"What Would Give Her the Best Life?": Understanding Why Families Decline Pediatric Home Ventilation
pediatric decision making; pediatric palliative care; pediatric quality of life; Qualitative Research; tracheostomy; Ventilators; Mechanical
Background: Families who must decide about pediatric home ventilation rely on the clinicians who counsel them for guidance. Most studies about pediatric home ventilation decisions focus on families who opt for this intervention, leaving much unknown about the families who decline. Objective: To describe the rationales of families who decline home ventilation. Design: Semi-structured interview study. Setting/Subjects: We interviewed 16 families in hospitals across 3 U.S. states, identified by their clinicians as previously deciding to not pursue home ventilation via tracheostomy within the past five years. Measurements: Targeted content and narrative analyses were used to understand family intentions and reasons for declining. Results: The clinical and social context varied among the 16 families in this study. Families' intentions in saying "no" fell into two categories: (1) definitive "No": Families who stood firm on in their decision and (2) contingent "No": Families who may consider this in the future. Families described four reasons why their child did not receive home ventilation: (1) concern about medical impacts, (2) concern about physical and/or communication restrictions, (3) concern that there would be no clear health benefit, and (4) concern about no clear meaningful life. Most families mentioned all four reasons, but concern about no clear meaningful life predominated. Conclusions: Though these families did not see home ventilation as an appropriate option, each reported a complex interplay of intentions behind and reasons for declining. Clinicians who counsel families about home ventilation could share the reasons that families commonly decline this intervention to facilitate a balanced discussion.
Shipman KJ; Mercer AH; Raisanen JC; Jabre NA; Vo HH; Miles A; Shepard J; Henderson CM; Boss RD; Wilfond BS
Journal of Palliative Medicine
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/10.1089/jpm.2022.0426" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0426</a>
Bringing social context into the conversation about pediatric long-term ventilation
artificial ventilation; Ventilators; long term care; Child; Home Care Services; Long-Term Care; Only Child; Patient-Centered Care; home care; hospital patient; life sustaining treatment; personal experience; quality of life; tracheostomy; child; human; pediatrics; article; decision support system; family decision making; social environment; home environment; medical information; practice gap; Mechanical
Decisions to initiate long-term ventilation (LTV) for children with medical complexities often involve unclear risk/benefit ratios. Although the technology may prolong a child's life, the added months to years could largely be spent in the hospital, a long-term care facility, or medical foster care, as well as at home. Clinicians who counsel families about initiating LTV must help them make value-based decisions that account for each child's medical needs and the predicted experience with the technology. That experience depends substantially on how well the family can manage daily care at home: How well they can learn the necessary skills, dedicate the required time, and garner adequate support. Because the success of long-term technologies rests on home care provided by families, each family's social context is relevant to the decision to initiate pediatric LTV. Social context (the physical, geographic, economic, and cultural circumstances in which children and their families live) will impact the child's outcome; those children with medical complexity combined with adverse social factors have the poorest health among all children.1 A recent study showed that ~2% of PICU patients across the United States received a tracheostomy and LTV; almost all of these children had chronic medical conditions.2 Substantial variability was noted in the postdischarge support systems provided to these medically complex patients and their families. Regional resources, such as home nursing, medical day care, and medical transportation, can reduce burdens for this population, but they receive inconsistent local, state, and federal support. Considerable caregiving demands for families managing home medical equipment are well described and can entail employment changes, geographic relocation, or disruption of family structure.3 Clinicians striving to individualize decisions about LTV generally have a limited window into the social context that shapes what it will be like for this child to go home with this family. Similarly, families faced with decisions about LTV for their children may not know how to think through the implications for changes to life at home. Evidence for how to consistently, meaningfully, and fairly incorporate family social contexts into decisions about LTV has not kept pace with the availability of pediatric home medical equipment. The essential question is can this family provide the necessary home care if LTV is initiated for the child? And, if not, what would the alternatives look like, and are they acceptable to the family? These decisions require frank consideration of the child's and the family's potential experience of the treatment alternatives: Complex home care, indefinite inpatient care, medical foster care, or limiting life-sustaining therapies. Reviewing potential home care demands and alternative placements during decisions about initiating LTV may not be helpful for every family, but consistently offering tangible discussions of child and family quality of life with LTV legitimizes and explores these concerns for any.
