Understanding Bereavement

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Research · for Heart charities & sudden cardiac death organisations

Families after a sudden cardiac death: grief, trauma and inherited risk

Published 2026-10-16

When a child or young adult dies suddenly from a heart condition, their family faces two things at once: a death without warning, and the possibility that the same inherited condition runs in the family. Testing and screening often find an inherited heart condition that puts other relatives at risk, and in an Australian study almost half of relatives reported posttraumatic stress symptoms years after the death[1][2].

A sudden cardiac death usually happens to someone who seemed well. It may happen at home, during sleep, at work or on a sports field, and there is often an inquest or coroner's investigation before the family knows why. Then come questions that most bereaved families never have to ask: whether a brother, a daughter or a parent carries the same condition, and whether they should be tested too. This study sets out what research shows about these deaths, screening of relatives, families' health and the support they receive. Most of the evidence comes from Australia, New Zealand, the Nordic countries, the UK, Ireland and Canada.

1.3sudden cardiac deaths a year per 100,000 people aged 1–35 in Australia and New Zealand (2010–2012), and 40% of those deaths were unexplained after a full autopsy[1]
44%of 103 relatives of young people who died from sudden cardiac death in Australia reported posttraumatic stress symptoms, on average five years after the death[2]
86%of 108 bereaved family members in a Swedish study had not been offered professional support from the healthcare system after a death from sudden cardiac arrest[3]

Sudden cardiac death in young people is rare, and only a few countries count it fully

Across all ages, sudden cardiac death is common. The European Society of Cardiology's 2022 guidelines say it accounts for approximately 50% of all cardiovascular deaths, and estimate that 10–20% of all deaths in Europe are sudden cardiac deaths[4]. Many of these deaths are in older people. In the Swedish study of bereaved families cited above, the people who died had a median age of 75[3].

In children and young adults, the deaths are rare, and inherited heart conditions make up a larger part of the picture. The best counts come from studies that reviewed every death in a country, using coroners' records, autopsy reports and national registers. They are summarised below. Because they cover different years and define cases in slightly different ways, the figures are not directly comparable.

Country and yearsAgesDeaths foundRate per 100,000 a year
Australia and New Zealand, 2010–2012[1]1–354901.3
Denmark, 2000–2009[5]1–356353.1 in 2000, falling to 2.5 in 2009
Sweden, 2000–2010[6]1–355521.3 (1.8 at ages 15–35)
Australia, 2000–2016[7]1–352,0060.91 to 1.48, depending on the year

In Denmark, these deaths made up 7% of all deaths at ages 1–35 over the decade[5]. Young men are most affected: 72% of the deaths in Australia and New Zealand were boys or young men, as were 68% in Denmark, and 28% of the Swedish deaths were women[1][5][6]. Within this age range, people aged 31–35 had the highest rate in Australia and New Zealand, 3.2 per 100,000 a year[1]. Where people live may matter too. In Australia the rate was higher outside metropolitan areas, 0.99 against 0.53 per 100,000 person-years[7].

These counts come almost entirely from high-income countries with strong coroner and autopsy systems. For most of the world there are no comparable figures, so how many families are bereaved in this way globally is not known.

Many young deaths are unexplained at autopsy, which leaves families with open questions

For many families, the first finding is that there is no finding. In Australia and New Zealand, 40% of sudden cardiac deaths at ages 1–35 remained unexplained after a comprehensive autopsy, including toxicology and tissue examination. Unexplained death was the most common finding in every age group except 31–35, where coronary artery disease was most common. People aged 16–20 had the highest rate of unexplained death[1]. In Sweden, sudden arrhythmic death syndrome, the term used when the heart looks normal at autopsy, was the most common diagnosis, at 31% of deaths. Among Swedish deaths investigated by forensic autopsy, 38% happened during sleep, and 60% were unwitnessed[6].

An unexplained death is not a death without a cause. A normal-looking heart can hide an inherited disorder of the heart's electrical system, which leaves no trace at autopsy. That is why post-mortem genetic testing, sometimes called a molecular autopsy, matters to families. In the Australian and New Zealand study, genetic testing found a clinically relevant gene variant in 31 of 113 unexplained deaths that were tested (27%)[1]. The researchers concluded that adding genetic testing to autopsy "substantially increased" the identification of a possible cause[1].

The European Society of Cardiology now says autopsy is recommended "ideally in all cases of unexpected SD and always in those under 50 years", and that "retaining tissue for DNA extraction is important for post-mortem genetic analysis"[4]. For a family, whether this happens can decide whether they ever learn why their relative died.

