Dying without dignity

Not recognising that people are dying, and not responding to their needs

In many of the cases that we reviewed, clinicians failed to recognise that the person was dying. In other cases, clinicians did not identify the person’s needs. While we appreciate that this is not always easy, there are certain key signs that clinicians should be able to see when someone is coming to the end of their life. 

When clinicians do not recognise these signs, it means there is a failure to properly plan and manage care needs, and this is more likely to lead to crises that could be avoided. Inevitably this causes unnecessary distress to the person and their loved ones. It also delays understanding the real situation, and the dying person’s wishes. In turn, this does not allow those close to the person to be involved with their death. 

Man suffered for four months before receiving the care he needed at the end of his life

What happened

Mr N was a 60-year-old man. He had high blood pressure, poor circulation, and poor mobility. He also suffered from kidney failure that had been treated with dialysis for nine years. Mr N’s care was managed by different hospital specialists and his GP Practice.  

When Mr N began to have regular episodes of vomiting, it was clear that his health was getting progressively worse. His wife, Mrs N, became increasingly worried, as she was finding it more and more difficult to give her husband the care he needed.

Mrs N contacted a local hospice and asked them for support at this difficult time. But when the hospice spoke to Mr N’s GP Practice about referring him, the Practice said he was not yet ready for end of life care because he was still being considered for heart surgery.

It failed to communicate with other specialists to co-ordinate and plan Mr N’s care until three days before he died.'

Mr N continued to deteriorate. He suffered pain for four months before the Practice referred him to district nurses to give him support at home. Just five days after that, Mr N’s Practice registered him on the Gold Standard Framework (which sets out a GP’s responsibilities in providing care for patients who are dying) to plan his care because it recognised he was approaching the end of his life. Sadly, Mr N died three days later. 

Mrs N explained ‘I needed someone to say “right, let’s get together in the same room, and here’s the plan, we’ll all work together so that we can help Mr N”, but no one thought it was necessary to do that. They were all interested in their own “bit” and not the person in the middle of it’. 

What we found

Our investigation found that Mr N’s GP Practice did not assess his care needs or discuss his priorities for care when it became clear he was so unwell that he was likely to die within the year.

It failed to communicate with other specialists to co-ordinate and plan Mr N’s care until three days before he died, even though this was central to its role. We also found that Mr N’s Practice could have registered him on the Gold Standard Framework earlier, even though he was still being considered for surgery.     

Not enough was done to improve the lives of Mr N or his wife in the four months leading up to his death. Mrs N did not feel supported by the organisations that were meant to help her and her husband in their time of need. This would have made Mrs N’s distress even worse and marred the last few months of her husband’s life.  

Palliative care failure meant man spent the last few hours of his life in pain

What happened

Mr C was 74 when he went to hospital after four days of abdominal pain and vomiting. He was admitted to a surgical ward for investigation, and staff inserted a drip to give him medication and fluids. Mr C spent five days in hospital before he died. During those five days, he suffered ongoing abdominal pain, nausea and vomiting, build-up of fluid on his lungs, breathlessness, chest pain and excessive sweating. 

The day after Mr C was admitted, a CT scan showed that he had cancer in his abdomen which had spread to his liver. Clinicians discussed the results with him two days later and further tests were planned. The next day, a different doctor saw Mr C, and this doctor explained that surgery was not an option because the cancer had spread, and that palliative care would be the best course of action.  

On the same morning, Mr C saw the palliative care nurse, who recognised that he was approaching the end of his life. She could see he was in a lot of distress, so to relieve his symptoms of breathlessness and bring him some comfort in his final hours, she recommended a chest drain. She also said that pain relief and other medication should be administered subcutaneously (injected under the skin to avoid unnecessary pain), which also would have made Mr C feel more comfortable. 

Later that day, Mr C’s drip came out and three junior doctors tried to reinsert it 14 times. Staff contacted the on-call anaesthetist to help, but they did not arrive until the next day. Over the course of that afternoon and evening, Mr C continued to suffer pain. When the anaesthetist arrived, they noted that Mr C was clearly nearing the end of his life. It took them 40 minutes to reinsert the drip, but shortly afterwards, Mr C died. The junior doctors and on-call anaesthetist failed to realise that the reason they struggled to insert the drip was because Mr C’s veins were shutting down as he was close to death.

What we found

It was clear from the medical records that the hospital knew Mr C was approaching the end of his life. Despite this, staff did not recognise that a drip was no longer an appropriate treatment option for someone as close to death as Mr C. Because of this, they failed to provide treatment to ease Mr C’s discomfort in his final hours.
Mr C was subjected to 14 unnecessary attempts to reinsert the drip, which would have caused him further pain and discomfort in his final hours. The junior doctors and anaesthetist should have acted on the advice of the palliative care nurse and provided him with the necessary medication subcutaneously to make him more comfortable. 

Because Mr C was close to death, he was unable to swallow properly, yet the hospital tried to administer pain relief orally. In addition, his pain was not properly monitored and staff recorded that the medication he was given was not working effectively. 

Mr C suffered unnecessarily at the end of his life. Mr C’s family witnessed this, which caused them additional anguish on top of their inevitable distress at his diagnosis.