Finding dignity in death

Sixty-year-old Sukjai* lies on a raised hospital bed, her stomach bloated as if she was several months pregnant.

“When will I recover?” are her first words, spoken in a barely audible voice, as a team of medical staff from Ramathibodi Hospital arrives at her Ramkhamhaeng Road home at 10 o’clock sharp.

One of the doctors asks her to identify where the pain is, but Ms Sukjai is silent, gives a sigh, and turns her head the other way. A doctor inserts into her nose a small oxygen tube connected to two green tanks placed beside the bed.

A piece of paper in a gold frame — what was meant to be a good-luck charm — hangs next to the top right side of the front door.

“May members of this house live in peace, free from illness. Love, Mother Sukjai,” the brown, handwritten letters read.

Ms Sukjai’s illness was unexpected: she was rushed to a hospital emergency room after complaining of stomach pain in late May, and was diagnosed last month at Ramathibodi Hospital with end-stage appendix cancer. Doctors say she now has only one or two months left.

She returned home on June 21 after spending two weeks at the hospital. Three days earlier, the Supreme Administrative Court ruled that Thais have the right to die naturally, and they can refuse public health services designed merely to prolong the end stages of terminal illness.

Outside, three doctors talk to Ms Sukjai’s son and daughter about their mother’s imminent death. They have to make a decision they had not thought about before: whether or not to put their mother on life support following respiratory failure.

But not all Thais are prepared to talk about end-of-life plans, and not doing so, doctors say, can mean tough decisions have to be made when time is running out.

LET’S NOT TALK ABOUT IT

“We see it every single day; family members do not talk about whether they want the patient to die naturally or be connected to life support,” said Amphon Jindawatthana, secretary-general of the National Health Commission Office (NHCO). “Meanwhile, doctors are taught to do all they can to help a patient survive, ultimately intervening in what might have been a natural death.”

For the eight years since its inception, the NHCO has been the core government organisation promoting the idea of “living wills” — advanced directives that explain the type of medical treatment a patient wants and does not want.

They operate the Thai Living Wills website, which provides information on people’s rights in the terminal stages of illness, how to write a living will and what palliative care is.

Despite their efforts to educate the public, living wills remain largely overlooked by the vast majority of Thais who often refrain from discussing end-of-life decisions.

While death is regarded in Buddhism as a reminder of life’s impermanence, talking about the issue is considered inauspicious, and unless you’re a relative of a terminally ill patient, discussing someone’s end of life is seen as hastening their death.

For Dr Amphon, the fact a growing number of Thais are living in cities will lead to increasingly tough decisions in times of crisis, due in part to a lack of communication within families.

Those living in rural areas, he said, prefer to spend their last moments before death at home, and not only for financial reasons.

“They just have a better understanding of life and death,” Dr Amphon said.

The issue is increasingly important when taking into account the ageing society: the Foundation of Thai Gerontology Research and Development Institute projects that in 2018 the number of elderly people aged 60 or above will outnumber children under 15 for the first time, with the number of older people comprising one-fifth of the population. 

Jirattakarn Pongpakatien, deputy director of Mahidol University’s Contemplative Education Centre, said death often affects the living more than the dying. “With families drifting more apart, children feel as if they haven’t been able to take care of their parents and be a good daughter/son,” she said. “As a result, despite the existence of a patient’s living will, family members feel the need to urge the doctor to prolong their parent’s life.”

A LIVING WILL

The right to die naturally is included in Section 12 of the 2007 National Health Act, which states that a person shall have the right to make a living will in writing to refuse any public health service which merely prolongs their terminal stage of life.

From the start, the legislation gained opposition from some members of the Medical Council of Thailand, who believed it was against doctors’ ethics. After Section 12 was enacted as a ministerial regulation in 2011, three doctors filed a complaint to the Administrative Court against then prime minister Yingluck Shinawatra and public health minister Wittaya Buranasiri for passing it.

Nearly four years later, on June 18, the Supreme Administrative Court found the two not guilty and ruled that the regulation was valid.

“The court’s decision confirms that what we did was right,” Dr Amphon said. “Our goal is not for a lot of people to write living wills, but we hope that people will think more about this issue, and to develop the quality of public health services [for the terminally ill].”

But even without Section 12, Thais already have the basic right to manage their lives and treatment. A patient with an appendix-related disease, for instance, has the right to be treated with traditional medicine at home, despite a doctor’s suggestion to undergo surgery.

