End of life decisions

People are admitted to an intensive care unit (ICU) when they are so seriously ill that they need intense support while they are treated, constant monitoring and 24-hour nursing care that cannot be performed on general wards. The length of time patients stay in ICU depends on the extent of their illness or injuries - some recover quickly and others need to stay in ICU for weeks. ICU patients receive the best care and every treatment the medical team believes will help them to recover. On the occasions when recovery is not possible, the medical team may discuss with the patient's family whether certain treatments such as ventilation (life support machines) or kidney dialysis machines should be discontinued. If appropriate, doctors may also talk to family members about organ donation [see The Intensive Care Society].

Sadly, not every patient survives critical illness, and death or the possibility of death is an ever present reality in ICU. Most of the deaths in European and North American ICUs involve a decision to withhold or withdraw life-sustaining treatments. Medical staff have ultimately to bear the stressful responsibility of deciding when to continue with the battle to sustain life and when to change the focus to palliative care or a dignified withdrawal of treatment. Here people talk about end of life decisions when a relative, partner or close friend was in intensive care.

Some people said that, when it had looked as though their relative would continue deteriorating, doctors had asked them which course of action they'd want them to follow. It was explained that the treatments weren't having any effect and that, while the doctors could continue trying to keep the patient alive, they would have to be prepared to accept that if the patient did survive he or she would be left severely disabled, paralysed or brain damaged and expect that they would have a poor quality of life. In some cases, any improvement in the patient would only be temporary and further deterioration and ultimately death would be inevitable.

Hearing this news had been extremely traumatic and being involved in end of life decisions overwhelming. These situations are very personal and every family or individual deals with them based on their own feelings and circumstances. The patient's quality of life, coping with someone severely brain damaged and, for some people, religious and cultural considerations are all important. 

Some couples said they'd discussed end of life decisions before, and that the patient would not have wanted to be kept alive if he or she would have little or no quality of life. 

She and her husband had talked about end of life decisions and her husband had said he wouldn't want to live if he would be left brain damaged.

Others hadn't talked about end of life decisions but, when their relative had been critically ill, it had been a subject that doctors had discussed with them. 

They didn't want their relative to be kept alive if she would be brain damaged because she wouldn't want to live like that.

One man, an ICU consultant, felt that at this extremely emotional, distressing time, relatives and close friends needed to think about what the patient would want. 

It is important for relatives to think about what the patient would want, however hard this may seem at the time.

Predicting whether a patient will survive or what quality of life they'd have is a vast grey area characterised by uncertainty. One couple felt they'd been asked to make end of life decisions but that their options hadn't been explained properly to them. 

They felt confused and upset and didn't understand why doctors were asking them to think about end of life decisions when their son could breathe without a ventilator.

Some people said they'd wanted to keep the patient alive under any circumstances. Others said that, at the time, they'd wanted to hold on to the patient but, with hindsight, felt this wouldn't have been what the patient wanted.

At the time, she just wanted her son to live but now feels this would have been selfish because he wouldn't have wanted to be completely dependent on others.

A dignified withdrawal of treatment was extremely important for people whose relative wouldn't have any quality of life, though he or she could have been kept alive longer by medical technology. Achieving a comfortable and dignified death had been crucial and many relatives had wanted to be present when the patient died. 

His 83-year-old father had spent five weeks in ICU and wasn't improving. He and his mother felt it was kinder for doctors to withdraw treatment and put an end to his suffering.

She didn't want her husband to suffer any more and agreed with the doctor's advice to withdraw his treatment.

One woman felt she'd received conflicting information about making end of life decisions at different stages of her sister-in-law's illness.

She felt confused with the information she received from different doctors but, when her sister-in-law deteriorated even further, doctors made the decision to withdraw treatment.

Some people said the patient had become so ill there'd never been any decisions for them to be involved in. The doctors had told them they'd tried everything they could but the patient had continued deteriorating. For those whose relatives or close friends die in intensive care, it is a traumatic experience which everyone deals with in different ways (see 'When someone dies' and 'Coping with bereavement').

Last reviewed November 2010.

Last updated November 2010.