Congenital Cardiothoracic Surgeons and Palliative Care: A National Survey Study
adolescent; adult; article; child; clinical article; female; human; hypoplastic left heart syndrome; male; medical care; palliative therapy; pediatric cardiology; perception; prenatal diagnosis; thoracic surgeon
BACKGROUND: The majority of children with advanced heart disease in the inpatient setting die in an intensive care unit under 1 year of age following multiple interventions. While pediatric cardiology and palliative care provider attitudes have been described, little is known about pediatric cardiothoracic surgeon attitudes toward palliative care in children with advanced heart disease. OBJECTIVE: To describe perspectives of pediatric cardiothoracic surgeons regarding palliative care in pediatric heart disease. DESIGN: Cross-sectional web-based national survey. RESULTS: Of the 220 surgeons who were e-mailed the survey, 36 opened the survey and 5 did not meet inclusion criteria (n = 31). Median years of practice was 23.5 (range: 12-41 years), and 87.1% were male. Almost all (90%) reported that they had experience consulting palliative care. While 68% felt palliative care consultation was initiated at the appropriate time, 29% felt it occurred too late. When asked the appropriate timing for palliative care consultation in hypoplastic left heart syndrome, 45% selected "at time of prenatal diagnosis" and 30% selected "when surgical and transcatheter options have been exhausted." Common barriers to palliative care involvement included the perception of "giving up" (40%) and concern for undermining parental hope (36%). CONCLUSIONS: While a majority of pediatric cardiothoracic surgeons are familiar with palliative care, there is variation in perception of appropriate timing of consultation. Significant barriers to consultation still exist, including concern that parents will think they are "giving" up, undermining parental hope, and influence of palliative care on the medical care team's approach.
Morell E; Thompson J; Rajagopal S; Blume ED; May R
Journal of palliative care
2019
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/10.1177/0825859719874765" target="_blank" rel="noreferrer noopener">10.1177/0825859719874765</a>
Who should discuss goals of care during acute deteriorations in patients with life threatening illnesses? A survey of clinicians from diverse pediatric specialties
child; female; human; major clinical study; male; palliative therapy; controlled study; emergency ward; cancer patient; respiratory distress; conference abstract; decision making; human tissue; perception; clinician; spinal muscular atrophy; data analysis software; advanced cancer; brain disease; cancer resistance; deterioration; disease exacerbation; e-mail; hypoplastic left heart syndrome; leukemia; Likert scale; nonparametric test; pediatrician; vignette
BACKGROUND: Discomfort exists discussing goals of care (GOC) with families of children with advanced life-threatening illnesses. There also exists important variability in the management of these patients. OBJECTIVE(S): This study seeks to explore the perceptions of pediatric specialists involved in the care of children with life-threatening illnesses with regards to GOC discussions and management during acute unexpected clinical deteriorations. DESIGN/METHODS: This single center survey study used 4 scenarios of children with advanced life-threatening illnesses, presenting to the emergency department (ED) with respiratory distress. Scenarios included patients with hypoplastic left heart syndrome (HLHS), static encephalopathy, spinal muscular atrophy (SMA), refractory leukemia. Questions following each vignette were identical. Physicians from the specialties most involved in these scenarios completed the survey by email or in person. Data analysis used SPSS v.20 (IBM Inc.). Related samples non-parametric tests compared participants' Likert scale answers to the different scenarios. RESULT(S): Between May 2015 and May 2016, 60 participants completed the study; 14 were excluded (>60% missing answers). Most (80.4%) participants reported an interest in pediatric palliative care; 71.7% had 0-3 formal trainings. Participants believed GOC were best discussed before an acute deterioration (Table 1). Acute deteriorations were not seen as an opportune moment to initiate discussions about GOC. However, validating GOC was necessary, given that not discussing GOC was unacceptable. Pediatric specialists were seen as the most suitable teams to initiate these discussions, while the ED's role was unclear. Several management options were less acceptable for the patient with static encephalopathy. CONCLUSION(S): Discussing GOC in the ED during exacerbations is complex, involving many stakeholders, who may not always be available to help in decision making processes. Advanced care planning with these families is essential to prepare them for acute heath events. (Table Presented).
Cote A J; Gaucher N; Payot A
Paediatrics and Child Health (Canada)
2019
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).
