Real life ethics: autonomy versus duty of care

CONSIDER THE FOLLOWING CASE HISTORY

A 58-year-old lady of very independent mind wrote a living will in September 2005 after witnessing the death of her husband in an intensive care unit of the local hospital. She instructed any medical practitioners involved in the event of her suffering from a medical condition that would require resuscitation under no circumstances whatsoever to apply such resuscitation. This document was signed, dated, and witnessed by a legal executive and sealed in an envelope on which was written ‘DO NOT TAKE ME TO [the local hospital]’. A copy of this letter was given to her GP and further copies were kept on display in prominent positions in the house and in her bedroom.

In early 2007 the patient developed evidence of a malignant melanoma. However, rather than seek medical advice she kept the matter a secret until the lesion was observed by a family member. Medical advice was then reluctantly sought, but she declined any sort of excision or biopsy for several weeks until the lesion was very obvious and local lymphadenopathy had developed. Finally she agreed to cosmetic surgery and a biopsy although it was explained to her that by this time this could only be palliative. Over the next few weeks she had several consultations with her GP and the situation and her prognosis were discussed very openly on each occasion. She requested euthanasia from her GP more than once. This was refused but the GP promised to honour her wishes and provide the best possible palliative care.

She became weaker but declined all offers of help and support from her family, district nurses, and MacMillan nurses. However, one morning she collapsed and suffered an epileptic fit. Much against her will, her elderly but fit parents, aged 81 and 83 years, moved in to care for her. An outpatient CT scan and MRI scan confirmed cerebral as well as hepatic metastases. Several weeks elapsed during which the patient became weaker yet retained full mental capacity. The GP visited regularly and on each occasion was asked by the patient how long it was likely to be before she died. This was invariably answered by explaining that there was no way of knowing the exact details or timings. Repeated attempts were made to explain the possibility of further convulsions as a terminal event but the patient was extremely reluctant to consider the mode of her death. She simply reiterated her desire to die as soon as possible and her absolute wish not to go to the local hospital.

Things changed dramatically one afternoon, only 2 hours after a routine house call by the GP, when she developed a further epileptic fit. Even though afternoon surgery was about to start, the GP attended immediately. The patient was in the throes of a generalised tonic–clonic convulsion and her parents, not surprisingly, were in a state of acute distress. The doctor administered 10 mg of rectal diazepam, but this failed to arrest the convulsion. Due to her express wishes, which had been made so abundantly clear, an ambulance was not called initially. However, after 30 minutes and with no sign of the convulsion ceasing, an emergency call was put in. Because of the remote location of the patient's home and certain staffing issues among other professionals such as district nursing and palliative care colleagues it was not possible to obtain further supplies of diazepam until the ambulance arrived after a long delay. This meant that the patient had been in status epilepticus for more than 2 hours by the time a further 10 mg of diazepam was given intravenously and an oxygen mask was applied by the paramedics. The patient became sedated although low level fitting continued.

Local protocol dictated that any 999 call should be taken to the nearest hospital, in this case the same hospital that the patient had so expressly stated she would not be taken to. A further 90 minutes was taken in telephone calls to managers in local hospitals, the ambulance service, district nursing service, palliative care professionals and others before permission was eventually granted for the patient to be taken to a hospital approximately 25 miles away, normally considered ‘out of area’. She spent that night in the A&E department before being transferred to a ward later the next day. She died a week later without regaining consciousness.

DISCUSSION

Cases like this are clearly rare, but the new Mental Capacity Act demands that we respect our patient's autonomy (particularly in respect to advanced decisions) and act in their best interests in the case of incapacity.

The patient had made it clear in written form that she did not want to be resuscitated nor to be admitted to the local hospital. However, she had been reluctant to discuss her mode of death. For the GP to act in the patient's best interests2 the primary concern was to stop the convulsions, even if hospital admission was required. How many GPs would have been happy to leave a patient fitting at home in the presence of her elderly distressed parents? Is there a point at which the duty of care to a patient who is unconscious is superseded by the duty of care to others, in this case the elderly parents? Should there be a ‘get-out clause’ in advanced decisions for exceptional cases where distress to others may outweigh the need to respect the patient's wishes?

How does a doctor balance duty of care to one patient who will die very soon against the duty of care to other patients? In this case an entire afternoon was taken with this scenario and the doctor's evening surgery had to be taken by another doctor. The GP in this case is usually single handed. If the other doctor had not been available, what would have happened to all the other patients seeking medical attention that afternoon? Is it right for them to suffer while the GP is involved in one particularly complicated case?

The move towards patient autonomy and against ‘doctor knows best’ is undoubtedly a positive one. The Mental Capacity Act 2005 clarifies many of the points that were already present under common law. In interpreting the Act, we must be aware that in not all cases will it be clear that respecting patients' decisions and acting in their best interests are the same thing, and in this case, patient autonomy is the primary concern. However, we should also remember that as doctors we are a rationed resource which needs to be shared with all of our patients.