Researchers call for early end-of-life communication in congenital heart disease
By Chloe McIvor
09 March 2012
Int J Cardiol 2012; 155: 383–387

MedWire News: Health professionals should discuss end-of-life (EOL) issues with congenital heart disease (CHD) patients early in the disease course, rather than when faced with life-threatening complications or conditions, say researchers.

In a study published in the International Journal of Cardiology, only 1% of patients said they had discussed EOL planning with their healthcare provider.

Adrienne Kovacs (Toronto General Hospital, Ontario, Canada) and colleagues collected survey data from 200 patients (aged 18-79 years, mean age 35 years) with CHD attending an outpatient clinic and 48 CHD healthcare providers. The majority (81%) of patients had lesions of moderate or great complexity.

The data showed that only two (1%) patients recalled discussing EOL planning with their medical team, but that 50% of healthcare providers said they typically discuss EOL issues with their outpatients.

The CHD professionals said they discussed included life expectancy, advance planning, and resuscitation preferences, and that these discussions increased according to disease complexity. But 78% of patients expressed a preference for EOL discussion initiation by healthcare providers regardless of disease complexity.

The researchers found that early EOL discussions, defined as before the onset of life-threatening complications, were preferred by 62% of patients but only 38% of providers.

Kovacs and team say that patient preference for early EOL to be independent of disease complexity was "a rather unexpected finding." They add that "this highlights the fact that many patients, even those with simple defects such as atrial or ventricular septal defects, have concerns about their future health, which merit being addressed by the medical team… Stratification of EOL communication according to disease complexity is not in synchrony with patient wishes."

The researchers stress the importance of identifying adults with CHD as a patient population distinct from other disease such as cancer and acquired heart failure.

They say that this is significant because CHD patients tend to be younger than patients of these other diseases, which can make for particularly distressing cases, and referrals to specialist EOL teams are at risk of being delayed due to the prognostic difficulties typical with CHD. Also, there is a lack of research and training about the unique palliative care and EOL needs of adults with CHD.

Kovacs and co-workers conclude: "Increased attention to EOL issues is warranted to enhance care of patients with CHD across the lifespan."

MedWire ( is an independent clinical news service provided by Springer Healthcare Limited. © Springer Healthcare Ltd; 2012

Free abstract

Friendly links

Follow me on Twitter