Firstly, there is no such thing as a normal or typical death: it’s different for every single person. Sometimes, death is sudden and unexpected. In other cases, it may seem like the person will die soon and they are still around for weeks or months.

What does dying look like?

There are some signs that death is near, although it is impossible to know the exact moment that it will occur. These changes might start weeks, days or just hours before death.  

• Weak and lacking energy. Your sibling’s body will start to wind down and they might drift in and out of consciousness. Or they may stay alert until the end.
• They might not feel hungry or thirsty and find it hard to swallow.
• Their skin might feel cool and change colour as their circulation slows down.
• Their breathing changes, with periods of fast breathing, then shallow breathing and short periods of no breathing. Sometimes fluid in the lungs makes a bubbling noise. It’s likely the patient does not find this distressing, although you might find it frightening.  
• Hearing is one of the last senses to be lost, so keep talking, even if they don’t respond.

Remember: For many people, dying is peaceful. Ask the medical and nursing staff about anything you are worried or unsure about.

Will they be in pain?

Not everyone who dies from cancer gets pain. But for those who do, pain can almost always be effectively controlled. There are lots of different types of painkiller drugs, plus other ways to relieve pain such as massage, meditation, using heat or cold, acupuncture, aromatherapy or with counselling or psychological treatment.

Will I be there when they die?

This is a very personal decision and something you should talk about with your family. Let your family know if you want to be there at the end if you can and make an agreement that you will be woken up or taken out of school if it happens then.

It’s perfectly OK if you don’t want to be there. There will be plenty of ways you can say your goodbyes to your sibling.

Stories of the end by other siblings…

“My brother Peter’s death was quite sudden. He had been quite well and cheerful for the week before. On the Saturday morning he got up and asked my father to take him out for a ride on his motorbike. When they got home around lunch he said, “OK Dad, I need you to take me to hospital now”. He passed away in hospital early on Sunday morning. He was 14 years old.” Jane

“We were really well informed as to what would happen if we left the machines on and what would happen when we turned them off and we all agreed that it would be much kinder for Melanie’s sake to end her suffering by turning the machines off. Her body had given up.” Sarah

“In August, it got very serious very quickly. Tay woke up at about 3am but he couldn’t move. The poor kid had had a stroke. Off to hospital again. This time he'd had enough. He was paralysed on his left hand side and his eyes said it all. He was done. He slipped away at 8am on the 28th of August.” Megan