Henderson CM; Wilfond BS; Boss RD
Hospital Pediatrics
2018
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/hpeds.2016-0168" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2016-0168</a>
Withdrawal of ventilatory support outside the intensive care unit: guidance for practice
adolescent; Child; Female; Humans; infant; Male; retrospective studies; Intensive Care Units; Palliative Care; Practice Guidelines as Topic; Resuscitation Orders; Pediatric; Preschool; Newborn; Mechanical; Ventilators; Place of Death; Guildlines; Paediatric Intensive Care (PICU)
OBJECTIVE: To review the work of one tertiary paediatric palliative care service in facilitating planned withdrawal of ventilatory support outside the intensive care setting, with the purpose of developing local guidance for practice. METHODS: Retrospective 10-year (2003-2012) case note review of intensive care patients whose parents elected to withdraw ventilation in another setting. Demographic and clinical data revealed common themes and specific incidents relevant to local guideline development. RESULTS: 18 children (aged 2 weeks to 16 years) were considered. Three died prior to transfer. Transfer locations included home (5), hospice (8) and other (2). Primary pathologies included malignant, neurological, renal and respiratory diseases. Collaborative working was evidenced in the review including multidisciplinary team meetings with the palliative care team prior to discharge. Planning included development of symptom management plans and emergency care plans in the event of longer than anticipated survival. Transfer of children and management of extubations demonstrated the benefits of planning and recognition that unexpected events occur despite detailed planning. We identified the need for local written guidance supporting healthcare professionals planning and undertaking extubation outside the intensive care setting, addressing the following phases: (i) introduction of withdrawal, (ii) preparation pretransfer, (iii) extubation, (iv) care postextubation and (v) care postdeath. CONCLUSIONS: Planned withdrawal of ventilatory support outside the intensive care setting is challenging and resource intensive. The development of local collaborations and guidance can enable parents of children dependent on intensive care to consider a preferred place of death for their child, which may be outside the intensive care unit.
2014-09
Laddie J; Craig F; Brierley J; Kelly P; Bluebond-Langner M
Archives Of Disease In Childhood
2014
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/10.1136/archdischild-2013-305492" target="_blank" rel="noreferrer">10.1136/archdischild-2013-305492</a>
Driscoll Children's Hospital respiratory syncytial virus database: risk factors, treatment and hospital course in 3308 infants and young children, 1991 to 2002
Hospitalization; Humans; infant; Intensive Care Units; Pediatrics; Length of Stay; Severity of Illness Index; Risk Factors; Medical Records; infant; Newborn; Premature; Human; Databases; Factual; Mechanical; Ventilators; Antiviral Agents/therapeutic use; Respiratory Syncytial Virus; Respiratory Syncytial Virus Infections/drug therapy/physiopathology/virology; Respiratory Tract Infections/drug therapy/physiopathology/virology; Ribavirin/therapeutic use
BACKGROUND: Treatment of respiratory syncytial virus (RSV) lower respiratory tract infection has historically been one of the most frequent reasons for admission to Driscoll Children's Hospital. OBJECTIVE: The objective of this study was to examine the relationship of risk factors for a severe and complicated disease course to the treatment and hospital length of stay. METHODS: Subjects were identified through a retrospective review of the medical records of all patients discharged with a diagnosis of RSV lower respiratory tract infection during 9 of the 11 RSV seasons between July 1, 1991 and June 30, 2002. The RSV seasons from 1991-1992 to 1994-1995 were compared with the RSV seasons from 1995-1996 to 2001-2002 with regard to treatment and hospital course. RESULTS: There were a total of 3308 admissions. Compared with patients with no risk factors, higher percentages of patients with age <6 weeks, history of prematurity, congenital heart disease and neurologic disease were admitted to the pediatric intensive care unit (PICU) and required mechanical ventilation (P < 0.001). Also the hospital length of stay was longer for patients with each of these individual risk factors (P < 0.001). The hospital length of stay and the percentages of patients admitted to the PICU and requiring on mechanical ventilation increased as the number of risk factors increased from zero to 3 or more (P < 0.001). Of patients with 3 or more risk factors, the average hospital length of stay was 13.5 days; 67% were admitted to the PICU, and 47% required mechanical ventilation. Ribavirin use decreased in patients with each of the individual risk factors (P < 0.001) as well as in patients with one or more risk factors (P < 0.001). At the same time the PICU admission rate increased from 6.1% to 11.2% (P < 0.001). CONCLUSIONS: Patients with three or more risk factors were at very high risk for having a severe or complicated disease course associated with admission to the PICU, placement on mechanical ventilation and a longer hospital length of stay.
2004
Purcell K; Fergie J
The Pediatric Infectious Disease Journal
2004
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/10.1097/01.inf.0000126273.27123.33" target="_blank" rel="noreferrer">10.1097/01.inf.0000126273.27123.33</a>
Barbiturates in the care of the terminally ill
Child; Female; Humans; Adult; "Hypnotics and Sedatives"; Ethics; Medical; Palliative Care/standards; Pain/drug therapy; Analgesia/methods; Sarcoma; Terminal Care/methods/standards; Astrocytoma/nursing; Barbiturates/administration & dosage; Ewing's/nursing; Mechanical; Multiple Organ Failure/nursing; Sarcoma/physiopathology/secondary; Spinal Cord Neoplasms/physiopathology/secondary; Spinal Neoplasms/nursing; Ventilators
1992
Truog RD; Berde CB; Mitchell C; Grier HE
The New England Journal Of Medicine
1992
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/10.1056/nejm199212033272311" target="_blank" rel="noreferrer">10.1056/nejm199212033272311</a>