This information is for the family and friends of someone who is seriously unwell after a stroke. As well as medical questions, we also cover some of the things you may need to know about making decisions on someone else’s behalf.

If you need someone to talk to because a loved one has died or is very ill after a stroke, contact our Helpline. Our trained Helpline professionals can give ideas on where to get practical help and emotional support. They also offer a listening ear for anyone affected by stroke. You can read our information about grief and bereavement after stroke.

The information on this page can be accessed in the following formats: 

Looking after yourself

When your loved one is so unwell with a stroke that they may not survive, it can be a very difficult and stressful time. This can be even more difficult if the person is unwell for a long period. Often families want to stay with the person who’s had a stroke, and hospitals will try and accommodate this.

But it is also important to look after yourself. No matter how unwell a loved one is, it is important that you take time to have a meal and get some sleep. 

How does a stroke affect the body?

A stroke happens when the blood supply inside the brain is disrupted, killing brain cells. If this happens in a part of the brain that controls the body’s automatic ‘life support’ systems like breathing and heartbeat, it can be life-threatening.

Risk of another stroke

After any stroke, the chance of a second stroke is much higher, and if someone already has damage to the brain, a second stroke can make them much more unwell. The medical team works hard to reduce the risk of a second stroke by treating risk factors like blood clotting, high blood pressure and heart problems. 

Swelling in the brain

A serious stroke can lead to dangerous swelling in the brain. This can sometimes be treated with surgery to remove part of the skull and reduce the pressure inside the brain. This surgery is called decompressive hemicraniectomy.

If someone has swelling in the brain, they are often too unwell to make a decision about their own care, so the medical team will work closely with their family or carers to agree on the best treatment and care options. While the surgery can save someone’s life, it can leave them with very serious disabilities. Deciding what is best for an individual can be a complex and personal matter for their family and carers, and the medical team will support them in making a shared decision about treatment.

A patient decision aid explaining the pros and cons of decompressive hemicraniectomy is available from the National Institute for Clinical Excellence (NICE). 

Complications after stroke

Stroke can lead to serious health complications, which can also cause someone to become very unwell. These can happen soon after a stroke or many months or years later. The medical team in the hospital carries out checks to identify and treat problems as they happen. These can include:

  • Swallowing problems, which can mean the person inhales particles of food or drink. This can lead to chest infections or pneumonia.
  • Being immobile for long periods. This increases the risk of a deep vein thrombosis (DVT) forming. A blood clot forms in a vein, often in the lower leg. If the clot moves to the lungs, it can block the flow of blood to the lungs, known as a pulmonary embolism.
  • Heart attacks are more likely after a stroke, as they are linked to many of the same risk factors and health problems.
  • Seizures after a stroke. These are also linked with a greater chance of death and more serious disability. 

When someone is unconscious or in a coma

The most severe strokes can leave a person unable to respond, or in a sleep-like state. This is sometimes called unconsciousness or coma, and it means that important parts of the brain are not working well. Coma is a worrying sign, as it may mean that the stroke is severe enough that the person may not survive.

Coma can have a number of causes. In some situations, the cause of the coma can be reversed, but often there is no direct treatment. The medical team will support the person’s health and see if the coma improves over time. They carry out checks and treatments to reduce the risk of another stroke and avoid complications developing. They also look after the person’s comfort and wellbeing.

They will support family members or carers at a difficult time and should let you know what is happening. If you feel uncertain about how you can help, ask the medical team what you can do. 

Supporting someone in a coma

Some people who have survived a coma say that they weren’t aware of what was happening, but they recognised familiar voices and took comfort from this. So don’t be afraid to talk to someone in a coma. When you come in, say who you are and talk to them about your day and other things as you normally would. Remember that they might be able to hear everything said around them.

Physical contact like hand holding can also help, as long as the person would have been comfortable with this when awake. You can try stimulating their senses with music or a favourite perfume.

A person in a coma is not always motionless. They may grasp with their hand or make sounds. This is not always a sign of recovery, and involuntary movement can be seen even in a deep coma. 

Different states of consciousness

Doctors assess a person's level of consciousness using a tool called the Glasgow Coma Scale. This allows them to monitor for signs of improvement or deterioration. The Glasgow Coma Scale measures:

  • Eye opening – a score of 1 means no eye opening, and 4 means opens eyes spontaneously.
  • Verbal response to a command – a score of 1 means no response, and 5 means alert and talking.
  • Voluntary movements in response to a command – a score of 1 means no response, and 6 means obeys commands.

After a coma, someone might have basic reflexes like blinking at a loud noise or feeling pain. They may open their eyes and sleep and breathe normally. This is sometimes called a vegetative state.

If someone has more signs of conscious awareness, like being able to respond to a command or communicate at times, this can be called a minimally conscious state. Some people can continue to gain awareness, but it can be a long-term condition for others.

If you’re not sure what state of consciousness someone is in, ask a member of their medical team. They monitor the patient closely, and they can tell you about any changes. They can explain what treatment and support is being given.

If someone can’t do things for themselves such as eating and going to the toilet, they may be given help like a feeding tube, and a catheter to drain the bladder. They will be moved to keep limbs flexible and avoid pressure ulcers, and staff carry out basic hygiene like tooth brushing and washing.

