The Silent Struggle of End-of-Life Decisions
In 2010, Dr. IP Yadev, a surgeon from Kerala, faced one of the most difficult moments of his life. His father, a terminal cancer patient, had expressed his wish to discontinue treatment and die peacefully. However, as a son, Dr. Yadev struggled to honor this request, choosing instead to prolong his father’s life through medical interventions.
“He ended up dying alone in an intensive-care unit. The doctor’s last attempt to revive him using CPR crushed his ribs. It was a horrible death,” Dr. Yadev recalls. This painful experience changed his perspective on end-of-life care and made him realize the importance of advance medical directives (AMDs), also known as living wills.
A living will is a legal document that enables individuals above the age of 18 to decide the type of medical treatment they wish to receive if they become terminally ill or are unable to make decisions for themselves. This includes opting out of life-support systems or ensuring adequate pain relief.
Legal Recognition, But Limited Awareness
In 2018, the Supreme Court of India allowed individuals to create living wills and choose passive euthanasia—the withdrawal of medical treatment to allow a natural death. However, active euthanasia, which involves intentionally aiding a person’s death, remains illegal in the country.
Despite legal recognition, living wills remain a rarely discussed concept in India. The cultural stigma surrounding death prevents families from openly discussing end-of-life choices. Many believe that talking about death brings bad luck, which results in a lack of awareness and resistance to the idea.
However, there are efforts to change this.
Kerala Leads the Way in Awareness Campaigns
Kerala, which boasts India’s most advanced palliative care network, is at the forefront of spreading awareness about living wills. In November, Dr. Yadev and his team launched India’s first public initiative at the Government Medical College in Kollam district. They provide information through in-person consultations and helpline services while also distributing living will templates to help people prepare their directives.
In Thrissur, the Pain and Palliative Care Society took a significant step in March when 30 members signed living wills, demonstrating their commitment to promoting the idea. Dr. E. Divakaran, the society’s founder, says, “Most people have never heard of the term, so they have many concerns, such as whether a living will can be misused or if they can modify it later.”
Currently, interest in living wills is mostly seen among educated, upper-middle-class individuals in their 50s and 60s. However, campaigners believe that grassroots awareness programs will help expand its acceptance across different demographics.
Challenges in Implementation
The Supreme Court has outlined clear guidelines for preparing a living will. It must be:
* Drafted and signed by the individual.
* Witnessed by two people.
* Attested by a notary or a gazetted officer.
* Registered with a state-appointed custodian.
However, many state governments have yet to establish the necessary framework for processing and storing living wills.
Dr. Nikhil Datar, a Mumbai-based gynecologist, discovered this gap when he attempted to submit his living will two years ago. Since there was no designated custodian, he took legal action, prompting the Maharashtra government to appoint 400 officials across local bodies to serve as custodians.
Similarly, Goa became the first state to fully implement the Supreme Court’s orders in June, with a High Court judge becoming the first person to register a living will.
In Karnataka, the state government recently instructed district health officers to appoint members for medical boards responsible for certifying living wills. Two independent medical boards must verify that a patient meets the conditions for implementing a living will before doctors can act upon it.
The Case for a Centralized Digital Repository
Dr. Datar advocates for a national digital repository for living wills, which would ensure easy access across hospitals and medical institutions. He has also made a free living will template available on his website, emphasizing its importance in preventing unnecessary suffering for both patients and families.
He explains, “Often, family members do not want the patient to undergo further treatment, but since they cannot care for them at home, they keep them hospitalized. Doctors, bound by medical ethics, cannot withdraw treatment without legal consent, leading to prolonged suffering for the patient.”
Living Wills: Beyond Passive Euthanasia
While living wills are primarily associated with passive euthanasia, they also empower individuals to choose continued medical support if they so desire.
Dr. Yadev recalls a case where a man included a clause in his living will requesting life support, ensuring he could remain alive until his son—who lived abroad—returned to see him one last time.
“You have the freedom to choose how you want to die. It is one of the greatest rights available to us, so why not exercise it?” Dr. Yadev asks.
Shifting Mindsets Towards End-of-Life Care
Conversations about palliative care and end-of-life decisions are gradually increasing across India. Delhi’s All India Institute of Medical Sciences (AIIMS) is launching a dedicated department to educate patients about living wills.
Dr. Sushma Bhatnagar of AIIMS states, “Doctors should ideally discuss living wills with patients, but there is a communication gap. Training medical professionals in these conversations will help ensure that people die with dignity.”
Dr. Yadev reinforces this point, saying, “Throughout life, our choices are influenced by our loved ones or societal expectations. But in death, we should be able to make choices that are solely our own.”
A Step Towards Dignified Death
While death remains a sensitive topic in Indian society, the growing discussions around living wills indicate a shift in attitudes. With increased awareness, legal clarity, and state-level implementation, more people may soon recognize the importance of planning for a dignified end-of-life experience.
As awareness campaigns gain momentum, individuals and families are slowly beginning to embrace the right to make their own end-of-life decisions, ensuring peace and dignity in their final moments.
