Organs suitable for donation usually come from people who have spent some time on a ventilator (life support machine) in a hospital intensive care unit (ICU). In ICU, patients are constantly looked after and monitored by a highly specialised team, which includes consultants, physiotherapists, dietitians and nurses, each of them with specialist knowledge and skills. Specially trained nurses provide round-clock care and monitoring, and there is a high ratio of nurses to patients – each person in ICU is usually assigned his or her own ‘named’ nurse (see ‘
Intensive Care‘).
Most people we interviewed spoke highly of the medical staff in ICU and the care their relative had received. They felt that doctors and nurses had done all they could to help their loved one and that information had been explained clearly. Nurses had often helped clarify or explain what doctors had told the family earlier, and told them more about ICU equipment or the nursing care itself. ICU nurses had sometimes encouraged donor families to become involved in the patient’s care, and this had felt meaningful at a time when relatives had often felt helpless.
It was important that the patient was treated with dignity and respect and many families praised this aspect of care when their relative was in intensive care and during and after organ donation surgery. Linda said all the doctors and nurses she spoke to when her husband, John, was in intensive care, made eye contact with her and updated her about his condition as honestly as they could.
Some people, though, were disappointed with certain aspects of their relative’s care. Eunice said that, when her daughter Kirstie was in the ICU, she and her family were asked to have meetings with the doctor. They were aware these would be difficult and suspected the doctor would be giving them bad news. However, they were left waiting for the doctor in a room on their own for quite some time and this had been extremely unsettling.
A few people felt that the news given to them by doctors could have been communicated more sensitively. Liz felt that the doctor who told her that her husband, Rick, was unlikely to survive, was ‘quick and quite abrupt’. The nurses, however, were caring and explained everything in more detail.
A few people felt strongly that doctors should ask all suitable families about the possibility of consenting to organ donation. Several also felt that doctors should tell donor families that their relative will still be breathing and warm to the touch when they say goodbye to them before organ donation surgery. They should explain that the ventilator is keeping the body supplied with oxygen so that the heart can carry on beating and circulating blood (see
‘Saying goodbye before organ donation surgery‘).
Catherine and Tom felt that, although the ICU nurses looking after Catherine’s son, John, had been very professional, they were not very comforting. They also felt that nurses should tell relatives when they had completed a procedure so that the family could go back to their loved one’s bedside afterwards. Lesley felt that her son’s care had been good but was upset that nurses had not noticed that his bed was wet.