Wednesday, November 05, 2008

Helping the dying with living

Nov 5, 2008
Helping the dying with living
Instead of discussing euthanasia, the focus should be on helping terminally ill live with less pain, says expert
By Radha Basu, Senior Correspondent
Dr Shaw with Ms Joyce Neo Soh Hoon, 54, at St Joseph's Home and Hospice. Communicating with the dying can be taught and learnt, Dr Shaw believes. Often, what doctors need to do is simply to listen. -- ST PHOTO: JOYCE FANG
Dr Rosalie Shaw, 70, is executive director of the Asia Pacific Hospice Palliative Care Network, which helps develop services for the terminally ill in Asia. She is also a consultant at the National Cancer Centre and a visiting consultant at the KK Women's and Children's Hospital.

EUTHANASIA is the wrong conversation to have in a nation concerned with dying with dignity.

The focus instead should be on care - how to help the terminally ill live with less pain, says Dr Rosalie Shaw, a palliative care specialist who has helped hundreds here live out their last days over the past 16 years.

'Euthanasia is not about allowing the terminally ill to die with dignity and without distress,' asserts the Australian, who moved to Singapore from Perth in 1992 to help set up hospice care here. 'That is what palliative care does. Instead, it is an act with the intention to kill.'

As a consultant at the National Cancer Centre and visiting consultant at KK Women's and Children's Hospital, she tends to the terminally ill. As executive director of the Asia Pacific Hospice Palliative Care Network, she helps train doctors and nurses in end-of-life care all over Asia.

Weighing in on the euthanasia debate, which was sparked off here when Health Minister Khaw Boon Wan raised the issue last month in response to letters on euthanasia in the Chinese press, she says most terminally ill people do not really want to die.

Yet, once every few months, a patient asks her for help to end it all. 'When people ask to die, what they really mean is, 'Do you know how difficult this is?',' she says.

The plea is usually a cry for help. 'As their bodies break down, they hope that they will not linger long, but they don't expect doctors to do anything but listen.'

Her zeal in opposing euthanasia resonates with that of Catholic Archbishop Nicholas Chia who last weekend called on his flock, including Catholic doctors, to reject euthanasia.

Dr Shaw declines to discuss her religion, saying it is a 'private matter'. The grounds on which she opposes euthanasia are both professional and personal, she says. As a doctor taught to heal or cure, the 'intent to kill' is anathema.

Listening to hundreds of terminally ill people has taught her that the wish to die is not always due to physical pain. Very often, distress is made more acute by mental turmoil - caused by social isolation, depression, anxiety or sorrow.

Dr Shaw has distilled 16 years' worth of experience caring for the dying here into a book, Soft Sift In An Hourglass, now available in book stores.

It offers haunting portraits of how different people face the inevitable.

There is the unmarried violin player dying of bowel cancer, still in love with the married man she spent one weekend with 30 years earlier.

There is the frail housewife with two young children, angry at leaving the world before her time.

'The book is not meant to be didactic,' she says. 'It merely opens windows into issues we must all confront some day.'

While no two people face death exactly the same way, she has noticed broad similarities.

Such as how the dying often lose their appetite as their organs shut down, yet their families continue to force-feed them in the hope that they will recover.

And how some embrace religion before death, hoping for a miraculous recovery, but feel let down by God as death closes in on them anyway.

Often, those who have the hardest time accepting death are successful men in their 50s and 60s 'who seem surprised that wealth cannot buy health'.

In general, she has found that most people cling to life, rather than want to end it.

Studies bear this out. One by Melbourne University's palliative care professor David Kissane examined cases of seven cancer patients who had sought euthanasia when the practice was made legal for eight months between 1996 and 1997 in Australia's Northern Territory.

'It showed that some people asked for euthanasia not because death was imminent, but because they found life intolerable,' she says.

Singapore, she says, should not be taking a short cut and legalising this form of killing. 'A society that allows euthanasia devalues life,' she maintains.

Sanctioning it could pressure the elderly and terminally ill to want to end their lives. They may feel compelled to 'shuffle off' so they do not become burdens to society.

It could lead society down a slippery slope to involuntary euthanasia, where others make such choices for patients no longer able to decide for themselves. The Netherlands, where euthanasia has been legal since 1984, has reported many cases of involuntary euthanasia.

Dr Shaw warns that doctors may also be inclined to take the easy way out when they are unable to control difficult symptoms. And families may make decisions on behalf of patients who are unconscious or have dementia.

What Singapore should work on instead, she feels, is improving end-of-life care.

Currently, home hospice services reach nearly three in four cancer patients here. But for non-cancer patients, such care is limited. Only about one in four patients who died last year had subsidised hospice care.

The network of home care services for the elderly is also limited. Both need to be broadened.

Back home in Victoria, Dr Shaw's father had heart disease, diabetes, arthritis and prostate cancer. Yet he lived alone. His meals were brought to him and his home was cleaned by state-subsidised home care professionals.

'He loved the people who came. We need more of that here,' she says.

Keeping the elderly out of hospitals and nursing homes would not only make them happier, but could be cheaper too.

At the same time, doctors need to be better trained both in how to control symptoms such as pain, and how to help the gravely ill face death.

Often, young doctors are reluctant to discuss openly with patients how little time they have left.

'They interpret death from their own perspective,' she says. 'Because they are not ready, they feel their patients may not be.'

During a training course she conducted, a young doctor asked how he could avoid lying to his patients.

Dr Shaw's reply: 'Often, what is required is not for doctors to talk but to listen.'

Communicating with the dying is an art which can be taught and learnt, she believes.

Some doctors ramp up treatments during their patients' last days, even though it is futile, because they do not know any other way to help. 'They don't have the heart to explain how ineffective the treatment is likely to be.'

But explaining that, and stopping the treatment, may prove liberating.

Just last week, one of her patients was told by a cancer specialist that she had reached a stage where neither chemotherapy nor radiation was likely to work.

'It was like a cloud of confusion had lifted. Now she knew what to do - go home, eat just what she wanted and enjoy life,' said Dr Shaw.

Not all patients, however, like to discuss death or say their last goodbyes. Dr Shaw's own mother, who died of heart disease in 1991, was reticent till the end.

'When I asked her how she was feeling, she said she did not want to talk about it. But she was prepared and had sorted out all her drawers. We have to be sensitive to what patients want.'

Either way, listening is key.

When a patient in great pain asked for help to end her life some years ago, Dr Shaw asked why.

The woman revealed that she had never told her husband - or anyone else - that their child was actually fathered by another man.

'All I did was listen. All she did was cry,' Dr Shaw recalls. 'And the pain just melted away.'

The woman died three days later, unburdened and at peace.

No comments: