BMJ  2004;328:1445 (12 June), doi:10.1136/bmj.328.7453.1445

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PERSONAL VIEW

A time to live or a time to die?

I lost my husband a year ago—but thanks to the medical profession I can visit him daily. With his sharp analytical mind he had, despite total blindness, won a state scholarship to university. He was very independent, regularly travelling alone to work and around a busy provincial city. The illness of a relative meant that we, his family, were fully aware of his abhorrence of the loss of mental faculty.

After his massive brain haemorrhage (as described by his admitting consultant) Michael developed pneumonia, and it was agreed he should not be treated actively. However, his consultant said that he would be more comfortable with antibiotics. How do doctors know what a patient in that condition is suffering? I then found a house officer giving another injection. When questioned he told me, with the naivety of the young, that he was curing my husband. After Michael had recovered from the pneumonia the medical team decided to feed him through a nasogastric tube, which he repeatedly removed.

It should be mandatory for aspiring doctors to work in a nursing home

After some three weeks the time came for consideration of feeding through a percutaneous endoscopic gastrostomy (PEG) tube. Michael, we all agreed, was in the group for whom a PEG tube was of doubtful benefit. We—his wife and three children (all with postgraduate qualifications)— had previously obtained the 1997 Lancet guidelines on PEG feeding and were unanimous that he should be allowed to die with dignity. We considered that the effort Michael had to put into living and the frustration blindness caused him meant he already suffered a major disability; he was, as a friend put it, "fiercely independent and impatient with himself"; he could get depressed; and we knew his views.

I tried to get his GP involved, but apparently medical etiquette did not permit this. Why? Here was the one doctor who knew him holistically and not as a near cadaver. Three consultants (all working in the same hospital) decided that a PEG tube should be inserted. We lesser beings were informed of their decision by a registrar and house officer and were given to understand there was no one to whom we could appeal. We were unable to meet the consultants to discuss their reasoning. The PEG tube was inserted without my consent and against our wishes. A house officer claimed that Michael had consented, but in view of his subsequently proved mental ability he clearly lacked capacity.

He was later transferred to a rehabilitation unit at six hours' notice, PEG tube intact. One of the three people making the decision became his new consultant, who I saw at the first opportunity as I was adamant that the PEG tube should be not be used again. I was somewhat exasperated when told that the tube was left in "in case there were swallowing difficulties or a blip." However, after some discussion his new consultant said, "We made a mistake; we didn't understand enough about blindness." I respect his honesty.

Michael has spent most of the past year in hospital. As he has put it, "The constraints I'm under mean that life is not worth living." In a recent lucid moment he told me, "I am going to a nursing home to die." It would be deemed cruel to leave an animal in his current state.

As a citizen I cannot but be aware of the cost of his medical treatment. Despite the dedicated skill of many professionals, the prime beneficiary has to be the pharmaceutical industry.

My worst forebodings, expressed to his original consultant, have been fulfilled. Michael is everything he least wished to be. PEG feeding must be about adding life to years, not years to life. The whole person must be considered. Seeing a patient make a small physiological improvement may cause the medical team elation, but it does not give quality of life. The profession must recognise that it does not have a monopoly of either wisdom or knowledge. A patient must be permitted to die and not be condemned to live just because life can be prolonged. Some might say that Michael's human rights have been violated. He has to live with the consequences of this decision; those who made it do not. A year on I wonder what more he has to endure.

It should be mandatory for aspiring doctors to work in a nursing home, to remind them of the possible long term consequences of their lifesaving actions. We, the public, need to remember that hospital dramas on television, with their nubile nurses and minimal number of suffering senior citizens, are not reality. Doctors need to be protected from litigious patients and their families, but equally they must be open, honest, and realistic, avoiding cosy paternalistic terms such as "popping in a tube" or "blip." There must be a frank, honest dialogue with the public at large, so that society as a whole learns to have realistic expectations and to accept that death is part of life. The use of living wills must be fully debated and encouraged.

A very sick child once said to me, "The trouble with the health service is that it means people spend a longer time dying." Perhaps she was right. There is a time to live and a time to die.

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