Legislator Tien Chiu-chin
Holding on Only Preserves Regrets
Few trials in life are more difficult than saying goodbye to a loved one. Oftentimes a prolonged illness devoid of hope for a turnaround is harder on the living than the dying, and when nature gains the upper hand, not knowing when to let go only results in lasting regret.
Holding on Only Preserves RegretsBy Whitney Huang
From CommonWealth Magazine (vol. 560 )
"Regret stays with you for a lifetime… if only we could go back and make that decision again, but it's all too late…" says legislator Tien Chiu-chin, reflecting on the death of her father, Dr. Tien Chao-ming. Images of him spending his last seven or eight years hooked up to a respirator, feeding tube, and catheter cause tears to well up in her eyes and her voice to crack with emotion.
Although her father passed away four years ago now, the pain is still so real it seems like only yesterday. "I have to speak out, so that those grappling with decisions know not to hold onto their loved one because they can't let go in the moment."
A well-known human rights physician, Tien Chao-ming had a series of strokes that put him in and out of the hospital before eventually becoming incapacitated and bedridden.
After returning home from one episode, he told Tien Chiu-chin's mother, "Next time something happens don't seek medical attention." This set his wife immediately to tears, and she rushed to the phone to talk it over with Tien Chiu-chin.
Tien Chiu-chin later asked her father about it, and after some hesitation he finally reluctantly admitted that during the previous hospital stay he was forced to wear adult diapers. Always a fiercely proud man, he could foresee things only getting worse, and as such did not want to seek medical attention the next time something happened.
But he did not get his wish.
One day, an anxious Mrs. Tien called her daughter and told her that Dr. Tien was unable to breathe due to fibrosis of the lungs and that he had been sent to the hospital. By the time Legislator Tien arrived at her father's bedside the doctor had already fitted him with a respirator.
When she asked him if it hurt, he nodded his head. All she could do was grip his hand tightly and cry.
Death just wouldn't come for withering father
Next, her elderly father was forced to endure the prolonged process of withering away.
First came a tracheostomy, where an incision was made in the cartilage of his throat to connect him to a respirator. This is when the father that used to talk about everything under the sun left Tien Chiu-chin, and all that remained was the capacity to nod or shake his head, or blink his eyes.
After the tracheostomy, phlegm had to be suctioned away. "That was excruciatingly painful," Tien Chiu-chin says emphatically.
When her father was still conscious his face would become beet red every time phlegm was suctioned, his body convulsing in pain. If she was by his side at the time, she and her mother would each take one side of the bed and hold his hand, telling him to gambate! (Japanese for "go"!)
"Every time it was too much to see, and it went on like that for years until finally he didn't even have the strength to fight…" relates Tien Chiu-chin, her eyes red from crying.
Over time, her father's skin thinned, and his muscles atrophied until he was just skin and bones. As his digestive organs deteriorated his nails became discolored. In addition to the tracheostomy he was fitted with a feeding tube and a catheter. "No tube was spared, and he was fitted with everything until he couldn't even get the death he wanted," Tien Chiu-chin relates painfully.
As she describes it, seeing her father stricken in bed, not knowing if he had any consciousness left, she felt as if she had gone back to her old house, where the door was shut tight with no lights on inside. She called from outside, and although for a time it seemed like someone inside might have responded, there was no answer at all. Even so, she could not bring herself to leave, calling from outside.
"You wonder if he's cold, hot or hungry. The only thing you can be sure of is that he's breathing. But that's the cruelest part, because he's relying on a respirator," the legislator relates.
As a physician himself it was especially cruel for her father, who while still lucid watched his organs deteriorate one after the other.
Seeing her father endure such prolonged anguish, Tien Chiu-chin developed a serious mental block, fearful of seeing her father in the hospital in the face of the self-blame and helplessness she felt every time she visited.
By letting go, a family can decide if a loved one gets release.
Tien Chiu-chin's mother adored her husband, holding and kissing him every day at the hospital and making him the center of her life.
Mother's attachment no match for nature
One time, after Tien Chao-ming had been bedridden with a respirator for a year or two, her mother told Chiu-chin that if one day she became ill and her condition deteriorated she did not want to have a tracheostomy no matter what.
However, when she grappled with letting go and allowing her father to leave this life, her mother was unable to do so. Only several years later did her mother come around after a visit to Taroko Gorge.
A religious devotee, Mrs. Tien finally opened her heart amidst nature's imposing grandeur, telling Chiu-chin, Mankind cannot go up against the might of nature and God. If God wanted to take Dr. Tien, then she should let him go.
At first Tien Chiu-chin did not read much into that conversation, but upon returning to Taipei Mrs. Tien told the medical staff that if Dr. Tien's blood pressure continued to drop they should not give him medicine, and allow him to pass naturally.
As it happened, just a few days after the doctors stopped administering medicine, Tien Chiu-chin's father passed away, finally putting an end to all the pain.
After her father's remains were cremated, his ashes had a pink and light green tinge to them, which a bone collector told Tien Chiu-chin was from taking too much medicine. This hit her especially hard, as the futile medical care even penetrated through to her father's bones.
Constant suffering, endless treatment
"It was such a long, long goodbye," Tien Chiu-chin laments. Her father's years of pain taught she and her family valuable life lessons.
After the experience, Legislator Tien actively took part in the revisions to the Hospice Palliative Care Regulations in the hope of minimizing futile medical care and comfort the dying while relieving the burden on the living.
Most importantly, establishing such a system can eliminate regrets.
One year when her bedridden father was still responding to outside stimuli, Tien Chiu-chin arranged for an ambulance to take him on his birthday up Yangmingshan to see the trees. However, she ended up tabling the idea under the pressure of family concerns and the hospital's estimation of the risks.
This would end up as one of her life's greatest regrets, as she will forever remember the expression of joyful anticipation on her father's face – even though he could not speak by then – when she brought up the idea to him.
"There was hardly anything I could do for my father, except to let him have a look at the trees outside," she relates, her voice a whisper.
"Maybe if you keep a loved one around, he'll be responsive for a brief time. But after that his body keeps deteriorating. If he is unconscious, the children keep vigil over an empty shell. Despite knowing full well that he is no longer even a shadow of a person, and has endured so much suffering, they still can't stop (treatment). Humanity put to the test like that, it's really too much," she says. And after pausing for two seconds she adds despondently, "It makes no sense."
If only one could go back and make that decision again.
Translated from the Chinese by David Toman