Dignity and the End of Life

By Arunima Rajan

Worldwide, countries are grappling with the question of legalising euthanasia, debating issues of patient autonomy, the role of healthcare systems, and economic burdens. This connects to the broader movement advocating for patient rights in end-of-life care.

*Krishnannuni P was not a man you would expect to see battling a terminal illness. In his seventies, he was the heart of his apartment complex’s evening gatherings—a light-hearted presence, cracking jokes, sharing stories, and spending time with fellow retirees. His life had been ordinary, content, even joyful. Then, he was diagnosed with stage four cancer.

The diagnosis was swift and brutal. His once-predictable days, filled with easy conversations and shared meals, turned into a relentless cycle of hospital visits, radiation treatments, and medical procedures. His body, once sturdy, weakened rapidly. Eating became painful. Hallucinations began to cloud his mind. The pain was constant. And soon, the man who used to be at the centre of laughter was confined to a bed, barely able to speak.

As the disease advanced, Krishnannuni made a decision—one that many terminally ill patients might consider, yet few in India can realise. He asked for euthanasia. The request, made to his family, was simple: he no longer wanted to suffer. His doctors had done all they could, but the cancer’s progression had left him with no hope of recovery. Even his care team had sent him home, as there was nothing more they could do.

But in India, the legal option to end one’s suffering doesn’t exist. Krishnannuni’s request, though heartbreaking, went unanswered. He spent his final days refusing food, removing life-support mechanisms, and drifting further into pain. A man who had lived his life with dignity, now left without the ability to choose how it would end.

Krishnannuni’s story encapsulates a larger issue—one that is quietly playing out in homes across the country. For many terminally ill patients, the option of assisted dying could mean a peaceful end, free from unbearable pain. Yet in India, the laws are clear: patients like Krishnannuni do not have  that choice.

Legal Context in India

In India, active euthanasia—the deliberate act of ending a terminally ill patient’s life, even at the patient’s own request—remains illegal. However, in 2018, the Supreme Court made a pivotal decision regarding end-of-life care. Following a petition from the Indian Society of Critical Care Medicine, the court allowed the use of Advance Medical Directives (AMD) and permitted the withdrawal or withholding of life-sustaining treatments. This ruling introduced the concept of a Living Will, where individuals, while still capable of making decisions, can outline their preferences for future medical treatment in the event they lose that capacity. It marks a significant step in empowering patients to maintain control over their care, ensuring their wishes are respected as they face the end of life, and adding to the larger conversation about dignity in death.

Economic Burden on Families

Ravi Duggal, a public health researcher, weighs in on the issues. “In the case of terminal illness or extreme incapacity and difficulty in living there should be a legal provision of voluntary euthanasia, supported with appropriate counselling and advice. Our healthcare system is grossly inadequate to deal with such situations - provision for palliative care is negligible and the burden falls on families who often do not have the means to even support routine healthcare, leave alone catastrophic healthcare. With a predominance of private healthcare and a weak public health system, care for such patients can economically destroy families. Over 80% of lifetime health expenditure for an individual happens in their last couple of years and the beneficiary of this is mostly the private health sector. The onus in the absence of such a law is on the State which has failed to provide support systems/social security for such cases.”

Gaps in healthcare

Duggal continues: “With an ageing population, just having free hospitalisation insurance cover for 70+ age group as recently announced under Ayushman Bharat PMJAY is not sufficient because it is largely the senior citizens who are vulnerable to terminal and end-of-life situations and the state is not even thinking about such persons. Even amongst younger age groups such a situation may happen and again there is no state support for that. Given the lack of state support, it becomes inevitable that the decision has to be taken by families and this requires a legal backing.”

Patient Autonomy

He also emphasises that the patient should be at the centre of taking such a decision, and for this a Living Will is an useful instrument which the Supreme Court has mandated. But at the implementation level the mechanisms to facilitate this are inadequate. The Living Will also would help in cases of patients in coma who cannot give immediate consent but the family on the basis of the Living Will can do so. The Living Will is the first step and other legal support  should follow in its wake.

Call for Legal and Structural Reforms

“The lack of palliative care and other institutional mechanisms to deal with end-of-life situations forces the move towards voluntary euthanasia. Advocacy for strengthening State policy towards investing in such mechanisms requires quick action so that people who suffer such situations can die with dignity and without being an economic burden on their families. If this can happen then assisted dying will become a rare alternative. As things stand assisted dying is perhaps needed as an interim measure until institutional structures and mechanisms are in place to help the terminally ill and those suffering from severe incapacitation,” notes Duggal.

International Comparisons and Patient Autonomy

As the author of “The Complete Eldercare Planner” and “Who Will Take Care of Me When I’m Old?”, Joy Loverde has spent more than 30 years immersed in conversations around death and aging. These experiences have shaped her understanding of how people think about the end of life. She often hears from individuals—both young and old—who, faced with terminal illness, prefer to take control of their own fate. For many, the priority is clear: they don't want to become a burden on their families.

Having served as a caregiver to both relatives and non-relatives, she has sat with many people at the end of their lives, watching as they make difficult decisions about their own care. Some stop treatments. Others simply, stop eating.

For Loverde, these experiences have strengthened her belief that people with terminal illnesses, who are mentally competent and fully aware of their choices, should have the right to decide when and how they die. It’s a deeply personal decision, but one that, in her view, deserves to be respected.

