Implementation of Pediatric Palliative Care (PPC) in a Neonatal Intensive Care Unit (NICU) in St.Gallen
decision making; death; newborn; Switzerland; trisomy 18; major clinical study; newborn period; pregnancy; neonatal intensive care unit; conference abstract; human; child; female; male; palliative therapy; drug withdrawal; brain hemorrhage
Introduction: The Children's Hospital of Eastern Switzerland (OKS) is a hospital with 76 beds. A multiprofessional PPC and ethic team was established in 2007. After nine years of intensive development our PPC program reached full size (notification D) of sanaCERT Suisse certification. Until presently, the OKS is the only children's hospital in Switzerland which is certified in PPC. Furthermore, our PPC team is a member of the Pediatric Palliative Care Network Switzerland (PPCNCH). In order to focus on neonates, the biggest group needing PPC, we decided to develop a special program for Neonatal Palliative Care (NPC). Background(s): According to epidemiologic data, 400-500 children between the age of 0 and 18 years are dying in Switzerland each year. It's known from the PELICAN study (Bergstrasser; Zimmermann et al., 2016), that about 50% of these children are dying in the first year of life, of which 40% in the neonatal period. Four out of five children are dying in an ICU, the majority of them after a decision-making process with the decision to withhold or withdraw further treatment. Apparently, the neonates represent an important group and therefore it is reasonable to concentrate on NPC in the NICU. Case presentation: We present three neonatal patients suffering from severe, life threatening conditions: one newborn with trisomy 18, one premature of 32 week of gestation with a large intracerebral hemorrhage and a neonate with a life threatening conditions. The presentations demonstrate the difficulties and challenges and illustrate the importance of the involved teams networking in decision making and implementing care for these patients and their families under particular circumstances. The circumstances of death and the definitions of withholding or withdrawing therapy will be explained. Furthermore, the different requirements, discussions and the resources available in these cases will be presented. This indicates the possible improvements and developments in that area. Conclusion(s): Neonates are an important group to consider in a PPC program. Considering that the neonatal period is a very special phase of life for the child and his/her family deserve particular consideration and structures in order to treat them adequately. Caring for a neonate and his family needing PPC is a challenging task for the family and the multiprofessional team. Clear structures and allocated resources are very important to fulfill this need in a meaningful way.
Gudrun J; Susanne A
Swiss Medical Weekly
2017
Palliative care in neonatal period and ethical issues
medical ethics; newborn care; palliative therapy; clinical decision making; communication skill; ethical decision making; family attitude; History; Human; morality; Newborn; newborn period; nurse attitude; Perinatal Care; physician attitude; review; Terminal Care
Perinatal palliative care is the active total care of the fetus who has been diagnosed with a life-limiting condition with his/her entirety and also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease. Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited, various barriers to provide palliative care were identified ranging from ethical, moral and attitudinal of physicians, nurses and families. These problems can be solved with providing for the education and training needs of physicians, GPs and nurses in aspects of palliative care, decision making in end-of-life situations, and communication skills.
Turkcapar AF
Anestezi Dergisi
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
n/a
The Case for Advance Care Planning in the NICU
Case Planning; NICU; Decissional-Support; Advanced Care Planning; ACP; Newborn Period
Many NICUs have reached an inflection point where infant deaths following limitation of life-sustaining treatments outnumber those following unsuccessful resuscitations, and many infants who survive continue to require intensive supports. Families of such infants with serious illness may benefit from a standardized, process-oriented approach in decisional-support. Advance care planning (ACP), or communication that supports patients, or their surrogate decision-makers, in sharing values, goals, and preferences for future medical care, is recognized as a valuable strategy in supporting adults with serious and chronic illness. Although the role of ACP in older children and adolescents is evolving, its utility has not been systematically explored in the perinatal context. This article builds a case for formalizing a role for ACP in the NICU by defining ACP and appraising recent outcomes research, reviewing the current state of parental needs for decisional support and serious illness in the NICU, and describing how ACP may address current limitations in primary and specialty pediatric palliative care and challenges for decision-making in the newborn period.
Lin M; Sayeed S; DeCourcey DD; Wolfe J; Cummings C
Pediatrics
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2022-057824" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-057824</a>
Whispers in the waiting room
waiting room; anticipatory grief; article; child; clinician; disability; family; human; intensive care unit; life sustaining treatment; longevity; newborn period; palliative therapy; parent; watchful waiting
Kim, aged 3 years, lies asleep, waiting for a miracle. Outside her room, the nurses on the night shift pad softly through the half-lighted corridors, stopping to count breaths, take pulses, or check the intravenous pumps. In the morning, Kim will have her heart fixed. She will be medicated and wheeled into the operating suite. Machines will take on the functions of her body: breathing and circulating blood. The surgeons will place a small patch over a hole within her heart, closing off a shunt between her ventricles that would, if left open, slowly kill her. Kim will be fine if the decision to operate on her was correct; if the surgeon is competent; if that competent surgeon happens to be trained to deal with the particular anatomic wrinkle that is hidden inside Kim's heart; if the blood bank cross-matched her blood accurately and delivered it to the right place; if the blood gas analysis machine works properly and on time; if the suture does not snap; if the plastic tubing of the heart-lung machine does not suddenly spring loose; if the recovery room nurses know that she is allergic to penicillin; if the "oxygen" and "nitrogen" lines in the anesthesia machine have not been reversed by mistake; if the sterilizer temperature gauge is calibrated so that the instruments are in fact sterile; if the pharmacy does not mix up two labels; and if when the surgeon says urgently, "Clamp, right now," there is a clamp on the tray. If all goes well, if ten thousand "ifs" go well, then Kim may sing her grandchildren to sleep some day. If not, she will be dead by noon tomorrow. If Kim were an astronaut, strapped into her seat at the top of some throbbing rocket, the crowd assembled would hold their breath in the morning Florida sun. "How can it possibly work?" they would whisper. "How many parts are there in that machine? A million? What if one fails? My toaster fails. Please let it all work right." The machine would bellow smoke, the gantry fall away, and slowly the monster would rise, Kim on top. If it worked, they would cheer. "A miracle," they would shout, in awe that the millions of tiny lines of effort, the millions of tiny lines of cause and effect, from job shops in Ohio and laboratories in Pasadena, criss-crossing through time and space, could converge so magnificently in a massive, gleaming rocket launched exactly right. Perfect. If it failed, they would cry. So would the rocket's makers, who had done their very best. No one wanted it to end this way. Poor Kim. What was the trouble? What went wrong? Why? The lines of cause will converge around Kim in the morning as she wheels toward the operating room. Thousands upon thousands of elements weaving a basket to hold her safely, all hope. No crowd holds its breath tonight; but wouldn't they if they knew? From: Berwick DM. Controlling variation in health care: a consultation from Walter Shewhart. Medical Care 1991; 29: 1212-1225.
Cooper MS; McCallum Z; Antolovich G
Brain
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1093/brain/awad333" target="_blank" rel="noreferrer noopener">10.1093/brain/awad333</a>