Listen to your patients and their caregivers
[Part 3: Challenges; RamachandranNair R]
A recent survey among US-Canadian neurologists revealed that only 6.8% of neurologists routinely discussed SUDEP with their patients and caregivers (Friedman D et al., 2014). Bereaved relatives often expressed feelings of guilt or blame, as well as regret that they and their deceased relative did not have the opportunity to make informed decisions regarding lifestyle and treatment, due to lack of discussion about SUDEP (Nashef L et al., 1998).The United Kingdom’s National Institute for Health and Care Excellence (NICE) guidelines and the report of the American Epilepsy Society and Epilepsy Foundation Joint Task Force on SUDEP provided clinical recommendations for physicians to discuss SUDEP with patients and their families (NICE, 2012; So EL et al., 2008). Yet, many neurologists are reluctant to discuss SUDEP with patients and caregivers. Common reasons reported by neurologists for not doing so include ‘lack of risk factors for SUDEP’ and ‘lack of adequate preventive strategies’. It could also be a combination of lack of knowledge about SUDEP, uncertainty about the most appropriate time to discuss, fear of triggering a negative reaction in the patients, lack of clarity on the content of SUDEP discussion and concern about one’s own communication skills on a sensitive topic.
To help healthcare professionals become more comfortable in discussing SUDEP with their patients and caregivers, maybe the first step in research is to ask people with epilepsy and their caregivers whether, when, what, and how they want to hear about SUDEP? In 2010 we were funded by the Ministry of Health and Long Term Care, Ontario to conduct a study on, ‘SUDEP: What do parents want to know’? We hypothesized that parents were the true experts in deciding the optimal strategies for counseling about SUDEP in children and youth with epilepsy (RamachandranNair R et al., 2013). We conducted focus group and one-to-one interviews with parents: (1) who lost children to SUDEP; (2) of children with moderate to severe epilepsy; (3) of children with mild epilepsy, and (4) of children with new onset epilepsy, using a semi-structured interviewed guide. 42 parents participated in the study.
There was full agreement, regardless of the seizure severity, that routine counseling about SUDEP should be provided by pediatric neurologists during the appointment, when the diagnosis of epilepsy is shared with parents, and with opportunities for short-term follow-up and discussions with clinic nurses or social workers. Mothers and fathers across all groups, while correctly explaining that it is a rare condition, still overestimated the risk of SUDEP. Parents generally expressed a preference for receiving routine SUDEP counseling at the time of the diagnosis of epilepsy. Across all groups of parents it was identified that SUDEP counseling should occur in a face-to-face interaction with the neurologist.
The majority of mothers opined that the information had not formally changed their management of their child, with the exception that they were now aware of the possibility and the potential need for being mentally prepared for a death in the family. Consensus among fathers was that there was already some level of vigilance and monitoring in the household of the child; this additional information, vital as it is, would not increase that level of monitoring. In learning about SUDEP, parents expressed a need to be informed of the risk of SUDEP. Those who overestimated the risk of SUDEP were relieved to know that risk of SUDEP was relatively low in children. There was group endorsement for also receiving written information about SUDEP, to reinforce the content shared by the neurologist. There was consensus that it should be the parents’ decision as to whether or not the child should be present at the meeting or when to inform the child about the risk of SUDEP.
Since the publication of this study, we conducted similar interviews with adult patients with epilepsy and bereaved relatives (RamachandranNair R & Jack SM, 2013; RamachandranNair R et al., 2014). 23 adult patients with epilepsy, aged 18-65 years, participated in the second study. 21 participants (91%) wanted all patients with epilepsy to be informed about SUDEP, while two had no clear answer. Most opined awareness would allow patients/caregivers to better prepare themselves (14/23), however a few mentioned the information could add extra emotional stress and worry (6/23). The majority (15/23) preferred to hear about SUDEP at the time of diagnosis while 30% (7/23) preferred the discussion during the follow-up visit. There were differing opinions on the content of SUDEP discussions. All 23 participants preferred hearing about SUDEP from a physician; primarily a neurologist who is an expert in this field. Presence of a close relative was preferred by 19 of 23 at the time of SUDEP discussion. The preferred method of discussion was ‘face-to-face' for all participants except one. 61% (14/23) did not think their life changed in any way after knowing about SUDEP, but many had learnt about SUDEP only when they were invited to participate in the study. 22% (5/23) mentioned they would be more cautious after knowing about SUDEP (RamachandranNair R et al., 2014).
In the third study, 21 individuals were independently interviewed about their experiences of losing a relative to SUDEP (RamachandranNair R & Jack SM, 2013). There was overwhelming support for families and patients to be educated about SUDEP, with the benefits of knowing (e.g. possible prevention, shock avoidance) outweighing the drawbacks (e.g. fear, overbearing family). Some participants felt that anybody and everybody involved in a patient’s care are responsible for telling them about SUDEP. Others identified neurologists as the most appropriate messenger. Most participants expressed that information about SUDEP should be delivered face-to-face (with written material to supplement) and should happen early on, either at time of diagnosis or shortly thereafter. Participants identified that patients should know about SUDEP, the risk factors associated with it and preventive measures. Some stressed ongoing reminders about SUDEP, especially for those with a history of poor medication compliance.
It is important to note that all three studies revealed similar opinions from parents, people with epilepsy and bereaved relatives. It is still unclear whether the opinion expressed by these selected participants represents the opinion of the entire population of people with epilepsy (or their parents) in Canada. However, for physicians who opt to discuss SUDEP with their patients and families, these findings will help them in that process.
Associate Professor, McMaster University
Medical Director, Comprehensive Epilepsy Program, McMaster Children’s Hospital, Canada
How to cite:
RamachandranNair R. Listen to your patients and their caregivers. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [retrieved day/month/year]. Available from: www.sudepglobalconversation.com.