What people need in the hour of death

One cold March day, when she was 84 and suffering from congestive heart failure, my beautiful mother went to the garage and measured her Toyota Camry's tailpipe, planning to buy a hose to fit it.

She was grieving my father's recent death, living alone in Connecticut with occasional visits from her three grown children in California, and suffering too much chest pain and breathlessness to weed her beloved garden.

"There is a possibility for a timely escape," she wrote in the journal I discovered after her death. "And I will take it." She is hardly the first person to yearn to hurry death. The mediaeval text Ars Moriendi (The Art Of Dying) called it "the sin of impatience".

But times have changed. As Medicare's recent announcement of plans to reimburse doctors for end-of-life discussions shows, a once hidden conversation about medical autonomy and the downsides of life-support technologies is exploding into the wider culture. In five US states, medical aid in dying is now legal and Bills permitting it have been introduced in legislatures in more than half of the other states.

As with same-sex marriage and marijuana, the question may be not whether the laws will change, but when.

In the hour of our deaths, most of us will yearn not to cut short our time but for a "soft technology" of compassion, caring and interpersonal skill. We will want to give someone our last words and final blessings. We will probably hope to have someone we love at our side, to be forgiven for things we regret and to be remembered.

I support freedom of choice. But after shepherding my parents through their last years, I doubt that legalising aid in dying alone will end the current epidemic of unnecessary deathbed suffering.

The way the medical system handles death is broken and requires bigger fixes than freedom of consumer choice. Many of us will face quandaries far too nuanced to be solved by aid-in-dying laws. My parents certainly did.

At the age of 79, my father suffered a devastating stroke. A year later, he was hurriedly given a pacemaker, which prolonged his worst years while doing nothing to prevent his slide into dementia and misery. When he was unable to remember the names of all his children, my mother and I tried, without success, to get his device painlessly deactivated.

It was heartrending, but in harmony with our values. My father was a stoic. While still mentally competent, he would not have chosen to end his life. But he believed in letting nature take its course. My mother and I, likewise, wanted nature to take my father from us, not an act of his or our own hands.

Today, a slow, bumpy path to the grave like my father's is common. About seven out of 10 of us now live long enough to die from chronic conditions like heart disease, emphysema, dementia, diabetes, cancer and kidney failure.

Many will spend years in a "grey zone" where medical choices aren't black and white. We will each have to decide when to allow a natural death and when to say yes to yet another medical technology that might fend off death without restoring health: implantable defibrillators, dialysis, feeding tubes, ventilators and the like.

We will need brave, truthful doctors willing to discuss when to stop fighting for maximum longevity and explore, instead, what may matter more to us. Like living independently at home for as long as possible. Like forgoing treatments that are worse than

the disease. Like managing pain. Like living a meaningful life despite physical limitations and dying a good death, surrounded by one's family.

This is the province of palliative care, currently medicine's tin-cup speciality. Its doctors integrate curative medicine, symptom management and shared decision-making. Their numbers are too small to meet the need and their comparatively thin pay cheques are often covered by philanthropies rather than insurance. Adequately paying them requires redirecting how Medicare money is spent.

Medicare currently pays meagrely for palliative care, hospice and home nursing. It provides hospice care only to patients willing to forgo all curative treatments. But it pays oncologists a 4.3 per cent mark-up on drugs they administer, some costing US$10,000 (S$13,500) a dose and prescribed after a cure has become a pipe dream. It will pay over US$100,000 for open-heart surgery on a patient who may be too fragile to survive it.

This helps explain why a quarter of Medicare payments go for treatment in the last year of life, often last-ditch attempts at cure rather than care. But in a positive change, Medicare is currently selecting hospices for a pilot programme that will let some patients receive palliative care without requiring them to forgo what are typically considered curative treatments. And Medicare's new willingness to pay for discussions of end-of-life options is another good step.

Such programmes may start to reduce the widely recognised problem of overly aggressive medical treatment, and attendant suffering, near the end of life.

Studies have found that about a third of Medicare patients have surgery in their last year of life, and 17 per cent die in an intensive care unit (ICU) or shortly after a stay. Too many families have cursed, in hindsight, the false hopes, unheld conversations and rushed medical decisions that led them there.

And this matters because death is relational. It leaves an emotional legacy. Everything we do affects those we love, including the manner of our dying. Witnessing death in the ICU often leaves family members with depression, anxiety and complicated grief. So does taking one's life without saying goodbye.

That is why I am deeply glad my mother did not follow through on her intentions that March day - and equally grateful she decided not to put her fragile body through risky heart surgery that might have led her to a nursing home or a death in the ICU. Instead, she died naturally the following September, a month after a heart attack.

The memory of her last weeks under hospice care continues to enrich my life. She'd been an uber-homemaker: competent, perfectionistic, self-reliant and far more skilled in caring for others than in accepting help. Yet the dependence she'd dreaded released in her a sweetness, acceptance and wisdom that I'd never before known. She had time to say goodbye to me, and to urge me to "cherish" my long-time partner, Brian. "I love him for what he's done for you," she said.

In the hour of our deaths, most of us will yearn not to cut short our time but for a "soft technology" of compassion, caring and interpersonal skill. We will want to give someone our last words and final blessings. We will probably hope to have someone we love at our side, to be forgiven for things we regret and to be remembered. To truly die with dignity, we will need good nursing, practical support, pain management and kindness. All should be better reimbursed by Medicare.

Liberalising aid-in-dying laws need not preclude any of this, but it will not alone supply it. Dying rarely lends itself to workarounds. It is a messy, nuanced, unpredictable, deeply human, labour-intensive ordeal, and for most of us, it will always be so. It may involve suffering and take time. We need to get honest about this, and pay decently for it.


A version of this article appeared in the print edition of The Straits Times on July 13, 2015, with the headline 'What people need in the hour of death'. Print Edition | Subscribe