Questions to Ask About a Traumatic Brain Injury
For relatives of someone in hospital with a moderate or severe traumatic brain injury, and for the survivor once they are well enough to ask for themselves. The questions follow the weeks as they tend to unfold: the injury and the scans, intensive care, the outlook, rehab, the changes in thinking, mood, behavior and energy, and life after discharge, from supervision at home to driving, work and money. Most are worded for a family member, so a survivor can read 'they' as 'I'; a concussion calls for a different list, and none of this replaces what the treating team tells you.
The questions
Each question, and why to ask it
The injury
What kind of brain injury is this, and which parts of the brain were hurt?
Why ask it
Have the words from the report written down and explained one at a time: a bruise on the brain, a bleed and where it sits, swelling, or injury spread through the nerve fibers. Then ask what the damaged areas normally do, because that is the link between the scan and the changes you may see later.
How severe is the injury, and what puts it in that category?
Why ask it
Mild, moderate and severe are labels a team sets from things like how responsive the person was at first, how long they were unconscious and how long the confusion lasts afterward. Find out which of those decided it here, and whether the label could still change.
Is an operation needed now, or might one be needed later, and what would it be for?
Why ask it
Surgery after a head injury tends to have one job, such as removing a clot or making room for swelling, so ask what it is meant to do and what it will not fix. If a piece of skull is taken out, find out how the head is protected afterward and when the bone goes back.
What was the Glasgow Coma Scale score when they arrived, and what is it today?
Why ask it
The scale adds up eye opening, speech and movement, so get the three parts as well as the total. Check whether sedation or a breathing tube was in the way when it was taken, since a score measured through either tells you less.
Can you show us the scans and point out what you are looking at?
Why ask it
Many doctors will pull the images up if asked, and a bleed you have seen is easier to hold in mind than a word in a report. Have them show a normal area beside the injured one, and say what the next scan should look like if things are going well.
Could there be damage that the first scan does not show, and would an MRI tell you more?
Why ask it
The scan done on arrival is usually a fast one aimed at bleeding and swelling, and the team may tell you that finer injury does not always appear on it. If an MRI is planned, ask when it becomes safe to do and what it would change; if it is not, ask why.
Are there injuries to the neck, spine, face or the rest of the body, and how do they affect the plan for the brain?
Why ask it
After a crash or a fall the head is seldom the only thing hurt, and a broken leg or a chest injury can decide when sedation is lifted or therapy begins. The follow-up is who looks after each injury and whether those teams talk to each other.
Intensive care
Is their life in danger right now, and when will you know more?
Why ask it
Put this to the most senior doctor you can reach, away from the bedside. The reply is often a stretch of days the team is most worried about, so follow with what would have to stay steady over that time for the worry to ease.
What could go wrong in the first week, and how would you catch it early?
Why ask it
A clear answer names the risks for this person, which might be more swelling, further bleeding, infection or a clot in a leg, and says what is being checked for each. It also explains why the nurse keeps rousing them and shining a light in their eyes through the night.
Is the pressure inside the skull being monitored, and what do you do when it goes up?
Why ask it
Not everyone gets a pressure monitor, so start with whether there is one and why. If there is, families end up staring at that figure: learn the range the team wants and the steps they take above it, and which other numbers on the screen you can stop watching, because alarms sound for many harmless reasons.
Why are they sedated and on a ventilator, and what has to happen before that is eased?
Why ask it
Sedation is often part of the treatment and not a measure of how deep the injury is, and it is worth hearing which it is here. Then ask what the team looks for before lightening it, and what you are likely to see on the first day they try.
Are they in pain, and how can you tell when they cannot say so?
Why ask it
Staff judge pain in someone who cannot speak from signs such as a grimace, a jump in heart rate or pulling away when they are turned, and can show you what they look for. Mention anything that hurt before the accident, a bad back or an old shoulder, because nobody on the unit will know about it otherwise.
How would you describe their level of consciousness today, in the exact term you would use?
Why ask it
Coma, an unresponsive state, minimally conscious and confused mean different things to staff, while families use them loosely. Get the word, then ask what the person does or does not do that puts them there, so you know which small change would count as a step.
Can they hear us, and what should we be doing when we sit with them?
Why ask it
Nobody can tell you for certain what gets through, and many nurses will suggest acting as if some of it does: say who you are, speak normally, one voice at a time. Check whether there are times to keep things quiet, for instance while the pressure in the head is high.
Are seizures a risk after this injury, and is anything being given to prevent them?
Why ask it
If a preventive medicine has been started, find out how long it is meant to continue, because the plan for the first days and the plan for later can differ. Ask too what a seizure would look like in someone who is sedated, since staff may be watching for something much quieter than shaking.
