'I Don't Care How Much It Costs. Please Save My Mum'

'Doctors feel they have a duty to prolong a heartbeat at all costs.'
'And a son or a daughter feels, I can't let my mum die. I have to save her at all costs.'
'They think saving is just prolonging life. But the person suffers.'

What is a Living Will?

A Living Will is a legal document that details the type and level of medical care an individual wants to receive if they are unable to make decisions or communicate their wishes when care is needed.

I have to start this article on Living Will on a personal note.

After my husband was diagnosed with metastasised Stage 4 cancer and in the next five months, we discussed death many times.

I then promised him that I would not put him in an ICU or a ventilator, and that I would take care of him at home.

The concept of a Living Will was unknown a decade ago. So, I could only give my word to him that I would be with him when he left the world.

The day he breathed his last, I was with him, holding his hand and talking to him. Our son was there. So also his elder sisters, my mother, my siblings... We gave him a very emotional but loving farewell.

In the one week when my husband was bedridden, one person who gave me the maximum strength and support was Dr Rajagopal of Palliam India. He had also arranged palliative care for my husband at home.

Known as the father of palliative care, Dr Rajagopal was instrumental in setting up India's first palliative care unit, the Institute of Palliative Medicine in Kerala, in 1993 when not many in India had heard of palliative care.

Even WHO passed a resolution integrating palliative care as a part of healthcare only on January 23, 2014.

The first assignment I did a month after my husband's death was following Dr Rajagopal around while he was taking care of his patients who were very sick and on palliative care in the interiors of Kerala.

As I travelled with him, we spoke on many issues but one thing he said, refused to leave me even today.

"When I fall ill, the doctors and nurses treating me will consider me a human being -- and not only look at my coronary arteries -- but try to understand what I feel. I hope they will care for my family too.

"&I hope that when I go, I will not be shut up in an intensive care unit, but instead have someone who cares for me sitting beside me, and maybe holding my hand. It would be the ultimate cruelty if I have to die in an intensive care unit with tubes in every orifice and masked creatures working around me.

"If I were to get disoriented and delirious, my hands and feet may be tied up. I am looking for a world where this kind of intensive cruelty does not happen anymore. I hope for a world where healthcare is delivered with compassion and empathy."

Today, he is trying to initiate a conversation on the need to not trap dying people in the ICUs and on ventilators.

He is also trying to educate every adult about the need to write a Living Will.

I asked Dr Rajagopal why we are scared to talk about death, and why it is necessary to write a Will so that every individual can have dignity in death.

"It is essential to have conversations on death and dignity in death," he says.

"In India, a study shows that almost 70% of people are continued on their life support systems and their dying process is stressed out over weeks or months," adds Dr Rajagopal.

Years ago when I interviewed you, you had spoken about the lonely death many terminally ill patients had in the ICUs. Today, there is a discussion going on about Living Wills through which people can say, they do not want to be trapped in the ICUs in their last moments.
Why do family members agree for ICUs and ventilators for their sick parents or anyone that matter? Is it guilt?

This is happening more and more, unfortunately.

ICUs and ventilators have become socially accepted now.

The first reason why this is happening is, the medical profession thinks it is their duty to keep the heart beating, what they call sustaining life.

We, as doctors take a vow that we will sustain life as much as possible. So, to doctors, sustaining life is equivalent to sustaining the heartbeat, and not life in the full sense.

But this doesn't happen in the Western European countries where it is a bit more rational.

A recent study shows that in the EU countries, if the disease becomes no longer responsive to treatment, and if the person doesn't have a reasonable chance of coming back to good quality of life, they are withdrawn from life support systems and given palliative care.

But in India, a study shows that almost 70% of people are continued on their life support systems and their dying process is stressed out over weeks or months.

This has no ethical justification because it only prolongs suffering. It is not only a question of loneliness but there is physical suffering also.

This misguided feeling that they have a duty to prolong a heartbeat at all costs, doctors started recommending it. And a son or a daughter feels, I can't let my mum die. I have to save her at all costs. Thus, they also become party to it.

