Depending on your worldview and circumstance of life, talking about death might inspire a spectrum of feelings ranging from fear, denial and resignation to sadness, relief and even peace.
In many circles, death is not suitable mealtime conversation or any other time for that matter, and certainly not with elderly folk!
I remember I could not even wear any black clothing to visit my maternal grandmother unless I wanted to be accused of wishing an early death on her.
She was superstitious and did not like to express her feelings, positive or otherwise. If ever I tried to plant a kiss on her cheek, she would brush me away in mock annoyance. Needless to say, death was not a topic my mother or my aunts and uncle could talk about easily with her.
Then she had a mini stroke. On the day that she checked into the hospital, she took a last look at the photo of my grandfather on the wall, as if she knew she would never return to the family home. She was right.
There were many assumptions that were made about the kind of care she wanted towards the end of her life and she had no will nor gave specific instructions for the family. She deteriorated in hospital and two months later, she was gone.
For her daughter – my aunt – it was different. When she was told she had exhausted all medical options for her terminal cancer, she had already prepared her will, sorted out her estate matters and communicated to her children clear instructions for her earthly treasures and funeral arrangements.
She may not have been emotionally ready to say goodbye until her very last day, but death was a topic she and her children could talk about openly.
My cousin recalls an occasion when they were singing hymns together, and as they approached the Christmas carol section in the hymn book, my aunt matter-of-factly said to skip it as she thought she wouldn’t make it to Christmas.
On the last day of her earthly life, she spoke to her immediate family members, before she told her husband that he should go to bed as she wanted to do the same. They went to bed, and she slipped away in her sleep.
Many of us know how to live well. But are we ready to leave well too? How do we increase our chances for a dignified end-of-life?
In his book, Through the Valley: The Art of Living and Leaving Well, author William Wan says, “To be able to speak about the unspeakable D-word is to have overcome the primal fear of death. It is to take charge of our own leaving even as we do our living, and to know that it is neither weird, morbid or macabre to speak about death before we die…
“And here is the crux of the reason why it is so important to overcome the taboo and fear of talking about death and dying: To die well, we must be able to talk about it and to make pre-death arrangements.”
“Unless we can talk about death as freely as we talk about life, there can be no adequate preparation for dealing with the inevitability of death and dying. Without adequate preparation, there are consequences, not for the dying but for those who are left behind.”
Sometimes, death can be just as hard for loved ones who are left behind
I was reminded of how important it is to talk to our loved ones before it’s too late, when I spoke with Edwin Sim, an active volunteer with HCA Hospice Care’s (HCA) Young Caregivers Programme since November 2015.
He facilitates these workshops to raise awareness about eldercare issues, inculcate values of empathy and emphasise the importance of building intergenerational relationships. The programme is usually incorporated into schools’ Character and Citizenship Education lessons or CCA timeslots.
“I tell the students a story that will hopefully inspire them to take notice of the people around them, their loved ones, whom they might not regard with so much importance right now,” Sim said. As a tribute to his father, he opens his sessions with a Hokkien song by singer-songwriter Eric Moo, Call My Name (叫阮的名) – one of his late father’s favourite songs – about wishing to hear his mother’s voice call his name.
Sim started volunteering with HCA a few months after his father died. In 2015, the elder Sim was diagnosed with peritoneal cancer. The family was devastated when doctors gave the prognosis that he would have less than a year to live and nothing more could be done. The hospital then put them in touch with HCA to assist with Home Care Service, as the family wanted to bring the elder Mr Sim home for his last days.
“It was a very different kind of care from what we received at the hospital. At the hospital they were treating the disease, but with palliative care, they cared not just for the patient, but for the family. They were always just a phone call away,” Sim told The Pride.
When Sim sensed that his father was close to death, he contacted the doctor on-call, who advised him calmly: “Do everything that you need to do, and say everything that you need to say. Your father can hear you, even if he is unable to respond.”
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It was after his father passed away in August 2015, just three months after being diagnosed, that Sim decided that he would volunteer with HCA.
He said, “I wish for others to be better prepared than I was.”
Sim, who describes the relationship he had with his father as a typical Asian father-son relationship, said, “My selfish motive [for volunteering] is that it’s a way for me to find closure about my father’s death. But to be honest, I don’t think I ever will. I will only have closure when I see him again and give him a hug and tell him that I love him in person. That is my one regret – that I never got to do it because I just didn’t have the courage.”
Tools to get the conversation going
It is precisely to help people overcome the taboo of talking about death that organisations like the Singapore Hospice Council (SHC) focus so much on its public education efforts.
Evelyn Leong, CEO of SHC, tells The Pride: “When we talk openly about dying, we can then make the most of life and gain support in the process. Let’s begin with the end in mind, then we can make a more deliberate effort to plan for ourselves and others around us.”
Nevertheless, such conversations are not easy to start. How would you even broach a subject with an older loved one about preparations for their final days?
This is where SHC has prepared several tools to get these tough conversations going. They’re designed to be unintimidating, and easy to use, says Violet Yang, Manager, Public Education & Volunteer Management at SHC.
The first tool is a book, the Time of My Life Journal, which can be done alone or with a loved one, to help people discover values that matter the most to them.
The second is a set of 30 conversation cards, available in English and Chinese, designed to trigger thought processes on how to leave life in a dignified manner. Examples of questions include thoughtful questions like “Who do I turn to when I am faced with a problem or a challenge?”, or emotive ones like “What do I love or dislike most about my current life”, or even practical ones like “Who can speak for me if I am admitted to hospital?”
These conversations hopefully will lead people to documenting their wishes in legal writing – an important part in making preparations to leave well and prevent unfortunate consequences for loved ones left behind, explains Yang.
There are several such documents aside from the will, such as Lasting Power of Attorneys, Advance Medical Directives and Advance Care Planning, that can be used to address different end-of-life scenarios, she adds.
More information on these documents and palliative care can be found on the SHC website.
“We’ve found that many people find out some surprising things about your loved ones by using these tools, talking about end-of-life matters and finding out their wishes. We hope that this helps family members to bond,” Yang says.
SHC is conducting a live session on “Introduction to Palliative Care” with the National Library Board on Thursday 6 August 2020 at 3pm. Sign up for the event here.