You may never need this, but in case you do…
In 2016, my father suffered a stroke during a coronary bypass operation. During the months in which he was comatose (refused to let them pull the plug), I spent the majority of time at his bedside reading as much research as I could, from academic studies to alternative medicine, from industry debates to personal anecdotes on the internet.
Whilst every experience is unique, I hope that through sharing some of the information I learned it may be of use to someone else. I was extremely fortunate to be able to have that much time to study, as well as already working in a field that gave me access to researchers and scientists to take my calls and respond to my (no doubt extremely annoying) onslaught of emails. I was also fortunate in knowing that my father, as a scientist, would be both encouraging and supportive of the numerous experiments I ran on him.
Despite all this, anybody who finds themselves in this situation should take time to think through their actions and the place from which their intentions are coming from. Good intentions, from bad first principles, cause problems. Good intentions, if extreme also, cause problems.
Low hanging fruit that most people miss is simply being extremely polite and kind to hospital staff. They have hard jobs with low pay and I was surprised by how many families were rude to them. I invested a lot of effort into making sure that the nurses and doctors wanted to work with me and listen to what I have to say. I made it pleasurable to come look after my father. I also think, from a social engineering perspective, it is useful to personify the patient as much as possible so that the hospital staff are incentivized to care more. They see dozens of sick humans daily and the processes become automatic. Make them want to help you (but with integrity and without pressure). I would tell them about my father’s young children and how much I knew he wanted to live more.
- Write Down Key Medical Terms
If I could have had *one* piece of advice from the get-go, it would have been to write down key words as the doctor told them to me. In these situations, whilst you’re anxious and panicking, it’s hard to remember content filled with medical terms. The Doctor/Consultant who takes you to the side or who arranges to speak to family is often the one who has the clearest overview of the situation. When he/she speaks to you, make an effort to write down the keywords (e.g. the condition, the potential cause, the tests that have been done and the results, the treatment plan and the machines or devices being used). If you’re not sure if you got a word down correctly, check with the Doctor. I would often get shy to check the definition of an even seemingly obvious medical term but I never regretted it later.
The act of writing down keywords is not because you shouldn’t trust what your Doctor is saying — you should seek to communicate that because everyone is scared of liability. That’s why winning the trust of staff comes first. I repeated many times that my note-taking was simply to keep a clear overview of the situation and to look up any terms I didn’t understand.
- Address The Comatose Person In The First Person
Unless a person is heavily sedated, then you should presume that a comatose person can hear you. Since this paper from the 1990s, Nurses have been taught that ‘hearing’ is the last sense to go, but often (whilst overworked and underpaid) they don’t have the bandwidth to put it into action. Beyond an acute situation, where nurses should be focused and not distracted from a patient’s survival, ask your nurse to refer to the patient by their first name and warn them of any uncomfortable actions. A lot of them do this but not all the time. Talk to the person with the knowledge that they can hear you. Make the world sound safe for them to wake up. I’ll avoid trying to get woo-woo here, but we know so little about how the mind works. You have to make the person want to wake up. I would tell my father about holidays we would go on and things he was missing out by being ‘asleep’. I made his situation sound trivial to him ‘you’re going to wake up from this nap soon’. When he did wake up, he later told me he thought he had just had a nap (!).
Memories.. Record them and play them on noise cancelling headphones. Ask family members and friends to record memories and play them to the patient. Get detailed descriptions of life events- note the sights, smells, sounds of different shared memories from childhood to adult. Get good quality headphones, record them as voice memos and then play them repeatedly. I would run through a memory voice memo list that lasted ~1hour in headphones to my father every other day. If your coma patient spoke a different language in childhood, get personal content in that language. I asked a friend who spoke Turkish to record himself reading my father’s old diaries and played them to my father. There is interesting research about familiar sounds/memory stimulation and comas.
