Life And Death: Who Can Decide?

Terri Schiavo suffered a cardiac arrest in 1990. Her brain was deprived of oxygen and she lapsed into a “persistent vegetative state.” That was fourteen years ago. Let her live or let her die? Who has the right to decide on Terri Schiavo’s fate? While this is being debated, Terri’s life hangs on the line. The tube that had allowed her to be fed was removed last Friday. She is not allowed to be nourished or hydrated. Dying by starvation and dehydration is a painfully slow process. It will take anything from two to four weeks for Terri to die.

One can only speculate why, after being awarded more than US$1 million in a malpractice suit that provided for Terri’s lifetime care, her husband, Michael Schiavo, is unrelenting in his pursuit to end her life. According to Michael, on several occasions before her cardiac arrest, Terri had indicated to him that she would not want to continue living should she be in a condition she currently is in. It was exposed that this was not revealed by Michael during the malpractice proceedings.

Terri’s case brought memories of another painful episode of Mum’s last few days to the fore. When she lapsed into a coma and could not be fed or take her medicine orally, I decided not to send her back to the hospital. I believe that was her wish and I was determined to fulfil it.

“If I die, I want to die at home,” she had pleaded to me at the hospital. “Please take me home.”

My decision was based on those words. To take her back to the hospital and get a feeding tube or an intravenous drip inserted would have prolonged her life, for how long I do not know. But that was not what she had wanted. I stopped feeding her and stopped her medication. What was I supposed to do when she was no longer responsive to all stimuli short of sending her back to the hospital?

Friends that I consulted had their reservations regarding my decision. I could sense from the hesitation in their voice. However, they advised me to hydrate Mum, or at the very least keep her lips wet. Following their advice, Mum’s lips were kept moist with a cotton ball every half hour.

When Peter came, he insisted that I feed Mum. He could not bear the thought of Mum going hungry. He crushed the tablets and mixed it with honey and fed Mum, bit by bit. She had problems swallowing. It was also a slow process because the medicine tasted awful even with the honey.

In a way, I am glad that Peter was adamant that Mum be fed. It was my mistake in not persisting to feed her. I made the decision to stop because the milk that was fed to her all dribbled out from the corner of her mouth. Eventually Mum learned to swallow. However, all oral medication was discontinued. The only medicine administered was rectal suppositories for her persistent fever.

That all happened within a frame of two days. I have no guilt in not sending Mum back to the hospital. I truly believe that was what she had wanted. As her only son, it was my duty to comply with her last request. She wanted the dignity to die at home. She died at home, surrounded by loved ones. I truly believe that was what she had wanted.

Decisions like these can be very painful and difficult to make. On one hand, we cannot bear to see our loved one’s suffering prolonged but on the other to let them go is one thing that we are dreadfully reluctant to do. Ultimately, it all depends on what one’s spiritual beliefs are. Do we subscribe to a religion that disallows euthanasia? Do we believe that we are at liberty to decide on our own fate and that of other’s?

Terri is a Roman Catholic. So are her parents. The Roman Catholic Church is totally against any from of euthanasia. This should have been taken into account when the judge gave the order to remove the feeding tube. The other question is whether Michael Schiavo or Bob and Mary Schindler, Terri’s parents, are in a better position to decide for Terri; and now whether the courts or the politicians can decide on that too. What has the worth of her life become when it can be decided by another human?

Last night, while we were talking about Terri’s plight, I asked Wuan, “What will you do if I am in a similar situation?”

“I don’t know,” was her terse reply. “What do you want?”

“My faith disallows euthanasia,” I continued, although I was acutely aware that she was getting uneasy.

“That is what we have to abide by then.”

I left it at that. She understood what should be done. My stand was clear. I did not want to pursue that issue with her any further.

Related entries:
Coming Home
The Right To Die?
A Caring Society Reacts
Managing Me

A Caring Society Reacts

We are a society of reactive people but that is not our fault. We each have our own cross to bear that blinds us to the needs of others who are less fortunate. Most times, we are caught up in the daily grind of trying to make ends meet, trying to meet deadlines, trying to keep our sanity intact. We have one thousand and one trivial chores in our minds that barely leave enough room for the essential and the genuinely important concerns that should capture our attention.

Following the news of the totally paralysed man in Hong Kong who had asked the legislators there to start a motion to legalise euthanasia yesterday, the Direction Association for the Handicapped (DAH) has initiated a fund raising drive to raise HK$5 million (RM2.4 million) to help him, identified by the media as Peng Chai. The news link is here.

The DAH is an organisation that serves the severely disabled people in Hong Kong. The amount raised will be used to acquire an electric-powered wheelchair and a portable respirator, both which would allow him a great amount of mobility and the luxury of going home, where two maids will be hired to look after him. For a man who has lived thirteen years of his life in a hospital bed, this progression will be freedom unparalleled.

On all accounts, Peng Chai is a courageous and thoughtful man. He did not want to burden his family. Only those who are nursing a family member who is totally and permanently paralysed will know the amount of mental pain and the intense labour that goes into the caring. To him, death was the only way out. To a caring society, his death wish was a slap in the face. More could have been done to help him, and that is exactly what they are doing now, only after the story was highlighted in the media. This should not be the case. Why now only after thirteen years? Still, it is never too late. I pray that Peng Chai will accept the offers of assistance and go on living. The quality of life should not be measured by health and physical abilities alone. It is the mind that makes all the difference.

The Right To Die?

What do you do when a loved one faces prolonged suffering after all treatment options have been exhausted? What should we do when he pleads to us to help him end his sufferings? Do we continue to allow him suffer the physical and psychological pain until he passes on naturally? Or do we help him fulfil his wish?

The patient does not suffer the pain alone. It takes its toll on his family and those close to him, too. What can be more distressing than seeing a loved one who had always been active and healthy deteriorate to a state where his every need has to be taken care of? What can we do when the pain eats into his very heart and we have to wait for another three hours for his next dose of pain killers?

I am greatly disturbed after reading about the paralysed man in Hong Kong (reported here and here) who pleaded for the right to die. Being a quadriplegic myself, I can partially relate to the torment that he has to go through day after day. Unlike him, I can look after myself to a certain extent. However, he is totally paralysed, needs everything to be done for him, and breathes with the help of a machine. In addition to that, chronic and acute disabilities like this put a great mental and financial strain on his family as well.

“I lie in bed 24 hours a day,” the man wrote by tapping on a computer keyboard with his chopsticks. “I need other people’s help to eat, urinate, clean my body, turn around and sleep. I am a total invalid and a financial and mental burden to my family.”

The Strait Times, 21 April, 2003.

The question is do we help him execute his desire or do we deny him his appeals to end this torment? My faith disallows euthanasia but I have my own personal opinions regarding this issue. My views on this may be flawed and could still be based on my experiences and beliefs before I converted. Nevertheless, euthanasia is against the law in most countries. If so, how then can we improve on the quality of life of people like him who have already given up hope and looking forward to be delivered from their sufferings? Palliative care alone is truly not sufficient.

The BBC contains comprehensive information on euthanasia and the views of the major world religions here.