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Dying without dignity

Inadequate out-of-hours service

We also considered several cases where people who were dying had extremely poor experiences in getting support outside normal working hours. This can be because emergency medical services are often under pressure out of hours, and many specialist palliative care services are not able to provide round-the-clock availability.

Family watched loved one suffer because the palliative care team were not available to help control woman’s distressing symptoms in last hours of her life

What happened

Ms B was a 56-year-old woman with epilepsy who suffered a cardiac arrest at home. She was resuscitated and was admitted to the intensive care unit in hospital. Two days later, the clinical team decided that there was little more that could be done to actively treat Ms B because she had suffered severe brain damage when her heart stopped. Staff discussed this with Ms B’s son and her sister, Mrs A, and Ms B was treated using the Liverpool Care Pathway.

At around midnight the following day, Ms B’s care was transferred to a general ward. The information that the intensive care unit gave the general ward before the transfer is not documented. Also, the medication Ms B was given on the intensive care unit was not written up for use on the general ward, which meant Ms B did not get pain relief and sedation on the general ward until 3.30am. At this time, a nurse noted that Ms B was suffering from a fever and was having a seizure, and that the medication had little effect in controlling her symptoms of stiffness, twitching and gurgling.  

Five hours later, the ward sister asked the consultant to review Ms B because she had continued to be unsettled, despite being given additional pain relief and sedation overnight. The consultant prescribed additional sedation, which Ms B did not receive for nearly another two hours. Ms B’s symptoms remained the same, so the ward sister called the palliative care team for help. This team would only have been available from 9am, because its staff did not work overnight. At 11.45am, the palliative care team prescribed additional pain relief and sedation for Ms B, but she died shortly after.

Ms B’s sister and son remained at her bedside throughout this time and described how distressing it was to witness her rapid breathing and her chest bubbling while they waited for the palliative care team to relieve her symptoms.

What we found

The Trust’s decision to withdraw active treatment and place Ms B on an end-of-life care pathway was appropriate, and had been properly discussed with Ms B’s family. However, we said that Ms B needed to be treated in an environment with intensive nursing and appropriate medical staff who were available to prescribe and administer medication that was needed once the decision to withdraw active treatment was made. But this did not happen until the palliative care team was called, and there were unnecessary delays in giving Ms B pain relief and sedation on the general ward.  

We said that because national guidance discourages the transfer of patients between the hours of 10pm and 7am, this situation could have been avoided had Ms B not been transferred to the general ward overnight, when the palliative care team was not available. It could also have been avoided if the transferring intensive care team and the receiving ward team had carried out an appropriate handover. We agreed that Ms B’s son and her sister have been caused significant unnecessary distress at witnessing their loved one suffer because her symptoms were poorly controlled.