When a Loved One Dies Suddenly, Genetic Counselors Can Help
The sudden loss of a loved one – a child, parent, sibling – is a devastating event and leaves survivors not only shocked and grieving, but wanting answers. Below are some frequently asked questions about this difficult situation. Genetic counselors are here to help, and these common questions are answered here by NSGC’s Cardiovascular Genetics Expert, Amy Sturm, LGC.
Why did this seemingly healthy person die?
Often, when someone dies suddenly, it is because of an underlying cardiac condition. The term used to describe this is sudden cardiac death (SCD). There are two types of SCD: 1) explained SCD and 2) unexplained SCD. A person’s medical history and a thorough autopsy can determine the type. An autopsy is an examination of the body after someone dies to determine the cause of death. In explained SCD, the autopsy may reveal a problem with the structure of the heart, or blockages in the heart’s blood vessels. However, in up to one third of cases of SCD among children and young adults, the body and heart appear normal – this is unexplained SCD. The person may have had an abnormal heart beat or rhythm, called an arrhythmia, which does not make the heart itself look abnormal. The underlying causes of both explained and unexplained SCD can be hereditary, or genetic.
What can I do to learn if my family members and I are at risk?
If you are the next of kin to the deceased individual, you can decide whether you want an autopsy performed. If your loved one died some time ago, you can find out whether an autopsy was performed and, if so, get the report to review and share with your doctor. If the autopsy report states either a cardiac cause of death or an unexplained cause of death, you may want to schedule an appointment with a cardiovascular genetic counselor.
Another thing you can do is find out whether there is a blood or tissue sample from the autopsy that can be used for postmortem genetic testing, which may provide answers. It can also be used to identify relatives – children, siblings, parents and possibly more distant relatives – who are at increased risk for the same type of heart disease that caused the individual to die.
The Heart Rhythm Society and other international professional organizations have provided expert consensus recommendations for this type of evaluation.
I’m having trouble coping with this loss. What can I do to feel better?
The shock of suddenly losing a loved one, coupled with concerns about possibly having a serious hereditary condition, can leave a person with extreme sadness or depression. But there are people and services that can help.
The shock of suddenly losing a loved one, coupled with concerns about possibly having a serious hereditary condition, can leave a person with extreme sadness or depression. Recent research by a genetic counselor and her team showed that individuals who experience the sudden loss of a loved one are at increased risk for prolonged grief and post-traumatic stress; almost 1 in 2 family members reported significant psychological difficulties. But there are people and services that can help. Families who experience SCD should seek the services of a clinical psychologist or grief counselor. These types of specialists can help you work through intense emotions and the grieving process.
There are many resources for people who have lost a loved one suddenly, including the Sudden Arrhythmia Death Syndrome Foundation, as well as other national organizations. To speak with a genetic counselor in your area, visit FindaGeneticCounselor.org.
If you’re a genetic counselor working with families doing post mortem genetic testing, visit this NSGC members’ webpage to download a patient information sheet.
Amy Sturm, MS, CGC, LGC is a cardiovascular genetics expert for the National Society of Genetic Counselors and an associate professor and genetic counselor in the Division of Human Genetics at the Ohio State University Wexner Medical Center in Columbus, Ohio.