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.
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.
Several people described how helpless they had felt sitting by the patient’s side waiting for news, (see
‘Intensive 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.
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.
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.
One couple felt that intensive care medical staff had lacked compassion’
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’.
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.
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.
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.
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.
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’).