Part 2: The race towards death

Soles hitting rubber, the racer pushes forward. Each ragged breath propels them forward by a step and their vision is filled by the colour of red mat and white lane lines. Forward, forward they need to keep moving forward.

When it comes to illnesses, instinct tells us to throw every last card in our hands down, to step in with our guns blazing to avoid paying the price for inaction. We’re driven by the fear that inaction leads to harm, that simply watching is a betrayal of our duty to the sick. Primum Non Nocere: First do no harm. It’s the guiding light for practitioners and a glowing ideal for medical hopefuls. I thought as much when I was younger, filled with fanciful dreams of stopping death at the door. And yet, the more I see, the more I question, wouldn’t clinging on to a mirage of life rather ironically end up causing great harm to both patient and practitioner?

Where once practitioners only had to deal with discussing life and the extension of it with their patients, we’ve now reached a wall where there are times when the physician is no longer able to cure the ailment. There are times when they can sustain breath but not conscience as we know it. They might sustain nutrition but not movement that should result through such sustenance. It’s a confusing jumble of states that often leaves me wondering what practitioners aim to achieve through this intervention. In fact, this question probably haunts our doctors much more than we can imagine as evidenced by the increasing body of personal recounts by doctors on the growing number of dilemmas they’re being forced to face. Imagine the pressure on the physicians agreeing to provide ‘comfort care’ to former first lady Barbara Bush upon her insistence. The term itself seems loaded with bitter repulsion, conjuring images of a defeated warrior, of machines unplugged and all hope lost.

That’s hardly doing the treatment course justice. It’s good that with such high profile cases and more vocal doctors and healthcare professionals, discussion about palliative care is becoming more mainstream. Yet the take up rates are still dismal, doctors averse to raising the d-word with their patients. There are a whole host of reasons for this, from cultural norms to personal duty and obligation. That doesn’t excuse why as a society we shouldn’t discuss the problems that are bound to arise or aid doctors in reconciling these seemingly conflicting roles we expect of them.

As I once heard, “It’s never the right time till it’s too late.”

~*~

In, out, in, out. A few more steps. What’s this? As each laboured breath carries the racer on, it seems as if they’re back at the starting point, the same trees, the same lane markings. Someone calls out, “1 more round!”

On paper it all seems easy. The aim of any treatment offered should be to better the quality of life and to allow patients to make the most of what they have. But paper has a tendency to be 2D, flattening out the multidimensional problems and nuances that come along as baggage with this statement. Here at home, possibly because of the practical nature of our people and the system of payment for treatments, I never felt this overarching push to extend life by all means. This is on the contrary to the recurrent theme of problematic, excessive intervention in Western literature, through books such as Atul Gawande’s Being Mortal and Henry Marsh’s To do no harm. It reduces the pressure when broaching alternatives that may not necessarily prioritize life extension but the quality of it. That said, there remains an unspoken grey area on exactly how far we should pursue treatment. At what point can we deny the provision of further treatment?

This is a discussion meant not just for healthcare practitioners but for the general public as well. When the Singapore Bioethics casebook was first released, it was a huge step forward for generating discourse amongst doctors and nurses. It was a much needed repository and manual for practitioners to refer to in adjusting their own decision making calculus. That said, ensuring that our healthcare professionals know what to do is a necessary but not sufficient condition. They need to be empowered to act on it and this requires the support of the people whom they treat.

~*~

The racer could hear the sound of feet padding down the track not more than a few paces behind. It was a shadow that seemed to be drawing closer, the fingertips of an outstretched hand brushed against the racer’s back. Why hadn’t the marshal called out the foul? Why wasn’t he cheering the racer on?

When my grandfather slipped down a flight of stairs and broke his hips, my dad remarked that this was likely the beginning of the end. As dramatic as he sounded then, it wasn’t wrong. With his mobility limited, my grandfather rarely left the thin mattress he slept on. Bed sores began to develop, his colon and rectum lost all function and his uncontrolled diabetes meant even the smallest wounds easily began to fester. This was 2015 India. If there were other possible treatments to pursue, the doctors didn’t bother to suggest it.

Less than 6 months later, he drew his last breath, murmuring about how he could finally meet my grandmother after 2 years.

Had the doctors suggested better insulin administration procedures or replacement surgeries for his colon, he might have lasted longer. Yet, what I also remember is how much my grandfather hated hospitals (too expensive and bad food he would complain).

The question first and foremost in a physician’s mind is ‘what can I do?’ with regard to the treatments to be administered, even if in principle it’s their patient’s preferences and not just life preservation that should define the end goal being worked towards. It always seems more sensible to play safe. Better safe than sorry it’s said and so it seems the preservation of life keeps more doors open as you progress. Slowly we’re beginning to realize that the converse might be true. As we pursue treatment after treatment, the point at which the line must be drawn to take your feet off the accelerator becomes blurred. It seems to me that understanding this reality should be of utmost importance before agreeing to or proposing a procedure to avoid needless heartache for all involved later on. So perhaps the doctors in India were wise to have avoided suggesting alternative treatments for my grandfather after all.

~*~

As the road marshal, you watch the incoming racer stagger forward. Without a doubt, they were about to be overtaken by the one behind and it was about time you called an end to this race. But you hesitate, the whistle held against your lip.

With the exponential growth of tissue engineering and surgery techniques, the number of artificial organ replacements we might be able to carry out seems limitless. This raises an uncomfortable dilemma as voiced in the book Beyond Human by Eve Herold. If these artificial organs are the main reason for a person’s life to persist, would switching it off amount to physician assisted suicide (PAS)? At first, I assumed that this would be no different from a ventilator or the provision of artificial hydration and nutrition. But in the case of an artificial heart, where the absence of a heartbeat is still used by physicians to pronounce death, switching off the artificial device would instantaneously kill the patient. It seems an almost cruel joke however for a patient to continue living in distress purely because the artificial heart continues to beat. Such situations will only become more prevalent as such assistive devices become deeply intertwined with our lifestyles in our final years. Instead of being reactionary in our actions, perhaps we should carefully consider and lay out clear guidelines on how to handle these situations before the issue swells into an uncontrollable flood. It might be necessary for us to instate legal protection for doctors to be allowed to make such decisions as turning off assistive devices where needed to empower them in making the more humane decision. Better public awareness and engagement would also be vital in ensuring the physician’s decision is not misunderstood as a form of euthanasia or PAS by family members and loved ones. Having a well-informed patient and doctor means that they begin on the same page in order to act in the patient’s best interests.

As life expectancies creep up and our model of old age evolves, so must our conversation on healthcare towards the end. There are still many areas that we’re just beginning to tease open, Pandora’s boxes that we have yet to unveil. Many liken chronic or terminal illnesses as a race around a circular track, the physician a lane marshal guiding the patient along. If that’s the case, the successful end of the race relies on the consensual agreement between both doctor and patient.

~*~

As the racer approaches, you reach your hand out as the shrill whistle continues to echo in the air. You guide them to the benches by the side, seat them and pat them on the shoulders. It’s been a long race but they’ve completed it well. Though you’re just a guiding lane marshal but it’s hard to deny the sense of pride tingling at the tips of your nerves as the racer looks up to you and smiles.

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