Who Gets to Decide What Happens at the End of Your Life?

[From Unsplash/Aziz Acharki]

For years, conversations about death in Indian homes have lived in the shadows—avoided, postponed, treated as inauspicious. End-of-life care, meanwhile, is often painful, chaotic, expensive and emotionally overwhelming. Families decide “what’s best,” feel compelled to try every possible intervention, and financial dependence frequently gives children the final say in a parent’s medical care.

The idea that an individual could make these decisions for themselves—and that the medical and legal system would respect those choices—barely existed.

That’s what makes the rise of dedicated Living Will Clinics so significant. A living will, legally known as an Advance Medical Directive (AMD), is a written document through which a person records their preferences about life-sustaining treatments—such as ventilators, feeding tubes, or CPR—if they are incapacitated and unable to communicate. AMDs apply only in cases of terminal illness or an irreversible vegetative state. They guide doctors and families so they are not left guessing or battling over what the person would have wanted.

Importantly, an AMD does not imply physician-assisted suicide or medical aid in dying, both of which remain illegal in India.

Still on the fringes, AMDs are often misunderstood. They sit at the collision point of deeply held emotional instincts, traditional family dynamics, physician discomfort, and a healthcare system that is only now beginning to embrace patient-centred end-of-life care. Yet they also mark a profound shift in India’s medical ethics.

The Cultural and Emotional Collisions

In India, older patients often lack autonomy. They depend on their children for insurance and hospital costs, and medical decisions are typically led by the family. “The family walks in first and will often say, ‘She’s sitting outside. We’ll talk first and then bring her in.’ This is unacceptable,” says Dr Lancelot Pinto, Pulmonologist and Epidemiologist Consultant at PD Hinduja Hospital, Mumbai.

Children, meanwhile, want to “do everything possible” for their parents. “They don't know any other option. As a society we’re afraid of deprivation. Most don't have access to proper medical care so we take medical care as a right,” says Dr R.K. Mani, Director, Clinical Services, Respiratory & Sleep Medicine and Critical Care at Yashoda Super Speciality Hospital, Ghaziabad.

This emotional instinct collides with harsh financial reality. Healthcare costs can be catastrophic—29.8% of hospitalised cancer patients incur catastrophic health expenditure and 17.2% fall into impoverishment. But when medical treatment becomes synonymous with hope, even futile care is pursued, emotionally and financially.

Opting out of aggressive interventions may appear like giving up—but it is not abandonment, doctors say. “You continue the medical care, but we don't pile on when it is not beneficial,” adds Dr Mani.

Talking openly about death, however, remains deeply uncomfortable. Families see it as giving up, as taboo, even apshakun (bad omen). And when they do talk, guilt and fear often take over. Relatives insist on aggressive treatment in the final days—not driven by hope, but by anxiety that “not doing enough” is betrayal.

Mumbai-based Hashim Moizuddin knows this dilemma well. In 2021, as his mother battled cancer during the lockdown, the family had agreed on low-intensity treatment and palliative care. But in the final days, “it was a fight—whether to put her in hospital,” he recalls. “Even though we were all on the same page, doubt crept in.” It took palliative specialists to explain that further intervention would not help. Only then could the family allow her to pass peacefully at home.

But these discussions are fraught even for doctors.

A System Not Equipped for Honest Conversations

Until the early 2000s, end-of-life conversations were rare even among ICU specialists. Training in palliative care was limited—and remains so. Even today, many doctors are unprepared to talk about death.

“When someone asks, ‘Am I going to die?’ it’s an existential question as much as a medical one. And we are trained to answer it medically only,” says Dr Roopkumar Gursahani, Section Head - Neurology, and Consultant - Neurology at Hinduja Hospital. His advocacy for AMDs began in 2011 with the Aruna Shanbaug case, when he was one of three doctors appointed by the Supreme Court to assist with the medical report.

