care: A Model for Community Collaboration," Liz Sumner, BSN, RN, outlined ways that we can create "shelters in the storm" that preserve the dignity of experiences that families expect to be of great joy, but at some point along the way, turn into immense sadness.[1] Educational and practical resources for neonatal staff who wish to develop or improve palliative care programs based in their neonatal intensive care unit (NICU) settings are included at the end of this report.
It is worth taking a moment to reflect on how thin a veil separates us from the families we serve. Indeed, many of us have already or will at some time in the future be touched by similar tragedies. Each year in the United States, nearly 900,000 families are affected by perinatal tragedies, including 800,000 miscarriages, 33,000 stillbirths, and 18,000 neonatal deaths.[1]
When postneonatal mortality is added to this list, the numbers climb. In 2002, the infant mortality rate in the United States was 7 per 1000 live births, or about 28,000 infants under the age of 1 year.[2] The 10 leading causes of infant death are all too familiar to maternal-child healthcare professionals: congenital malformations, low birthweight, sudden infant death syndrome, complications of pregnancy, cord and placental complications, accidents, respiratory distress, bacterial sepsis, circulatory diseases, intrauterine hypoxia, and birth asphyxia.[2]
The goals of palliative care for children and families are to prevent and relieve suffering and to support the best possible quality of life, regardless of the stage of illness or the length of that life.[1,3] Palliative care is the comprehensive management of physical, psychological, social, spiritual, and existential needs.[4] On the surface, it seems perfectly reasonable and natural that families should expect, and receive, this degree of comfort, compassion, and quality caring from healthcare professionals at what otherwise could be the darkest moments of their lives.
Yet in a recent in-depth look at what really happens in our nation's hospitals, where most infants die, the Institute of Medicine reported that insensitivity, discontinuity, and unnecessary suffering continue to pervade the experience for too many families of dying children.[5] Not enough hospitals have formal palliative care programs with the full range of services needed to prevent fragmentation and gaps in care that leave families feeling isolated at their time of greatest need.[5] And without these programs, families have only the bedside caregivers to turn to: the physicians, nurses, and other health professionals who, though dedicated and well-meaning, might be lacking in the specific education, skills, experience, and level of personal comfort required to provide effective end-of-life care.
Palliative care is both a philosophy of care and an organized, highly structured system of delivering care.[3] Although the concept of palliative care is not new, it has only recently been applied to the neonatal population. Even when pediatric palliative care services are available, however, they are underused by NICU populations.[6] The reasons for this are not fully understood, but are likely to include misconceptions about palliative care: what it is, what it offers, and how it differs from other terms related to terminal care (hospice, end-of-life care, bereavement care).
Palliative care begins with the diagnosis of a life-threatening/terminal condition, and continues throughout the course of illness regardless of the outcome. Palliative care enhances the quality of life in the face of an ultimately terminal condition. Its focus is on the relief of symptoms (eg, pain, respiratory distress) and conditions (fear, anxiety, isolation) that cause emotional distress. Palliative care is early and ongoing. It seeks to add life to the time the child has left, not to add time to the child's life.[7] In the case of critically ill neonates, many of the healing components of palliative care (those meeting the cognitive, emotional, and spiritual needs) are geared more toward the infants' family members.[8]
Hospice care refers to an organization or program that provides, arranges, coordinates, and advises on a wide range of medical and supportive services for patients with life-threatening illness and those close to them.[5] A hospice is not a place per se, but a special way of caring that can be provided in a variety of settings, including the home.
End-of-life care is a term used in a general sense to refer to all aspects of care of a patient with a potentially fatal condition, or more narrowly to describe care that is focused on specific preparations for an impending death. The latter might include wishes regarding do-not-resuscitate (DNR) orders, tissue or organ donation, and plans for final moments, such as compassionate extubation (see below) or private family rituals.
Bereavement care is continuing care of the survivors who have experienced the loss of the infant. The survivors are not only the parents but siblings, grandparents, other relatives, friends, nurses, physicians, and other staff members who have cared for the infant.
A vital precept of palliative care is that it can be delivered concurrently with life-prolonging care, or as the main focus of care.[3] This is important because it simply isn't possible to tell with certainty which critically ill infants will survive and which will die. Even when death is considered fairly certain, it isn't always possible to predict when death will occur. Hope is a powerful and important element of palliative care for families. "Hoping for the best while preparing for the worst" can enable families to continue doing everything possible to help their child survive while accepting that death is likely and preparing for it.
Sometimes, as incomprehensible as it sounds, babies are literally "born dying."[1] Both the existence of disorders incompatible with extrauterine life and unexpected complications of the birth process can bring birth and death into close proximity. What little time these families have to spend with their newborn babies is precious; if it is missed, it is gone forever.[5] When families haven't had time to plan for these moments, health professionals must be ready to guide them.
In other situations, advances in medicine and clinical care are saving and prolonging the lives of many infants, including those with extreme prematurity and congenital anomalies, who in previous decades would have died much sooner after birth.[5] Families of these infants might have more time to anticipate their child's death and make known their wishes and desires about end-of-life care.
