This is a serious blog about death, about what can go wrong in the dying process and how it can be put right. It arises out of an inquest where I represented a family member who found the medical and caring profession had misunderstood what was meant by a “duty of care” and tried to impose futile treatment on a dying elderly woman when she ought to have been allowed to die in peace and dignity.  I urge you to read on if you have the time because this is a case which shows what should not happen and, as a result of the decisions of the coroner to write formal letters under Rule 43 of the coroners rules, it might lead to changes in practice in this vital area of care.

Jean Robson was 87 years old, confused by dementia, and had had a substantial stroke as well as other co-morbidities.  She was confused, had a low quality of life and her life cycle was coming to the end.  She was treated in the Royal Devon and Exeter Hospital, but returned to a care home to die a peaceful death. She had expressed clear views, recorded at a time when she had capacity, that she did not want to be kept alive artificially when her time came, and her family were in agreement that her wishes should be respected. The highly impressive consultant, Anthony Nicholls, agreed a clear care plan with the family which included the absence of active treatment. A DNAR (Do Not Attempt Resuscitation) was signed, although (at the time) it was unclear if the document went beyond an instruction not to apply cardio-pulmonary resuscitation. Mrs Robson was returned to the care home and, 10 days later, developed pneumonia. The decision was made by the GP and her daughters not to give her antibiotics.

The care staff recognised that Mrs Robson was dying, but they also rightly recognised that they had a duty to provide care and support for her. So far, nothing appeared to be wrong. However the care plan in the home’s paperwork did not have anything like the clarity about the agreed course of not providing active treatment which had been agreed by David Nicholls and the family. When Mrs Robson showed signs of having breathing difficulties the care staff, including a registered nurse, mistook Mrs Robson’s aspiration for choking. They tried appropriate techniques to remove a blockage (which of course was not there) and then, because her breathing was still laboured, called for an ambulance. Mrs Robson’s daughter strongly objected to this but that did not prevent the ambulance being called because staff felt they had a “duty of care” and thus should do everything they could to keep Mrs Robson alive.

When the ambulance staff arrived there was a heated and somewhat unpleasant stand off between Mrs Robson’s daughter and the ambulance and care staff. She was attempting to prevent ambulance staff actively treating her mother and transferring her back to hospital. Mrs Robson’s daughter’s demanded that her mother be left to die in peace. Three things then happened in quick succession.  First, Mrs Robson died. This frail elderly lady may not have appreciated that her last breaths were taken in the middle of a heated argument, with her daughter guarding her bed to prevent active but futile treatment being administered to her by ambulance staff and care home nurses, but this is not the way any of us should recall the last moments of our parents’ life. Secondly, the ambulance staff were shown the DNAR documents which, they later accepted, justified the stance that the daughter took. Thirdly, following Mrs Robson’s death, the ambulance staff called the police, the room was declared a crime scene and Mrs Robson’s daughter was interviewed by the police for the suspected crime of assisting a suicide, because she had refused to permit the ambulance staff to administer treatment to her mother.  The police later accepted that no crime had been committed.

This whole episode was a horrendous experience for a relative who was only attempting to ensure that care professionals stuck to the care plan and gave her mother a peaceful death.

The coroner examined why this happened and made it clear in her ruling that this was not the right way to manage the dying process for a frail elderly lady who should have been left to die in peace.  The coroner is raising her concerns about the system failures in this case by writing letters under Rule 43 of the coroners rules to the hospital trust, the Care Quality Commission, and the Secretary of State for Health.

My impression is that what went wrong in this case was that care staff thought that a duty of care meant that they had a duty to administer treatment. It may have been possible for the ambulance staff to have artificially assisted Mrs Robson’s breathing so that she did not die at that precise moment.  However she would have been transferred to hospital, away from the care home, and died a medicalised death within a very short number of hours or days. That treatment would have been futile and would have resulted in precisely the death that Mrs Robson and her family did not want.  It might have been different if there had been a clear care plan at the care home which set this all out. In the absence of a clear plan staff were left with the (incorrect) default position of administering any form of treatment which could extend life.

There are difficult lessons emerging from this case for those preparing hospital discharge summaries (not prepared in this case by David Nicholls). The discharge summary must make the care plan clear and explain what treatment should and crucially should not be administered. There are also lessons for GPs and in particular for those operating care homes and their staff. There are also some important lessons for ambulance staff because there will be times when the default position of applying treatment in an “emergency” may not be in a patient’s best interests.

In one of the Charlotte Wyatt cases Mr Justice Hedley spoke of the importance of care staff ensuring that a patient has a good death.  There are times when the duty of care staff is to recognise the inevitability of death and to make the dying process as peaceful as possible. That means taking a sensitive and informed view as to what treatment is likely to be of benefit to a patient and what is likely to be futile or is not in accordance with a patient’s wishes. The facts of this case illustrate the point that the availability of medical treatment, which might lengthen a life by a short period for a person who is dying, does not necessarily mean that it is in the best interests of a dying patient to be provided with that medical treatment.

David Lock is a barrister and QC, No5 chambers. He is a board member of of Brook Sexual Health, a member of the BMA Ethics Committee, and a Honorary Professor at University of Birmingham.

Competing interests: I am a member of the Labour Party and Chair the West Midlands Branch of the Labour Finance and Industry Group. I am due to become a non-executive Board Member of Heart of England NHS Foundation Trust which is due to commence on 1 June 2013. My wife is a doctor who is employed by Worcestershire Partnership NHS Trust.