For many chronic and advanced diseases, doctors can reasonably predict life expectancy, and most treatments in the last six months are futile. But they often avoid that conversation. “There’s a general perception that if your doctor starts talking about death, you need to find another doctor,” says a senior doctor who requested anonymity. Younger doctors fear that if another doctor later offers a new treatment line, it will seem like they gave up too early.

The incentives in private healthcare deepen the reluctance. “If a patient gets admitted thrice before he passes away, there’s a lot of money to be made,” the doctor says. “Doctors also tend to be very defensive as they are worried about litigation. If two brothers disagree—one says X and the other says Y—what do you do?”

An AMD eases such confusion and conflict—and, at long last, India now has a legal framework to support it.

The Legal Landscape: Progress, but Gaps Remain

India’s legal journey toward recognising end-of-life autonomy has been slow, uneven, and hard-won.

2018: A breakthrough. 

After years of advocacy by doctors, NGOs and medical bodies, the Supreme Court formally recognised the right to die with dignity and validated AMDs. But the process required approval from a judicial magistrate—an impossible barrier for most elderly Indians and their families.

2023: A simplification. 

Following sustained efforts by the Indian Society of Critical Care Medicine (ISCCM) and the Vidhi Centre for Legal Policy, the Supreme Court simplified the procedure. A notarised or gazetted-officer-attested document, signed in the presence of two witnesses, would now suffice.

Where the system still fails.

Implementation depends on state health departments, many of which have moved slowly. Karnataka, Maharashtra, Goa and Haryana have issued guidelines; others are yet to act. Awareness among medical staff remains limited, and patients fear that an AMD may not be honoured if they fall ill outside their home state.

Priya Fonseca, who created her AMD through the Hinduja Living Will Clinic, along with her husband Hashim and their 18-year-old son Tarun, voices a common worry: “If I have an accident in another state, will those doctors even understand what we're talking about?”

Doctors themselves want clarity. “This has to be disseminated. Doctors are the drivers—it needs buy-in from them,” says Dr R.K. Mani, one of the country’s leading intensivists and a long-time advocate for end-of-life rights. Under Supreme Court rules, for an AMD to take effect, two independent panels—three doctors from the treating hospital and a second panel of three—must confirm that the patient meets the criteria.

The Ministry of Health and Family Welfare has signalled support. A technical resource group headed by Dr Mani has drafted guidelines for withdrawal of care in the ICU, expected to be published soon. Linking AMDs to digital health records and launching clear, government-led education campaigns could close many remaining gaps.

A Shift in Medical Ethics

Despite these hurdles, something deeper is changing. Indian medicine is slowly moving away from paternalism and toward partnership—recognising that a patient’s choices must anchor end-of-life care.

Palliative care is beginning to take root as a specialty. Several departments already have internal protocols for withdrawal of treatment, says Dr Smriti Khanna, Consultant - Palliative Medicine, at Hinduja Hospital.

In the developed world, 90% of ICU patients undergo some form of treatment limitation before death, notes Dr Mani. “We are trying to encourage our colleagues to have those conversations because it is the humane thing to do. Medicine is increasingly becoming aware of patient choices—what is called patient-centered care.”

Future doctors may be better equipped. The Medical Council of India has begun rolling out the AETCOM (Attitude, Ethics, and Communication) module, which trains medical students to engage with difficult topics like death, autonomy, and consent. By 2030, every graduating doctor will have at least foundational exposure—though trained faculty remain limited.

Within hospitals, the shift is quiet but noticeable: from prolonging life at any cost to asking, What does the patient value? What would they choose? What is right for their context?

“We want to restore faith that doctors act in the patient’s interest,” says Dr Mani. “Medicine must be inclusive of the patient and the family.”

The stakes are even higher in paediatric critical care. “If the child suffers and the finances suffer because of it, the entire family is going to suffer,” says Dr Khanna.

