You started a palliative care society in 1993, and the NGO Pallium India in 2003. Could you share the beginnings of your journey with us?
Right from my MBBS days, I have seen a lot of pain around me. My journey is the result of putting into practice what I learned. As an anaesthetist, I understood that by using the principles of anaesthesia, I can reduce people’s pain. However, their issues don’t end with that. An individual, whose pain I had relieved, ended his life that very night! He taught me a great lesson; I consider him among my gurus. We learn in MBBS about diseases, the body, and microbes; no lessons about humans. Patients should be looked after, fully acknowledging their limitations and issues. That’s palliative care.
What is the central purpose of palliative care?
Palliative care is not just about the end of life. Palliative care — whether emotional, psychological or social — should begin as soon as treatment starts. Palliative philosophy believes there is no situation where nothing can be done to relieve serious health-related suffering and improve quality of life.
What’s the right approach?
When a patient comes in, instead of mechanically taking down details, asking them whether they are in pain and assuring them of care make a lot of difference. Doctors should incorporate compassion, humanity, love, and empathy.
People often associate palliative care with only cancer patients...
Palliative care is wrongly assumed to be only for cancer patients, or for those who are about to die. Irrespective of the disease, the only criterion for palliative care is: how much of the suffering is health-related?
When should pain management ideally start – with regular treatment, or should one wait for pain to set in?
The World Health Organization had responded to this question in 2002, by redefining the definition of palliative care. They said it has to progress in tandem with treatment. The Patient must be given the care when needed, not when all treatment is over. MBBS students must be taught this. Every doctor and nurse should know how to manage a patient’s pain.
Why then is it not so?
You ask this because you are not a doctor (smiles). As doctors, we study only about diseases. Over the last century, we kept adding on to the health infrastructure. The term ‘healthcare industry’ was not heard of in my younger days; there was just health service. The industry has profit as a motive. There are many reasons.
We are a society that glorifies pain. Even labour pain is normalised...
Laughing at pain is a philosophical attitude, so long as the pain is someone else’s. When it’s one’s pain, the picture changes. In the case of labour pain, it is viewed as such since the discomfort is typically short-lived. In prolonged pain, the suffering keeps mounting. Pain is essentially protective, telling the body to run away. People who yell at women in labour, insisting that they endure the pain, fail to recognise that pain tolerance varies widely among individuals. It is barbaric to claim, ‘I suffered, so you must too.’
Is pain tolerance a reflection of mental strength?
Mostly. The difference is in how we react to the pain. Pain is defined as an emotional and sensory experience. Pain experienced by an individual in a supportive environment differs from those without it, because pain is also a mental creation. Pain perception changes according to the mental and social conditions of the individual.
Intense pain cannot be tackled with mental strength alone. The body keeps increasing the pain as a defence mechanism. Such pain cannot be tolerated. I haven’t seen anyone who can do that in my 30 years of work.
What are your views on euthanasia?
There is a 2023 Supreme Court verdict, according to which if one has written a medical directive or ‘living will’ in advance, it is valid, as per law. But what is not said in the verdict is about the empowerment of the decision-makers, because when the time comes to execute this wish, we may not be in a position to take the decision. A ‘living will’ is very valid. But if family concurrence isn’t there, it wouldn’t be practical. People should, as far as possible, make the will and have a conversation with family members. Nowadays, many people have not seen death at close quarters. The society we have now is death-illiterate. There is a need for death-literacy.
What is death-literacy?
Death-literacy is basically understanding death. We are growing to be more of a society that denies death, skirting the thought. We know it is invariable, but choose not to think of it. Death literacy isn’t the only important aspect. Most of us wish to cross the bridge only when we come to it. Those who love selflessly should think of the pain their loved ones would undergo before putting them through rigorous treatment, which may or may not succeed. But for this, discussions must happen first.
Isn’t social awareness about this important?
Of course. The doctor goes only by what the family finally says as a unit. No doctor would take a risk when the patient is on ventilator support.
Is this approach by doctors due to fear of risks?
There is bound to be fear of risks/disagreements. Only now has the topic been included in the curriculum. The situation is quite different in western countries. According to a study, in EU countries, if the chance of recuperation is very less, 89.6% of the patients are removed from artificial life support, put in palliative care, and allowed to move on seamlessly.