And finally, when the diagnosis of a life-threatening condition is made prenatally, there is an opportunity for palliative care to begin before the baby is born.[1] For parents who choose continuation of pregnancy after being informed of the lifelong implications or possible premature death of their newborn and exploring their full range of options, palliative care can begin in the community at the time of prenatal diagnosis. What often happens now in these circumstances is that the family is told to "come back when you are in labor," leaving them feeling alienated and isolated during the remaining months of pregnancy as they try to deal with the impending birth and death of their newborn baby. Ideally, a perinatal palliative care program would follow the family seamlessly into the hospital setting for the birth of the baby, and back to the community for bereavement care.
Critically ill neonates that are not expected to survive are often intubated and supported on mechanical ventilation. Thus, at some point, the issues surrounding when and how to discontinue mechanical ventilation become central in planning of end-of-life care. This is an event often dreaded by families; if carefully planned and executed, extubation can instead provide a truly sacred and meaningful final time together with their baby.[1]
"Compassionate extubation" is the withdrawal of life support in the home, a hospice, or a home-like setting within the hospital, surrounded by loved ones.[9] The infant is transported while still on life support to the extubation site. The entire procedure is personalized in accordance with the family's wishes, much like a birthing plan. Allowing families to choreograph the details is intended to make the experience as meaningful for them as possible.[1] The family is told what is likely to occur once the endotracheal tube is removed, allowing them to plan how they would like to spend this time with their infant.
The experience will be different for every family. For the family of 5-day-old baby Raymundo, born with severe heart malformations and prenatally diagnosed hydrocephalus, hope faded fairly quickly. His defects were more severe than anticipated, and even surgery could not repair his damaged brain. His family decided the most compassionate thing to do was to let their son die.[9] He was transported from the NICU to the hospice center, where a large room had been prepared for him: the blinds opened to let the sunshine in, large comfortable chairs, a sofa, crib, and balcony. A quiet CD was playing. The hospice team was comprised of a nurse physician, social worker, and chaplain. The baby's parents and extended family were all there, and when the family was ready, the baby was extubated. The mother gasped, and whispered, "Mire, carita bonita" (Look at his beautiful face). Raymundo lived for 7 hours, surrounded by his family.[9]
Compassionate extubation requires collaboration between NICU staff and palliative care professionals and/or other individuals who will be involved in end-of-life or bereavement care. Because it is never possible to predict how long a baby will live once he or she is extubated, if the infant is being discharged, plans for home care, including durable medical equipment, oxygen, and medications, must be made in the event that the infant lives longer than expected.[9] A planning conference should be held with the family and staff members who will be involved in carrying out the compassionate extubation protocol to ensure that everyone understands the family's needs and desired goals.[9]
Like palliative care in general, hospice care for neonates has not yet been widely adopted.[10] A number of myths about hospice care for infants could be contributing to the low use of hospice programs[1]:
In fact, families are not taking their babies home to die, but to welcome them to the homes that they have lovingly prepared for them.[1] The homecoming is one of the experiences that parents missed out on when their newborn did not leave the hospital. Taking the baby home for hospice care allows them to experience a milestone of parenting they missed out on. Although this time may be very short, it is something they will always remember. Being able to use the room they originally prepared for the baby and feeling the baby's presence in the home will leave a lasting impression that is much more personal than death in the hospital.[1]
Palliative care of the neonate emphasizes family-centered care.[5] Families of an infant with a life-threatening condition need to feel cared for and connected to healthcare professionals. They need to retain the right and responsibility to remain the parents to their infant, even if their infant is dying.[1] Allowing them to have control whenever possible during a situation of overwhelming powerlessness is important in supporting their role as parents. Focusing on the human experiences of families will strengthen the connections between caregivers and families.[8]
Other ways we can make a difference to families experiencing the death of an infant include:
Whenever possible, plan ahead to make the experience of dying as meaningful as possible for families. Ask parents how they would like to use the time that they will have with their baby. Some hospitals have rooms set aside for grief/bereavement ("Butterfly Rooms") providing home-like spaces for extended families to gather with the baby. Sumner points out that as we carry out our bereavement care procedures, it is the human element that we bring to the task that makes all the difference.
The National Consensus Project Clinical Practice Guidelines for Quality Palliative Care
http://www.nationalconsensusproject.org/guideline.pdf
When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families (online text of the Institute
of Medicine's report)
http://www.nap.edu/books/0309084377/html/index.html
Precepts of Palliative Care for Children, Adolescents, and Their Families
http://www.pedsnurses.org/html/LastActsPrecepts03.pdf
Children's Hospice International
http://www.chionline.org
The End-of-Life Nursing Education Consortium (ELNEC), a Robert Wood Johnson Foundation funded project, is a national educational
curriculum to prepare nurses in end-of-life care. A version for pediatric palliative care nursing education was adapted from
the ELNEC curriculum to provide current education and extensive knowledge for nurses related to palliative care for children,
including neonates. Information about regional training opportunities is available at:
http://www.aacn.nche.edu/ELNEC/UpcomingTrainings.htm#Pediatric.
MISS Foundation
http://www.missfoundation.org
