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When a young person dies suddenly, doctors can save other family members from the same inherited disease, says the lead author of a new study on sudden deaths.
Waikato Hospital Director of Cardiac Electrophysiology Dr. Martin Stiles has led the publication of an international paper on the best ways to investigate sudden unexplained deaths and sudden cardiac arrests.
Stiles said the study focused on the sudden deaths of people between the ages of one and 40 and helping their family members. Sudden infant deaths were classified as crib deaths, while coronary heart disease was quite prevalent among people over 40, he said.
After the sudden death of a young man, if family members were properly tested, often two or three family members could be saved from the same fate, Stiles said.
“That’s what motivates us to find the answers. It’s tragic when someone dies suddenly, but I work with some families who have had multiple sudden deaths between families,” Stiles said.
“If there are deaths of young people, even deaths in the cradle or even deaths in utero, and unexplained deaths in young people … we like to know about them and we can investigate them.”
The document recommends that autopsies and genetic testing be performed after people die suddenly.
This could alert doctors to conditions, such as long QT syndrome, where cardiac production suddenly stops and people suddenly collapse or die. Doctors can then run tests to see if such genetic conditions affect other family members and offer advice to protect them.
Those who survive near-death incidents and their family members could undergo tests, such as heart ultrasounds, MRIs and drug screenings, that would uncover cardiac arrhythmias, Stiles said.
“One of the things about this document, what we have tried to do is really emphasize the importance of psychological care for patients who have survived cardiac arrest or lost a loved one.
“The other thing is genetic counseling. For example, if you have a malignant heart rhythm problem, a helicopter pilot is probably not the job for you, or a deep sea diver.”
Sudden deaths can be due to various conditions, such as heart abnormalities, epilepsy, and aneurysms. Some people died young while exercising, sleeping, running a fever, or even after being scared, he said.
“There are certain conditions that can arise when someone exerts himself and, in particular, when swimming.
“Sometimes an unexplained death in a strong swimmer sets off alarms – do you have a heart rhythm condition that caused you to lose consciousness in the water?
“Then there are other conditions in which there are certain situations, like a fright, an unexpected visit, anything unexpected can trigger an unpleasant heart rhythm.
“We tell these people that they may not like having an alarm clock next to their bed … to minimize the possibility of this happening, but of course it cannot completely eliminate the possibility from their life.”
The document is a consensus statement that brings together the opinions of 28 medical experts from 13 countries in Europe, Asia, North and South America, and Australasia.
“What I would like to see happen is that this international best practice document is adopted in New Zealand and around the world.
“The difference with this document is that we are potentially helping people we never met and maybe in countries we will never visit.
“It is worth working to provide an international framework for the improvement of care and investigation of sudden death around the world.”
Stiles said New Zealand was ahead of much of the world by having a multidisciplinary approach and a national body, the Hereditary Heart Disease Group, that could coordinate the care of family members living in different regions.
The Expert Consensus Statement on the Investigation of Sudden Unexplained Deaths and Sudden Cardiac Arrest Patients and Their Families was published in the Heart Rhythm Journal this month.