Reflections on clinical practice in India
[Part 4: Challenges; Tripathi M]
In the Indian culture the mention, or talk, of death is often met with hushed and subdued tones. A close near and dear one who talks about his/her death is often met with a reprimand and the topic of discussion changed. It is thought, in this very culture, that talking about death will bring it on and make it happen. How does this relate to epilepsy?
Epilepsy by far is controlled by one or two medications in about 70% of our patients; another 30% require further advanced investigations and a possible surgical cure. In India, cohabitation and joint families are commonplace. It is very unlikely that a person with epilepsy, especially when uncontrolled, is left alone. Having a co-shared sleeping environment is also common.
As epilepsy specialists, we know we should be discussing sudden death and its possibility with our patients. At the initial visit, usually the diagnosis is offered to the person with epilepsy and the caregiver. There is at first a denial of the possibility of ever having epilepsy. Epilepsy itself is very little understood by our population. There are several myths and misconceptions about this. Medication seems to be a burden; everything seems to be a burden at first glance. Very often the second visit is placed two to three weeks after the first, and compliance about medication is a routine question, apart from reviewing the investigations. This is usually the time that the caregiver or person with epilepsy sheepishly agrees that a dose may have been skipped and the patient had a breakthrough seizure, or felt like they were going to have one. This is the correct time to bring in the concept of SUDEP in the Indian cultural scenario, and very often this works for compliance too. Never then, do they forget to take their medication. Two problems are solved with one arrow.
If the person with epilepsy is drug refractory they are often feeling overwhelmed and introducing SUDEP can scare them even more. So again, as a clinician, you often wonder if terrifying them works any wonders. On the other hand, for the person with epilepsy, being prepared and knowing about the risks is half the battle won. At the very least they can take certain precautions like avoiding seizure precipitants, being regular with medication, having suitable seizure detection systems, and using alarms.
Very often it is challenging to be giving bad news. Frequently, in the Indian setting, the patient will then switch to another doctor who gives only positive news. The issue has to therefore be handled with the utmost sacredness and sensitivity. Raising the issue may cause unnecessary anxiety, depression, suffering, distress and even suicidal ideation in addition to the helplessness that epilepsy might generate.
Therefore it must be held that a delicate balance between optimal benefit & minimal harm is an art which the epilepsy doctor has to acquire in this culture. There is also the fact that information allows the patients autonomy to make their own decisions Then there is the issue of the right of an individual not to have information unless they want to have it, particularly in India where relatives often want to cushion the patient from any negative news least the patient give up all hope.
The ultimate aim of therapy is to improve the quality of life for a patient and prevent death. We as clinicians in this vast country have to balance all these nuances and subtleties. Do we tell a patient in an offhand manner; by the way you may die suddenly if you have epilepsy - or do we prepare an elaborate risk profile of our patients noting those with; frequent seizures, uncontrolled epilepsy, nocturnal events, no night time supervision, obesity, male gender, and a history of non-compliance, and then break the news gradually? As an analogy do we tell all persons with a grave disease in neurology about death? Ideally talking about death should be a part of discussion for any condition or disorder, even if the death may be gradual due to respiratory muscle weakness in a muscle disease, or sudden as in epilepsy. This may help our patients prepare better and think in a clear manner. It all depends on how the information is shared with them and how positive the counselor is with the person who has epilepsy. Empowering strategies, discussion, positive aspects and attitude development should be very much a part of the session.
One family that I told about the possibility of SUDEP asked if they could prevent it and minimize risk in any way. This was the best way for them to take the information I provided and they were very meticulous about the management of epilepsy, making it a serious business. They also quizzed me for a long time about the activities that their child could do, and those that needed to be avoided; I can say such a person with epilepsy would be less likely to be harmed by careless behaviors which we very often see as a cause of death in our patient population. Deaths in the villages are common due to drowning, when access to water in pipes is a distant dream and water is collected from wells or people bath in open water. They are less likely to go flying kites on rooftops, but falling down and head injury is also common. So informing the family ensures safe behavior and practices reducing the chance of both accidental deaths and SUDEP, hence benefitting everyone. This family also asked me about how to handle a seizure and the dos and don’ts, which people often forget when they are not informed about SUDEP. This would, again, not only minimize SUDEP but also injuries, burns and disfigurement which are so common in our people.
Hence I conclude by saying that though death may be a taboo subject of discussion, creating a gentle awareness about the same would make living with epilepsy safer, and less to be feared, even in India.
All India Institute of Medical Sciences
New Delhi, India
How to cite:
Tripathi M. Reflections on clinical practice in India. 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.