The unique grief of grandparents
Bereavement; Family Centered Care; Grandparents; Hypoplastic Left Heart Syndrome; Infant; Infant Death -- Psychosocial Factors; Male; Nursing Practice; Pediatric Nursing
Nurses are looking beyond parents to provide bereavement support for the wider family
Nurse consultant Michael Tatterton’s research revealed that when a child with a life-limiting condition dies, the grandparents’ ‘unique footprint of grief’ is often overlooked. The hospice where he conducted his PhD study has changed how it supports grandparents to reduce their isolation and allow them to grieve.
Cole E
Nursing Standard
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/10.7748/ns.33.1.56.s17" target="_blank" rel="noreferrer noopener">10.7748/ns.33.1.56.s17</a>
A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease
Chd; Hypoplastic Left Heart Syndrome; Paediatric palliative care; Parental stress
Children with single-ventricle disease experience high mortality and complex care. In other life-limiting childhood illnesses, paediatric palliative care may mitigate maternal stress. We hypothesised that early palliative care in the single-ventricle population may have the same benefit for mothers. In this pilot randomised trial of early palliative care, mothers of infants with prenatal single-ventricle diagnoses completed surveys measuring depression, anxiety, coping, and quality of life at a prenatal visit and neonatal discharge. Infants were randomised to receive early palliative care - structured evaluation, psychosocial/spiritual, and communication support before surgery - or standard care. Among 56 eligible mothers, 40 enrolled and completed baseline surveys; 38 neonates were randomised, 18 early palliative care and 20 standard care; and 34 postnatal surveys were completed. Baseline Beck Depression Inventory-II and State-Trait Anxiety Index scores exceeded normal pregnant sample scores (mean 13.76+/-8.46 versus 7.0+/-5.0 and 46.34+/-12.59 versus 29.8+/-6.35, respectively; p=0.0001); there were no significant differences between study groups. The early palliative care group had a decrease in prenatal to postnatal State-Trait Anxiety Index scores (-7.6 versus 0.3 in standard care, p=0.02), higher postnatal Brief Cope Inventory positive reframing scores (p=0.03), and a positive change in PedsQL Family Impact Module communication and family relationships scores (effect size 0.46 and 0.41, respectively). In conclusion, these data show that mothers of infants with single-ventricle disease experience significant depression and anxiety prenatally. Early palliative care resulted in decreased maternal anxiety, improved maternal positive reframing, and improved communication and family relationships.
2018-01
Hancock HS; Pituch K; Uzark K; Bhat P; Fifer C; Silveira M; Yu S; Welch S; Donohue J; Lowery R; Aiyagari R
Cardiology In The Young
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/10.1017/s1047951117002761" target="_blank" rel="noreferrer">10.1017/s1047951117002761</a>
Hypoplastic left heart syndrome in US military family members: trends in intervention, survival, and prevalence.
Prevalence; Hypoplastic Left Heart Syndrome; Intervention; Interventions; location of death; Military
Introduction. Hypoplastic left heart syndrome was uniformly fatal until the 1980s but now has survival approaching 70% to age 5 due to treatment advances. The current study was undertaken to examine trends in the intervention rate, survival, and prevalence of hypoplastic left heart syndrome among US military family members. We hypothesized that increased rates of intervention and survival would produce a demonstrable increase in prevalence in this population. Methods. This was a retrospective review of administrative data. Central databases contain records from Army hospital admissions since 1972, all military hospital admissions since 1989, outpatient visits since 2000, and civilian bills to the military system since 2000. Patients with an instance of the relevant diagnosis (code 746.7) were included and all of their data records reviewed. Patients with incompatible diagnoses or survival were excluded. Results. There were 366 patients identified, 63 born in the 1980s, 155 in the 1990s, and 148 after 2000. The rate of intervention increased from 54% in the 1990s to 97% in the 2000s (P < .001). Five-year survival increased markedly between the 1980s and the 1990s. For patients born since 2000 and undergoing intervention, survival was 66% to 21 months (95% confidence interval 56–75%). Prevalence at birth in military hospitals was 1.4 per 10 000 with no significant trend over time. Prevalence among inpatients other than at birth increased from 0.4 to 15 per 10 000 between 1989 and 2005 (r2 = 0.92, P < .001). Conclusions. The rates of intervention and survival of patients with hypoplastic left heart syndrome have increased dramatically over the past 15 years. This has resulted in a demonstrable increase in prevalence among the beneficiary population. Future study focused on this cohort could detail their healthcare needs and demonstrate the effect of hypoplastic left heart syndrome on the family and its growing impact on the military healthcare system.
2007
Scott JS; Niebuhr DW
Congenital Heart Disease
2007
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/10.1111/j.1747-0803.2007.00067.x" target="_blank" rel="noreferrer">10.1111/j.1747-0803.2007.00067.x</a>