Nature’s first green is gold,
Her hardest hue to hold.
Her early leaf’s a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.
— Robert Frost, 'Nothing Gold Can Stay'
No matter how golden, life, too, has to come to an end at some point. It will. After all, death is the only certainty in life. A constant companion, right from the moment of birth.
Death — or the ‘great equaliser’ — is where we all meet: the pauper, the rich, the strong and the weak. For some, the idea can be cold and scary. For others, as Kahlil Gibran famously wrote, to cease breathing is “to free the breath from its restless tides”. Or as Socrates declared, it is a “dreamless sleep”.
Since time immemorial, humankind has tried to fathom death, delay it and even find a way to become immortal. Ancient alchemists spent ages in search of the mythical Philosopher’s Stone, which could turn any metal into gold, and also help make the elixir of life.
Of course, they failed.
The quest to beat death continues even today. Now it’s modern science and technology that aid this quest, with many billionaires reportedly investing heavily in longevity projects.
And for ordinary people, the fight against death appears in other ways — expensive treatment, long ventilatory care, sometimes even against doctors’ advice, and often disregarding the patient’s quality of life.
However, in this battle against death, many forget the importance of dignity — a pleasant goodbye, a way to welcome death peacefully, fully prepared.
A salient point while talking about life and death is palliative care. Well, do not mistake, palliative care is not just about the ‘final stage’. It’s about improving the quality of life at any stage of a serious illness.
According to the World Health Organization, “palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.”
Dr M R Rajagopal, known as the ‘Father of Palliative Care in India’, says any form of palliative care — whether emotional, psychological or social — should begin as soon as treatment starts. And it should be available to both the patient and their immediate caregivers, which are often families.
“Palliative philosophy believes there is no situation where nothing can be done to relieve serious health-related suffering and improve quality of life,” he explains.
Whether the condition is curable or not, palliative care makes sure the person retains quality of life while reducing suffering as much as possible.
This is a key part of the general welfare and medical policy in several Western countries. Kerala, too, recently made a commendable move by declaring palliative care a universal right.
The government’s scheme is available to all bedridden people and those suffering from serious health-related issues in the state. According to data on the government’s universal palliative care portal, over 1.34 lakh bedridden individuals have registered for continued care.
Under the Kerala Care portal, patients, volunteers and NGOs can register to avail the service or to help provide care. The goal, according to Chief Minister Piniarayi Vijayan, is: “A social movement to ensure quality palliative care to all people and families requiring care, irrespective of rural-urban or APL-BPL differentiation.”
Hopefully, as society understands the need and importance of palliative care at any stage of life, it will also enable a healthy discussion about the topic most tend to avoid — death. Because, as WHO says, palliative care includes offering a support system to help patients live as actively as possible until death and providing bereavement counselling.
This means having difficult conversations about death.
“It is important for our society to discuss death,” Dr Rajagopal adds. “We, especially the current generations, are death illiterate.”
That begs the question: what is death literacy? It is the knowledge and skills needed to make informed decisions about end-of-life care and death. According to mental health and palliative care specialists, that means talking about death, the process of dying and loss.
“And this aspect should also be discussed alongside palliative care according to the situation,” Dr Rajagopal adds.
Often, in our state, bystanders — especially family members — forget that end-of-life care should be comfortable for the patient. “Dignity in death, just like dignity in life,” says psychiatrist Dr Mohan Roy.
“We all consider death as an end. And of course, no one likes an end. Instead, if we start taking death as a process, the way we approach it will also change.”
He stresses that a person deserves dignity in death, and this includes the awareness that prolonging life with artificial means — against medical advice — can be painful for the patient, who is alone in the ICU, with tubes down one’s body.
This can take dignity away. “Because we are just slowing the process of death by painful means,” says Dr Mohan. He is especially talking about family members and caregivers who keep their dear ones alive using ventilator support for months and years — again, against medical advice.
He recalls a case where a family kept a young man alive using a ventilator for years. “Are we looking at the son as an individual in this situation? Are we putting him through intense pain for our own sake?” he asks.
Death in an ICU, says Dr Rajagopal, is mostly “cold and lonely”. So much so that many patients, whether elderly or terminally ill, often worry about such an end. “Not many like being kept alive through such painful methods just for a brief time. Many therefore write up a ‘living will’,” he notes.
“A living will, or an advanced medical directive, is a legal and valid method that empowers the patient if they become unable to make decisions about treatments later. It protects the autonomy of the patient.”
However, in India, he adds, oftentimes families override such decisions and doctors are helpless and follow their direction, disregarding the patient’s wishes.
“The solution”, he says, “is simple.” Families should discuss death — be it donating organs, not resuscitating after the heart and breath stop, the
method of funeral, or even saying goodbye.
“One should talk to the family and caregivers while setting up a living will, explain your reasons to them. Otherwise, it will come as a shock to them later, when they are not prepared to deal with the aftermath,” adds Dr Rajagopal
He underscores that it is important to address the “anxiety about death in our society”, and for doctors to “discuss it with patients and caregivers”.
Palliative care, according to the global norm, should ideally include care for the families after the death of their loved ones — be it practical matters such as funeral arrangements, financial planning or bereavement support.
“Grief is something to be addressed. However, many of us consider it normal and ignore it while someone goes through immense grief. That’s why we hear stories of many dying by suicide shortly after the loss of a loved one,” Dr Rajagopal notes.
“There should be a support system in place — be it care provided by friends and families or psychological support — to manage grief. That way both the patient and their dear ones can prepare for the eventuality.”
There is indeed increasing online discussions about making the eventuality ‘positive’. Some call it the ‘Death Positivity’ movement.
The idea is basically spreading awareness about the benefits of openly discussing and learning about death and that planning can help with stress and better prepare for death. It also encourages documenting one’s end-of-life wishes, and making them known to the family.
“Isn’t it better to remember the good times spent with your dear ones rather than forcibly keeping someone alive by any means possible?” asks Dr Rajagopal.
“Travel with them if they wish to, complete their last wishes and, if possible, spend the last days together…. Isn’t that a good way to go, leaving behind good memories?”
Consider death as a natural phase of life, Dr Rajagopal smiles. “Death has a value,” he says. “If there’s no death, can the world exist? Don’t fear it. Instead, talk about it. Death is not a necessary evil, but something to be welcomed. That’s what I mean by death positivity.”
The bottom line here is to ensure one’s dignified passing. As a prayer way back from the Vedic times seeks — ‘anayasena maranam, vina dainyena jeevanam’, or ‘death without suffering, life without misery’.