Caring Decisions

Reuben’s story

  • Reuben had been born very prematurely and was in the newborn intensive care unit after birth. When he was a few months old there were worries about his development, and he was later diagnosed with severe cerebral palsy, epilepsy and chronic lung disease.

    Reuben had serious health problems, but he also enjoyed life in early childhood. His mother Natasha recalls:

    "He was really, really happy even though he had quite high needs…you know he only had two [or three] things in life…eating, going to school and family"

    However, Reuben's breathing troubles became worse as he got older, and when he was 8 years old his parents were asked about whether life support and resuscitation were the right things for Reuben if he became seriously unwell.

    Natasha was worried that if Reuben needed resuscitation he could end up in a much worse state.

    "he had a lot of complex needs and he's going to come back worse…no we weren't going to, if he went into cardiac arrest, we would make him comfortable"

    The family agreed for a DNAR (AND) order for Reuben. Natasha also remembers doctors talking about whether to put Reuben on a breathing machine if he became worse.

    "If we intubate it may mean he may not come off and he may need to be on this machine for however long you want. Then the next decision will be if we remove [the breathing tube]"

    The family decided that they didn't want Reuben to be intubated, but they did want other, less invasive life support treatments. Reuben was taken to intensive care and his doctors tried helping his breathing with a mask (CPAP). But Reuben didn't tolerate it.

    "Oh that was dreadful…he was actually fighting against it. So he wasn't breathing with it he was going against it. And [Reuben's doctor] said look I don't think this is working any more"

    Reuben's parents were introduced to specialists from palliative care, and he was transferred back to the ward. After a time Reuben improved, and he went to a hospice before going home with the support of palliative care nurses. He was able to return to school for a short period. A little while afterwards Reuben became ill again and returned to hospital for his final care. He died in the presence of his family.