As your relative or friend nears the end of their life, you may find that you need more support and help from professionals to care for them. You can contact their district nurse, specialist nurse or social worker. They will reassess their needs and arrange extra care services, if necessary.
Your relative or friend may seem to be in pain. They may be restless, grimacing (screwing up their face) or moving as if they’re in distress. They may sweat and have a fast heartbeat and breathing rate. If this happens, the dose of their painkillers may need to be increased. Let their doctor or specialist nurse know so they can advise you about this. They can also check for other causes of these changes, such as an infection.
Your relative or friend’s breathing may change. For example, their breathing may become noisy because of fluid collecting in the breathing passages. Although this can be distressing for relatives and friends, the person won’t usually seem distressed themselves. Their doctor or specialist nurse will be able to give medicines which may help.
Restless moving, agitation, confusion, shouting, twitching or jerking of the body
Sometimes people have symptoms of restlessness, agitation, confusion, shouting or twitching. This is often called terminal restlessness. These symptoms can be caused by pain, constipation, difficulty passing urine, infection, side effects of medicines, or a build-up of waste chemicals (toxins) in the blood. Some people become restless because of emotional distress, a fear of dying or a fear of losing control. In this situation, they may get comfort from a close friend, trusted health professional or a spiritual or religious leader.
Terminal restlessness can often be well controlled with medicines such as sedatives. These can be given by injection or a syringe driver.
As someone gets closer to death, they may lose control of their bowel and bladder. You can talk to the district nurse about this, and they can get you aids to help, such as bed covers and pads. Men can have a sheath put over their penis to collect urine and drain it into a catheter bag. Sometimes it may be more comfortable for the person to have a tube (catheter) put into the bladder to drain away the urine.
Sometimes urine can’t drain out of the bladder, and so the person cannot pass urine. This causes severe tummy (abdominal) pain, and their tummy will feel very hard and bloated. If this happens, it’s important to contact your doctor or nurse and ask them to come urgently. They can put a catheter into the bladder to drain the urine and relieve the pain.
Religious and spiritual needs
Your relative or friend may want particular practices carried out, or prayers read, as they are dying. It’s important to do whatever you both feel is right and most helpful. Keep a note of anyone you need to contact in this situation.
Contacting support services
If you’re worried that your relative or friend seems to be distressed or has new or uncomfortable symptoms, contact their GP, district nurse or specialist nurse for advice and support.
You should be given telephone contact numbers for these services and numbers for use out-of-hours, for example, at night and weekends. Keep them in a safe place and use them if you need to.
End of life care plan
You may hear the doctors and nurses talk about your relative or friend’s end of life care plan. This is the care that the doctors and nurses will plan for your relative to meet their specific needs as they approach the end of their life. It will help to make sure that your relative or friend’s needs for food, drink, symptom control, and emotional, spiritual and social support, are met.
The doctors and nurses will involve you in decisions about your relative or friend’s treatment and end of life care plan. They will also give you support.
If you would like more information about your relative or friend’s care plan, speak to one of the doctors or nurses looking after them.