Someone wanted to know what people can do to care for a family member who is getting ECT treatment (electroconvulsive therapy, electroshocks). Here is a list of things that I think may be important.
I hope you understand that this post is meant to be purely practical. It has nothing to do with the ongoing discussion about ECT. It is not meant to criticize, and certainly not to defend the use of ECT. For views on ECT, please see my “Shocking” posts series: (1) Waking Up, (2) Into the Void, (3) On Wheels and (4) Blast Past.
ECT will be proposed only if a patient is extremely depressed, and after all other options (therapies, medication) have failed. Unfortunately this often also means that the patient is already in such a bad state, that she may have trouble to make an objective, well-considered decision for or against accepting ECT treatment. She may react in a confused, too-impulsive or too-passive way instead of weighing arguments rationally.
So the first thing you’ll have to do, is to actively help her making the best decision. ECT may work in some cases, but it can also have serious side effects. Some psychiatrists tend to have a blind spot for the importance of side effects such as temporary or even persistent memory loss. Therefore, some things to do:
• Be well-informed. Collect reliable background information not just from internet and psychiatrists, but if possible also arrange a few talks to get first-hand info from one or two fellow-patients who’ve already had ECT treatment in the same institution.
Of course it’s best to do this together with the patient herself, if she’s up to it. If not, then summarize what you think is the most important info and share this with her, so she’ll be prepared in the best possible way to make her own decision.
• Insist on being present at all informative and/or preparatory discussions psychiatrists will have with the patient, so that whenever you notice she’s not quite capable of representing her own fears, hopes, wishes or interests, you will be able to participate (and if necessary, intervene) on her behalf.
Psychiatrists will not always like this, but you should insist. After all, she’s your family; you lived together with her through her preceding years of depression; in many respects you know her better than the psychiatrist does.
• When the psychiatrist says he sees ECT as the best or even the only option, let him clearly explain why. And even if people label the situation as “urgent”, it’s always better to make the good decision after a few weeks’ delay, than the wrong decision in a hurry or panic.
The very best thing you can do before going through, is (if you can afford it) to go with the patient herself and a full copy of her medical file to another hospital first, and ask a different psychiatrist for a second opinion. An ECT decision really is important enough to take that trouble.
• Finally, do not just make sure that the patient has been free enough to make her own decision. Once she has decided to opt for ECT, make sure this is a convinced decision, not one that still leaves her much in doubt. Serious doubt can lead to panic reversals later on.
So if you notice the patient keeps fretting about her decision, it’s better to arrange yet another talk with the psychiatrist to relieve her from those lingering doubts.
Before Actual ECT Treatment
What can you do in the days immediately before your family member gets an ECT treatment? This depends from whether she needs to go to the hospital for her ECT only (in which case she can arrive the evening or morning before, and leave the evening or the day after) or if the ECT will be given during a longer hospital stay. Obviously, in the latter case you can and need to do less. I’ll try to cover all.
• The most self-evident thing to do is of course reducing fear and nervousness. Especially before the very first ECT treatment, it is natural for the patient to be afraid of the unknown. So clearly, the best you can in do the last two days before ECT treatment, is to stay with her, distract her a little, reassure her, and if necessary try to calm her down.
After a few ECT treatments she’ll know what to expect, and probably be not too afraid anymore.
• If the patient is also using medication (antidepressants or otherwise) make sure that in the days before ECT, she adheres strictly to the prescribed doses and does not use extra medication (such as tranquilizers) without the ECT people knowing about it.
• Because ECT requires full anesthesia plus muscle relaxants every time, it is important that in the day before ECT the patient keeps to the eating-and-drinking restrictions as explained by the therapists.
A fairly usual restriction is not to eat anything during 12 hours preceding the ECT treatment. Personally I would go a little further, just to be sure, and avoid giving the patient heavy meals during the 24 hours before treatment.
• The hospital will have told you what things to bring along – items like nightwear. A practical addition I want to add here: if for seeing clearly the patient is dependent from her glasses, put her spare glasses in the overnight bag.
Putting on her glasses can sometimes help a patient to regain clarity in the somewhat dizzy hours right after ECT. I recommend bringing spare ones because occasionally, at that point it can be difficult to find back the original ones right away.
• We can assume psychiatrists and nurses will have done their home work properly, and will follow the rules for checking both the medical history and the patient herself.