After discussions with relatives?
No, with the patient first. The discussion on advanced medical directive has to be started as early as possible. What the patient desires is discussed beforehand and recorded. The wish may change later, and even that is discussed. In Western countries, this discussion happens in a simpler fashion, as individual autonomy is more valued out there.
Why is it significant to communicate with a patient on a deathbed?
Exactly like the right to dignified life, dignified death, too, is a person’s right. The way someone dies is vividly remembered by the survivors. If it’s brutal/painful, it leaves a permanent scar in their psyche.
If a patient has terminal illness and may not be able to handle bad news, what approach should be taken?
Who determines whether the patient can handle the news? Ideally, we should engage in an open discussion with the patient. I begin by asking if they would like to learn more about their illness, while we consider treatment options. Some patients may signal that they are not ready to hear it. I may offer reassurance that they will be comfortable, even if a planned operation may not guarantee a cure. If they indicate readiness, I reveal negative aspects gradually, interspersed with positive elements of the treatment. Ultimately, it’s the patient’s right to decide.
Do you think the present hospital set-up denies people the right to die naturally?
A prominent person recently told me that the cost of dying ranges from Rs 25 lakh to Rs 75 lakh. This increase in cost came about only in the last 25 years. Present-day society believes that it’s the doctor’s responsibility to prolong life. Doctors believe their duty is to sustain life. For them, life is just a heartbeat. There’s social and religious pressure too. Unfortunately, the Supreme Court wrongly termed the removal of life-support as ‘passive euthanasia’. The document brought out by the ICMR highlights that a healthcare provider’s responsibility is to eliminate illness when possible, and in other cases, to reduce suffering and offer solace.
Could you elaborate on the ‘passive euthanasia’ part?
Terming withdrawal of artificial life-saving measures as passive euthanasia is a misnomer. The ICMR document has stated this, but the court deemed otherwise. A week after the 2018 court judgement, a big religious order issued a whitepaper saying it didn’t approve of the judgment, as euthanasia was against their belief. A wrong interpretation of euthanasia thus resulted in social antagonism. In palliative care, we don’t deliberately end a life. What we do is allow natural deaths.
Some religious beliefs allow opting for death without taking water or food…
Two sects of Jains and Prayopavesa in Hinduism say that when one’s responsibilities in the world end, they can opt for death – if permitted by religious elders – with food stopped in phases. Usually, this takes up to three months. In Switzerland and the Netherlands, some people opt for such deaths.
Do patients demand an end to their sufferings?
There are people who wish to die due to insufferable pain. Similarly, wives of two patients requested me to kill their husbands who were in terrible pain. The question is should I help alleviate their suffering, or kill them? Usually, nine out 10 who raise a death demand relent if we are able to reduce their pain. That said, only about 4% of Indians get access to pain management.
As a pain specialist, what is your advice: should we let the patient die peacefully or try everything possible?
I often fear that my own end may be in an intensive care unit. Having worked as an intensive care doctor for years, I know all too well how ‘comfortable’ the patients are! What would one want in the last moment of life? The ICU would be a very cold room, and my organs and those around me would be fitted to monitoring machines that would together send out over 100 bleeps per second on an average. People who seem ‘aliens in uniforms’ would flit around. There would be a tube down my throat, a hole in my neck. Is this what I need? Or do I need relief… people who love me, who can hug, or kiss me on my forehead? If I am scared, I need a hand to hold. Aren’t these more important? All these are being systematically taken away from me. Instead, I am given willful suffering. It is injustice… an assault on the person and a criminal offence, if seen this way.
Does the patient on the ventilator feel the pain?
Not if the patient is unconscious. But a majority would feel it.
The other side of the argument is about the desire to live...
There may be people whose thirst to live never wanes, even at 92 or 102. Will to live is not the same for all. Information regarding the disease should not be hidden from the patient. Usually, that is what happens. It is the right of the person to live, if they desire so, even after knowing the gravity of the disease.
Don’t life-support facilities play a major role in saving lives?
