At the hospital

Donor families talked about what happened when they arrived at the hospital or in intensive care after their loved one had suddenly become ill or injured. Some had been transferred from a small, local hospital to a larger one with specialist equipment.

Organs which are suitable for donation usually come from people who have been on a ventilator (life support machine) in a hospital intensive care unit (ICU). Patients are admitted to an 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 given on a general ward (see ‘Intensive care: Patients’ experiences‘).
Most people we interviewed had no idea what to expect when they learned that their relative had been admitted to hospital.

Ann’s son, Mike, was in intensive care when she got to the hospital. She thought he’d had a…

Age at interview 57

Gender Female

View profile

Because the illness or injuries had been sudden and unexpected, many people found it hard to believe how seriously ill their loved one was. Frank did not realise the gravity of his wife’s condition and was shocked when she herself told him that she felt she would die.

Frank tried to reassure his wife, Jen, that she would recover. He later received a phone call…

Age at interview 62

Gender Male

View profile

Several people described how helpless they had felt sitting by the patient’s side waiting for news, (seeIntensive care: experiences of family and friends). Some had been encouraged by nurses to talk to their loved one because there was a possibility that they could hear. When encouraged and guided by nurses, some had helped with the patient’s care. Several had seen ICU staff at work and said they had always treated their relative with dignity and respect.

Nurses involved Sandra and Craig in their daughter, Rachels, care. They felt that doctors and…

Age at interview 44

Gender Male

View profile

Linda and her son waited in hope by her husband, John’s, bedside. It was hard to believe he had recently celebrated his 50th birthday but was now fighting for his life.

Although Linda was desperate for doctors to consider every possible option, including a second…

Age at interview 48

Gender Female

View profile

Sadly, not every patient survives critical illness, and death or the possibility of death, is common in ICU. Some people were particularly shocked and distressed to hear that their loved one would not survive because they felt they had been told insensitively or had not been sufficiently informed along the way (see Interacting with doctors and nurses in intensive care). Liz said she did not know her husband, Rick, might die; only after conversations with other relatives did she become aware of this.

Liz felt she was given very little information. She clung only to the positive news but, with…

Age at interview 46

Gender Female

View profile

One couple felt that intensive care medical staff had lacked compassion’

The ICU had no suitable room for relatives who needed some time alone. Though the staffs care of…

Age at interview 63

Gender Male

View profile

Some people we talked to had been advised by nurses to go home and rest. At home, however, they had received a phone call asking them to come back to the hospital because their loved one’s condition had deteriorated further still.
When it had looked as though the patient would continue deteriorating, doctors explained to some people that 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. Haydn, whose son William had had depression and taken an overdose, said that doctors tried to wean him off sedation in order to discover if he had any chance of recovering. Sadly, he did not survive. Although Haydn knew that William could die, he said, ‘It still hits you like a steam train’.

Doctors told Haydn that William faced three options: he could be severely brain damaged, he could…

Age at interview 52

Gender Male

View profile

At this point, some people desperately wanted their loved one to survive under any circumstances. With hindsight, though, they believed that this would not have been what he or she would have wanted. Some patients were given surgery but, sadly, did not regain consciousness.

Mick and Natalie’s son was transferred to a second hospital, where doctors told them that he’d…

Age at interview 53

Gender Male

View profile

When doctors did not expect the patient to survive, donor families were advised to let other relatives and friends know because they might want to say goodbye to the patient. The news of their loved one in hospital often spread quickly and friends and relatives started turning up to see them. When Sue’s son, Martin, collapsed unexpectedly, her husband was in America and rushed back to be at his bedside. Haydn did not have contact with his ex-wife and had to find her address through the police so he could inform her of their son’s condition.

Sadly, doctors could not save Martin, who had had a brain haemorrhage. News spread quickly and…

Age at interview 51

Gender Female

View profile

It was a huge shock to hear that a loved one’s condition or injuries were so serious that they would not survive. Some people were told as soon as they arrived at the hospital that the injuries their loved one had sustained were so extensive that doctors did not expect them to live.

When Jackie and her husband got to the hospital, they were told that their son, Lyall, would not…

Age at interview 71

Gender Female

View profile

Kirstie had a car accident on her way to work. She was airlifted by ambulance and taken to…

Age at interview 55

Gender Female

View profile

A few people also talked about how important it was for them to involve their young children in the death of their father (see ‘Interacting with doctors and nurses in intensive care’)

The doctors looking after a patient have to make every possible effort to save the patient’s life. That is their first duty. If, despite their efforts, the patient dies, death is diagnosed by brain stem tests. In the UK, there are very clear and strict standards and procedures for doing these tests. They are always performed by two experienced doctors who are completely independent of the transplant team. Death is confirmed in exactly the same way for people who donate organs as for those who do not.

Two consultants carried out a set of tests independently and confirmed that, sadly, Rachel had died.

Age at interview 44

Gender Male

View profile

It is around this time that the question of organ donation is raised and the family is given time to make their decision within medical constraints (see Consenting to organ donation’).

Before going to hospital

The time before hospital admission was difficult and traumatic for the people we interviewed, particularly because some events were sudden, unexpected and dangerous. Most people...

Consenting to organ donation

In England, Scotland and Northern Ireland, organs and tissue from a potential donor can be used only if that is their wish. Joining the NHS...