Preparing to say goodbye: The importance of advance care planning

PHOTO: Preparing to say goodbye: The importance of advance care planning

A poignant letter appeared in one of the local papers some years back, in which the writer related how he had to make the painful decision of withdrawing his mother from ventilatory support.

Writing more than a year after the event, he described how he had struggled with the decision to withdraw ventilatory support for the mother he had known all his life, who had brought him up single-handedly and nurtured him during his childhood.

He likened it to pulling the plug on her.

Just from reading the letter, one could feel the sadness, guilt and pain that the writer, who was an only child, experienced in making that decision.

If I were the mother writing in reply to that son now, I imagine the letter would be something like this:

"My dear son, sorry for causing so much anguish to you in those last days of my life.

"No, you did not pull the plug on me. Life had left me long before you agreed to let me go naturally and peacefully. Don't feel bad. That would have been my wish. I was ready to go.

"My only regret was that I did not tell you what I had wanted for myself earlier. You must go on with your life now and I just want to tell you how grateful I am to have a son like you. Love always, Mum."

This brings me to the heartwarming story of Mr J, who allowed us into his life nearly a year ago. He was blessed with an adoring wife and two young daughters, whom he called his princesses.

At the age of 57, which would be considered young by most, he was diagnosed with an advanced malignancy that would take his life in a couple of months. He was fully aware of the diagnosis and prognosis and was staring death in the face.

However, not being one to cower and wallow in fear and self-pity, Mr J decided to take control of his life and death.

Thus he and his wife began a series of conversations with his health-care team, which I was a part of. These are referred to as end-of-life conversations.

Much courage was required from him to discuss his life and death. It was a "first person" discussion, something very real to him. His family members also had to be brave to confront these issues as they grappled with the inevitable.

For the health-care team, these conversations were moving; for family and friends, they were emotional conversations borne of love.

After all, these were Mr J's final speeches, making up the final decree that would chart the course of the remainder of his life and beyond.

In medical jargon, Mr J was making his advance care plans known to us, verbally and in writing.

He requested to be "allowed to die" peacefully and naturally. He declined artificial means to keep him alive unnecessarily and any measures that could prolong the dying process.

He focused his mind on saying his goodbyes and expressing profound love for his wife, their two princesses and his siblings.

He thanked his employers and clients for all their support and sought forgiveness for any hurtful words or misdeeds that he might have committed during his life.

Planning for the end, he specified the type of church service and funeral that he wished to have.

In his barely legible writing, he instructed that he "be placed in a simple coffin and covered with rose petals".

"Play the song When You're Gone by Avril Lavigne as a token of loving memory - a song dedicated to all my family, loved ones and true friends."

Mr J chose his wife to be his surrogate decision-maker.

His advance care plans were also meant "to relieve worry and stress" for his wife and family who stood by him faithfully throughout.

Late one evening, on the day of his death in hospital, Mr J's daughter made one final visit to his church, to offer final prayers on his behalf.

Before leaving the hospital, she made him promise to wait for her return.

Mr J kept his promise.

Half an hour after her return from church, he died peacefully in the company of his family.

His wishes were honoured right down to the last detail.

"When you're gone, the pieces of my heart are missing you. And when you're gone, the face I came to know is missing too."

The haunting words of Lavigne's song, together with Mr J's advance care document, are now cherished pieces of treasure for his wife - a legacy that attests to the courage of a great man whose epitaph might have very well read: "He lived and loved with foresight and courage."

These narratives were of two human lives that ended quite differently.

One had his wishes and preferences known, the other did not.

Advance care planning allows the patient to exercise his autonomy right to the last moment of life.

It spares his family from having to make painful and heartbreaking decisions at a most difficult time in life, when confusion and chaos rule every thought and action.

Advance care discussions deal with existential issues - matters of life and death that could potentially make the difference between a good death and one with unnecessary pain and suffering.

They are loving conversations that remind us of the fragility and impermanence of life, and that each moment should be lived with purpose and reason, right down to the last second.

low.james.yh@alexandrahealth.com.sg

Dr James Low is a senior consultant and palliative care physician at the department of geriatric medicine at Khoo Teck Puat Hospital. He is a fellow of the professional bodies of medical specialists, the Academy of Medicine (Singapore) and Royal College of Physicians (Edinburgh). He is also a member of the specialist training committee for geriatric medicine, under the Academy of Medicine (Singapore).


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