Life support should be given if there is a reasonable chance of the patient coming back to life with a minimum quality of life. But what about patients with metastatic cancer or those suffering from dementia for long? For them, life is already miserable. In such cases, the only benefit of putting them in ICU is to further stretch out their process of death. Similarly, suppose I am 92 and I feel I have lived my life, I can decide whether or not to be on a ventilator. That is my right.
Often, patients and families feel deprived of clear information about the final outcome…
It was only in 2019 that we introduced a topic ‘communication with the patient and family’ in the MBBS curriculum. I learnt the nuances of speaking and listening through my experience in palliative care, Many doctors previously relied on sheer instinct alone. Doctors must understand that sharing information is the patient’s right, and hiding it out of kindness can be detrimental. Timing is also essential in conveying information. Some patients may not want to hear the bad news immediately but will need it, once ready. Truth is a powerful therapeutic tool, but it should be given in the right measure, and at the appropriate time.
Does everyone fear death?
Most people fear death, but some people are mentally prepared to die. There is death-illiteracy and fear of the unknown. Even those who are prepared may get afraid when death hovers near.
Generally, what is the patient’s condition before death? What’s the most common wish people have before dying?
Just before death, a majority of people suffer from slight loss of memory, and later lose consciousness. Hallucinations can happen, but we give medicines to reduce it. People have varied wishes. Some would want to visit their primary school; some to die at home, as they feel connected to their own bed or a tree seen outside the window; some have a connection with God… Don’t some people go to Varanasi to die? Religions like Islam prohibit giving medicine to induce sleep during the dying hours, as they believe you must be conscious, while you meet the Maker.
Do people express regret?
Yes. Some people need to share something that is searing within them, which even their spouse or children don’t know. Some regrets spill out of guilt. There is no point in consoling them. We just need to hold their hands and sit with them. For some, legacy is important. A woman’s daughter was about to give birth in a few weeks. She just wanted to live till her grandchild was born. We recorded a series of voice messages to the unborn child so that the child could someday understand how much the grandmother loved him/her. Some wishes can be fulfilled. If not, just listen to those regrets and let them know we are around to listen.
Are there people who can sense their death?
Some elderly people say their time is up and they’re leaving, but they are few and far between.
Is death easier for people who believe in rebirth?
(Smiles) Logically, it should be, right? But I am yet to see someone like that!
Medically what’s death?
Until about 30 years ago it was very clear — breathing stops and pulse is lost. That’s death. But now with the brain death concept, it’s complicated.
What’s the impact of long-term contact that caregivers have with patients?
Their character changes. It’s termed as burnout or compassion fatigue; could be physical too. Men have less burnout, as they tend to discard such patients. When children are born with major defects, many fathers leave the family. After compassion fatigue sets in, whatever is done is mechanical, with no emotional input.
Can it be said that, sometimes, doctors extend a patient’s life through intervention, without considering the side-effects?
Such intervention enhances quantity of life, but not the quality of life. The doctor should honestly speak about the expected prolongation of life as well as the adverse effects of the treatment. It’s up to the patient to decide whether he wants to prolong life of a poor quality. There was a woman who told me she wanted to live till the 24th of that month, as that’s when her son was to return from abroad. Sadly, she died on the 23rd.
Sometimes parents hold back information from children who are in palliative care…
Conspiracy of silence is the real issue. The child knows there’s an issue, but doesn’t know what it is. Once honest information is given, they are usually much better at adapting. Very young children who don’t know that death is the final exit would ask whether they could come back and see their parents.
Children are better at accepting death than adults. Once a child was anxious about death, and wanted to know whether he would suffocate when buried. Another one kept asking whether God would punish him. If we face their questions honestly and help them, they are braver than adults.
You mostly work with people who are in despair. What gives you hope in life?
Our job is to give hope. There is no life without hope. If a daughter tells her mother that you have done so much for us, and now, you take rest, she is only validating the mother’s fear that she could be a burden. Instead, if she says, ‘Mom, I need you in my life’, she feels valued...a hope of not being left to die alone. I hope my end will be with those who truly care for me!
TNIE team: Cithara Paul, Anil S, K S Sreejith, Unnikrishnan S, Aparna Nair B P Deepu (photos), Pranav V P (video)