What does waking up usually look like after an injury like this?
Why ask it
It is rarely the sudden moment films show. Teams often describe stages, eyes opening, then following a face or a simple request, then a long confused stretch, so ask what the first sign would be and give the nurse the time and the details when you think you have seen it.
Is this the right hospital for an injury like this, or would a specialist center offer something different?
Why ask it
Not every hospital has neurosurgeons or a brain injury intensive care unit on site, and who gets moved depends on the region and on how steady the person is. Put it as a question about what is available here, and expect to hear both what a transfer would add and what the journey itself would risk.
While they cannot speak for themselves, who makes decisions about their treatment, and how does that work here?
Why ask it
Who may consent for an adult differs by country and state, and being the spouse or parent does not settle it everywhere. The hospital social worker can explain how it works there, and any advance directive or power of attorney papers the person had should come in with you.
Outlook
What do you think the outlook is, and what are you basing that on?
Why ask it
Teams weigh things like age, the first scores, how the pupils react, the scan and how the opening days have gone. Ask which of those are counting for and against in this case, and be cautious with an answer that is all reassurance or all gloom this early.
How soon will anyone be able to make an honest prediction?
Why ask it
Many teams will not be drawn in the first days, and some will say outright that early predictions after a serious head injury can be wrong in either direction. What you can get is a date to come back to the question, and what they will be looking at by then.
How long has the confusion after waking lasted so far, and what does its length tell you?
Why ask it
Staff may call this post-traumatic amnesia: awake and talking, but not holding on to new memories from one day to the next. Rehab teams often test it daily and treat how long it lasts as one guide to severity, so ask for the count so far and how they will know it has ended.
What might the best realistic outcome and the hardest one look like a year from now?
Why ask it
A range with two ends is something a doctor can often give when a single forecast is not. Have it put in everyday terms such as walking, talking, being left alone and working, and ask which end they would lean toward today and why.
How long does recovery usually go on, and when does most of the change tend to come?
Why ask it
You will hear different figures from different people, so ask this team what they see in their own patients and whether improvement can continue after formal rehab ends. Treat any timeline as a help in planning leave and money, not as a deadline for the person.
Which changes over the coming weeks would make you more hopeful, and which would worry you?
Why ask it
This turns a vague wait into things you can watch for: following a command, recognizing a face, the first sensible word. Write the list down and bring it to the next meeting to go through which have happened.
If they do not wake up as hoped, what decisions might we be asked to make, and when?
Why ask it
It is easier to hear this before the day arrives than on it. Ask who would be in the room, how much time there would be to think, and whether a palliative care team, chaplain or counselor can sit with the family. What the person would have wanted is usually the question put to relatives, so talk about it among yourselves first.
Rehab
When does rehab start, and is anything being done while they are still in intensive care?
Why ask it
Therapists often begin at the bedside with positioning, splints, stretches and sitting up, well before anyone uses the word rehab. Find out who has seen them so far, and what would mark them as ready for a full program.
What are the options for rehab after this hospital, and who decides which one they are offered?
Why ask it
A specialist brain injury unit, a general rehab ward, a nursing facility and therapy at home are very different things, and which exist and who pays depends on the country, the insurer and what is nearby. Ask what the person has to be able to do to qualify, who sends the referral, and whether you can visit first.
Which therapists will be working with them, and what is each one working on?
Why ask it
Physical, occupational and speech-language therapy and neuropsychology each cover different ground, and families often meet them in passing without knowing who does what. Get from each one the single thing they are working toward this week.
What are the goals for the next two weeks, and how will we know whether they were met?
Why ask it
Rehab units usually set goals at a regular team meeting, and relatives can often attend or send a question in. Push for goals in daily terms, such as getting from bed to chair with one helper, in place of 'improve mobility'.
How are they being fed, and when might they eat and drink by mouth again?
Why ask it
A feeding tube is often there because swallowing is not safe yet, and it is less frightening once you know whether that is the reason here. The things to pin down are who tests the swallow, when it will be tested again, and what you may and may not bring in from home.
How should we talk to them while they are confused or cannot find the words?
Why ask it
The speech-language therapist can tell you what works for this person: short sentences, one speaker, extra time, a choice of two. Ask too how to handle the same question asked for the twentieth time, and whether to correct them when they have a fact wrong.
Now that they are awake, what helps during our visits, and what sets them back?
Why ask it
Labeled photos, a familiar playlist or a calendar by the bed may be welcome, while a crowd of visitors or a quiz of 'do you know who I am?' often is not. Ask for one activity the therapists would like practiced between sessions, and how long a visit should last.
What happens if progress slows, or the approved stay ends before they are ready to leave?
