How Palliative Care and Disaster Risk Reduction reinforce each other
– Mr Harsh Vardhan Sahni, Washington DC, USA
I’ll call this friend Sneha. Her wedding was my last big celebration before the Covid19 lockdown. Friends and relatives showed up wearing their finest, danced into the night, did it again the next day, and the next. I realised how wonderful these ‘ice-breakers’ were to get to know the spouse’s family. I met the groom, his siblings, and wanted to congratulate his parents, but couldn’t find them. I learnt from Sneha that her mother-in-law, or Aunty, as we endearingly call elder women in much of India, was severely diabetic and needed to be dialyzed at home for 12 hours a day. Her devoted husband had been a loving caretaker for years. They briefly joined for the main ceremony before leaving for their home in the suburbs. I was mentally ticking boxes in a public health checklist; medical care available – check, accessible – check, affordable – for this family check, and above all loving homecare – double check.
Aunty died within a few months. Early days of the lockdown prevented the family from transporting a simple dialysis equipment from one suburb to another. The equipment roughly cost what Sneha and I would spend on a coffee during a work break. This loss close on the heels of a big family celebration was unnecessary, preventable, and above all, tragic.
I didn’t realise that this memory of someone I fleetingly saw was so embedded within me till I sat down to write this piece. Upon reflection, I think this stems from a frustration that her death wasn’t counted among the Covid casualties. We know the official numbers of people who died of Covid19 in most of the world. Almost none of the news reams, including ones disputing these figures, were talking about Aunty. While millions died of Covid19, we haven’t given due attention to people who died or developed preventable medical conditions because of Covid 19.
13 October was the International observance of Disaster Risk Reduction (DRR) Day. My news feed the past few weeks has been occupied by a new colossal disaster almost every week. As I am writing this, there is a heartbreaking war unravelling in the middle east. These news and images have replaced the recent earthquakes in Afghanistan and Morocco, floods in Libya, heavy rain induced destruction in Sikkim, Himachal Pradesh and Vermont, ethnic violence in Manipur. I can keep going.
Watching neighbourhoods being bombed to rubble in Gaza right now, I am alert to the numbers of killed and injured. However, my mind is drifting to the many Aunties who will not be killed from a bomb, but will die anyhow without a basic necessity that they could have taken for granted until recently. These deaths will not be counted among war casualties.
The Sendai Framework for DRR (2015–2030) focuses on prevention, calling for resilient systems so that ‘no one is left behind.’ Covid 19 was a disaster for many reasons. Perhaps none of them bigger than the disaster of mismanagement, leading to global calls for resilient health systems. Like disasters, preventable health conditions ought to be checked, but this might not always be possible. Resilient systems can occasionally prevent the bad, and always keep it from getting worse through holistic and timely management. There are established ways of doing this.
Tuberculosis (TB) killed about a quarter of the adult population of Europe in the 19th century. Like the disasters mentioned above, TB wasn’t always preventable or curable, but patients could be treated better. Edward Livingston Trudeau, founder of the TB sanatorium at Saranac Lake in New York, eloquently summarised his approach towards patients as “To cure sometimes, to relieve often, to comfort always.”
Today, people affected by disasters past the point of prevention deserve Trudeau’s compassion. I see news rightfully focussing on overflowing hospitals in Gaza right now – cure sometimes. Not all those affected by an attack will make it to hospitals, not all those who make it will be cured, but their and loved ones’ pain and suffering can be palliated – relieve often. Then there are those facing imminent or slow deaths, for whom medical care will not be available, affordable, accessible or useful at their stage – comfort always.
Universal Health Coverage (UHC) includes health promotion, disease prevention, treatment, rehabilitation and palliative care. I am thinking what could we do to relieve and comfort those who are past the point of cure; Aunty when she received the equipment too late, people who’ve been maimed or developed other chronic health conditions from the bombing, people whose preventable conditions have become chronic due to inaccessible healthcare, people who’re slowly dying with suffering that is deep but not bloody or fast enough to make it into the news and statistics. Importantly, I am also thinking what could we do for Aunty’s husband, who’s mental health deteriorated after losing his beloved partner, and all those loved ones who are suffering with the people injured or killed by bombs.
Palliative care looks beyond the veil of prevention and treatment to relieving serious health-related suffering for patients and their loved ones. It is holistic as it focuses not just on physical, but also psychological, social and spiritual needs. It makes systems resilient, especially when communities are engaged. It is estimated that globally only 14% of patients who need palliative care receive it. In countries like India, this figure is under 2%.
The past few weeks have shown us that we need to prepare because we cannot prevent, relieve because we cannot always cure, comfort always because modern medicine has its limitations. Disasters affect more than one’s body, it’s imperative to also address psychological, social and spiritual suffering. The adage goes ‘no man is an island,’ it is also necessary to support and comfort loved ones who suffer alongside the ill and injured. Lastly, communities ought to be engaged for health systems to be truly resilient.
The World Health Organization (WHO) underlines palliative care as a human right and a global ethical responsibility. The WHO Director General recently called on all countries to expand access to palliative Care as part of their journey towards UHC. Let us do our bit by building and sharing awareness as citizens, demanding services from health systems as patients and families, and providing and enabling services as healthcare providers and administrators. Working together will ensure Aunty and her family live better lives, and when the time comes, die peacefully.
About the Author:
Mr Harsh Vardhan Sahni worked on public health in India for about a decade, focussing on health systems strengthening. He currently works with The World Bank in Washington DC. Views expressed are personal, and not representative of any organization.