"Forgive Me, Ah Ma... For Taking Too Long to Remove Your Mask" A Touching Story from the End of Life at "Koon"

Bangkok – In an era where death is not the end but another step in life, a peaceful and dignified departure is what everyone yearns for. However, in reality, the path to acceptance is often fraught with sorrow, as illustrated by the story of "Ah Ma, aged 95," who passed away peacefully at "Koon" Palliative Care Center. This narrative reflects the challenges of communication and decision-making during the final stages of life.

The story begins when a family moved Ah Ma from a private hospital to "Koon." Ah Ma, at 95, had built a successful business with her late husband (Ah Kong), enabling all eight of her children to study abroad. Even in her early nineties, she was still working. All her children, especially "Ah Pae," the middle son and primary caregiver, showed immense love for Ah Ma.

Ah Ma's health began to decline after a stroke last year, leading to tube feeding and frequent hospitalizations. Most recently, she was admitted due to a problem with her feeding tube and developed several complications, particularly recurrent lung infections. The previous doctors had begun discussing a tracheostomy. At that time, Ah Ma, despite her stroke, could still open her eyes and look around. However, during her hospital stay, she suffered another stroke on the other side of her brain, leaving her unable to open her eyes or communicate.

This was the point when the family met the medical team at "Koon." The children's opinions were divided; some did not want Ah Ma to undergo a tracheostomy, while others believed it was necessary, leading to confusion about the best course of action.

 

Love Mixed with Confusion: "Longest Life" or "Comfort"?

The doctor caring for Ah Ma observed Ah Pae's profound love for her. Ah Pae wanted Ah Ma to live as long as possible but also wished for her comfort. However, he couldn't decide which was more important: "living longest" or "being comfortable." When asked, the other children all replied, "It's up to Ah Pae," explaining, "Ah Pae can't come to terms with it; everyone else has."

Ah Pae clearly showed his distress, staying by Ah Ma's bedside almost constantly. He often expressed regret, saying, "I should have brought Ah Ma to Koon sooner." The attending doctor felt the same way, often encountering the regret of "meeting palliative care patients too late." This is because most people still misunderstand "palliative care" as meaning "close to death" or "nothing more can be done." Consequently, they often hesitate to seek it, preferring to continue treatment at their original hospital until the very end.

 

Unbearable Suffering

At the previous hospital, Ah Ma had to wear a tight NIV (Non-Invasive Ventilation) mask constantly to force air into her lungs, which caused her discomfort and pain. The team at Koon attempted to switch her to a high-flow nasal cannula, which initially seemed to improve Ah Ma's condition. However, a significant problem was her excessive phlegm, which she couldn't cough up or swallow due to severe brain damage.

One day, Ah Ma's phlegm completely blocked her lungs, leading to another infection. This time, her condition worsened significantly, requiring her to wear the NIV mask again, and she couldn't take it off. Ah Pae sensed Ah Ma's suffering from the mask and phlegm suctioning. Still, due to her severe brain injury, Ah Ma didn't respond to any stimuli, leaving Ah Pae unsure if she was in pain. Ah Ma remained still during every suctioning.

The doctor explained that even though Ah Ma couldn't communicate her pain, her body's pain mechanisms were likely still functional, meaning she could be experiencing pain but couldn't express it.

 

A Difficult Decision: Love That Learns to Let Go

An emergency occurred when phlegm instantly blocked Ah Ma's vocal cords, causing her oxygen levels to drop rapidly in less than a minute, despite wearing the NIV mask. Although the medical team managed to resolve the situation, everyone realized that such incidents could recur endlessly. The uncomfortable phlegm suctioning procedure made the doctor feel that "perhaps a tracheostomy would be more comfortable for Ah Ma." However, if they chose not to perform a tracheostomy, the end would come when the phlegm could no longer be cleared, and Ah Ma would pass away suddenly, leaving the family unprepared.

The doctor then communicated directly with Ah Pae: "Ah Ma cannot communicate with us, so we should assume she is in pain. If we don't consider this possibility and Ah Ma is indeed in pain but cannot tell us, I believe that would be very wrong." Ah Pae agreed and began to consider the path that would spare Ah Ma further suffering.

When the doctor later spoke with all of Ah Ma's children, she discovered that despite some saying they would leave the decision to Ah Pae, deep down, they all wanted to prolong Ah Ma's life as much as possible. This isn't anyone's fault; it's a natural expression of love for their mother, who was the center of their family.

The doctor explained all the details about Ah Ma's suffering. Some still wanted a tracheostomy, others wanted to prolong life at all costs without a tracheostomy, and some wished to stop NIV and accept a peaceful passing. After a long discussion, everyone understood and acknowledged Ah Ma's suffering. Driven by their love for her, they no longer wanted her to endure such pain.

The doctor stated, "At this moment, I want everyone to help decide what is best for our mother, because now she cannot tell me what she wants. I must ask all of you, her children, to choose what your mother would want on her behalf."

Many lowered their heads, crying, and clearly showing their reluctance to let go. But the doctor had no other choice and continued, "The current situation will cycle between wearing the NIV mask until her face is bruised, alternating with constant suctioning. One day, a situation will arise where the phlegm cannot be cleared. I believe at that moment, Ah Ma might pass away in the hands of the doctors and nurses. However, there is another option: if we discontinue NIV and suctioning, I will manage all her symptoms so she doesn't suffer or feel breathless, and allow all of you to be with her until her last breath. I want everyone to help me choose which option Ah Ma would prefer."