“Considerations for assisted dying are often initiated in the caregiving process. Witnessing first-hand the seemingly endless and needless suffering of relatives and close friends in the dying process tends to jump-start thoughts about staying in control of what it means to die a dignified death. ‘I never want that to happen to me,’ is a caregiver mantra I hear all the time. Upon a diagnosis of Alzheimer’s disease, and with time on their side, I have personal experience with relatives who have weighed the pros and cons of riding out the disease versus assisted dying. They know what lies ahead, and some have chosen assisted dying.”

“When resources are limited, I have witnessed dying individuals who refuse further medical treatments and stop receiving food and water altogether. Others have established legal documentation and designated advocates to back them up. In the United States these documents include Living Will and Durable Power of Attorney for Healthcare, among others,” explains Loverde.

Abdul Ghafur, Consultant in Infectious Diseases at Apollo Hospitals, emphasises that the core issue is not just access to palliative care, but whether patients diagnosed with terminal illnesses and experiencing severe pain should be given the option to decide when and how to end their suffering. While palliative care is still not widely available across India, even in states like Kerala where access is better than in other regions, some patients may still choose to end their suffering regardless of the care available. He argues that having the option to choose when to die is crucial for these individuals.

Ghafur explains that regulations for assisted dying exist in other parts of the world, and India should focus on creating safeguards to prevent misuse rather than avoiding regulations altogether. The responsibility lies in developing implementable rules that ensure decisions are made ethically, with a panel of experienced doctors rather than just any medical professional involved in the process. He highlights that while the risk of misuse is a concern, it shouldn’t prevent the establishment of these regulations, as patient autonomy and dignity in end-of-life care must be respected.

Additionally, as society evolves, Ghafur calls for a broader investment in better care options for the elderly, such as retirement homes and old age homes, to support patients in their final years.

Medical and Ethical Concerns

IMA president RV Ashokan says that the medical profession does not support assisted dying irrespective of its legality. Gopukrishnan Pillai, public health director of One Billion Literates Foundation and a palliative care physician, supports his views.

Palliative Care Vs. Euthanasia

Dignity at the end of life is conceptually unrelated to Euthanasia, though there is a tendency to conflate the two. End-of-Life Care (EoLC) in Palliative Care (PC) is fundamentally different from so-called Medical Assistance in Dying (MAID). EoLC in PC is guided by the principle of proportionality, that is to say the intervention has to be consistent with the intensity of suffering. In the setting of PC, a request for MAID is always taken seriously, but only as an indicator of extreme suffering that calls for urgent attention to its root causes. In the rare situations where a person is put on so-called terminal sedation, it is done only as a last resort when all other interventions have failed to relieve extreme suffering. In reality, palliative care is about affirming life, even as it nears its end. It emphasises quality of life and, importantly, dignity in both living and dying. For many medical specialties, death is treated as a failure. But in palliative care, we acknowledge the importance of a good death—a concept often overlooked in contemporary medical practice.

Pillai says, “At some point, it's reasonable to acknowledge that the emphasis should no longer be solely on trying to cure the illness, but on living with or, ultimately, dying with it. The clinical work in palliative care mirrors that of mainstream medicine, but with a different focus—on comfort, dignity, and quality of life.In this sense, palliative care aligns closely with Article 21 of the Constitution, which ensures the right to life, and, as the Supreme Court has ruled, that right includes the dignity in death. Palliative care is, therefore, not just about life, but about ensuring a dignified end to life in line with our constitutional values.”

 “For a patient like Krishnanunni, the patient may have asked for MAID but it is important to recognise that it is not a request for euthanasia—but for relief of extreme pain and suffering. Offering Euthanasia as a quick way out is the exact opposite of what the patient needs in this situation. A palliative care expert would approach the problem with an open mind, consider various possibilities for intervention - including but not limited to more effective management of pain. As discussed previously, it is possible that the only way to relieve suffering is to use medicines in such doses as might cause sedation, or otherwise endanger the patient's life. However the primary goal is to relieve suffering, not to hasten death. This distinction is crucial. There's an ethical framework, known as the doctrine of double effect, that permits actions with both positive and potentially harmful outcomes, but only in specific circumstances. In this scenario, even though a doctor wouldn’t give this combination of drugs to a healthy patient, for someone facing terminal illness, the focus is on managing pain, even if that inadvertently shortens life. What matters is the intent—to offer comfort, not to cause death. This is always done with the informed consent of the family, and where possible based on advance directives from the patient as well” adds Pillai.

“In developed countries such as those of Western Europe, where the culture emphasises freedom of choice, the dynamics around euthanasia are different. Teenagers, for instance, often don’t need to ask their parents for permission when making personal decisions. But in our society, these choices are a complex mix of individual will and family expectations. Even in these countries, normalising euthanasia raises concerns. It can, at times, offer health systems a way to sidestep more difficult care solutions. One controversial case in the Netherlands involved a 29-year-old woman with severe depression who requested—and was granted—euthanasia. It’s a slippery slope, and we must be cautious about where we draw the line,” adds Pillai.

“There’s also a socioeconomic dimension to consider. Poverty, declining wages, and inadequate housing for senior citizens create new ethical dilemmas. If someone says, ‘My apartment is so cold, I want to die,’ do we offer them euthanasia, or do we address the real issue by providing heating and support? These are the tough questions we need to grapple with. We need culturally and contextually rooted conversations to understand what it really means to live, age and die with dignity in our society,” adds Pillai.

Given the shortcomings in palliative care, the question of euthanasia access in India should not serve as a way to offload the responsibility of providing effective end of life care. While the introduction of a Living Will gives patients more autonomy in their care decisions, perhaps the ethical scope and required safeguards around the issue need to be debated further in the Indian context. It is a very new and difficult dialogue–but an important one to undertake.