Intensive care: experiences of family & friends

End of life decisions

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 the use of certain treatments such as ventilation (life support machines) or kidney dialysis machines should be stopped. If appropriate, doctors may also talk to family members about organ donation.

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.

According to the law in the UK, family members are not responsible for making medical treatment decisions on behalf of another adult. 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. Even if someone is ‘next of kin’ (a parent, partner, sibling, close friend etc.) they are not ‘the decision-maker’ – and have no power to consent to, or refuse, medical treatment on the patient’s behalf. The only exception to this is if legal action has been taken to give a relative such powers. Medical staff should make ‘best interests’ decisions – informed by the views of family and friends about what the patient would have wanted. It is then the clinician in charge’s responsibility, not the family’s, to decide whether it is right to continue or discontinue different forms of treatment. If the clinician cannot decide to withdraw the feeding tube, the decision lies with the court.

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 the doctors could continue trying to keep the patient alive but the family 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 was extremely traumatic and being involved in end of life decisions felt 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. 

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

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. 

Predicting whether a patient will survive or what quality of life they might 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. 

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

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. 

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

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').

For more experiences of end of life decisions see our section Family Experiences of Vegetative and Minimally Conscious States - Family experiences of decision-making.
 

Last reviewed May 2015.
Last updated May 2015.

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