Screening relatives finds an inherited condition in many families

Because several of these conditions are inherited, international guidelines recommend cardiac assessment for close relatives when the suspected cause of a sudden death is an inherited heart condition[8]. The results show why. At a London centre, 57 families with an unexplained sudden death were assessed: 70% of first-degree relatives (parents, brothers and sisters, children) took part, and an inheritable heart disease was diagnosed in 30 families (53%)[9]. The researchers concluded that over half of these deaths were likely to be due to inherited heart disease[9].

Other clinics have found lower but still substantial shares. At a Copenhagen unit that assessed 695 relatives from 304 families after any sudden cardiac death, an inherited cardiac disease was identified in 143 families (47%), most of them through the autopsy or medical records of the person who died; in the 187 families where that had not given a diagnosis, screening relatives found one in 26 more. In all, 73 relatives (11%) received a definite diagnosis and were offered treatment[8]. In Dublin, a potentially inheritable cause was found in 22 of 73 families (30%) and in 36 of 262 relatives (13.7%). Of those screened, 32 (12.2%) were treated with medication and 5 (1.9%) received an implantable defibrillator[10].

Share of families in which an inherited heart condition was identified after a sudden death, five studiesFamilies referred after a sudden death. London, 57 families with an unexplained death: 53%. Copenhagen, 304 families after any sudden cardiac death, including diagnoses made at the autopsy or from the records of the person who died: 47%. Dublin, 73 families with an unexplained death: 30%. Copenhagen, families with an autopsy-negative sudden death: 16%. Australia and New Zealand, families with an unexplained sudden cardiac death in a person aged 1 to 35, clinical diagnosis during follow-up: 13%.0%20%40%60%London, unexplained deaths53%Copenhagen, any diagnosis47%Dublin, unexplained deaths30%Copenhagen,autopsy-negative16%Australia & NZ,unexplained13%
Not directly comparable: the studies differ in which deaths they included (all sudden cardiac deaths or only those unexplained at autopsy), in how fully relatives were tested and in years. The Copenhagen 47% counts any diagnosis in the family, mostly made at the autopsy of the person who died; screening relatives added a diagnosis in 26 of the 187 families without one. The first four are specialist clinics receiving referred families, which may see families more likely to carry an inherited condition; the Australia and New Zealand figure comes from a population-based study. Sources: Behr et al. 2008; Hansen et al. 2020; McGorrian et al. 2013; Dalgaard et al. 2022; Bagnall et al. 2016.

The yield varies with who is included. Among Copenhagen families where the death was unexplained after autopsy, 16% were diagnosed with an inherited condition[11]. In the population-based Australian and New Zealand study, 13% of families with an unexplained death received a clinical diagnosis during follow-up[1]. Specialist clinics receive referred families, which may raise their figures.

Screening can also reassure. In Copenhagen, 93% of diagnosed families were diagnosed at the first assessment, and during follow-up relatives without a diagnosis seldom had an arrhythmic event (5%, against 34% of relatives with a diagnosed condition)[11]. The ESC guidelines note that routine follow-up of families without a diagnosis "yields little in new diagnoses"[4].

Close to half of relatives in one study reported posttraumatic stress symptoms, years after the death

Grief after any death is a normal response, not a disorder. What the research on sudden cardiac death shows is how often that grief comes with symptoms of trauma, and how long they can last. The clearest evidence comes from Australia. A survey of 103 relatives from 57 families in Australia found that 44% reported posttraumatic stress symptoms and 20.6% reported prolonged grief, on average five years after the death[2]. Relatives reported more severe depression, anxiety and stress than the general population. The authors concluded that "almost 1 in 2 family members reported significant psychological difficulties"[2].

Two groups stood out. Among mothers of the young person who died, 59.4% reported posttraumatic stress symptoms and 35.7% prolonged grief. Among relatives who had witnessed the death, the figures were 66.7% and 41.7%[2]. These are self-reported symptoms on questionnaires, not clinical diagnoses, and 44.4% of those invited took part[2].

Relatives reporting posttraumatic stress symptoms and prolonged grief after the sudden cardiac death of a young person, AustraliaSurvey of 103 relatives from 57 families, on average 5 years after the death. Posttraumatic stress symptoms: 44% of all relatives, 59.4% of mothers, 66.7% of those who witnessed the death. Prolonged grief: 20.6% of all relatives, 35.7% of mothers, 41.7% of witnesses.Posttraumatic stress symptomsProlonged grief0%20%40%60%80%All relatives44%20.6%Mothers59.4%35.7%Witnessed the death66.7%41.7%
Self-report questionnaires, not clinical diagnoses. Relatives were surveyed in Australia, and 44.4% of those invited took part, so the figures may not represent all bereaved families. Source: Ingles et al., JAMA Internal Medicine 2016.

Earlier work from the same Sydney research centre points the same way. Among 50 relatives from 29 families, on average four years after the death, mean anxiety and depression scores were significantly higher than in the general population. Among mothers, 53% had an anxiety score suggesting probable anxiety disorder[12]. Genetic findings can add to the strain. In a further survey of 33 relatives, 11 (36%) reported poor adaptation to the results of post-mortem genetic testing, and they had worse posttraumatic stress and depression symptoms than relatives who adapted well[13].

