Dignity in death: How living wills avoid the indignities of prolonged hospital care

"I'm a cancer survivor. I went through 10 cycles of chemotherapy to treat colorectal cancer, but I didn't have the health to endure two more cycles," said the 75-year-old.

"The disease may be cured, but there's no guarantee I won't be a cancer patient again. Now, I've decided that enough is enough. I've realised that the right to live isn't just about existing—it's about living with dignity. In today's world, death involves massive financial interests. Death is a bigger business than birth. Patients are kept in ICUs for as long as it takes to secure the hospital’s finances. I've stopped my yearly cancer reviews, which are the standard protocol for survivors, and I have signed my advance medical directive.”

Professor NN Gokuldas, a retired zoology professor, science author, and active campaigner for the pain and palliative care movement as well as the Haemophilia Society, shared his personal journey.

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During the final days of former Kerala Chief Minister Oommen Chandy, a controversy arose when his brother, Alex V Chandy, along with 40 close relatives, filed a complaint with the government, alleging that Chandy's immediate family—his wife Mariamma and children Mariam, Achu, and Chandy Oommen—had denied him appropriate medical treatment.

The complaint sparked a political controversy, which persisted until it was revealed that Oommen Chandy had chosen his own course of care. He had to appear on camera to clarify that his family and party had provided him with the best care. He had questioned the source of the false claims after his relatives had approached the government with concerns about his medical treatment.

The 79-year-old leader was undergoing treatment for throat cancer at a private hospital in Bengaluru when he passed away. Oommen Chandy was first diagnosed with cancer in 2015 and went into remission after receiving treatment in the US. However, the cancer returned in 2019, and he began treatment again.

When discussing the concept of living wills or advance medical directives, Oommen Chandy’s final days and the ensuing unsubstantiated controversy serve as a compelling case for advocates of advance medical directives.

It was in 2018, the Supreme Court of India, in its landmark judgment, recognised the right to die with dignity as a fundamental right under Article 21 of the Constitution. The court also legalised “living wills”, which allow individuals to pre-determine their treatment preferences in the event of a terminal illness or irreversible coma. In January 2023, a constitutional bench led by Justice KM Joseph, amended procedures for advance medical directives and the withdrawal of life support, marking a significant shift in end-of-life care in India.

Living wills or advance directives are legal documents that outline your preferences for medical care if you're unable to make decisions, such as when terminally ill or seriously injured. These directives guide doctors and caregivers in providing care according to your wishes, especially in critical situations like coma or late-stage dementia.

The Supreme Court in its ruling had observed, “The said directive, we think, will dispel many a doubt at the relevant time of need during the course of treatment of the patient. That apart, it will strengthen the mind of the treating doctors as they will be in a position to ensure, after being satisfied, that they are acting in a lawful manner.”

In a recent lecture held in memory of the late Marxian thinker TK Ramachandran, in Kochi, Kerala, Dr MR Rajagopal, regarded as the father of India's palliative care movement, posed a thought-provoking question to the audience. "Can I ask for a show of hands, even though I see some young people around, and it may be a bit of a cruel question—but to both the young and old, I still ask: Are you able to think about your own death?" More than 50 per cent of the audience raised their hands, prompting Dr. Rajagopal to describe the gathering as a very unusual group.

Awareness of death has existed among humans for a long time, but discussions about end-of-life care and palliative care are relatively recent. It has only been in recent years that palliative care has been included in the curriculum for medical and nursing students in our country.

Dr. Rajagopal, emphasised the need for a compassionate approach to end-of-life care in an era where medical advancements allow us to prolong life, often at a significant financial and emotional cost. "A person’s last phase of life should be about dignity, not just extending survival through ICU care," he said. "We have the technology to keep someone alive for longer, but we need to ask ourselves—at what cost? Prolonging life should not mean prolonging suffering. It’s about balancing the right to life with the right to die with dignity.

“Intensive care is only justified when there is a reasonable possibility of recovery. When it's clear there is no chance of returning to a normal life, what would you choose? The primary goal of end-of-life care should be to ensure that the person is as comfortable and at peace as possible—physically, emotionally, socially, and spiritually. End-of-life care should be humane” observes Dr Rajagopal.

Serious apprehensions were raised in court during the arguments, with parties expressing concerns that the living will option could be misused to carry out euthanasia in a convoluted manner.

“Withdrawing artificial life support is not euthanasia; it is allowing a natural death. The term ‘passive euthanasia’ is a misnomer. I have written my advance medical directive as a common person's protection against intensive suffering. If I sign a document expressing my wishes and designate a trusted person to make surrogate decisions, doctors have an ethical duty to respect those wishes,” says Dr. Rajagopal. “However, it’s crucial to ensure that your loved ones are on the same page so they don’t end up taking the doctor to court. We need ‘death literacy’—not just for healthcare workers, but for everyone. We must encourage open conversations about death,” he adds.