Why ask it
How long someone can stay and who reviews it are set by the insurer, the health service or the unit, so ask how it works there and how a decision can be questioned. It is also worth knowing whether they could return to rehab later if they start improving again.
Mind, mood and body
Which thinking skills has the injury affected, and will anyone test them properly?
Why ask it
A neuropsychological assessment sorts 'not themselves' into separate things: attention, memory, speed, planning, judgment. Ask when it is worth doing, since testing very early may say little, and make sure the results come with strategies as well as scores.
Will their memory of the accident and the weeks around it come back?
Why ask it
Many people are left with a gap, and the team can say what they expect in this case; the more practical point is whether new memories are sticking now. Ask how to tell the story of what happened, because they may need to hear it many times and it should be the same each time.
They are restless, shouting or pulling at tubes. Is that pain, the injury, or a stage of waking up?
Why ask it
Agitation during recovery is something brain injury units deal with daily, and staff can usually say what sets it off for this person: noise, tiredness, a full bladder, too many people. Ask what they do about it, how medicines and restraints are handled on this unit, and how you should react when it happens in front of you.
Why do they not seem to realize that anything is wrong with them?
Why ask it
Reduced awareness of one's own difficulties can come from the injury itself, which is different from stubbornness or ordinary denial. It matters for safety, since someone sure they can walk will try, so find out how staff handle it and what to say when they insist on going home.
Could their personality stay different, and which of the changes we are seeing tend to settle?
Why ask it
Bring examples: the swearing, the bluntness, the flat reaction to good news, the spending. The neuropsychologist or rehab doctor can say which of them they would expect to ease, which may stay, and what help exists for the ones that do.
Is the low mood or anxiety a reaction to what has happened or an effect of the injury, and who treats it?
Why ask it
It may be both, and the team does not need to untangle them before offering help. Check whether mood is being looked at routinely, who would treat it, and whether any of the current medicines could be adding to it.
Why are they so exhausted, and how should we pace the day?
Why ask it
Fatigue after a brain injury can be out of all proportion to what the person has done, and thinking tires as much as walking. The therapists can show you how to build rest into the day and what the early signs of overload are, which are often irritability or going quiet.
Are the headaches, dizziness, poor sleep or trouble with noise and light expected, and what can be done?
Why ask it
Raise each one separately, with how often it happens and what brings it on, because they may have different causes and different fixes. Then ask which of them would be a reason to call instead of waiting for the next review.
Going home
How much supervision will they need at home, and for which tasks?
Why ask it
'Needs supervision' has to become hours and activities: the stove, the stairs, taking medicines, going out alone, being in the house overnight. Ask whether a home visit, a trial day or a weekend at home can be arranged before discharge, so the gaps show up while there is still a team to fix them.
Who coordinates their care after discharge, and who do we call when something goes wrong?
Why ask it
You are after a name and a phone number, such as a case manager, a brain injury coordinator or the rehab clinic. Check that every follow-up appointment has a date, and that the discharge summary is going to the family doctor.
Which medicines are they going home on, and which are meant to be reviewed or stopped?
Why ask it
Drugs started in hospital for seizures, agitation, sleep or stomach protection can carry on for months unless somebody is due to look at them again. For each one, get what it is for and who reviews it and when, and do not stop any of them without that conversation.
What should they stay away from while the brain heals: alcohol, contact sports, heights, anything else?
Why ask it
Get a specific list with a date for looking at it again, because 'be careful' cannot be followed. Ask what a second knock to the head would mean in their case, and say plainly which activity the person is most likely to argue about.
Which problems can show up months or years later, and who should we tell if they do?
Why ask it
Teams may mention late seizures, hormone changes, a buildup of fluid in the brain, or mood and sleep trouble, and can say which apply here. What you need to leave with is who stays responsible for follow-up once rehab ends, and how to get back in if something new appears.
What has to happen before they drive again, and is there a formal assessment?
Why ask it
Rules after a brain injury differ by country and state: some places require the licensing authority or the insurer to be told, and some want a medical sign-off or an on-road test. Ask how it works where you live and get the answer in writing, since it is easier to point to a letter than to argue over the keys.
When might a return to work or school be realistic, and what would a first step look like?
Why ask it
Expect an answer in stages, such as a few short days with simpler tasks and a review date, and ask for a letter that sets out the limits, because someone who looks recovered is often assumed to be. What an employer or school has to offer depends on local law and policy, so find out who can advise on that where you are.
Are they able to manage money, sign documents and make their own decisions at the moment?
Why ask it
In many places capacity is judged one decision at a time, and the legal routes for acting on someone's behalf vary by country and state. Ask who assesses it, when it would be looked at again, and which social worker or legal adviser can explain the options where you live.
What financial help, insurance or benefits should we be looking into, and who can help with the forms?
