Case study 2: Poor communication with a patient about his long-term prognosis and end of life wishes
What happened
Mr Y was being treated for acute lymphoblastic leukaemia (a rare type of cancer)with chemotherapy. His condition was later classified as high-risk due to a genetic mutation associated with aggressive disease and poor prognosis.
Mr Y’s cancer relapsed and a planned stem cell transplant could not go ahead. He received further treatment, but the cancerous cells remained.
Two months later, his cancer relapsed again. He was considered for treatment through a clinical trial, but this was postponed due to his deteriorating condition. Further tests suggested that he was developing steroid resistance, and his condition became difficult to manage with treatment.
He was readmitted to hospital and his health continued to deteriorate. Three days later, Mr Y’s family were informed that his cancer had relapsed again. The same evening, Mr Y became unresponsive, likely as a result of a stroke. The Trust informed Mr Y’s family that there was nothing more it could do and that he might die in the next few hours. Mr Y died the same night.
What we found
We found no evidence that the Trust ever had a discussion with Mr Y about his long-term prognosis if the planned treatments were unsuccessful, and how this would affect his life expectancy. We found that the Trust should have known, around three months before his death, that Mr Y was approaching the end of his life.
Although Mr Y was informed about his diagnosis of high-risk acute lymphoblastic leukaemia, he could not reasonably have understood the severity of his condition. Mr Y’s cancer had already relapsed twice, which was evidence that treatment could not control his disease and that a further relapse was likely.
The Trust did not explore Mr Y’s preferences for end of life care, such as his wishes about dying at home or in hospital. It did not do enough to clarify whether he wanted his family involved in decisions. While confidentiality may have limited what could be shared, there was no evidence that Mr Y asked the Trust to withhold information from his family.
The missed opportunity for advance care planning and discussion of Mr Y’s preferences with him and his family added to their distress and prevented them from preparing for his death.