Personal views: Thomas comes home
Authors: David Stevens
Journal: BMJ (1998)

The front door had been left open and we walked straight in. Thomas’s mother and father were there with their closest friends and family. A space was left for Thomas. His favourite Thomas the Tank Engine pillow and duvet were laid out on the sofa. We were there to welcome Thomas home and to say goodbye. 

Thomas had been taken ill a year ago at the age of 4. His brain tumour was extensive and could not be removed surgically. He underwent a tough chemotherapy regimen, which had some effect on the residual tumour but it bought him only a precious year. That year was one in which there were lots of hospital visits but it was also one in which he continued to play with his friends, had a lot of fun and laughter, enjoyed looking after his pet guinea pig and rabbit, and took the huge leap from age 4 to 5. 

When his symptoms recurred the scan showed further extension of the tumour. Faced with no prospect of cure, his parents talked to Thomas’s neuro-oncologist and to me, his paediatrician. We all came to the conclusion that our aim must be to make Thomas’s life as comfortable as possible. The parents were comforted to know that we would provide support and help so that Thomas could be nursed at home throughout his final illness. 

No more chemotherapy and no more hospital visits or admissions. Thomas’s life seemed to become more normal despite having to take dexamethasone and then morphine. These drugs seemed to bring him more energy over the next few weeks as his symptoms were controlled. He expressed a wish to see his relatives in Yorkshire. By this time he was needing more morphine, but he was excited at the prospect of the journey. He had some good days in Yorkshire before suddenly going into status epilepticus. He was admitted to the local hospital and then transferred to the nearest paediatric intensive care unit. 

After some days it became clear that Thomas was unlikely to come off the ventilator. We were in constant contact with the staff who were looking after Thomas and supporting his parents. Was Thomas’s life to fade away gradually while on a ventilator? Should ventilation be withdrawn for him to die in the unit? Should he be transferred to a hospital near his home while still ventilated? Or was it possible that he could be brought back to his home? 

No decision was made for the next day or two. The parents needed to have time to think. Then I got a call from the Yorkshire hospital that Thomas’s parents wanted him transferred back to Gloucester. The nurse with me felt sure that they meant transfer back to the hospital. I wasn’t so sure. Did the parents mean the hospital or their home? They had driven back to Gloucester to sort some things out and we contacted them. They seemed uncertain at first and wondered how they would manage. But after we reassured them that we would be there when he reached home, they decided that they would like Thomas to be brought directly to their house. 


Thus it was that two paediatric oncology nurses and I waited at Thomas’s house for the ambulance to arrive from Yorkshire. The consultant anaesthetist and the nurse took Thomas off the ventilator and carried him into the sitting room where his parents held him while the endotracheal tube was removed. Thomas decided to breathe but did not regain consciousness, and his life gradually faded away over the next 36 hours and he died in his parents’ bed. 


“The whole episode was a health economist’s nightmare.”



Thomas’s last conscious moment had been 10 days before, since when he had been cared for in two Yorkshire hospitals and then transferred to his home. He could not have been aware of any of this. An ambulance staffed by two paramedics, a consultant anaesthetist, and a paediatric intensive care nurse had delivered an unconscious terminally ill child to his home 150 miles away to be met by a consultant paediatrician and two oncology nurses. 

The whole episode was a health economist’s nightmare. How did our actions square up in the world of cost effectiveness and quality assisted life years (QUALYs)? Could any of us stand up and say that we had changed the quality of life of an unconscious child? What had happened was that his parents had been able to take over the care of their dying child in their own home supported by their family and friends. The health professionals were able to be in the background rather than at the centre of Thomas’s life. 

We have seen the parents many times since Thomas’s death. They both say how important it was to be able to look after Thomas in his own home. They can talk easily about Thomas to us and to their friends and family. I know that nothing we did will take away the grief that the parents feel, but it is possible that they will be better able to come to terms with their loss after caring for their dying child at home. I do not think we had any effect on the quality of his life during his last days, but for those who looked after Thomas, above all his parents, some QUALYs may come from seeing Thomas come home at last.