Staring death in the face
Accepting mortality isn’t easy, but making plans is essential
Text: Christian Barker
“No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet, death is the destination we all share.” As Steve Jobs pointed out in his 2005 Stanford commencement address, death is life’s greatest certainty. “No one has ever escaped it,” he said. When it comes to staring death in the face, most of us prefer not to think about it, though.
Unfortunately, we do need to think about it. And if we hope to make our eventual, inevitable passing as physically and psychologically painless as possible — for ourselves and for the people we love — there are certain preparations we have to make. Some are financial, legal and medical. Others are psychological and spiritual. All are pivotal to ensuring a ‘good death’.
Get your affairs in order
No matter how young and healthy you are or how modest your possessions, you should have a will of some sort in place. Various simple DIY forms are available online, but ideally you’ll want to work with a lawyer experienced in these matters and qualified to act as executor. Consider the big stuff: guardianship of your children will be paramount if you’re a parent. Then there’s the recipient of major assets and any funds in retirement or superannuation accounts. But also take time to consider whom you’ll bequeath keepsakes and heirlooms to. These can be incredibly meaningful to the people you leave behind.
Where a last will and testament primarily details what happens to your worldly possessions, a living will dictates what happens to you, if you suffer a catastrophic accident or illness. This document provides advance directives for doctors and caregivers on how to proceed if you’re gravely ill, grievously injured, comatose or otherwise mentally incapacitated. It can clarify your wishes regarding pain management, resuscitation, ventilation, tube feeding, medication, dialysis and organ donation.
It’s wise to appoint someone you trust with power of attorney, to make legal and financial decisions in your stead should you become unable to act or speak for yourself. Similarly, appointing a family member, close friend or confidante as medical power of attorney (also known as a healthcare proxy) will help guarantee that your wishes are met, insofar as medical treatment goes.
Hospitals’ standard procedure is to prolong life as long as possible. No matter how well intentioned, this can lead to diminished quality of life during the patient’s last days. If there are specific circumstances under which you’d prefer life-sustaining treatment to cease, you’ll need to provide clear directives and preferably, have a close friend or family member who is familiar with your wishes at your bedside, ensuring these directives are abided by.
Fond farewells
Dr Elaine Kim is a Singapore-based palliative care physician. Practitioners in this field strive to improve the quality of life of patients suffering life-threatening illnesses and ease the burden on their families and loved-ones. “The goal of a palliative care team is to help make sure the last days of people’s lives are comfortable, are peaceful, are good. To help them to die well — that’s exactly what we’re there for,” she explains.
“Obviously, the medical factor is a big part of that,” Elaine says. “But it’s just one element, you know?” While palliative care integrates symptom control and pain management, Elaine says, “There’s also a lot of more holistic stuff, such as family reconciliations, meeting spiritual needs, fulfilling last wishes and helping settle final plans.”
Famous last words
In his book, The Four Things That Matter Most, leading US palliative care doctor Ira Byock wrote that there are four basic messages patients frequently seek to express at the end of their lives: “Please forgive me,” “I forgive you,” “Thank you” and “I love you.” (Ira suggests we would all be happier if we’d integrate these simple statements into our daily routines, expressing gratitude and love, and attempting to heal wounds long before we reach our deathbeds.)
Elaine says, in their last days, palliative patients are rarely concerned with their legacies, their grand achievements or how much money they made. “It’s relationships, it’s people and their families that they are focused on”, she says. “We do a lot of reconciliation work in palliative care, where we try and help bring people together, to see their relatives,” mending rifts with estranged family members — asking for or offering forgiveness.
Turning back time
Australian nurse Bronnie Ware spent a number of years working in palliative care, subsequently documenting the sorrows of her patients in a book titled The Top Five Regrets of the Dying. Many rued not expressing their feelings, not being true to themselves, failing to maintain friendships, spending too much time at work and too little with family. “This came from every male patient that I nursed,” she said of the latter regret.
Do Elaine’s patients tend to regret not devoting sufficient time to their loved ones when they had the chance? “Absolutely. I would absolutely say that,” she answers. “That’s what they’re all trying to do in their last days; to just have more time with their family.”
The story’s end
In the modern era, a major decision involves what’s to be done with one’s digital footprint after death —whether to preserve or delete social media accounts, for example, or who to give email access and other important passwords to. However, Elaine says most patients are more concerned with leaving behind intimate messages for their closest circle, rather than mass-broadcasting a final epic Instagram Story.
“Many patients write at the end. It’s very cathartic,” Elaine says. “They tend to be writing private letters and messages to their loved ones, saying things that they wanted to say to them. Seldom do they want to transmit a message to the world. They’re less philosophical, it’s normally very inward-looking, very introspective.”
According to Elaine, those with strong spiritual beliefs tend to meet their final days and hours with a greater sense of peace, while the irreligious can sometimes struggle with the question of what, if anything, will meet them on ‘the other side’. Older patients also tend to more readily surrender themselves to their imminent passing.
“What I’ve found is that a lot of the elderly people are really quite ready to go — they’ve lived full lives and they tend to be quite prepared,” Elaine explains. “They realise their time has come and they’re ready. And they set the tone. If they’re quite ready to let go, their family may be sad, but they’ll be quite ready to let them go, too. Especially if they see them suffering or in pain.”
Conversely, the younger the patient is, the less life they’ve had to live, the more difficult it will be for them and their loved-ones to come to terms with looming death. “It's the younger ones that really struggle — people in their 20s, 30, 40s or 50s. And obviously, especially, children,” Elaine says.
“That’s where I feel most helpless. In that case, the patient, the family — nobody’s ready to let go. And it is understandable,” Elaine says. “If it were my own child, there definitely would be that sense of not being able to let go, of wanting to just keep on fighting, holding on. It’s really painful to watch, because often they’re not ready to go let go until right at the end. There’s a lot of pain, all the way to the end.”
As our time runs out, Elaine says, the most important thing is to focus on quality over quantity. In the final stretch, she says, “It’s not about adding days to life. It’s about adding life to days.”
