Nursing Care at End of Life in Pediatric Intensive Care Unit Patients Requiring Mechanical Ventilation
Acute Disease; Child; Death; Humans; Intensive Care Units Pediatric; Neoplasms; Pain; Respiration Artificial
BACKGROUND: Parents' perceptions of critical care during the final days of their child's life shape their grief for decades. Little is known about nursing care needs of children actively dying in the pediatric intensive care unit (PICU). OBJECTIVES: To examine associations between patient characteristics, circumstances of death, and nursing care requirements for children who died in the PICU. METHODS: A secondary analysis of the data set from the Randomized Evaluation of Sedation Titration for Respiratory Failure trial was conducted. RESULTS: This analysis included 104 children; 67 died after withdrawal of life-sustaining treatments; 21, after failed resuscitation; and 16, after brain death. Patients had a median age of 7.5 years, were cognitively appropriate, and were intubated for acute respiratory failure. Daily pain and sedation scores indicated patients' comfort was well managed (mean pain scores: modal, 0; peak, 2; mean sedation scores: modal, -2; peak, -1). Patients with longer PICU stays more often experienced pain and agitation on the day of death. Illness trajectory (acute, complex chronic condition, or cancer) was associated with pain scores (P = .04). Specifically, children with cancer had higher pain scores than children with acute illness trajectories (P = .01). Many patients (62%) had no change in critical care devices in their last days of life (median, 5 devices). Patterns of pain, sedation, comfort medications, and nursing care requirements did not differ by circumstances of death. CONCLUSION: Children with cancer and longer PICU stays may need comprehensive comfort management. Invasive devices left in place during withdrawal of life support may have inhibited parents' ability to connect with their child. Future research should incorporate parents' perspectives.
Broden EG; Hinds PS; Werner-Lin A; Quinn R; Asaro LA; Curley MAQ
American Journal of Critical Care
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/10.4037/ajcc2022294" target="_blank" rel="noreferrer noopener">10.4037/ajcc2022294</a>
Navigator-Based Intervention to Support Communication in the Pediatric Intensive Care Unit: A Pilot Study
Infant; Adolescent; Child; Preschool Child; Parents/psychology; Emotions; Communication; Family/psychology; Attitude of Health Personnel; Professional-Family Relations; Socioeconomic Factors; Decision Making; Pilot Projects; Patient Discharge; Intensive Care Units Pediatric/organization & administration/standards
BACKGROUND: Communication in the pediatric intensive care unit (PICU) between families and the health care team affects the family experience, caregiver psychological morbidity, and patient outcomes. OBJECTIVE: To test the feasibility of studying and implementing a PICU communication intervention called PICU Supports, and to assess families' and health care teams' perceptions of the intervention. METHODS: This study involved patients requiring more than 24 hours of PICU care. An interventionist trained in PICU-focused health care navigation, a "navigator," met with parents and the health care team to discuss communication, decision-making, emotional, informational, and discharge or end-of-life care needs; offered weekly family meetings; and checked in with parents after PICU discharge. The feasibility of implementing the intervention was assessed by tracking navigator activities. Health care team and family perceptions were assessed using surveys, interviews, and focus groups. RESULTS: Of 53 families approached about the study, 35 (66%) agreed to participate. The navigator met with parents on 71% and the health care team on 85% of possible weekdays, and completed 86% of the postdischarge check-ins. Family meetings were offered to 95% of eligible patients. The intervention was rated as helpful by 97% of parents, and comments during interviews were positive. CONCLUSIONS: The PICU Supports intervention is feasible to implement and study and is viewed favorably by parents.
Michelson KN; Charleston E; Aniciete DY; Sorce LR; Fragen P; Persell SD; Ciolino JD; Clayman ML; Rychlik K; Jones V A; Spadino P; Malakooti M; Brown M; White D
American Journal of Critical Care
2020
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/10.4037/ajcc2020478" target="_blank" rel="noreferrer noopener">10.4037/ajcc2020478</a>
Defining a "Good Death" in the Pediatric Intensive Care Unit
good death; parental perspectives; pediatric intensive care unit; PICU
BACKGROUND: Societal attitudes about end-of-life events are at odds with how, where, and when children die. In addition, parents' ideas about what constitutes a "good death" in a pediatric intensive care unit vary widely. OBJECTIVE: To synthesize parents' perspectives on end-of-life care in the pediatric intensive care unit in order to define the characteristics of a good death in this setting from the perspectives of parents. METHODS: A concept analysis was conducted of parents' views of a good death in the pediatric intensive care unit. Empirical studies of parents who had experienced their child's death in the inpatient setting were identified through database searches. RESULTS: The concept analysis allowed the definition of antecedents, attributes, and consequences of a good death. Empirical referents and exemplar cases of care of a dying child in the pediatric intensive care unit serve to further operationalize the concept. CONCLUSIONS: Conceptual knowledge of what constitutes a good death from a parent's perspective may allow pediatric nurses to care for dying children in a way that promotes parents' coping with bereavement and continued bonds and memories of the deceased child. The proposed conceptual model synthesizes characteristics of a good death into actionable attributes to guide bedside nursing care of the dying child.