Play music from their lives… Past and present. Create playlists. Play TV shows that they like in good quality headphones. Don’t overwhelm the patient but 24/7 hospital noise is enough to make anyone not want to wake up. I played my father the Cosmos series and podcasts on rationality because he likes those things. The first time he started responding to touch again was during an episode of Cosmos :)
There is also research that shows smell can trigger deep brain stimulation. I looked into this and started using my father’s favorite cologne on him daily, until I stupidly realized he actually wasn’t breathing through his nose due to the respirator duh…..you aren’t always thinking correctly in these situations! But during his time on the respirator and afterwards, I asked the nurses to wash him with his usual products and use his usual body cream. Try to normalize the hospital variables as much as possible.
Massage a patients hands, feet, fingers, limbs, everything. My father’s feet were gross, so if I can do it, you can do anything. This massively helps with circulation and also nerve stimuli which is important in comas. Nurses don’t have the time to do these things. I massaged his head and scalp too because statistically it seems men (more than women?!) often find that soothing. Don’t overdo it and listen to hospital staff if they tell you otherwise.
Keep a diary addressed to your loved one if you can. Write what happened every day. In the future this can help fill in the blanks. It also provided a way for me to keep track of what was happening during a stressful situation.
- Don’t talk down to people..
….who are either comatose, in hospital, older or suffering. They need your respect. They need to feel strong- give them that. I addressed my father as if he were a Greek god. I believe that the mind can be very powerful here. Make people WANT to wake up.
- Help Out
Ask nurses and staff how you can be helpful and don’t violate their requests. I took some of the light daily chores off the nurse’s schedules and they were very appreciative (and thus wanted to help more).
- Look after yourself.
You can’t help if you’re sick or sleep-deprived. Don’t live off coffee and hospital food for too long. Take time to eat and sleep and handle things with a fresh mind.
- Bring gifts and food for the staff.
Snacks and coffee go a long way, as does thank you cards and a reminder of how much their work means to you. No matter what happens in your situation, they are saving lives… every single day.
Be forgiving and supportive. Are you more inclined to help someone who is complaining about you? Remember the scope of their work. Your loved one is one of many patients, some who may have more acute and serious conditions. Be respectful of that.
- Talk to other patients if they’re alone
One of the most haunting experiences in a hospital is how alone other people are. Later when my father was in a stroke ward, an elderly man named Jack was constantly confused and alone. At first I would always be shy and think it would bother him if I spoke to him, but eventually I did and he was very appreciative and became a friend. Say hi, listen to stories, invite people to join you and your loved one, make friends. Hospital doesn’t need to be an isolating place for patients, carers or staff.
2021 addition: I worked with a doctor to experiment with couple of novel therapeutics to potentially improve neural plasticity, some of which may have been useful? It would be risky to write these as suggestions in a public post but reach out if you want the info.
Eighteen months later, my father has little to no memory of being in a coma. He doesn’t remember me being there all the time, or of all the recordings I played him, or the fact that he severely owes me for massaging his gross feet. We don’t do these things for future gratitude. We do it for the hope that one day, some way right in the future, we can get a beer together in a bar in Istanbul and talk about all the cool shit we want to do with our lives and to spend the rest of them encouraging each other to make them a reality.
And at the very least, despite whatever happens, we do it to know that we have tried our very best. If they are going to die, they will die. But you have to try. The doctor gave my father a 10% chance of meaningful survival. Those are great odds. If we all pulled the plug then that 10% would be 0% very quickly. Doctors have to be conservative for liability sake. You have to try.
The end goal should be that scientific progress allows for more custom treatments and interventions. Being comatose, as with all other maladies (including aging that makes us vulnerable to these things) will one day be preventable. We just don’t have the data and capabilities yet. There will be a world in which these issues don’t occur. To all the researchers and people helping better biomedical futures come to fruition, thank you.
And a personal thank you to the many friends who helped me with my father, as well as to Wired Magazine for initially covering the story and setting out the problem to inspire others to solve it. #AccelerateScience