Hospitals have been ordered to improve the way they record their decisions on whether or not to resuscitate patients amid fresh evidence of a failure to create a proper dialogue about those decisions with patients and relatives.
Since May, at least eight NHS trusts in England have been alerted to concerns around “do not resuscitate” orders – which are placed in the medical notes of thousands of patients each year – by the watchdog, the Care Quality Commission.
Hospitals in York, Basildon, Hastings, Boston, Exeter, Bristol and Shrewsbury have been told to adhere more rigorously to local policies about when doctors decide resuscitation would not benefit a patient suffering a cardiac arrest.
It has also emerged that University Hospitals Birmingham trust has been warned on the issue twice in two years. On the first occasion it was told by the independent health service ombudsman to apologise to a man whose wife died at one of its hospitals.
Keith Gordon, 64, a retired TV service engineer, handed the Guardian letters showing the Birmingham trust was told by the office of ombudsman Ann Abraham in November 2009 to apologise for failing to discuss a “do not resuscitate” (DNR) order with him after his wife, Paula, 61, died in Selly Oak hospital in March 2008.
The same trust was responsible for the Queen Elizabeth hospital in the city, where, in June this year, CQC inspectors found staff did not always involve patients or their relatives in DNR decisions.
Gordon contacted the Guardian after it published David Tracey’s allegations that medical staff at Addenbrooke’s hospital, Cambridge, unlawfully issued DNR orders without his wife Janet’s consent – cancelling the first after she objected and days later adding another to her medical notes without her consent or any discussion. Janet Tracey, who had cancer and was in hospital after suffering a broken neck in a road accident, died in March this year, 16 days after being admitted to hospital. Mr Tracey is taking the hospital’s management and the health secretary, Andrew Lansley, to judicial review alleging breaches of human rights over claimed failings in the issuing of DNR orders.
The hospital and the Department of Health are contesting the case, which is expected to be heard early next year.
Tracey wants the government to introduce a national policy on DNRs. At the moment trusts rely on national professional guidance and local policies.
There are similarities between the cases of Paula Gordon and Janet Tracey. Both had cancer, both had experience of caring professions and both were determined to enjoy life. Paula Gordon was admitted to hospital for an operation on a broken leg, the latest in a series of fractures, including one to the same leg, since she had been diagnosed with cancer in 2006 and told the disease had spread to her bones.
She had got used to living in a wheelchair, but hoped to walk again. Her husband said she had undergone surgery after some delay. “She was looking forward to coming home, where she was a busy PA.” The day before she died she had been talking to her boss at the charity Cerebral Palsy Midlands, although she had a slight cough and seemed a little breathless. Keith Gordon said: “I had been told to bring in her wheelchair.”
But, on the morning of her death, said Gordon, “I was called in because they said she had had a ‘bad night’. They said: ‘You need to come in and see her.’ I was worried and I was very surprised at her sudden deterioration. Later I obtained her medical notes and found she had a DNR tucked in. That was when I was really upset. There had been no mention to me of her being a DNR. Paula would have told me.”
He added: “Paula was such a special person, never whining, always joking. We never had children. We had been together 44 years. I was 17 , she was 18. I was in my final year at school and she just had her first job as secretary. My wife, despite being disabled, had a good quality of life. She went to work every day, enjoyed shopping and was looking forward to her niece’s wedding.”
Later in 2008 Gordon made a number of complaints about what he saw as failures in his wife’s treatment. He was dissatisfied with the replies and complained to the ombudsman in 2009. The ombudsman’s office decided there would be no full investigation into the trust’s actions as its explanations regarding Paula’s care and treatment “appeared to be reasonable” in all areas except one. In a letter to Keith Gordon on 17 November 2009, an assessor said that although the trust had “apologised for ‘an apparent lack of communication with you'”, there was “no evidence that a suitable discussion was held with you about your wife’s [DNR] order or your wife’s deteriorating condition”.
On 27 November 2009, Julie Moore, chief executive of the trust, wrote to Gordon, offering her “full and sincere apologies”, saying “it has become apparent the trust fell below the expected standard when communicating the reasoning for your wife’s order.
“I would like to reassure you that measures are being put in place to improve communication and therefore reduce the risk of such an incident recurring. Your complaint has been taken very seriously and I can reassure you that lessons will be learnt from your experience.”