Still, it won’t do harm to double-check in advance if they are indeed fully informed. You might warn the therapists explicitly to watch out for some things that can cause complications when overlooked:
(1) a brain lesion, recent concussion, respiratory problem, heart condition;
(2) loose or metal objects such as hearing aids, contact lenses, piercings.
Maybe I should explain here that one of my own 110 ECT treatments actually had to be aborted because of an acute heart complication. The next times they gave me ECT with a lower voltage; but I do think in my case it would have been safer if that lower voltage had been used right from the beginning.
• Normally the patient needs to be present in the hospital several hours before the actual ECT preparation begins. If possible bring her yourself and stay with her for a little while.
But do not argue with nurses or others when they tell you it’s time for you to leave. It’s better if your presence does not get in the way of medical routines (like a check-up). Your leaving in a casual way will support the patient’s feeling that she’s now in capable hands.
• The whole procedure (waiting, observations, checking, preparations, ECT, and post-ECT recovery) will take at least several hours. Often, the timing will be such that the patient needs to stay over at the hospital the night before. So if you live near enough to the hospital, just go home yourself. There’s nothing more you can do.
After ECT, the patient will need several hours to recover. Awakening from the anesthesia will happen within about an hour, but regaining full clarity – and physical stability – can in my own experience take much longer.
Especially in the first three hours or so, the patient may have a nasty headache or the numb feeling of having a brick in her head; she can also have neck or back or muscle pains as result of the convulsions induced by the ECT. In those first hours, nurses will regularly check in to keep tabs on her condition and recovery.
Within two hours, she’ll be at least drinking a cup of tea again; after seven to ten hours, she may be well enough to go home.
• Don’t go back to the hospital to see the patient before the prearranged time; this is pointless. She needs the time to recover quietly, gradually, without being dragged out of bed or into conversations too soon. Stick to the time you agreed to beforehand with the hospital people, or wait for a phone call.
• This one is important: do not let the patient go home by herself after an ECT treatment. If you cannot fetch her from the hospital, have someone else do it or charter a taxi.
Occasional waves of dizziness or unbalance may keep returning for one or two days after ECT; during that time the patient should absolutely not drive a car herself, and even walking through busy streets can be dangerous.
I remember how once I had no option but to use public transport to get home after an ECT treatment. I took a bus to the station and waited on the platform. Seeing a train coming in, I took a few steps forward, but I still was so unstable that I lost my balance and nearly fell in front of the arriving train. No doubt, had I fallen there, people would have labeled it “suicide”…
You understand, I really can not recommend this. I urge you, do try to organize the trips back home in a safer way.
• Back at home, make sure the patient gets a healthy mix of rest and stimulating activities. Just what we always need: so in fact, you need to do nothing special.
During the first week a few ECT patients may get slight headaches from loud music or watching TV. Others may complain about feeling some kind of numb dullness. With some patience, this kind of thing will gradually go away.
As far as I know, there are no objections against taking a few aspirins. Of course, letting someone take huge amounts of pain killers is never wise: so again, nothing special.
In short, I think the best care you can give to someone after ECT is to help her return to normal habits, to normal life within a few days.
• In the rare cases where in the weeks after an ECT treatment a serious, acute physical problem will not go away (such as recurring severe headaches) or if you think something is really wrong or abnormal, then do not hesitate to call the hospital for advice.
• There is one final thing where you as a family member can play an important role: helping both the patient and her psychiatrist to evaluate the effectiveness of the ECT treatment. As a family member you are most close to the patient. So you are in an excellent position to observe – in a more intense way than the psychiatrist, and in a more objective way than the patient herself – if this ECT really works. Can you see it does make a positive difference?
You also are in the best position to notice long-term ECT side effects. If you discover that the patient cannot really remember that wonderful vacation you took together on the Bahamas two years ago, then there is some cause for alarm.
Your contribution as observer is especially important in the case of an ongoing series of ECT treatments over a prolonged period. Suppose that after several months of ECT you feel the patient’s depressed mood and behavior have hardly changed, that basically her depression is just as serious as before. Suppose that the patient herself, when you ask her, keeps mumbling something like “I don’t really know”.
In that case it’s time to organize a new meeting with the psychiatrist, and to reconsider the whole thing. Then you can help the patient to do what we must do with any kind of therapy: weighing the costs against the benefits.
I hope this post, dull as it is, will be useful to some of us. If you think I forgot to note something important here, let me know.
Author: Henk van Setten