Older people who die suddenly from cardiac arrest leave families too. In Sweden, a study of 108 family members, most of them spouses or adult children, found that 18% met the threshold for probable prolonged grief. Among spouses the figure was 29%, against 13% of other relatives[3]. A smaller Swedish study followed 69 family members: 14% reported symptoms of prolonged grief at six months and 17% at twelve months, and anxiety symptoms fell from 32% to 26%[14]. Being a spouse, being a woman, being younger, having less social support, and being present during resuscitation were all linked with higher symptom levels[15].

All of these studies are small and recruited through clinics or hospitals, so they may not represent every family. Even so, across countries and age groups, they agree that a substantial minority of relatives carry heavy, lasting distress.

Most families are not offered support, and they want to understand what happened

The gap between need and provision is wide. In the Swedish study of 108 family members, 86% had not been offered professional support from the healthcare system, and 15% had received support from a counsellor, psychologist or equivalent after the death[3]. The researchers noted that "a minority are offered professional support after deaths from cardiac arrest", and called for services to identify family members in need proactively[15].

Family members in a Swedish study who had not been offered professional support after a death from sudden cardiac arrestOf 108 bereaved family members in Sweden, 93 (86%) had not been offered professional support from the healthcare system.86%86 in 100 had not beenoffered professionalsupport
108 adult family members of people who died from sudden cardiac arrest in Sweden (60% of those invited); the people who died had a median age of 75. Source: Carlsson et al., Omega 2023.

Families' own priorities are clear. In an Australian survey of 38 parents whose child had died from sudden cardiac death, psychosocial information and support was the most unmet need, reported by 54% of parents. Medical information and support needs were unmet for almost one third[16]. The two needs parents endorsed most were "To have the option of whether or not you would pursue genetic testing for yourself or family members" and "To understand what happened"[16].

Understanding what happened often depends on the coroner or medical examiner, and on how results are shared. In Ontario, Canada, interviews with 19 family members of young people whose deaths were investigated by the provincial coroner found that the type, format and timing of information varied from case to case. That variation shaped how families processed the death, how they saw their own risk, and whether they went on to have screening[17]. Families also described financial strain and changes to daily life adding to their stress[17]. Genetic results can themselves be hard to absorb: in the Australian survey described above, relatives who adapted poorly to them also reported less social support[13].

Taken together, the evidence describes a group whose needs cross the usual service lines. Families need cardiology and genetics to assess their own risk, coroners and pathologists to explain the death, and bereavement and psychological support for grief that is often traumatic. The studies above suggest those services are not yet routinely joined up around families.

What the evidence asks of us

The research points to a small number of practical changes, most of them already reflected in clinical guidance.

  • Investigate every young sudden death fully. The ESC recommends autopsy "ideally in all cases of unexpected SD and always in those under 50 years", with tissue kept for genetic analysis[4]. In Australia and New Zealand, genetic testing found a likely cause in more than a quarter of tested deaths that autopsy could not explain[1]. Coroners, medical examiners and pathology services need the funding and referral routes to do this routinely.
  • Make sure every family is referred. Screening relatives finds inherited conditions that can be treated, and in the clinics studied it identified relatives who were offered treatment, including medication or an implantable defibrillator[8][10]. A family that is never referred cannot benefit.
  • Explain results clearly and consistently. Families in Ontario described information that varied in type, format and timing, and that variation affected whether they sought screening[17]. The ESC says genetic and clinical testing should be done only by multidisciplinary teams that include professionals able to counsel on what results mean[4].
  • Build psychological support into cardiac genetic care. The Australian researchers concluded that their findings suggest "all families of a young person who experiences SCD receive additional support"[2]. Parents' greatest unmet need was psychosocial[16], and the Swedish researchers called for services to identify family members in need proactively[15]. Mothers, spouses and people who witnessed the death or the resuscitation reported more distress in these studies, but no relative should have to ask for support before it is offered.
  • Fund better data. Almost all the evidence comes from a handful of high-income countries, from small, clinic-based samples. Population-based studies of bereaved relatives' health, and counts of young sudden cardiac deaths in more countries, would show the full picture.

Families bereaved by other sudden deaths share some of these experiences; see our studies of families bereaved by road deaths and parents whose child has died. For people who survive a cardiac arrest, see working-age adults after a sudden serious illness.

Language: this piece uses plain words such as “died” rather than euphemisms, because they are clearer. It uses “sudden cardiac death” and “sudden arrhythmic death syndrome” as the studies do.