There is an element of guilt that comes in especially when they are living farther away and not there. So, guilt is possibly a factor.

They tell the doctors, I don't care how much it costs. Please save my mum.

They think saving is just prolonging life. But the person suffers.

Do you see this happening more often these days?

I see this happening more and more.

This was not there a quarter of a century back.

In those days, intensive care was for people whose life could be salvaged, who could come back to a reasonable quality of life.

As a doctor involved in palliative care, do you try to make families understand what they should do to give better quality of life to the person who is in the ICU and suffering all alone?

This is an important thing that we do.

But this conversation should start early, when we are healthy.

When the joint family system was in vogue, young people grew up seeing their grandparents or grand uncles or aunts dying.

They also saw cattle dying, hens dying.. death was common place.

Not anymore. In nuclear families, young people don't see death.

The 2022 global report of the Lancet Commission says we are becoming death-illiterate societies. The report said, we need to bring death back to life.(external link)

By saying, death back to life, they meant death had to be accepted in our minds as the inevitable consequence of life, rather than living a death-fearing life.

In India, it is anathema to even utter the word death.

It is even more in the eastern culture than in India. For example, in China, it is considered inauspicious to talk about death.

In fact, not talking about death is global.

Death-illiteracy is associated with the transition from joint families to nuclear families. As a consequence, when death happens, old people are alone.

The medical system also has become such that even when a person says that he doesn't want his father in the ICU, the doctor asks uncomfortable questions. So, the family submits to the hospitals. So, the situation is complicated.

Is commercialisation of medical institutions also a reason?

Yes. I cannot accept the word, health industry. I heard the word for the first time in the late 1980s.

When I became a doctor in 1970, I had not heard such an expression.

It was health service then!

All of a sudden, it became health industry.

We have to accept this transition. What does an industry want to do? Make profit.

People believe it's only to make profit that this is done.

I do believe that the mistaken beliefs of doctors' perception of duty of care to prolong life, plays a major role.

Also, the gradual public acceptance of the ICU as a place to die.

You spoke about death-illiteracy. Will the idea of 'Living Will' make people accept death as an eventuality?

If the medical system had accepted that they had to respect death as much as they respect life, if they had accepted death as an inevitable transition, a Living Will would not have been necessary.

If the duty of the healthcare system is my well-being, if it would not have prolonged my heartbeat at all costs, a Living ill would not have been necessary.

Unfortunately, the medical system is confused about its duty of care.

Hence there is no way for me to protect myself except make a legally binding document so that I do not suffer abuse from the medical professionals.

Are we not denying dignity in death when a person is abused this way?

The Constitution guarantees you a life with dignity. The Supreme Court has clarified that life with dignity includes healthcare.

In 2024, the Supreme Court also made a clarification that right to health includes right to palliative care.

I have a right to dignity not only in life but also in the dying process.

How do you make a Living Will?

On the Palliam India Web site, there is a section called End of Life Care (external link) where a Living Will format is given.

We have also answered all the questions concerning it.

You can download the Living Will document and customise it.

When the Living Will is attested by a Gazetted officer, it is a legally binding document.

The most important part of it is, talking to your family about it because whatever legal document you have made, doctors will not act against the wishes of the next of kin.

Your children will need to understand why you want it.

You are not wishing to kill yourself.

You are only asking for dignity in the final days or weeks of your life.

So, your family also has to be death literate. That's the most important part.

Are you seeing people make Living Wills?

I have not only seen plenty of people making Living Wills, I myself have made one.

More and more people are talking about it, and that's very good.

Almost every month, I talk to some local group or the other about it.

In the west, they have these Death Cafes where people talk about death and dying.

It started with some people talking about death in coffee shops, and when people overheard what they were saying, they joined the group. This led to the formation of Death Cafes.

In today's times when every sick person is sent to an ICU or tied to a ventilator, do you think every person should think about writing a Living Will?

Yes, everybody over 18 should have a Living Will as death is not necessarily a matter of old age.

Let's initiate more and more discussions on this, and make people death-literate.

Feature Presentation: Rajesh Alva/Rediff.com