Why ask it
This belongs with a social worker, case manager or benefits adviser more than with the doctor. What exists depends on the country, the insurer and how the injury happened, so ask what applies locally, whether any claim has a deadline, and which medical reports each one needs.
Where can family caregivers get help for themselves?
Why ask it
Possible answers include a brain injury association, a local or online group for relatives, respite care and counseling, and the social worker should know which exist near you. Say honestly how you are sleeping and coping when you ask, because a caregiver running on nothing puts the whole plan at risk.
I was the one injured. Can someone take me through what happened and what my records show?
Why ask it
Many survivors remember nothing of the hospital weeks and have only the family's version. A follow-up appointment is a fair place to ask for the timeline, the scans and the reasons behind each decision, and a relative's diary from those weeks fills in the rest.
I look recovered and do not feel it. How do I explain that to my family and my employer?
Why ask it
A neuropsychologist or occupational therapist can help you put the hidden parts, such as slow thinking, fatigue and a short fuse, into a few sentences other people can follow. See whether they would write it down, or say it to your family with you in the room, since it often carries more weight coming from a clinician.
Asking about a brain injury, from intensive care to home
Practical guidance for the conversation itself
Getting answers during the intensive care weeks
Ask for a family meeting
Corridor conversations get cut short by the next emergency. Ask the nurse to arrange a sit-down with the doctor in charge, away from the bed, and bring three questions written down. Many units hold these meetings as routine once the first days have passed.
Work out who answers what
The neurosurgeon knows the scan and the operation, the intensive care doctor the day-to-day picture, and the bedside nurse how the last twelve hours went. Later the rehab doctor and the therapists take over. A question put to the wrong person gets you a guess.
One caller, one time of day
A unit cannot brief six relatives separately. Pick one person to phone or attend, agree on a time with the nurse in charge, and have that person pass the news on. Intensive care doctors often rotate, so note the name of whoever is leading this week.
Keep a dated log
Record the scores, what changed, what was said and who said it. It keeps the family's account straight, and months from now it may be the only record the injured person has of weeks they cannot remember.
Before children visit
Find out whether the hospital has a child life specialist, social worker or psychologist who can prepare them. Describe the tubes, the machines and the shaved or bandaged head beforehand, keep the first visit short, and let the child decide whether to go in.
When the answer is 'we don't know yet'
Trade the verdict for a range
A doctor who cannot say what will happen can often say what the two ends look like and which way they lean. That is still information, and it is a fair thing to request at each meeting.
Ask the same thing again next week
The picture moves as swelling settles and sedation comes off, so an answer from day three may not hold on day ten. Repeating a question is not nagging in this setting. Date each answer so you can see the direction.
When staff seem to contradict each other
One person says 'doing well' and means the pressure stayed steady overnight; another says 'very serious' and means the injury as a whole. Ask each what they were referring to, and take any real disagreement to the doctor in charge.
What you read at night
Outcomes after a brain injury vary so widely that another family's story, good or bad, says little about this one. Bring what you found as a question, 'I read about this, does it apply here?', and let the team answer it.
How the questions change in rehab
Get into the goals meeting
Rehab teams usually review progress on a schedule. Find out when it happens, whether a relative can attend or send questions in, and who reports back if not. Tell them what the person cared about before the injury, since goals built on that tend to get more effort.
Describe behavior the way a witness would
'He was aggressive' is hard to act on. 'At four, after two visitors and no nap, he shouted and threw the cup' gives the team a time, a trigger and a pattern. Keep a few of these in the log.
Have the therapist watch you do it
Before any day at home, ask to be shown transfers, feeding, prompts and what to do during an outburst, then do each one yourself while the therapist looks on. Hearing the instructions is a long way from carrying them out alone on a bad evening.
Bring the injured person into it
As the confusion lifts, put questions to them first and wait longer than feels natural for the reply. Check with the team how much to tell them about the accident and their condition, and in what words, so that everyone gives the same account.
After discharge
Keep one folder
Discharge summary, scan reports, the medicine list, therapy programs, and the names and numbers of everyone involved. New doctors, insurers, employers and schools will each want part of it, and getting a second copy from a hospital can take weeks.
Write down the months since the last visit
For each follow-up, list what has improved, what has not and anything new, with examples. The injured person and a relative notice different things, so both should have a say, and it sometimes helps to send the relative's account in beforehand.
Late problems still count
Something that appears a year on, such as a first seizure, a slide in mood or a change in sleep, is worth reporting even though the injury feels like history. Before rehab ends, learn who to contact and whether a new referral would be needed.
If you are the one who was hurt
Take someone with you, write your questions down beforehand and request a written summary afterward, because memory and fatigue can let you down in a long appointment. You are allowed to ask for a break, or to finish by phone.