“The regulation is just a reminder and approval that yes, you do have these rights, and you’d better use them,” said Sompholn Trakulroong, an expert attached to the Constitutional Court.

The law also provides protection to public health personnel, as any act they undertake in compliance with a living will shall not be considered an offence. They will also be absolved of all liability and responsibility for the consequences of following a living will.

“If there was no such clause, doctors could still be sued, despite the existence of an advanced directive,” Mr Sompholn said.

A DOCTOR’S DUTY

Thai doctors were traditionally trained to do
everything they could to prolong a patient’s life. But with the emergence of palliative care, medical personnel now have a better understanding of terminal illness.

“Society has shifted from paternalistic health care where doctors usually make the decision to a situation where both sides meet and discuss options,” said Kittiphon Nagaviroj, an instructor at Ramathibodi Hospital’s Department of Family Medicine. “It’s not about whether or not one has more authority over the other.”

While written documents make it clear what the patient wants or does not want to include in his or her medical treatment, Dr Kittiphon said communication between doctors, patients and their family members is more important.

But in some cases, a living will is necessary to avoid a misunderstanding, which could lead to a potentially wrong decision during a patient’s critical stage.

“Some people refuse to sign a refusal form [acknowledging that treatment was offered and they refused] because it’s like letting the doctor kill their parents,” Dr Kittiphon said. “During a critical stage, a quick decision needs to be made, and the anxiety makes it hard for non-medical personnel to process the information. So isn’t it better to discuss it earlier on?”

Another issue that doctors have experienced is that Thais are reluctant to sign their names on living wills, so they are instead advised to come up with an advanced care plan. This is less technical but covers broader issues such as saying, “I want to die peacefully without suffering, and to not be a burden to anyone else.”

The benefit of a living will is therefore twofold: patients can determine their own future, and family members are relieved of the burden of responsibility in decision-making.

Phornlert Chatrkaw, an assistant professor at Chulalongkorn University’s Faculty of Medicine, said that while developed countries have a higher likelihood of removing life support for the terminally ill, countries in Africa, Southern Europe and Southeast Asia still cling to the belief that a “miracle” might occur, despite the limitations of technology.

“As doctors, we are taught to help people recover from diseases, but if it’s untreatable, we shift our focus to helping them co-exist with their illness, and how they can live their final moments of their lives without pain and suffering,” he said. “It’s not our duty to prevent people from dying, which is defying the law of nature.”

THE BEST WAY TO DIE

When Ms Sukjai was discharged from Ramathibodi Hospital, she was transferred to a private nursing home on June 17, which would have cost about 20,000 baht a month.

She stayed for only five days before she told her children she wanted to go home.

The family initially hired a caregiver to look after Ms Sukjai, but her daughter quit her job as a nursery school teacher two weeks ago, and is now the main caregiver.

The day Spectrum visited Ms Sukjai’s home, a team from Ramathibodi Hospital was there to assess her condition and offer counselling and support to the family.

“The main caregiver still thinks that the only option once her mother arrives at the emergency room is to perform cardiopulmonary resuscitation,” scientist Prapassorn Chanpromma tells her teammates. “So I’ll get her outside to discuss options with her brother.”

Ms Prapassorn said it was often the case that the decision-makers — who are mostly men — are not the main caregivers.

“And if he is an army general, for instance, who do you think the doctor will listen to?”

The team of doctors and social workers ask disconcerting questions: Has Ms Sukjai ever talked about the meaning of life? Who else in the family has problems coping with her illness? How is the situation at home without the hired caregiver?

Sirikanya Pattanaprateep, who is undergoing residency training at Ramathibodi Hospital’s Department of Family Medicine, explained that one day Ms Sukjai’s lungs will be flooded with fluid and she would be unable to breathe on her own. If CPR fails, doctors will insert a one-inch tube through the mouth into the windpipe, a treatment Ms Sukjai’s son Preecha* was previously unaware of.

The other options are inserting a tube through the neck into the windpipe to help with breathing, or the use of morphine to alleviate pain.

Mr Preecha, a 41-year-old machinery technician, had initially thought of saying yes to CPR, which is usually performed until the heart fails. But Monthon Sriyoscharti, a family doctor at Krabi’s Aoluk Hospital, suggested he explore other options as well.

“No matter how many times you perform a CPR on someone with an incurable cancer, the disease is still there, and so some people prefer to use drugs,” he said.

