Make life less painful for the dying

SINGAPORE - For more than three years, Miss Charmaine Chia suffered backaches before she was diagnosed last May as having Stage 4 kidney cancer.

Unfortunately, no one in her family knew about palliative care from the start to help manage her pain.

The once very active 27-year-old suffered excruciating pain as the cancer spread and affected her nerves.

"She said it was like constantly having ants biting her yet not being able to do anything about it," her mother, Madam Vivien Tay, 59, recalled.

It was only in the final week before she died that Miss Chia received palliative care at home in Jalan Buloh Perindu, off East Coast Road - from home care nurses and doctors of the Assisi Hospice. A family friend had asked her parent to approach them for help.

"She was given morphine to relieve her pain and finally, when she died, she went peacefully and without being in agony," said Madam Tay.

Like Miss Chia's family, as many as two-thirds of Singaporeans do not know what hospices do or what palliative care is.

Singapore Hospice Council (SHC) chairman R.Akhileswaran said a Forbes survey on hospice services, commissioned by the SHC in 2010, showed that only about 40 per cent of the population know a little about hospices.

"When asked to give the details of what hospices offer, they equate the services to those of elder care," Dr Akhileswaran said.

He said more needs to be done to improve end-of-life care in Singapore.

Conference

To bring even medical professionals, like doctors, nurses and allied health workers, up to speed with the latest in palliative care and hospice services, SHC is holding its fifth Singapore Palliative Care Conference this weekend.

Themed A Tapestry of Care - Engaging Minds, Reaching Hearts, this year's conference will draw more than 550 participants.

"We have invited speakers from Harvard and Hong Kong universities to share their experiences," said DrAkhileswaran.

As in many societies, death is considered a taboo subject in Singapore, so many refused and are still not open to the idea of talking about death - especially their own - resulting in the lack of awareness to what is out there to die comfortably, Dr Akhileswaran said.

The Forbes survey also found that most of those who were not aware come from lower-income groups and "are the very people who need our services and whom we want to reach out to", he told The New Paper.

SHC's Community Outreach Programme has targeted not only the low-income, low-education groups but also all heartlanders.

Improve quality of life

"We must let them know that palliative care can help improve the quality of life of terminally-ill patients and their families, that palliative care provides relief from pain and other distressing symptoms," he said.

"This then offers a support system to help patients live as actively as possible until death." He said in a way, palliative care also helps preserve the family's last impression of the dying loved ones.

"With his or her pain well managed, the patient is very comfortable and the family do not see his or her suffering. This way the memories of the dying person remain good ones," he said.

SHC - the umbrella body of organisations that actively provide hospice and palliative care here - estimates that about 70 per cent of people with terminal illnesses are dying without hospice palliative care.

About 17,000 people die here each year, with one in four receiving palliative care in a hospice, nursing home or at home. More than half die in hospital.

But there are only only 33 palliative care specialists and 294 nurses trained in palliative care here.

As for Miss Chia, Dr Akhileswaran said: "In a way, it was fortunate that her final days were made comfortable. Had she not got help from Assisi Hospice, her parents' memories of her would not have been that of her life but of her suffering."

Madam Tay said her daughter had always been a compassionate person who put others before herself. "Two weeks before she was diagnosed, she quit her job at my insurance firm to concentrate on doing charity work. She even signed up for a course," she said.

Hoping that others can learn from their experience, her parents decided to share how she went through excruciating pain, barely coping with it and and finally receiving medical relief from home care nurses and doctors.

"If we had known about palliative care from day one when she was diagnosed, Charmaine would not have suffered as much as she did," Madam Tay said.

"Now even in her death she is reaching out to the community, telling terminally-ill patients that they do not have to suffer pain. "

"If we had known about palliative care from day one... Charmaine would not have suffered as much as she did," said Madam Vivien Tay, Miss Charmaine Chia's mother.

juditht@sph.com.sg


This article was first published in The New Paper.

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