Their final days: More dying people sharing thoughts about life and death

Motivational coach Stephen Giam planned to write a book titled I Am Dying, So Are You, but did not have the time to do so before his death at the age of 51 from advanced bile duct cancer three weeks ago.
Motivational coach Stephen Giam planned to write a book titled I Am Dying, So Are You, but did not have the time to do so before his death at the age of 51 from advanced bile duct cancer three weeks ago. PHOTO: NATIONAL UNIVERSITY CANCER INSTITUTE, SINGAPORE (NCIS)

More dying people are recording and sharing their thoughts about life and death with others

What can the dying teach the living? Quite a bit, it seems.

A small but growing number of people spend their last days recording their thoughts on life and how they cope with impending death in order to share them with others.

They hope to get people thinking and talking about death early enough to re-examine their priorities in life, and take action on matters such as making wills or signing advance medical directives.

Mr Stephen Giam, 51, for instance, had advanced bile duct cancer. He died three weeks ago.

But before his death on Sept 26, he spent five of his last 20 days filming short videos of himself tackling various topics from his hospital bed. Titled "Stephen Says", the series of 19 YouTube videos covers issues such as: What's it like to have cancer? How do you make death your "slave"? How do you leave a legacy?

During his life, Mr Giam was a motivational coach. He told his doctors that perhaps being a "death coach" would be useful for others.

Sharing their personal journeys

"People are afraid, but they also want to learn from you. They are curious: what is it like to be dying?" he said in one of his videos.

The videos have since garnered about 70,000 views.

Mr Giam is not alone in his quest to use his dying moments to reduce the stigma associated with death. Industry observers say they see more of such projects nowadays because of a maturing consciousness among people who want to explore what it means to die well, and the availability of online platforms to get the discussion going.

"Our country is at a juncture where people are starting to question whether we should focus on curative treatment to extend life at all costs or whether it is about quality of life and minimising suffering," said Mr Mark Lin, deputy director of the charity Monfort Care which started a project called "Good Death" in April.

Mr Lee Poh Wah, chief executive of Lien Foundation, said: "In our various projects involving the terminally ill, we were never short of people who wanted to speak up and tell their stories.

"But perhaps the greater appeal now stems from the fact that the dying know that they have direct access to a much larger audience in our increasingly connected, online world."

The Good Death initiative, led by Mr Lin, has a "Last Interview" segment where those who are terminally-ill consent to allow their last few verbal exchanges with their social workers to be recorded and released via videos on Facebook and on a website.

"Benny", for instance, had pancreatic cancer. In the interview, he said his biggest regret was to divorce his wife and the most important thing he learnt, after knowing that he had little time left, was to treasure his family.

 
 

Another video showed the dilemma that "Mr Tan", who had oesophageal cancer, faced when he had to decide whether or not to opt for a high-risk operation that would extend his life for a while.

Both Benny and Mr Tan have since died and their videos were uploaded online a few weeks ago.

Lien Foundation and the Asia Pacific Hospice Palliative Care Network also released a documentary called "Life Asked Death" about a week ago.

The 26-minute online film showed the challenges and triumphs of bringing palliative care to different parts of Asia, through interviews done with people who were dying and who were in pain due to a lack of pain medication.

Beyond the online space, other projects, such as "Before I Die", venture into the community to engage heartlanders on the issue.

The people who were willing to publicly share the very personal journey of facing death do so for various reasons.

For Mr Giam, it is not only about helping others learn from his experience, but also a therapeutic process for him to talk through how he was feeling.

His last words on the video were: "I hope the videos are interesting and meaningful to you because these are the things I am also struggling and working on on a daily basis now."

Although death remains a taboo topic for many, the dying hope their videos will get these important conversations going long after they die.

Said Dr Jamie Zhou, an associate consultant in the division of palliative care at the National University Cancer Institute, who helped edit Mr Giam's videos: "Nothing is more powerful than a patient's perspective and Stephen kept it real by being authentic and vulnerable. He believed very strongly in what he was doing."

A version of this article appeared in the print edition of The Straits Times on October 17, 2016, with the headline 'Their final days'. Print Edition | Subscribe