This shift is not merely medical—it is moral. It recognises that limiting treatment is not abandonment, that choosing comfort is not failure, and that dying without unnecessary suffering is a legitimate healthcare goal.

And slowly, India is building the infrastructure for AMDs. PD Hinduja Hospital (Mumbai) and Indraprastha Apollo Hospitals (Delhi) now run dedicated AMD clinics; AIIMS Delhi has announced its own living will OPD; and legal service providers like Aasaanwill.com are helping families navigate the paperwork. Many major hospitals have begun putting internal processes in place.

The response has surprised even advocates. “We were flabbergasted,” says Dr Gursahani. “The hospital didn’t expect it to have such a wide resonance.” Interest at the Hinduja Living Will Clinic echoes what he and Dr Khanna have witnessed during their advocacy campaigns.

Why Living Wills Matter Now

For Priya and Hashim, creating an AMD was not an abstract exercise—it was an act of clarity, responsibility, and love.

Their son Tarun, 18, joined immediately. Having grown up with dinnertime conversations about mortality, he remembered watching footage of Michael Schumacher’s accident at age six and grilling his parents about why he was kept alive in a vegetative state. “I would not want to be like that… just take me off the table.”

[Priya Fonseca, Hashim Moizuddin and Tarun with their family doctor Dr Kaushik Desai, with a copy of their AMD.]

Such certainty is rare in Indian families—but it may well become the norm.

This was not a sudden choice.

The family’s resolve had been building for years. Hashim, who runs high-risk corporate outbound training and designs stunts for reality shows like MTV Roadies, has long lived with the unpredictability of physical danger. Priya, an experienced scuba diver, knows accidents can happen.

“From forever, Hashim and I have been travelling a lot, road travelling. You do see road accidents, and it plays on your mind,” Priya recalls. They drafted their first will early to spare young Tarun the emotional and financial chaos they had seen devastate other families. “We've been exposed to enough situations where families have been left emotionally, financially, psychologically scarred.”

The process took them about three weeks, from consultation at the clinic to getting it stamped at the Brihanmumbai Municipal Corporation (BMC). Their direct cost was just the consultation fee at the clinic (Rs 2,500 plus a one-time registration fee of Rs 300) and the cost of printing several copies.  

AMDs are not about choosing death. They are about choosing dignity, responsibility, and thoughtful care. They ensure that the final decisions about your body and treatment reflect your values—not fear, conflict, or the default inertia of hospital routines.

They also spare families from immeasurable anguish. “One concern people express is, ‘I don't want my family to sell off their house to take care of me,’” says Dr Gursahani.

The emotional burden on families can be crushing. “When a family needs to decide about withdrawing a loved one’s life support, they go through prolonged trauma,” says Dr Mani.

Dr Pinto puts it bluntly: “I told a patient, five years down the road, if you think about this, this was your doctor’s decision. This was not your decision. So you don't have to bear this burden.”

AMDs represent a new kind of agency—one that recognises that good deaths, like good lives, do not happen by accident. They are shaped by conversation, clarity, compassion, and the courage to look mortality in the eye.

Part 2: How to Make an AMD in India (And What You Need to Know)

An AMD is a written document that spells out what medical treatments you would or would not want if you lose the ability to decide for yourself. It also names three designated healthcare representatives who can communicate your wishes when you cannot.

This section explains how to create one and answers the questions people most often ask.

How to Create a Living Will

1. Begin the conversation

Start by discussing your wishes with your family, your doctor, and the people you may appoint as representatives.

You can begin the process on your own, but involving family early greatly reduces conflict and emotional pain later.

2. Visit a Living Will or Palliative Care Clinic

Hospitals such as PD Hinduja (Mumbai) and Indraprastha Apollo (Delhi) run dedicated AMD clinics. Most provide:

• A standard template—like this one (pdf)

• Guidance on treatment options

• FAQs

• Help in customising the document

These consultations typically take under an hour.