Why we're publishing this

Families bereaved by a sudden cardiac death may deal with a coroner, a cardiologist, a genetic counsellor and a GP, while grieving a death that came without warning. This study brings the international evidence together in one place for heart charities, sudden cardiac death organisations and the professionals they work with, so that the case for full investigation, family screening and support rests on cited figures.

How to read this data

The counts of deaths come from national or population-based reviews of coroners' records, autopsy reports and registers in Australia, New Zealand, Denmark and Sweden. They are counts, not modelled estimates, but they cover different years and slightly different definitions, so they should not be read as a trend or a league table. The ESC figure for Europe is an estimate. Most screening figures come from specialist clinics in London, Copenhagen and Dublin that receive referred families. The figures on grief, trauma and support come from small surveys in Australia and Sweden, which used self-report questionnaires with recognised cut-off scores; they show symptoms, not clinical diagnoses. We found no population-register study comparing the health of these relatives with other bereaved people, and almost no evidence from low- and middle-income countries.

Use this data

Free to cite with attribution to Understanding Bereavement. Charities, services and journalists are welcome to reuse these figures and charts. For the underlying figures as a spreadsheet, get in touch.

Suggested citation: Understanding Bereavement (2026). Families after a sudden cardiac death: grief, trauma and inherited risk. https://understandingbereavement.org/research/sudden-cardiac-death-families

Important: This study summarises published research about groups of people for general information. It is not medical advice or bereavement support, and it cannot describe or predict anything about an individual or family, including anyone's own risk of an inherited heart condition. If you are worried about yourself or a relative, please speak to a GP or another qualified professional.

Sources

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  2. Ingles J, et al. Posttraumatic stress and prolonged grief after the sudden cardiac death of a young relative. JAMA Internal Medicine, 2016. jamanetwork.com/journals/jamainternalmedicine
  3. Carlsson N, et al. Symptoms of prolonged grief and self-reported health among bereaved family members of persons who died from sudden cardiac arrest. Omega, 2023. europepmc.org/article/PMC/PMC10064453
  4. Zeppenfeld K, et al. 2022 ESC Guidelines for the management of patients with ventricular arrhythmias and the prevention of sudden cardiac death. European Heart Journal, 2022. academic.oup.com/eurheartj/article/43/40/3997/6675633
  5. Lynge TH, et al. Decline in incidence of sudden cardiac death in the young: a 10-year nationwide study of 8756 deaths in Denmark. Europace, 2019. europepmc.org/article/MED/30809645
  6. Wisten A, Krantz P, Stattin EL. Sudden cardiac death among the young in Sweden from 2000 to 2010: an autopsy-based study. Europace, 2017. europepmc.org/article/MED/28873959
  7. Ha FJ, et al. Sudden cardiac death in the young: incidence, trends, and risk factors in a nationwide study. Circulation: Cardiovascular Quality and Outcomes, 2020. europepmc.org/article/MED/33079584
  8. Hansen BL, et al. Diagnostic yield in victims of sudden cardiac death and their relatives. Europace, 2020. europepmc.org/article/MED/32307520
  9. Behr ER, et al. Sudden arrhythmic death syndrome: familial evaluation identifies inheritable heart disease in the majority of families. European Heart Journal, 2008. europepmc.org/article/MED/18508782
  10. McGorrian C, et al. Family-based cardiac screening in relatives of victims of sudden arrhythmic death syndrome. Europace, 2013. europepmc.org/article/MED/23382499
  11. Dalgaard CV, et al. Sudden unexplained death versus nonautopsied possible sudden cardiac death: findings in relatives. Journal of Cardiovascular Electrophysiology, 2022. europepmc.org/article/MED/34918422
  12. Yeates L, et al. Poor psychological wellbeing particularly in mothers following sudden cardiac death in the young. European Journal of Cardiovascular Nursing, 2013. europepmc.org/article/MED/23568895
  13. Bates K, et al. Psychological adaptation to molecular autopsy findings following sudden cardiac death in the young. Genetics in Medicine, 2019. europepmc.org/article/MED/30327538
  14. Carlsson N, et al. Grief reactions in relation to professional and social support among family members of persons who died from sudden cardiac arrest: a longitudinal survey study. Resuscitation Plus, 2022. europepmc.org/article/MED/36299826
  15. Carlsson N, et al. Factors associated with symptoms of prolonged grief and psychological distress among bereaved family members of persons who died from sudden cardiac arrest. Journal of Cardiovascular Nursing, 2023. europepmc.org/article/MED/35953072
  16. McDonald K, et al. Needs analysis of parents following sudden cardiac death in the young. Open Heart, 2020. europepmc.org/article/MED/32709698
  17. Allan KS, et al. “It's overwhelming with the grief”: a qualitative study of families' experiences when a young relative dies of sudden cardiac death. Circulation: Cardiovascular Quality and Outcomes, 2023. europepmc.org/article/MED/37013814