Growing up, in the mornings before school my father used to say ‘we don’t live once, we die once so you better wake up with the birds and make the day count a million times!’: a strange thing for a practicing Hindu to say if we consider reincarnation in that sentiment.
In the context of the times we find ourselves in and with over 33 million global Covid-19 cases and one million fatalities this year, death and infectious disease has very unfortunately been front and centre in all our lives. Who knew we’d grow to be so interested about the daily death rates of a virus that initially seemed to affect those so far away and removed from us, until it gradually moved closer to hold hostage our own ‘quality of life’ in the best case scenario, and take away our loved ones in the worst?
When we are confronted with a health challenge that makes us realise that we are mortal beings after all, we are forced to examine the quality of our own lives and our relationship with it.
Quality of life is a term we throw around daily in the world of healthcare. The World Health Organization defines Quality of Life as an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept affected in a complex way by the person’s physical health, psychological state, personal beliefs, social relationships and their relationship to relevant features of their environment.
Science and medicine have given us the extraordinary power to push against the limits of our biology and extend, repair and better our life. However, our ability to survive (since our bodies will ‘give up’ one day) is finite. Paradoxically, in this quest for survival, especially when we get sick, there is often an infinite collection of experiences, stories, and aspirations in every person’s quality of life we are trying to extend with medical help. But all aspects of healthcare should be about more than just survival. It should be focussed on wellbeing and identifying the reasons of why we want to hold onto life. Recognising that palliative care can be a little more nuanced, the focus for medicine needs to be broader and more personal as how we live is often determined by how much time we believe we have left at our disposal and that time is different for everybody. After all, the burden of any illness manifests in different ways for different people.
Generally speaking, we are all too often desensitized to deaths and tragedies around the world until they happen closer to home. The pandemic has brought us closer together and made us redefine what quality of life means for us personally, medically, socially and societally. Ultimately, it’s not just a matter of life and death, it’s the story we are creating and recreating and want to keep writing even when we get sick. Our quality of life focus needs to be more encompassing in healthcare. As American surgeon, public health researcher and writer Atul Gawande perfectly captures in his book Being Mortal: Medicine and What Matters in the End…
“…In the end, people don’t view their life as merely the average of all its moments—which, after all, is mostly nothing much plus some sleep. For human beings, life is meaningful because it is a story. A story has a sense of a whole, and its arc is determined by the significant moments, the ones where something happens… A seemingly happy life maybe empty. A seemingly difficult life may be devoted to a great cause. We have purposes larger than ourselves.”
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