End of life wishes of terminally ill 'ignored'

1 June 2012
Terminally ill patients are suffering 'distressing' deaths because hospitals rush to try and resuscitate them, frequently against their wishes, an influential watchdog says.

The report, by the National Confidential Enquiry into Patient Outcome and Death (NCEPOD), found that in one two-week period every one of 52 patients who explicitly stated that they wanted to be allowed to die were given cardiopulmonary resuscitation (CPR). Other terminally ill patients were also given CPR even though the study said it was not in their best interests. The watchdog concluded that CPR had wrongly become the default setting in hospitals, rather than patients being assessed on a case-by-case basis.

The report, 'Time to Intervene?', looked at 526 patients who suffered a cardiac arrest and underwent a resuscitation attempt in NHS hospitals in England and Wales over a two-week period in 2010. The average age of the patients was 77. In one-third of these cases, poor care was judged to have contributed to the patient’s death.

Nine out of ten patients had never been asked about their wishes should they suffer a cardiac arrest, despite being considered at high risk. Details of whether or not to administer CPR was recorded in the notes of only 122 patients. In seven cases, people with terminal illness were given CPR after a cardiac arrest, even though clinicians believed they would not recover from their illness and should be made comfortable in their last days.

The report said performing CPR in inappropriate cases could result in a distressing and undignified death.  

Simon Chapman, Director of Policy and Parliamentary Affairs for Dying Matters and the National Council for Palliative Care, said the report revealed an 'unacceptable failure' in standards of care. 

“Decisions about resuscitation are enormously important and it's essential that people’s wishes are respected. This report shows that 52 people had their wishes disregarded, and we should see that as an unacceptable failure.

"Discussions about people’s end of life care should be taking place much earlier than at present, so that their wishes can be known and understood by their families and health team in whatever setting they are, rather than wait until people arrive in hospital in a crisis situation. Hospitals need to make sure that they have systems in place to ensure that people’s decisions about whether they want resuscitation are communicated to all staff."

"This is not just a matter of good practice, but an essential part of hospital governance. The Mental Capacity Act 2005 sets out the legal framework covering resuscitation, and hospitals need to make sure that they have training in place for their staff as well as  systems in place to record people’s wishes and comply with the Act.”

Author of the study and NCEPOD lead clinical co-ordinator Dr George Findlay said that the problem was exacerbated by senior doctors failing to support junior doctors.

"The recognition of acute illness, response to it and escalation of concerns to consultants when patients are deteriorating is not happening consistently across hospitals," he said.

"Senior doctors must be involved in the care-planning process for acutely ill patients at an earlier stage and support junior doctors to recognise the warning signs when a patient is deteriorating."

NCEPOD chairman Bertie Leigh said that patients were frequently not consulted about what they wanted: He said: "In nearly half of all the cases we reviewed there was a failure to formulate an appropriate care plan on admission and a failure, often over several days, to find out what the patient's wishes were, and to carry them out.

"We are at a crossroads. All of us need to recognise and accept the limits of what can be achieved in medicine to the benefit of the patient and a ceiling of treatment described and agreed with the patient wherever possible. "Doctors should only administer CPR where a patient has consented, or if the doctor is satisfied it is in the patient's best interests."

More 

Download the full report: Time to Intervene? 

Have you or someone you know been affected by this? Share your views

Download NCPC's booklet: Planning for Your Future Care 

Dying Matters powerful film, 'I Didn't Want That', highlights the importance of expressing end of life care wishes: watch it

Download: Advance Decisions to Refuse Treatment (ADRT) proforma 

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