Home is where the heart finds rest: Dying at home can be helpful for carer and patient, says Barbara Rowlands (CORRECTED)

CORRECTION (PUBLISHED 28 APRIL 1993) APPENDED TO THIS ARTICLE

When we die, most of us are buried or cremated by funeral directors. But must our bodies be handed over to strangers? How do you organise your own funeral? Can you be buried in the back garden, and does a religious minister have to be present? More and more people, distressed by impersonal partings - not to mention the pounds 1,000-plus cost - would like to know. Just as the natural childbirth movement loosened the professionals' grip on our entry to the world, a growing movement is doing the same for our passing. If you pray for a personalised road to the beyond, read on . . .

WHEN Andy Melnyk became seriously ill with a brain tumour, his wife, Claudia, decided he would spend his last months at home surrounded by family and friends. His last hospital spell was in April 1988 and he died the following June.

'The nurses just didn't understand what was happening to him,' says 47-year-old Mrs Melnyk. 'They saw him as just a difficult man who kept on trying to get dressed and go home. Whereas he was just demented and disoriented.'

Trips to the hospital were usually interrupted by the arrival of a doctor and subsequent evacuation of visitors to the corridor, or by the ringing of a rarely answered phone. Anna, 14, and Jethro, 11, disliked visiting their father. 'I found it difficult to see him just lying there with people ignoring him,' says Mrs Melnyk. 'I knew he didn't have very long and I thought, 'I'm not going to let him go back in there. I'm going to keep him at home'.'

Everyone has the legal right to die at home, and a dying person can discharge him or herself from hospital against doctors' orders. If the dying person is unable to make the decision, the next-of-kin can do so.

Yet only two out of 10 people die at home. Some 70 per cent die in hospitals (in 1960 it was less than 50 per cent) and 10 per cent in hospices. Sometimes there are good medical reasons why a dying person should be in hospital; at other times it is because carers lose their nerve.

Mrs Melnyk had the full support of Macmillan nurses, who provide help with patients dying of cancer. A year before her husband died, she had been allocated a nurse who arranged for a nursing team to come in morning and night.

Carers can call on the free services of both Macmillan and Marie Curie nurses up to seven nights a week if their patients are dying of cancer. But three out of four people die from other causes and in these cases relatives have to rely on district nurses and the kindness of neighbours and friends.

The Buddhist Hospice Trust arranges for its volunteers to sit with and befriend the dying, whatever their religion; other groups that deal with particular illnesses, such as Aids or Alzheimer's disease, offer practical and emotional support.

Nicholas Albery of the Natural Death Centre would like to see midwives for the dying - to take care of the emotional, physical and spiritual needs of the dying and their relatives - and a redirection of resources from hospitals to the home.

He believes people should be trained to deal with death and dying. A one-day course in practical care for the dying should be open to the public as well as the nursing profession. Like birth at home, death at home can be immensely rewarding for everyone. It makes those dying feel wanted and, by giving them control over how they die, makes the end more graceful and dignified.

'Several dying people have said they felt going to hospital was like being put on a skip,' says Mr Albery. 'If professionals visit your home, they are guests. You're not just another item on the assembly line.'

Then there is the physical and emotional closeness. As a parent celebrates a baby's first smile or a toddler's first steps, so spouses can experience the last time their loved-one could walk, stand, speak or smile.

'I would have missed all that if he had been in hospital,' says Mrs Melnyk, 'I was able to share absolutely everything. Right up to the last moment, he knew I was there. It was beautiful to look after him, to wash his mouth out - he had thrush - to clean his eyes and feed him. I didn't find caring for his bodily functions difficult, it kept us close. At the end he couldn't speak, but his eyes were still there.

'There was one time when he was totally immobile for about three days and no one thought he would move again. Then suddenly he sat up and put his hand out and stroked my hair. It was an incredible moment.' Mrs Melnyk achieved a physical closeness with her husband that would have been impossible in hospital. She slept with him at night and massaged his body when it grew cold.

Life went on around Mr Melnyk. Friends dropped in to say goodbye - he was able to smile at all of them - and the children went to school. 'It didn't disrupt the household very much. It just seemed natural and much easier than I had thought,' says Mrs Melnyk. 'If you have the right support, if you have the nursing team, you can manage very well.'

When Andy Melnyk died at 4am, his wife straightened out his body and made him 'look nice' for the children. She called in the doctor at 8am. 'The hours after his death were totally private. We could each say goodbye in our own time, our own way. The children hugged him and kissed him and went back to bed. There was no one to pull curtains around his bed and send his body to the mortuary. We all look back on his final illness as a positive time of immense tenderness.'

CORRECTION

We would like to clarify some misleading information about the role of Macmillan and Marie Curie nurses that appeared in an article about dying at home on 15 April. Macmillan nurses do not themselves provide basic nursing care for cancer patients at home. They are specialist advisers who arrange practical help and nursing care, and who offer emotional support. Marie Curie nurses do provide practical nursing care overnight and throughout the day in the patient's home.