To my neonatal colleagues,
I am pleased to introduce a special collection of articles that highlight important work being done to care for some of our most vulnerable infants and their families; Neonatal Palliative, End of Life, and Hospice Care Across Multiple Settings, in issues 2020(2) and 2020(3). In general, an estimated 21 million children around the world are in need of palliative care to treat their life-limiting and life-threatening conditions at any given time.1 Approximately, 6 million of these children live in the United States.2 More than 2 million of these children will die, with up to 55% of deaths occurring in infants younger than 1 year.2,3 This constitutes the highest number of deaths in any pediatric group in the United States.4 Furthermore, about 44 of these infants die PER DAY in a neonatal intensive care unit (NICU). When we think about the quality of palliative and end-of-life (EOL) care that is received and where it is delivered, the number of parents, siblings, grandparents, and care providers who may be affected by that care increases exponentially. To offer palliative or EOL care is not enough; the delivery of care must be thoughtful for the most benefit to be derived for the patient and the family.
The first consideration we must make is to appropriately define both palliative care and EOL care. Both the World Health Organization5 and the American Academy of Pediatrics6 consider palliative care as an overarching concept that begins when an illness is diagnosed, supports the patient and family to relieve suffering across multiple realms (physical, psychological, social, practical, existential, or spiritual), improves quality of life, facilitates informed decision-making, and assists with the ongoing coordination of care among physicians and across sites of care. Palliative care continues across the illness trajectory regardless of whether or not curative treatment is being received, and when and if necessary, it transitions to EOL and bereavement care.
The provision of quality palliative and EOL care to pediatric patients who have life-limiting or life-threatening conditions relies on the ability of their providers to refer them for the right care at the appropriate time in their illness trajectory. The definitions that a provider uses to make determinations for care could result in a delay in referral, or even a lack of referral altogether, to either type of care service or both. Even a delay in referral may deny the infants and their family the full benefit that palliative and EOL care services can add to their comfort level and quality of life. For example, an infant diagnosed with a potentially life-threatening or life-limiting diagnosis who is stabilized but then does not respond to aggressive medical treatment and is simultaneously referred to palliative care as the EOL approaches may not receive the same quality of care as an infant who is referred immediately to palliative care on admission to the NICU using his or her life-threatening/life-limiting illness as a trigger for consultation. Timing is critical in these situations as it can be uncomfortable for both parents and palliative care providers to meet under such stressful circumstances and come to consensus on what could or should be done for the infant and the family. The more time that can be allowed for conversations with the family and discovery of their wishes and needs, the better it is to ensure that the outcomes, although not desired, are the best that they can be given the situation.
Concrete definitions may improve understanding and remove barriers to providing early referral to, or provision of, palliative and EOL care services. Victoria Kain presents a conceptual definition of neonatal palliative care in 2020(3), but all the articles in this series arise from the viewpoint that palliative care provides comprehensive care to patients and their families throughout an illness, no matter how long or short the duration.
The series takes us from moving toward a consistent definition of neonatal palliative care to discovering how palliative care delivery can effectively occur in multiple settings across the continuum from prenatal diagnosis to concurrent care to hospice and through bereavement. Furthermore, the experiences of bereaved parents following stillbirth and neonatal death are presented. Betty Ferrell also discusses how nurses can be best prepared to provide palliative care in the NICU. An increase in provider knowledge of components of palliative care can be facilitated by training that focuses on symptom management, enhanced quality of life, effective communication strategies, and building rapport with families.
Advances in prenatal care and the management of high-risk deliveries have significantly contributed to an increase in the numbers of neonates confronting prematurity, congenital anomalies, or other syndromes who survive initial resuscitation efforts in the delivery room and are admitted to the NICU for curative management. The consequence of increased survival is a concomitant increase in the population of neonates who are at risk for life-threatening or life-limiting illness. For some neonates, it becomes apparent that, despite all of the tremendous technical capabilities available to manage their condition, treatment becomes futile and death is inevitable. Once the decision is made to withhold or withdraw treatment, the emphasis must then turn to managing the EOL process. Infants in each of these scenarios and their families deserve the best care that can be delivered by healthcare providers who are well prepared to provide that care to minimize suffering and improve quality of life.
It is my pleasure to present to you this in-depth series. I hope you will learn through these thoughtful articles how best practice in neonatal palliative care can be so meaningful to patients and families across multiple settings of care. Thank you so much for reading!
Christine A. Fortney, PhD, RN
Assistant Professor
Martha S. Pitzer Center for Women, Children & Youth
The Ohio State University College of Nursing
Columbus, Ohio
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