Dr Monthon takes out his Samsung smartphone and plays Mr Preecha a YouTube clip called “The last eight hours of life”, which shows how a man coped with his last stage of life and was able to die peacefully.

Mr Preecha didn’t want his mother to be left in a traumatic and invasive situation.

“If she had to suffer, I would probably not try to prolong her death,” he said.

A LONG-TERM APPROACH

Two years after its opening, Ramathibodi Hospital’s Palliative Care Clinic now cares for between five and 10 patients a day, and is among the few clinics in Thailand specialising in helping terminal patients and their relatives to prepare for end-of-life health care.

The clinic operates every Tuesday afternoon, so patients visiting the cancer clinic in the morning can receive consultation on palliative care, which is a holistic approach encompassing physical suffering, self-care, emotional reactions, personal adaptation to losses and spirituality.

“Families may feel reluctant to get together to talk, so when the time comes to make a decision, we act as the ‘middleman’ in bringing the two sides together amid the feeling of uneasiness,” said Dr Kittiphon, who is also a family doctor at the clinic.

Doctors discuss with patients and their families about future plans in a worst-case scenario in which the patient does not respond to treatment, and in some cases they ask for the patient to appoint a healthcare proxy to act on their behalf when necessary.

Doctors visit the patients’ houses if they are too sick to visit the clinic themselves, or if they are asked to return home when there are not enough beds at the hospital, Dr Kittiphon said. But often it’s the relatives of the sick who pay a visit, due to the “caregiver burnout” effect.

Dr Kittiphon spoke of a case where an elderly woman had to take care of her terminally ill husband, who was on life support at home. At one point, she told the doctor that it might be better if, one morning, she and her husband “did not wake up from sleep”.

Relatives meet with a psychologist, who assesses their depression, anxiety and personal strengths.

Despite the emergence of palliative care services in recent years, research says the provision of such services in Thailand remains isolated, with a lack of fully trained personnel.

Specialist care is confined to medical school hospitals and mainly involves the provision of hospital and home palliative care teams, according to Temsak Phungrassami, Rojanasak Thongkhamcharoen and Narumol Atthakul in “Palliative Care Personnel and Services: A national survey in Thailand 2012”, which was published in the Journal of Palliative Care in 2013.

“The situation is urgent, and it demands serious national attention,” the paper concluded.

MOVING ON

Ms Sukjai’s husband died when their four children were very young, leaving her a single mother responsible for the livelihood of the family. Due to financial problems, the youngest son was sent to live with relatives on his father’s side, and believes they are his biological parents.

Before being admitted to Ramathibodi Hospital, Ms Sukjai fulfilled a final wish — to tell her son that she is his real mother.

“They hugged, and he [my brother] has been visiting her ever since. I’m so happy that we are all together again,” Mr Preecha said in tears. “This is the only thing that she wants, so I told her not to worry about anything any more.”

Ms Sukjai knows the type of illness she is facing, but has no clue about the severity, and hopes to one day walk again.

“Mum used to say that she’s not afraid of death. But deep down inside, I think she is,” Mr Preecha said. “I think she’s afraid of suffering.”

Two hours pass, and it is time for the medical team to leave. The family members had made a decision: in the case of a respiratory failure, they will call an ambulance. If CPR does not restore her breathing, they will not put her on life support, and allow the use of morphine instead.

“I told my older brother that by doing this, we’re not being mean,” Mr Preecha said. “We just don’t want our mum to suffer.” n

The court ruling

In 2011, three doctors filed a complaint to the Administrative Court accusing the then prime minister and public health minister of enacting Section 12 of the National Health Act, which they claimed was unconstitutional.

“The three plaintiffs who have received training at a medical school have never been taught the definition of the term ‘end-of-life treatment’ … and argue that the term used in the ministerial regulation is considered ‘mercy killing’ or ‘euthanasia',” said a court document.

The plaintiffs considered the regulation unethical, and alleged it was passed without a public hearing. They considered the right to die not as a right but a freedom, and a burden towards medical professionals.

“The legislation also raises the authority of patients over medical professionals,” said the plaintiffs.

On June 18, the Supreme Administrative Court ruled the two defendants not guilty, and that the legislation was constitutional. The court ruled that a living will according to the legislation is in line with the Thai constitution regarding the right to self-determination. It found that the clause does not signify a right to die, but rather a right to refuse treatment during the end of life.

It is not the equivalent of abandoning a patient because medical professionals are still required to assist the patient according to palliative care principles. n