Broden E G; Deatrick J; Ulrich C; Curley M A Q
American Journal of Critical Care
2020
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/10.4037/ajcc2020466" target="_blank" rel="noreferrer noopener">10.4037/ajcc2020466</a>
Parents’ Report of Child’s Response to Sibling’s Death in a Neonatal or Pediatric Intensive Care Unit
sibling bereavement
Background Research on sibling death in a pediatric/neonatal intensive care unit is limited, despite many qualitative differences from deaths at home or in hospitals’ general care areas and has overlooked cultural differences. Objectives To describe parents’ reports of children’s responses to a sibling’s death in a neonatal or pediatric intensive care unit via qualitative interviews at 7 months after the death. Methods English-speaking (n = 19) and Spanish-speaking (n = 8) parents of 24 deceased infants/children described responses of their 44 surviving children: 10 preschool, 19 school-age, and 15 adolescent. Parents’ race/ethnicity was 48% black, 37% Hispanic, 15% white. Ten siblings died in the neonatal unit and 14 in the pediatric intensive care unit. Semistructured interviews in parents’ homes were audio recorded, transcribed verbatim, and analyzed with content analysis. Results Six themes about surviving children emerged. Changed behaviors were reported by parents of school-age children and adolescents. Not understand what was going on was reported primarily by parents of preschoolers. Numbers of comments in the 4 remaining themes are as follows: maintaining a connection (n = 9), not having enough time with their siblings before death and/or to say goodbye (n = 6), believing the sibling is in a good place (n = 6), not believing the sibling would die (n = 4). Comments about girls and boys were similar. White parents made few comments about their children compared with black and Hispanic parents. The pattern of comments differed by whether the sibling died in the neonatal or the pediatric intensive care unit. Conclusions Children’s responses following a sibling’s death vary with the child’s sex, parents’ race/ethnicity, and the unit where the sibling died. Children, regardless of age, recognized their parents’ grief and tried to comfort them.
2013-11
Youngblut JM; Brooten D
American Journal Of Critical Care
2013
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).
Journal Article
<a href="http://doi.org/10.4037/ajcc2013790" target="_blank" rel="noreferrer">10.4037/ajcc2013790</a>
Cause Of Death Of Infants And Children In The Intensive Care Unit: Parents’ Recall Vs Chart Review.
Risk; Information; Family-members; Of-life Care; Communication; Nursing Perspectives; Complicated Grief; Critical Care Medicine
BACKGROUND:
More than 55 000 children die annually in the United States, most in neonatal and pediatric intensive care units. Because of the stress and emotional turmoil of the deaths, the children's parents have difficulty comprehending information.
OBJECTIVES:
To compare parents' reports and hospital chart data on cause of death and examine agreement on cause of death according to parents' sex, race, participation in end-of-life decisions, and discussion with physicians; deceased child's age; unit of care (neonatal or pediatric); and hospital and intensive care unit lengths of stay.
METHODS:
A descriptive, correlational design was used with a structured interview of parents 1 month after the death and review of hospital chart data. Parents whose children died in intensive care were recruited from 4 South Florida hospitals and from Florida Department of Health death records.
RESULTS:
Among 230 parents, 54% of mothers and 40% of fathers agreed with the chart cause of death. Agreement did not differ significantly for mothers or fathers by race/ethnicity, participation in end-of-life decisions, discussions with physicians, or mean length of hospital stay. Agreement was better for mothers when the stay in the intensive care unit was the shortest. Fathers' agreement with chart data was best when the deceased was an infant and death was in the pediatric intensive care unit.
CONCLUSIONS:
Death of a child is a time of high stress when parents' concentration, hearing, and information processing are diminished. Many parents have misconceptions about the cause of the death 1 month after the death.
Brooten D; Youngblut JM; Caicedo C; Seagrave L; Cantwell GP; Totapally B
American Journal Of Critical Care
2016
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).
Living With Dying In The Pediatric Intensive Care Unit: A Nursing Perspective
Child; Nurses; Nursing; Death; Compassion Fatigue; Grief; Professionals; Critical Care Medicine; Experiences; Pediatric Intensive-care; Beliefs; Opinions And Attitudes; Management; Critically Ill Children; Health Aspects; Analysis; Nurses; Intensive Care Units Pediatric; Pediatric Nursing; Family; Practice
BACKGROUND:
Despite reported challenges encountered by nurses who provide palliative care to children, few researchers have examined this phenomenon from the perspective of nurses who care for children with life-threatening illnesses in pediatric intensive care units.
OBJECTIVES:
To describe and interpret the essence of the experiences of nurses in pediatric intensive care units who provide palliative care to children with life-threatening illnesses and the children's families.
METHODS:
A hermeneutic phenomenological study was conducted with 12 pediatric intensive care unit nurses in the northeastern United States. Face-to-face interviews and field notes were used to illuminate the experiences.
RESULTS:
Five major themes were detected: journey to death; a lifelong burden; and challenges delivering care, maintaining self, and crossing boundaries. These themes were illuminated by 12 subthemes: the emotional impact of the dying child, the emotional impact of the child's death, concurrent grieving, creating a peaceful ending, parental burden of care, maintaining hope for the family, pain, unclear communication by physicians, need to hear the voice of the child, remaining respectful of parental wishes, collegial camaraderie and support, and personal support.
CONCLUSION:
Providing palliative care to children with life-threatening illnesses was complex for the nurses. Findings revealed sometimes challenging intricacies involved in caring for dying children and the children's families. However, the nurses voiced professional satisfaction in providing palliative care and in support from colleagues. Although the nurses reported collegial camaraderie, future research is needed to identify additional supportive resources that may help staff process and cope with death and dying.
Stayer; Lockhart; J S
American Journal Of Critical Care
2016
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).
DOI: 10.4037/ajcc2016251