Seeing dad suffer, made doctor sign the AMD himself
IMH's Prof Chong says signing of the directive helps doctors make the right decisions when it comes to the crunch
In response to a question in Parliament by Workers' Party chief Low Thia Kiang, Health Minister Gan Kim Yong said in a written reply thatfrom the inception of the Advance Medical Directive (AMD) in 1997 until last year, 24,682 Singaporeans had made an AMD. During this period, 10 AMDs were put into effect.
The pain of watching his father slowly dying of chronic respiratory disease in the intensive care unit 21 years ago still lingers for Professor Chong Siow Ann, 54.
He had to watch his once-independent father:
l Be supported by a ventilator with arms restrained
l Be fed through a tube through his nostrils, with a catheter draining urine from his bladder
l Have a breathing tube attached down his windpipe, which prevented him from talking
As the elder Mr Chong's kidneys failed and multiple internal bleeding occurred, doctors fought to keep him alive with drugs and transfused packs of blood products.
Prof Chong, now vice-chairman of the Institute of Mental Health's medical board (research), told The New Paper: "It was bleak, everything in his body was already shutting down."
And after a few days of struggle, the decision was made by the Chong family to stop the treatment. The elder Mr Chong died later in the day.
"It was not a tough decision in some way. Maybe we should have stopped a bit earlier because he was suffering and his situation was utterly hopeless," said Prof Chong.
"The doctors could have continued to ventilate him, but it would have caused complications like bursting his lungs and further suffering. He would still have died in any case."
This incident, along with his work experiences, was a strong influence in Prof Chong's decision to sign the AMD, which tells doctors not to apply life-sustaining treatment in the case of terminal illness.
He said: "It is not just how the patient might feel, but the impact on the rest of the family as well.
"If I am in that situation one day, I hope I would be brave enough to want to stop everything and spare further pain to my family."
The AMD had not been introduced at the time of his father's death, but Prof Chong noted that it could have helped in making the decision to let go earlier and would have assisted the doctors in being more certain of whether or not to extend his life.
Prof Chong made an AMD more than a decade ago, after hearing about it on the job.
According to Mr Gan, 10 AMDs were effected between 1997 to 2015.
A cumulative total of 24,682 Singaporeans have signed the AMD as of last year, and almost half (12,114) of these AMDs were made between 2010 to 2015.
National University of Singapore sociologist Paulin Straughan said that these low figures could be due to lack of awareness about the AMD, fear of the "unknown and unpredictable" in death, and superstition in talking about death.
"Most of us don't want to think of death and dying when we are young and able, so we just ignore discourse on AMD in the belief that when the time comes, should the need arise, we can decide then," she said.
Nanyang Technological University sociologist Kwok Kian Woon also pointed out that most people do not ordinarily think about death or dying, and to increase the number of people signing the AMD, public education about end-of-life issues should be carried out.
He said: "Citizens need to understand various end-of-life scenarios so that they can make an informed decision."
For Prof Chong, the AMD is also important from a medical standpoint.
He said that AMDs would aid in decision making for doctors by making clear the patients' own wish and intent, and also make any decision on prolonging a patient's life less emotional and less dependable on the wishes and interpretation of others.
"As doctors, it is very difficult to make the decision to withhold any kind of life sustaining means to the patients, even if you know the patient's outlook is extremely bleak," said Prof Chong.
BEST INTEREST
"Sometimes, it may be in the patients' best interest that we don't resort to whatever possible and available because we are just prolonging the agony of the patient in a hopeless situation, prolonging the pain of the family and possibly impoverishing the family further," he said.
Prof Chong also had talks with his wife about what they want in the event of a worst-case scenario.
His wife, a gynaecologist, supports his decision, but has yet to sign the AMD, he said.
Although the AMD is revocable, Prof Chong has no intention of doing so more than a decade on, and hopes it is a decision he will stick by.
He said: "I hope I wouldn't be too frightened when faced with a hopeless situation to change my mind and revoke the AMD.
"I hope I will still know that there is a limit to what medical technology can do, and that we will all die no matter what we do."
If I am in that situation one day, I hope I would be brave enough to want to stop everything and spare further pain to my family.
- Prof Chong Siow Ann
If I am in that situation one day, I hope I would be brave enough to want to stop everything and spare further pain to my family.
- Prof Chong Siow Ann
Don't want to be a burden
FINANCIAL BURDEN
Insurance agent Ngoh Seh Suan's main concern in taking up the AMD was that he did not want to be a financial and emotional burden to his family.
The 36-year-old told TNP: "Before I signed the document, I asked myself if I can release my family of the emotional and financial decision (to pull the plug) in the worst case scenario for me.
"I don't want to let them make this decision, it is not easy for them, and hence, I decided to do it myself."
His parents did not oppose his decision when he broached the topic, but declined to sign it themselves.
His girlfriend, who declined to be named, agreed with his decision She said: "I think it's good that I don't have to second-guess what Seh Suan might want. There is also a sense of peace knowing that it's that person's decision."
FAMILY'S BURDEN
Madam Hor Khin Kim, 81, a retiree, had no problems signing the AMD last year.
She said: "I am so old already, why would I need to extend my life for a few more minutes?"
Speaking in Mandarin, she told TNP: "When one person is bedridden in hospital, it is the whole family that suffers together. I have seen my relatives struggling when they are dying and it is very stressful for the other family members."
Madam Hor made the decision in the presence of her son and her granddaughter in the hospital.
This decision was met with initial reluctance from both, but they agreed with her decision after realising it was what Madam Hor really wanted.
Her granddaughter, Ms Mak Yiing Huey, 22, said: "My grandma feels that it would be even worse not being able to express herself, move or do anything at all but wait for death. For someone who has been independent all her life to be in that situation would be really terrible."
MY BURDEN
Freelance therapist Eileena Lee, 45, who is gay, said that her future partner will have no legal rights to make the decision. So she wanted to lessen the emotional burden.
She said: "If I do have a life partner in the future, she won't be recognised by the law as my partner to make any decision for me, and hence, I am making it for myself first with the AMD."
DIFFERENCES BETWEEN AMD AND ACP
ADVANCE MEDICAL DIRECTIVE (AMD)
- Revocable legal document signed in advance to declare one's intention to refuse any extraordinary life-sustaining treatment to prolong life; applicable only in event when one becomes terminally ill and unconscious, and where death is imminent
- Must be above 21 years of age and not mentally disordered
- Made through a doctor, who will act as one of the two required witnesses. Second witness may be any other suitable person above 21 years old
- Completed form to be submitted to the Registrar of Advance Medical Directives
- Confidential; doctor to submit request for search in AMD registry should patient be in condition for AMD to be effected
ADVANCE CARE PLANNING (ACP)
- Ongoing communication process that takes place through sharing future healthcare wishes with loved ones
- Applicable for wide range of endof- life decisions, such as views on treatment plans and preferences on who to help in decision making when one is incapacitated from doing so
- Not a legal process
- Care preferences can be updated any time, through informing loved ones and updating ACP documents
- Does not require presence of doctor, except for patients with complex conditions, which may then necessitate facilitating by ACP facilitators
- Can be documented by various forms to be shared with loved ones, such as in an ACP form or a letter
- Loved ones will convey preferences to healthcare team in medical crisis
- One can make AMD and also undergo ACP process
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