As the pandemic recedes, some memories will not. One of the more terrible outcomes of Covid-19 was the isolation of those infected, often in a hospital ward, amid unfamiliar surroundings and with unknown people, without a loved one to touch, talk and comfort. For every death recorded as a pandemic statistic, many more were emotionally distressed, indeed torn apart. Families continue to live with memories that will haunt them for a lifetime, of not being present at the time of death of their loved ones.
But even before the pandemic, this kind of death, in a remote location, amid the cold steel of an ICU bed and away from home, has been invading society. It has, in fact, become so common these days that the Lancet Commission studied it and put out a report recently with the rather thought-provoking title: The Value of Death.
The report said: “Death and dying have moved from a family and community setting to primarily the domain of health systems. Futile or potentially inappropriate treatment can continue into the last hours of life. The roles of families and communities have receded as death and dying have become unfamiliar and skills, traditions, and knowledge are lost. Death and dying have become unbalanced in high-income countries, and increasingly in low-and-middle-income countries…”
What Lancet is bringing to light is precisely what palliative care teams have been struggling to highlight –- that a highly medicalised death, a lingering push by modern technology and specialised and skilled doctors mandated to “do everything”, often means prolonging the inevitable. This comes at a huge cost not only in terms of medical bills but also in terms of the comfort of the patient. It robs the dying and their loved ones of dignity and of opportunities for quiet moments together, reflections, apologies, blessings and the peace of having been close as they part forever.
The critical prerequisite for all this to happen is the ability to accept death as the inevitable consequence of life.
We had this ability, not too long ago. As recently as two generations back, people used to be familiar with death. People used to die in their homes. Elders were familiar with the signs of dying, the changing nature of breathing, the limbs getting cold, and sometimes rattling in the throat. Extended families used to pray together, achieving not only some spiritual solace, but also experiencing togetherness and the value of a fond farewell.
This has changed and is changing for more and more people. It makes for a paradox in the modern medical system, as pointed out by the Lancet report, which noted: “While many people are overtreated in hospitals with families and communities relegated to the margins, still more remain undertreated, dying of preventable conditions and without access to basic pain relief.”
"The unbalanced and contradictory picture of death and dying” tells the tale of a society lost in modern medicine and unmindful of where this is taking us. It turns death into a scary prospect and makes for not a happy way to go.
The change from dying at home to dying in a hospital has been swift and is of fairly recent origin. Even in the 1990s, intensive care was meant for those with a reasonable chance of getting back to a reasonable quality of life. That changed. Healthcare became the healthcare industry. It became high-tech. The industry created protocols. If the oxygen saturation or the sodium level drops, as it inevitably has to in a dying person, the person is to be shifted to the ICU. This, of course, means separation from the family. The person is covered with tubes so that even during the five minutes of entry into the ICU, the family is afraid to touch the person. There is no longer any healing touch nor any healing words that the family can carry as memories for the rest of their lives. The grief leaves raw wounds which never heal, particularly affecting the emotional health of adolescents and children.
There is, of course, no question that what is treatable needs to be treated. Hospitalisation cannot be ruled out as a norm -– that would be disastrous. But it does call for a careful assessment of the health condition of the patient so that the hospital is not the unconsidered, natural and inevitable destination for everyone who is ailing and has little time left.
The Lancet report discusses the importance of human connections and community involvement during the time surrounding end-of-life. It discusses in depth the consequences of irrational over-medicalisation of death which has already been normalised by the medical system during the last quarter of a century. The proposed solutions are many, but fundamental to them is the need for discussions within families and communities. The commission lauds the palliative care networks of Kerala which support people dying, caring and grieving, and calls for conversations on death, dying, and grief.
These are difficult conversations. Not all doctors are equipped to help or advise here. Only well-trained palliative care professionals can respond effectively by looking for a balance and guide family members, who themselves would be in a state of confusion and struggling to respond and cope with the situation.
Rather obviously, the value of time increases dramatically when someone suffers from an incurable disease. Compared to a young person with a reasonable chance of living to a life of average expectancy of 70 years, every hour is so much more precious for the person with only days, months or years to live. At this stage, any life-prolonging treatment has to be balanced against the quality of life.
The person has to be treated for pain and any other distressing symptoms and made comfortable with palliative care. Anxiety, depression, anger, guilt or other emotional issues need to be brought out into the open and resolved. The person’s time needs to be filled with love, dignity and meaning.
As one of the writers here (M R Rajagopal) who has contributed to the Lancet Commission report writes in that document, death is not always benevolent and beautiful. "When the physical suffering in people with diseases like cancer was extreme, no philosophising, compassion, or companionship helped enough. The suffering was excruciating. People just stood watching helplessly…(yet) the dying person and the family members were never alone in their suffering or grief.” Pain relief comes from palliative care, but comfort comes from family care. These are lessons that can hopefully be taken to heart and can spread across India, where the Covid-19 pandemic has highlighted the horrors of separation at the time of death.
(Dr M R Rajagopal is Chairman of Pallium India and Director of the Trivandrum Institute of Palliative Sciences. Jagdish Rattanani is a journalist and a faculty member at SPJIMR)