One of the most chilling memories of the COVID-19 pandemic has to be the way in which people who contracted the infection — especially in the first year of the pandemic — died in intensive care units, alone and scared.
The pandemic thus perhaps give a better perspective into the issue of how “overmedicalised” death has become and how increasing overreliance on medical interventions towards the end of life increases the suffering of the dying, as noted by the Lancet Commission on the Value of Death, in its report (https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)02314-X/fulltext) released on Tuesday.
“Two generations ago, the community rallied around the family of the dying, offered them all support and compassion and thus reduced the spectre of death into an acceptable, inevitable event, with minimal suffering to the dying person. Today, every person belonging to the middle class die a lonely, anxious death in ICUs, a tube down his throat and amongst an array of machines emitting beeps and sirens. The young doctors of the day genuinely believe that it is their duty to sustain life at any cost, while for the families, the prospect of death is so scary and unfamiliar that they would rather entrust it to hospitals . It is time we taught people to face death with equanimity, to allow their loved ones to die in comfort, with the support of the medical community,” M.R. Rajagopal, chairman of Pallium India and one of the members of the commission, told The Hindu.
“People do not know what to do and they do not have adequate support. If people can be offered proper end-of-life care guidance by doctors and palliative care services and support from the community, more families will be willing to focus on compassionate care for the dying rather than letting them go through aggressive and painful medical management,” says Dr. Rajagopal.
The Lancet Commission’s report points out that the current overemphasis on aggressive treatments to prolong life, vast global inequities in palliative care access, and high end-of-life medical costs have led millions of people to suffer unnecessarily at the end of life.
It has called for a compassionate community model, where communities and families work with health and social care services to care for people dying.
In this context, the commission acknowledges that small changes are under way and points to the example of Kerala “where over the past three decades, death and dying have been reclaimed as a social concern and responsibility through a broad social movement comprising tens of thousands of volunteers complemented by changes to political, legal, and health systems”.
The report points out that untreated suffering, vast inequalities, and aggressive medical treatments have come at a high cost and in countries without universal health coverage, can be a cause of families falling into poverty. One of the important recommendations in the report for policy makers is to make increased access to pain relief at the end of life, a global priority.
Networks of care must be there to lend support for people dying, caring, and grieving. Patients and their families should be provided with clear information about the uncertainties as well as the potential benefits, risks, and harms of interventions in potentially life-limiting illness to enable more informed decisions.