They can be given meaningful activities such as listening to music and looking at pictures. 

Locked-in syndrome

Very rarely, someone can be conscious but unable to move or speak, known as locked-in syndrome. They can usually breathe unaided, and can hear and see, blink and move their eyes. They might be able to communicate by blinking.

Locked-in syndrome is often due to a stroke in the brain stem, which is the part of the brain closest to the spinal cord. The brain stem controls vital functions like breathing and heartbeat, as well as consciousness and movement.

Ask the doctor what the person is aware of and what their movements mean to help you understand their condition. Find out more about locked-in syndrome

End of life care

End of life care is support for people who won’t recover from an illness. This can last for as long as it’s needed, and can be days, months or longer. It should help the person live well for as long as they can, and die with dignity.

It can include palliative care, which is holistic treatment and support to make someone as comfortable as possible. This can mean managing pain and symptoms, as well as psychological and social support for the person and their family.

Where can end of life care be given?

It’s possible to have care end of life care at home, in a care home, in the hospital or a hospice. The choice depends on the advice of the medical team, as well as the wishes of the person and their family. If it’s outside a hospital, the GP is the main point of contact.

Someone in their own home can have care from community palliative care nurses and other specialist professionals. They can also spend time at a hospice, or use the support services offered at a hospice.

Care in a hospital and hospice is free, and in a home or care home, the NHS and local council may fund parts of the care provided. The funding and help for care available varies between UK countries and local areas. Your GP can help you understand what’s available in your area.

Signs that life may be ending

It’s not usually possible to predict exactly when someone might die, but there are some signs that show someone is close to the end of their life. In the final days and hours, they may become drowsier, or stop eating and drinking. They can appear confused or restless.

Their breathing can change, and become less regular. It may be noisy, due to fluids building up in the airways. This doesn’t always cause distress to the person, but can be worrying for people around them. Some things can help, such as raising their upper body or suction treatment, and medication can be given if needed.

There is more information about end of life care from the NHS and Marie Curie 

Making treatment choices on behalf of someone else

Normally patients have to give consent before any treatment, but if someone is unable to respond while they are having a stroke, doctors will give the emergency treatment that’s needed.

If someone can’t take part in discussions about their own treatment after a serious stroke, or if they are very ill due to complications, other people need to make those decisions.

The exception is when someone has already explained their wish to decline certain treatments. In England and Wales, the ‘Advance decision’ document (also known as a living will) is legally binding, and in other parts of the UK, it lets doctors see what the person wanted. Later in this guide, we give more information about advance decisions, and how these can help the family and team caring for someone.

The responsibility for treatment decisions lies with doctors, but they will always try to work closely with family or carers to try to make sure that the choices are made in the best interests of the person needing care. Those around the patient should work together to consider what the person would have wanted, if they are not able to take part in discussions about their treatment.

In some cases, doctors may suggest withdrawing treatment. This will be based on the individuals’ circumstances, such as how long they have been unconscious, how likely they are to recover, and other health conditions they may have.

Legally, doctors are not able to take active steps to end a person’s life. But they can recommend ending active treatments such as antibiotics to treat pneumonia.

This doesn’t mean that the person is not being cared for, as the medical team will continue to look after them and make them as comfortable as possible at the end of their life.

Family members sometimes disagree with doctors about treatment choices. They might have hope that the person will recover if given time, or they might believe that the person would not wish to continue living in those circumstances.

Whatever your views and those of your family, it’s important to have a discussion with the doctors. Their goal will be to do the right thing for the person who has had the stroke. If an agreement can’t be reached, the case may need to go to court for a legal ruling. 

The right to decline treatment

If a person has been able to plan ahead, it can be very helpful to their family and the medical team treating them. If they have discussed what they would like to happen if they are very unwell or dying, you can bring this into your discussions with the medical team.

Some people create a written statement about their wish to avoid specific treatments. It can help to give a picture of their views and attitudes about their end of life care. 

Advance decisions and advance statements

Advance decision (England and Wales)

An advance decision, sometimes known as a living will, is a written instruction about refusing specific types of life-sustaining treatment. It’s a way for someone to make choices in advance, in case they become unable to make a decision in the future. This can include things like being on a ventilator, having CPR (chest compression to restart your heart), or antibiotics. An advance decision is legally binding provided it has been signed and witnessed, and you have the mental capacity to make the decision.

Advance statement (England and Wales)

You can also create an advance statement, which sets out your preferences, wishes, beliefs and values about your future care. It’s not legally binding, but it provides a guide to those who need to make decisions about your care if you lose the ability to make choices yourself.

Advance decision (Scotland and Northern Ireland)

In Scotland, this advance decision is known as an advance directive. It is not legally binding, but it is very likely to be respected by medical staff and relatives. Scottish courts would be likely to respect the views in an advance directive provided the person had the ability to make their decisions when the directive was written.

In Northern Ireland, like in Scotland, if you set out what you want to happen in an advance decision document that is signed and witnessed, it will make it much more likely family members and medical and legal professionals will be able to understand and carry out your wishes if you do become unable to make decisions about your own treatment.