Some children cried, some looked away, others looked back through their tears. Everyone was heartbroken, as both options were painful. But a decision had to be made.

The eldest son responded, "We must do everything possible. We must keep suctioning the phlegm." Ah Pae then turned and said, "Ah Ma has suffered enough. I don't want her to suffer anymore." Another sister said, "I think Ah Ma can't bear it anymore. We have to accept it." Another sister replied, "I told you to do the tracheostomy from the beginning; Ah Ma would be comfortable by now." Another brother responded, "Keep suctioning the phlegm as long as she can tolerate it. We have to do it; Ah Ma is a fighter."

The doctor saw the immense love everyone had and their desire to hold onto Ah Ma for as long as possible. She asked, "How much longer do you think Ah Ma can endure this situation?" No one answered. The doctor didn't have an answer either.

She continued, "If Ah Ma could choose, would she truly want the doctor to continue doing this until the phlegm can no longer be cleared?" Everyone remained silent. Ah Pae lowered his head; the doctor saw tears falling onto his hands, which were twisted and red.

After a long silence, the doctor spoke again, "If you still have no opinion, allow me to continue for a moment. From her current condition, Ah Ma likely cannot overcome this crisis. Her body is too weak. I believe this body can no longer serve her. I believe that when she leaves this world, she will go to a world where her body is complete, and she will no longer suffer from the deterioration of this body."

At this moment, some eyes began to change. From defiant, they became gentle, as if seeing a better path than the present. The doctor believed that everyone was currently focused on the departure, the sadness of losing Ah Ma, and the filial duty to do their very best. Therefore, showing them the good that Ah Ma would receive in the future might make them feel that Ah Ma was ending her suffering in this body but was about to live a beautiful life in heaven, according to Chinese beliefs.

The doctor let the silence work for a while longer. Ah Pae then said, "Ah Ma has been good all her life; she must go to heaven. Ah Pa (grandfather) must be there to welcome Ah Ma." The eldest son nodded in understanding. A sister asked, "So, we're just going to let her die? We won't do anything?"

The doctor replied, "We have done so much already. Ah Ma has received more treatment than her body should have endured." The same sister (who wanted the tracheostomy) then said, "So, we are the ones deciding the day Ah Ma leaves?"

The doctor responded, "In truth, Ah Ma might have chosen to leave many days ago, but it was us who prolonged her stay." She began to understand, nodding through her tears.

The doctor continued, "I believe the most important thing right now is that Ah Ma probably wants all of her children to send her to heaven. Ah Ma would likely want her loved ones around her, not just doctors." Everyone understood and agreed that Ah Ma had suffered enough, and they were all ready to discontinue the NIV mask.

The doctor explained every step, answered all the relatives' questions, and observed everyone in the room to ensure they understood the upcoming process. Ah Pae, who had been the most anxious and insistent on prolonging Ah Ma's life, was now the one explaining to everyone the suffering Ah Ma had endured. The worry in Ah Pae's eyes transformed into a sense of peace.

The other children, who had initially placed the entire burden of decision-making on Ah Pae, also understood. The doctor had sensed this heavy burden on Ah Pae from the first few days of their conversations but hadn't realized until this meeting that the other children were also not truly ready to let Ah Ma pass peacefully. The discussion finally brought clarity and resolved any lingering doubts.

The doctor informed everyone again, then told Ah Ma that she would remove the mask from her face. She apologized to Ah Ma for letting the situation go on for so many days, causing her to suffer. She switched to a high-flow nasal cannula and informed everyone that after removing the mask, she would also remove the monitor. Everyone together sent good energy to Ah Ma, encouraging her to recall all the good deeds she had done, to fill the room with positive energy, and to guide Ah Ma peacefully on her long journey.

After the mask was removed, Ah Ma breathed comfortably, showing no signs of distress, as everything was well controlled. All the children stopped looking at the monitor screen and focused on Ah Ma, hugging and kissing her, and speaking loving words until her last breath, which everyone observed. The doctor stayed there to ensure that their beloved Ah Ma experienced no discomfort. She quietly left after Ah Ma's last breath, allowing the children some time alone with her.

Ah Ma's last breath was as peaceful as her own grandmother's. The doctor felt a sense of relief that everything had gone smoothly. Ah Ma departed peacefully, surrounded by her loving children and grandchildren. Although the doctor was a little late in discontinuing the mask, at least she had guided Ah Ma on her final journey in the most beautiful way possible.

Ah Pae came to the doctor and thanked her, expressing his profound regret for bringing Ah Ma to "Koon" too late. The doctor simply nodded. How many times had she heard those words? To this day, they remain painful to hear, and she doesn't know how to solve this problem. Another son approached her and said that if he had known it would be this easy and comfortable, he would have asked her to remove the mask much earlier and wouldn't have let Ah Ma endure such suctioning.

The doctor could only say, "Ah Ma was ready to depart when we were ready, too."

By Dr. Nittha Eua-areemit

Source:

Nittha Oer-areemitr | Facebook