In search of a ‘good death’ at home
DEATH. Not many people want to talk about it ahead of time, perhaps viewing a discussion as bringing bad luck.
But at a recent seminar in Bangkok, participants embraced an open debate about whether patients should have the right to die naturally, and discussed how to encourage relatives of terminally ill patients to be more accepting of “palliative care” so that patients could spend their last moments with families rather than in hospitals.
With advances in medical technology, relatives have tended to ask doctors to prolong the life of patients in the last stage of illness, saying they were willing to pay for the cost. But health experts at the forum suggested that increased palliative care would help lessen patients’ pain and suffering as well as reduce the financial burden on country’s healthcare system.
Chanchai Sitthipan, deputy dean at the Faculty of Medicine at Chulalongkorn University, said he agreed with increasing the role of palliative care, as it stressed the patient’s quality of life rather than how to keep dying people alive at any cost.
“Patients who are ageing or chronically ill should spend most of their remaining time at home or in society rather than in hospitals,” the doctor said.
“‘Dying well’ is a death that minimises the pain and suffering. If a disease is incurable, we must know how to stop [medical treatment]. If we prolong the treatment, it will be a wrong use of resources,” he said.
He said all doctors wanted to treat patients until they got well, but the current healthcare structure and resources could not afford that in the case of patients who had terminal illnesses.
Chanchai said due to the shortage of medical staff and equipment it would put a huge burden on the healthcare system if relatives of terminally ill patients insisted on prolonging the lives of patients by having them kept to hospital instead of returning them home.
Wanna Jarusomboon and the Phutthika for Buddhism and Society network have campaigned for the right to die in peace for almost 20 years. Medical professionals in Thailand were professionally trained on how to save patients’ lives but not how to meet the needs of terminally ill patients, Wanna said.
So when faced with dying patients, professionals don’t know how to help them die peacefully, she said.
“We saw death as an enemy that must be conquered, but my network has campaigned for a new way of thinking. We don’t see [death] as a medical failure but instead aim to help patients have a ‘good death’,” she said.
Her network has campaigned for palliative care with the aim of raising awareness in society that death was just another part of life. She has seen an increase in people’s interests in end-stage care over the past decade.
Some of the dying end-stage patients Wanna has met wanted to die at home, but nobody was able to care for them there, she said.
That suggests that society must change its attitude towards the dying, said Wanna. She favoured a “compassionate community” model that encouraged people to build networks to help the people around them to die a good death.
“We should turn death from a burden into an opportunity for volunteers to help. We should not rely solely on healthcare personnel, otherwise the country might face bankruptcy [over medical costs],” she added.
Clear policy
Thailand’s healthcare policy is now aimed at reducing illness and deaths but does not discuss how to ensure a good death, said Ukrit Milinthangkool, an adviser to the National Health Commission.
Moving toward a future with more palliative care was unavoidable, he said, and urged policymakers to issue clear policies and legal terms.
In fact, Ukrit said, it was the government’s duty to deal with this human rights issue by providing palliative care and related services for patients suffering terminal illness.
At the seminar, a question was raised about the definition of “the last home” to which end-stage patients would “return home [from hospital] and die”. Where is “the last home” in the context of a mobile society?
There was a consensus among the audience that they did not want the last days of their lives to be filled with loneliness and suffering and hooked up to intensive medical technology. On the contrary, for that final stage, most people preferred to be at peace, spending their final breaths in the embrace of their loved ones and then allowing their body to return to nature.
Three groups of Chulalongkorn students presented their research relevant to the topic of “Social mobility on cross-cultural deaths”, which studied the concepts of illness, dying and death prevalent among Myanmar people, Indians and Japanese people living in Thailand.
The first group conducted the research on Myanmar workers in Khao Yoi district, Phetchaburi province, and found that in Myanmar society, death was a taboo topic of discussion because the time had yet to come. But the Myanmar workers agreed that if they died they would want it to be in their motherland and surrounded by their families and friends.
The second group studied Japanese people living in Chiang Mai where around 2,000 long-stay Japanese reside. They found that Japanese society was wide open to discussing death, as they believed that nobody could avoid this reality of life.
The Japanese tended to be well-prepared for their deaths, the students learned. For example, they would write a letter to say “au revoir” before breathing their last. The Japanese were willing to die if they thought they could no longer make a contribution to the lives of other people.
Their last home could be anywhere, but they wanted to be surrounded by their families.
In studying the Indian people living in Thailand, the student researchers learned that they were not afraid of death, as it was one of their goals for living. “Death cannot be avoided. It’s just a transitional path to a new territory, so there is no need to grieve,” said the group in summing up what they learned from talking to staff members at Wat Witsanu Hindu Temple in Yannawa district, which is the centre of the Hindu community in Bangkok.
Indian people wish to die in the embrace of their family or at a hospital because it is a more convenient way to handle the funeral, the students said.