The Supreme Court judgment on living wills has brought the issue of end-of-life care into sharp focus, and Kerala's palliative care network is well-positioned to play a crucial role in its implementation. Living wills allow individuals to make informed decisions about their treatment preferences in advance, which can help ensure that their wishes are respected and that they receive care that aligns with their values and beliefs.

Kerala has been at the forefront of palliative care in India, with a community-based approach that has achieved near-universal access to these services. The state's palliative care network, which includes hundreds of local NGOs and over 10,000 volunteers, provides holistic care to patients with life-limiting illnesses, covering physical, psychosocial, and spiritual aspects. This model has been recognised globally as a sustainable and effective approach to end-of-life care.

In March 2024, more than 60 people associated with the Thrissur Pain and Palliative Society collectively signed advance medical directives to raise awareness about the importance of end-of-life care planning.

Balakrishnan, a retired bank officer, and Balambal, a former BSNL officer, signed their living will to relieve their two daughters, who have their own families, from the burden of making end-of-life decisions. The Federal met them at the Thrissur pain and palliative care society.

"I became a palliative care volunteer, after retirement in 2011 and that's when we started thinking and talking about death. Normally, we don’t discuss it. In the old days, death used to be dignified, happening peacefully at home. The ICU can’t provide that. Often, we aren’t even told when our loved ones pass away," says Balakrishnan.

"Our children are fine with it, but we did not discuss it with them before signing the will. We didn’t want to burden them with these conversations. If we hadn’t signed the will, they’d face unnecessary stress. We made their lives a bit easier," adds Balambal.

"Palliative workers once came to set up a donation box at the bank where I worked, and I found it incredibly noble. That's how I got involved. I wanted to do something for those at the end of their lives. It doesn’t cause me any emotional turmoil. This practice should be more common everywhere. We even organised a large will-signing event to raise awareness, though it's difficult as many aren’t familiar with the details," explained Balakrishnan.

Lilly EC, a retired nursing superintendent, joined the palliative care society after her retirement. "I've seen many patients who didn’t need an ICU setup, but their families, guided by doctors, were often forced to choose it—to intubate the patient and rely on life-support machines like ventilators, even when they knew it wouldn’t change the outcome. Dying with dignity is our right. I've met many who wanted to see their loved ones before passing but couldn’t, and their families also suffer because hospital rules prevent them from entering the ICU. It’s just delaying death."

She reflects on the former chief minister’s case, adding, "If Oommen Chandy had signed a living will, his family wouldn’t have faced those kinds of accusations."

Lilly also shares her personal reasons for signing a living will. "I have an adopted daughter, and that’s why I signed the will. I don’t want to place her in a difficult situation, especially with the uncertainty of how my siblings might react. I don’t want long-term ICU treatment with intubation, just palliative care."

By leveraging its community-based approach, multidisciplinary teams, and strong advocacy efforts, Kerala’s palliative care network helps ensure that individuals have access to high-quality, patient-centred end-of-life care that respects their values and preferences.

This is why the network, with its strong community involvement and focus on patient-centred care, are becoming instrumental in navigating people to the process of creating living wills and ensure that their preferences are communicated to healthcare providers. The network's multidisciplinary teams, which include physicians, nurses, social workers, and volunteers, can provide guidance and support to patients and their families as they consider end-of-life care options.

Advance directives aren't just for the elderly; unexpected end-of-life situations can occur at any age. Preparing these documents ensures you receive the care you want, minimises unnecessary suffering, and relieves your loved ones from making tough decisions in times of crisis. This also helps prevent confusion or disputes about your medical choices.

Mohana Salim, a 26-year-old postgraduate oncology student, signed her advance medical directive at a young age, even though she is yet to start her own family. "As a health professional, I believe I have a duty to practice what we preach. The right to die with dignity is no small matter," says Mohana, who is in perfect health.

Internationally, the acceptance and legal recognition of living wills vary significantly. In many Western countries, such as the United Kingdom, Canada, and Australia, advance directives are legally recognised and serve as important tools for ensuring that patients' wishes regarding medical treatment are honoured.

In the UK, for instance, the Mental Capacity Act 2005 provides a legal framework for advance decisions, allowing individuals to refuse specific treatments if they become unable to communicate their wishes. On the other hand, in some countries, cultural and legal barriers still exist that hinder the acceptance of living wills. In many Asian countries, for example, traditional beliefs about family roles in medical decision-making often conflict with the individualistic approach of advance directives.

However, there is a growing movement in several nations to promote patient autonomy and the right to die with dignity, reflecting a global trend towards recognizing the importance of advance care planning.