Let’s talk about death

When making a new diagnosis of epilepsy, I often encounter fear – I speak to parents who have seen their child having a seizure in front of them, becoming unresponsive and shaking uncontrollably. And from their faces I can see that they were worried about one thing above all: Is my child going to die?

In the majority of cases the answer is clearly no. Seizures themselves very rarely cause mortality, and other than the rare sudden unexplained death in epilepsy (SUDEP), or patients with significant neurodevelopmental disabilities and life-limiting comorbidities, we rarely see deaths in our paediatric patients with epilepsy.

Yet the issue around death and epilepsy may be more complex. Last year Kitti Kaiboriboon and colleagues publishes a study in Epilepsia on ‘Premature mortality in poor health and low income adults with epilepsy’ [1]. Using enrolment in the national ‘safety net’ insurance program Medicaid in the US as a proxy for socioeconomic disadvantage, the authors compared people in this cohort who are living with epilepsy to those without epilepsy. 

The results in principle are predictable – we know that people living with epilepsy carry a higher risk of dying earlier [2], a problem made worse by resource-restriction. Yet the actual number are still quite staggering (see the figure below): in this cohort young people (18 – 34) living with epilepsy are more than 2.5 times as likely to die than those without. 

Kaiboriboon et al. 2014
Kaiboriboon et al. 2014, Epilepsia 55

The ratios in the younger age group are so high presumably because the background mortality rate is lower, and few extra deaths attributable to epilepsy will have a big effect in the younger age groups (look at the shrinking of the error bars with increasing age, when death generally becomes more common). But still, the mean years of potential life lost of patients with epilepsy in this cohort is approximately 17 years. And of all these deaths, the causes I focus on in my consultations with the kids and their parents (accidents, SUDEP, status epilepticus) make up only 8.1% of the proportional mortality ratio. 

So what do we take from this? Most of the actual excess of death in the epilepsy group is caused by causes not directly related to the epilepsy, but rather to its related comorbidities (such as stroke), and other chronic conditions (such as cardiovascular disease). What people living with epilepsy need is excellent general medical care – so we need to start thinking about the barriers to this. Many of these are institutional, such as specialty ‘blinkers’ that stop doctors from seeing problems outside their field of expertise. Some is probably related to health access behaviours of the people living with epilepsy, who are usually already overburdened with medical appointments, the emotional effects of the condition and the possible behavioural and cognitive comorbidities that commonly occur. Even where access to healthcare is financially free (such as the NHS in the UK, or Medicaid in the US), barriers are frequent and need to be actively addressed if we want to improve health care outcomes for this group of patients. 

It is not all doom and gloom, however. Whilst Kaiboriboon and colleagues have highlighted important issues in this study, they have also, incidentally, shown that overall mortality of patients with epilepsy is decreasing. I think there has been a true shift in clinicians’ appreciation of epilepsy from a pure brain disorder, to a multi-faceted chronic disease with many, sometimes unexpected health outcomes. This shift is the first step to improving epilepsy care, so that we will hopefully be able to tell our patients on the paediatric side that they will be able to live a full, long life, despite their epilepsy. This is already true for the vast majority of people with epilepsy, but studies like this one will help us in identifying the vulnerable groups among the patients we see.    

[1] Kaiboriboon K et al. (2014) Premature mortality in poor health and low income adults with epilepsy. Epilepsia, 55: 1781-1788, DOI: 10.1111/epi.12789

[2] Forsgren L et al. (2005) Mortality of epilepsy in developed countries: a review. Epilepsia, 46: 18-27, DOI: 10.1111/j.1528-1167.2005.00403.x