But in June this year, the CQC reported on standards of dignity and care on two wards at the Queen Elizabeth hospital. It passed the hospital on “the essential standard” of treating people with dignity and respect and on involving them in discussions on their care and treatment. But it noted: “We reviewed six patients’ care and medical records which showed that people or their relatives had been involved in completing an assessment at the time they were admitted. We did not see any involvement beyond this in the care planning or recording. We saw that some people had been assessed as not being for resuscitation.
“This decision was recorded, and had been kept under review but in none of the cases could we see this had been discussed with the patient or their relative. The trust regularly audits ‘do not resuscitate’ decisions.
“The audits showed that on the wards visited, 70% and 87.5% of decisions did involve the person or their relative. This means that people or their relatives are not always involved in making these important decisions.”
The CQC said it had not known about the Selly Oak case, as there had been no mechanism for the ombudsman to relay her concerns to its inspectors at the time her office was investigating Keith Gordon’s complaint. Such a mechanism does exist now. In a statement, it added that the inspection reports on dignity and nutrition inspections “only describe a snapshot of findings on the day of the inspection and are by no means a full audit of individual patient care.”
Despite Queen Elizabeth hospital having met the essential standard, it, like other hospitals where mention was made of DNRs, was alerted to the commission’s concerns. In a statement, the CQC said: “Where inspectors saw blank or incomplete forms, they rightly highlighted as these as a problem to the hospital. For the purpose of these inspections some inspectors used the DNRs only as a way of checking that patient views were being sought. Where inspectors did see issues of concern, as with the DNRs, they immediately raised these concerns with hospital staff who then have a duty to act.
“Inspection teams have now followed up with all the trusts that were asked to make improvements. Where inspectors found other areas of concern, such as the inappropriate use of DNRs, the commission has brought these issues up with the trusts involved and sought action plans and evidence from them that the issues are being addressed. The CQC may also go back to inspect, to see that action has been taken.
“Even a completed form dose not necessarily demonstrate a policy is being followed. We needed to dig deeper to find out the full picture…. Our job is to regulate care providers and hold them to account, not to audit the care of individuals. Only those who work in hospitals and care homes can guarantee that people are receiving good care around the clock, day in and day out.”
The Birmingham trust told the Guardian it had fully revised its resuscitation policy in 2009, following the ombudsman’s ruling. “The CQC concluded that the Queen Elizabeth hospital, Birmingham, was meeting both of the essential standards of quality and safety.
“The trust believes that the appropriate discussions with families and patients regarding DNR are taking place. Patient and patient carers’ involvement in the decision ‘not to be resuscitated’ is an important aspect of the patient’s treatment plan.
“We are currently implementing an electronic patient record system, that will produce real-time data and timely alerts, prompting clinicians to have such conversations, should they not have taken place, and record in a timely manner.”
Gordon told the Guardian: “It would appear that doctors were still making secret DNR orders despite reassurances from the trust. Unless formal rules are made I think the doctors will continue to do exactly what they like, and as there is no formal check on their activities it will mostly go undetected. Doctors are human beings, they can make mistakes but they do not even explain their actions. The recent report on the Queen Elizabeth hospital shows lessons have not been learned within the trust.”
Ann Abraham, the health ombudsman, has twice this year highlighted her concerns over how DNR decisions were being taken. In a February report that accused the NHS of failing to meet even the most basic standards of care for older people, she reported a failure by medics to involve a woman’s husband in a do not resuscitate decision and, in another case, reported how a notice not to resuscitate was included in a patient’s medical records without the knowledge of his family.
And in October, in a report on the record of the NHS’s handling of complaints during 2009-10, Abraham highlighted a case in which the family of a man who died with cancer at the Gloucestershire Hospitals trust was given “limited information” about DNR orders.
Poor communication generally with the health service was the second most common reason for complaints, said her office, quoting the October report. “Poor communication during care or treatment can be compounded by a health body’s failure to respond sensitively, thoroughly or properly to complaints – resulting in an overall experience of the NHS that leaves a patient or their family feeling that they have not been listened to or that their individual needs have not been taken care of.”
A Department of Health spokesperson said: “Decisions on DNACPR must be clinically appropriate for the individual involved, weighing up the possible benefits of CPR against any burdens or risks associated with the treatment.
“Because clinical judgment is so important in these decisions, it’s our view that guidance provided by a responsible body of professional opinion, based on direct experience of the complexity and sensitivity of these circumstances, is more appropriate than the setting of national guidance by the department.”
