The unbearable weight of dying

Some people facing death want to fight it at all costs.

Some want to choose the time and manner of their exit. There is a third way that allows the dying space to die - with kindness.

The conversation with N began tentatively. A congenial man in his 70s, he was recently diagnosed with inoperable pancreatic cancer and was receiving radiotherapy.


ST ILLUSTRATION: ADAM LEE

By then, he was wasted and could hardly eat, hence his admission to the community hospital. Quite feebly, he told me what had happened to him - he was dying. Struck by his calmness and candour, I asked for the source of his fortitude. He seemed amused but nevertheless obliged: "My children have grown up… nothing to worry now… it doesn't matter."

A tear descended. That was it; there was no need for a complicated explanation. When asked what would be important for him, he inquired if the end would be painful and whether he could go home soon.

Maintaining life is obviously not wrong but knowing when to stop can be tricky. At some point, the burden of interventions required to maintain a failing system just doesn't translate to the meaningful life that is desired... Ironically, so much of life is used to fend off dying that little is left to live with.

N's response to his own dying was neither unique nor uncommon. Unencumbered by the frenzied commotion that often surrounds dying, many can face death in a simple and profound way. But how we have been deeply touched by the experience of dying determines our stance on dying. From the impassioned discourse in the recent press and televised ads, we may discern three key positions shaping opinions on dying.

Three approaches to dying

•MAINTAIN LIFE AS MUCH AS POSSIBLE

The first position is to do as much as possible to maintain life. The sanctity of life is usually invoked by its proponents, and many also cite anecdotes of how "not giving up" had paid off. Doctors have traditionally counted significantly among its supporters, as upholding life is a key professional ethic in the medical profession.

•EUTHANASIA

The second position maintains that one should have the option to end the suffering of dying by such means as euthanasia or physician-assisted suicide. It asserts the principle of autonomy and right to self-determination and believes that nothing can address the suffering, meaninglessness and loss of dignity during dying. By permitting the natural dying process, hospice care is similarly perceived as not alleviating the purposelessness of dying.

•HOSPICE CARE

Then we come to the third position described by some writers - hospice and palliative care.

Denying death

At first glance, the first two positions - maintaining life for as long as possible or choosing euthanasia - seem like opposites. But from another angle, both represent attempts to avert the experience of dying, either by trying to postpone dying, or avoiding dying by ending life. But some may ask: "So what's wrong with that? Aren't the pursuit of happiness and the avoidance of suffering normal?"

While this contention sounds valid, one wonders if either of these positions actually results in more happiness and less suffering.

Maintaining life is obviously not wrong, but knowing when to stop can be tricky. At some point, the burden of interventions required to maintain a failing system just doesn't translate to the meaningful life that is desired.

To some, this simply amounts to prolonging death.

Moreover, stories are aplenty of families depleting their savings, taking loans, selling homes and subverting entire ways of life to seek the elusive cure. Ironically, so much of life is used to fend off dying that little is left to live with.

And when the inevitable happens, some may feel "they have tried their best", but others are left with regrets of a failure position - "if only we had more money "; "if only she was strong enough for another round of treatment"; "if only we had more time..."

There is always one more thing that could be done and no shortage of people who can suggest something else.

And how would we face ageing with the prospect of liabilities to us and our families? And how would this change caregiving?

Likewise, the seemingly private decision to end one's own life is also not exempt from significant consequences. In the aftermath, some caregivers may still feel responsible. Would people who had grown old, infirm, or disabled be obliged to request death because this is now a socially sanctioned way to save yourself and your loved ones from disaster? And what should we say about the suffering of those with mental disabilities or dementia who could not decide for themselves? More pertinently, to live in a society that believes that the only way the old and sick can find relief is to end their lives is singularly tragic.

Why dying is so painful

But why is the dying experience so unbearable? First, the aspect that most people dread is the suffering of symptoms from the terminal disease. Second, many struggle over the suffering of the changing "self". This often involves physical function, roles, meaning or identity which we hold as uninfringeable.

For example, if we hold ourselves as that strong, independent and in-control character who rules the office or the house, then finding ourselves needing and relying on others may lead to shame, outrage and meaninglessness. It is incredible how hard people can be on themselves for not being able to eat more, walk, work, and get well, even as they lie dying.

The third area of suffering is that of separation from others. An immensely painful aspect is the separation from loved ones.

Another more sinister aspect is the alienation and isolation that comes with dying. By considering the healthcare institution as the proper place for dying, we have inadvertently "medicalised" dying.

Dying has become a meaningless disease which must be eradicated or conquered. Moreover, we have lost our familiarity with dying and the care of the dying, which only accentuates our fears and helplessness. It is perhaps not so coincidental that the first two positions to dying discussed are essentially medical solutions.

The hospice promise

What of the third - hospice and palliative care?

Is this really the panacea?

That depends. The hospice and palliative care movement had wanted to address the holistic needs of the dying, and it notably made remarkable advancements in addressing the distressing symptoms of dying.

But the pioneers in the field had long warned against the dangers of medicalising death and the "routinisation" of palliative care.

Following the earlier discussion, if it becomes another medical approach that prescribes a certain way for people to die with a routine cocktail of medications, then it will sorely miss the point, whether the interventions are "evidence based" or not. It will be yet another attempt to compulsively fix dying out of our fears and bias.

But what hospice and palliative care have been able to demonstrate is how not pushing away dying and giving it a legitimate space have been beneficial.

Such a space is needed for the dying person and those around to hold their suffering just a little longer, so that they may find a way to live on.

But to even contain such deep suffering without any reactivity, what is required are a kind regard for all stances, and the willingness to hold suffering.

Clearly, such kindness and compassion must not be construed in lofty or sentimental ways, but as real acts which may neither feel good nor convenient.

It is, therefore, something that needs to be consciously cultivated and nurtured.

But we may start with two intentions:

•Be kind and compassionate to the self. The experience of dying is difficult enough. There is no need to judge ourselves harshly for what we could not do, had not done, did not achieve, or will not be able to do, as a dying person, as a caregiver and as a medical professional. Anyway, what exactly do we need to cling on to and not let go when death approaches? Like N, we can keep things simple by sticking with the essential things.

•Be kind and compassionate to others. What goes around comes around. To imagine that we can go solo in the path of life and dying is unrealistic and indeed painful. Knowing that we will also die one day, we can start to do for others what we would like ourselves to experience.

We need a community to create the spaces that will contain the suffering of the aged, infirm and dying without marginalisation or estrangement. It won't be easy or quick, but this may be what will eventually save us.

One act at a time, starting now till we die.


•The writer is a senior consultant in family medicine, and palliative medicine physician at Bright Vision Hospital.

A version of this article appeared in the print edition of The Straits Times on August 22, 2015, with the headline 'The unbearable weight of dying'. Print Edition | Subscribe