Informed consent and hypoplastic left heart syndrome

Abstract

We conclude that these findings are inconsistent with an open, shared decision-making model of informed consent and we suggest that comfort care should remain an ethically valid choice until the rate of serious long-term complications of LST decreases.

Hypoplastic Left Heart Syndrome in US Military Family Members: Trends in Intervention, Survival, and Prevalence

“…9,25,26 Once the only choice available, compassionate care without surgery is now chosen by very few families. 23,27 The natural effect of the increasing rates of intervention and subsequent survival should be an increase in the number of affected children in the population.…”

“…The prevalence at birth was calculated by comparing the number of patients with HLHS who Congenit Heart Dis. 2007;2: [19][20][21][22][23][24][25][26] were born in an MHS hospital to the total number of births at military hospitals in the same time period. For this calculation, only data since 1989 were used, when inpatient records from all military branches were available.…”

“…Congenit Heart Dis. 2007;2: [19][20][21][22][23][24][25][26] there are more than 50 000 births annually in military hospitals. 19 The system provides most primary care directly, but must refer congenital heart surgery and many other specialty services to civilian institutions.…”

“…The increasing number of patients with outpatient visits in addition to inpatient visits and then with civilian care only reflect the availability of those data sources in later years rather than any change in management. There were an average of 14.9 patients (range [11][12][13][14][15][16][17][18][19][20][21][22][23] born each year receiving MHS inpatient or outpatient care from 1989 to 2004. The age at last follow-up was 2 months or less in 166 patients, 2-12 months in 73, greater than 12 months in 127, and 5 years or more in 54.…”

“…The Congenit Heart Dis. 2007;2: [19][20][21][22][23][24][25][26] proportion of pediatric inpatients with HLHS showed a linear increase from 1.2 per 10 000 in 1989 to 15.5 per 10 000 in 2004. (r 2 = 0.92, P < .001).…”