Keep dying issues alive and kicking

End-of-life care and its quality among the issues a rapidly-ageing society must confront
By Han Fook Kwang, Editor At Large, The Sunday Times, 28 Sep 2014

Let's talk about dying.

You don't hear this very often because most people would rather not.

Yet death is such a colossal event in the life of any person, it's always been puzzling to me why so little discussion takes place, publicly or privately.

You know it's going to happen and that when it does it's, well, as important as life and death. So how come so few of us think deeply about it?

What exactly happens when one dies, what to do in the last phase of life, how best to prepare for the eventuality?

How far should one go to try and delay death?

The last question especially is one that many will have to face if they are stricken with some terminal disease and have to decide how much medical treatment to get.

Because of the advances in medicine and, aided by modern technology, there is much more that doctors and hospitals can do to prolong life even for the seriously ill.

But how much is enough?

I heard two opposing views on this question at a recent lunch with friends.

One argued for limited intervention, and to let nature take its course. In an earlier age, when medicine wasn't as well developed, people accepted readily the limits of science and technology in prolonging life.

His philosophy: put all your efforts into having a healthy life - that means eating healthily and exercising regularly - but when it's time to die, accept your fate and do so in a dignified and comfortable way.

He had seen too many cases of terminally ill patients subjected to treatment, some of which, like chemotherapy, can be unpleasant and distressing for both patient and family members, in the desperate hope of extending life by who knows how long.

But who decides when treatment ought to stop?

Another friend said letting nature take its course was best left to the patients themselves, and that they knew best whether they had the will to live or let go and give up the fight.

Dying patients do this all the time, she argued.

A mother waits till all her children have come to visit before taking her last breath. My friend had seen too many of these cases to know she wouldn't want to make the decision for anyone else.

Renowned eye surgeon Arthur Lim, who died last month, was said to have refused to go to hospital for treatment towards the end.

As a doctor, he would have known better than most how his illness might have progressed and what his medical options were. Facing death, he chose to exercise control over his own life.

In Singapore, the two organisations that have done the most to get people to understand better and talk about these issues are the Lien and Tsao foundations.

The former, especially, has done ground-breaking studies to highlight the need for improved care for the dying and create greater awareness of end-of-life issues.

In 2010, it commissioned the first ever global Quality of Death Index comparing how different countries deal with these issues.

Singapore was placed 18th overall in a survey of 40 countries.

One of the most interesting studies it produced, called What Doctors Say About Care Of The Dying, is based on physicians talking about their experiences dealing with dying patients.

Two major points struck me.

First was the role played by family members, which is a major issue with many doctors here.

Unlike in the West, the notion of patient autonomy - which is that patients have a right to confidential medical information about themselves and who has access to it - isn't well understood or accepted.

Instead, patients in Singapore prefer to let their family members decide on their behalf.

Indeed, family members themselves expect doctors to tell them first about the prognosis and treatment choices.

Many get upset if the doctors tell their ailing parents first.

As a result, doctors struggle with making decisions which are in the best interest of patients, and have to take into account family-related issues.

Any programme to improve care of the dying will therefore have to involve the family, complicating the issue even further.

The other big area where doctors had plenty to say was how Singapore's health-care system dealt with end-of-life issues.

Their conclusions?

Singapore does well in treating many illnesses but it isn't well equipped in managing patients at the end of life with longer-term needs.

There's a lack of coordination when patients move from one institution to another, say, a hospital to a hospice.

There's also inadequate effort to make it easier for dying patients to do what they want most of all - which is to die at home.

More needs to be done to provide social, financial and physical support, especially to informal caregivers, many of whom are family members who might have had to give up their jobs.

Doctors also saw a need to debate these issues openly and generate new ideas to solve the problems.

Trouble is, the living and able have little time and interest for death and dying.

Political leaders are wary of raising these sensitive issues for fear they might be misunderstood, and be accused of wanting to save costs and reduce pressure on the health- care system.

It takes a certain maturity and sensibility in society to be able to discuss these issues and reach consensus on how best to deal with it.

European countries such as Britain, Belgium and the Netherlands have had a head start, and developed the institutions and professionalism required.

Some people might find it abhorrent that euthanasia is allowed in some of these countries, and it's still a highly controversial issue.

But whether it is right or wrong, you have to admire those societies for being able and willing to debate the issues and reach a national consensus.

Singaporeans are some way behind the curve and need to catch up, given the rapidly ageing population and advances in medicine.

Ultimately though, it is up to individuals to make their own decisions and take control of the last phase of their lives.

It shouldn't be decided for them, whether by well-intended family members or institutions that have other interests to protect.

Let them have their final say.