This End-of-Life Care Toolkit offers practical guidance.

3. Draft your directive

Your AMD should spell out:

• Which life-sustaining treatments you do not want (e.g., ventilator support, feeding tube, CPR in certain scenarios)

• Which treatments you do want

• The medical situations in which these choices apply

• The names and contact details of your three designated representatives

These representatives are the first people doctors must contact to activate your AMD.

4. Prepare six copies

You will need one copy each for:

• Your three representatives

• Your family doctor

• Your registered hospital

• Your municipal custodian (for example, the ward office under the local municipal corporation)

5. Get it attested

As per the 2023 Supreme Court guidelines, each copy must be:

• Notarised, or

• Attested by a gazetted officer,

• In the presence of two independent witnesses

Some municipal offices may still be unfamiliar with the new rules, but the procedure itself is now clearly defined.

6. Submit to your municipal authority

Your municipal custodian keeps a copy on record so it can be accessed during emergencies.

Frequently Asked Questions

Can I opt for physician-assisted suicide?

No. It is illegal in India. The Supreme Court’s safeguards around AMDs exist precisely to prevent any misuse.

What if I’m in a different city during a medical crisis?

As India’s digital health system evolves, AMDs may soon be available through national health records.

Until then, the treating doctor must contact your first designated representative. If unreachable, they must try the second, then the third.

Can I change my living will later?

Yes. You may revise or revoke your AMD at any time.

Doctors recommend:

• Starting Advance Care Planning (ACP) if diagnosed with a serious, life-shortening illness

• Reviewing your AMD every 5 years

• Reviewing it annually after age 70, or sooner if you have a chronic progressive disease (for example, long-standing bronchitis with frequent hospitalisation)

What if I am conscious but very ill?

Your current, spoken consent overrides your AMD.

If you can express your wishes clearly, those wishes come first.

What if I don’t have a family?

You may appoint:

• A close friend

• A lawyer

• Anyone you trust to represent your values

If your children live abroad, it is advisable to choose a representative in your city.

Will doctors really follow my AMD?

Yes, but AMDs are not automatic triggers. Doctors retain responsibility to ensure:

• Beneficence (acting in your best interest)

• Non-maleficence (avoiding harm)

If a condition is easily reversible—for example, high potassium or pneumonia—they may override a DNAR (Do Not Attempt Resuscitation) order with written justification.

No AMD can cover every possible scenario; doctors make judgments based on the closest match to your stated wishes.

Is Cardio Pulmonary Resuscitation (CPR) always beneficial?

No. Contrary to what movies portray:

• CPR succeeds in only about 5 percent of ICU cases

• It almost always requires a ventilator

• It often leads to prolonged hospitalisation

Your AMD can specify whether you want CPR in particular scenarios.

Can I refuse treatment even without an AMD?

Yes, if you are mentally competent and able to communicate. 

If you are not, your AMD speaks for you.

What if my family disagrees with my AMD?

This is common.

Doctors strongly encourage families to discuss these topics early; honest conversations now prevent intense emotional distress later.

Two useful resources include:

• Advance Care Planning India

• The Conversation Project

Final Note

Making an AMD is not about choosing death. It is about choosing clarity over confusion, dignity over fear, comfort over futile suffering, and autonomy over chaos.

It helps your loved ones act with confidence, not guilt.

And it ensures your last chapter reflects your values, not the momentum of hospital machinery or the emotional turmoil of others.

Slowly but surely there is a movement to break the taboo around discussing death: In 2017, the Indian Association of Palliative Care held #LaughAtDeath—a stand-up comedy show by four terminally ill patients. Kerala leads the way. In March, around 30 people in Thrissur signed AMDs. In August, Bangalore held The Good. To. Go. Death Literacy Festival.

With more such open conversations, and systems slowly aligning, AMDs could become a cornerstone of compassionate, ethical end-of-life care in India.