Living Wills Gain Ground In Kerala: Personal Stories Highlight The Shift Towards End-of-Life Choices

Despite the Supreme Court's landmark judgement legalising Living Wills in India, Kerala is currently the only state where these wills are actively signed. In Thrissur, the Pain and Palliative Care Society has facilitated the signing of Advance Medical Directives, or Living Wills, for over 60 individuals.

Sini P S, a native of Thrissur in Kerala, is the youngest person in the state to have registered a living will. Her journey was fraught with challenges, as her family members, including her husband, were initially opposed to the idea. “To them, it sounded like an expression of willingness to give in to terminal diseases without fighting; the general perception is that signing a living will is equivalent to giving up medical care. This is absolutely wrong,” Sini asserts.

Originally an ordinary nurse with aspirations of working abroad, she has become one of approximately 60 individuals in the southern state who have decided to document a living will. This decision was influenced by her association with the Pain and Palliative Care Society, Thrissur. Exposure to the concept of ‘dying a graceful death’ motivated Sini to sign the living will, through which she prefers palliative care rather than prolonging life with the aid of machines in a vegetative state.

At 38, Sini is in good health and shows no signs of terminal illness. However, she chose to document her wishes now to avoid potential moral dilemmas and confusion for her family should they have to make decisions about prolonging her life in the future. She emphasises that signing a living will is not an authorisation to let someone die without proper medication. Rather, it reflects a choice not to extend life in a vegetative state if there is little chance of improving health.

The concept of the living will was introduced by the Pain and Palliative Care Society, which has been operational since 1996. A living will is a document expressing one’s wish to receive palliative care rather than life-extending measures like ventilators or intensive care when faced with an irreversible condition from a terminal disease or fatal accident.

Lilly E C, a retired nursing superintendent from the Kottayam Medical College and a volunteer at the Pain and Palliative Care Centre, has her own reasons for signing a living will.

Lilly, who has an adopted daughter, does not want her to face the dilemma of deciding whether to continue life in a vegetative state or opt for palliative care. “I believe everyone should consider this to avoid placing our children in a position of guilt. In my case, it is particularly important because my daughter is adopted. Relatives might blame her if she decides not to extend my life when the quality of life is lost,” she says.

Those who opt for a living will make it clear that it is not an authorisation for suicide or euthanasia of a healthy person, nor is it a denial of medical care. Instead, it is an authorisation for a less painful, peaceful, and dignified exit from life when no recovery is possible.

The Legal Status of Living Wills in India

The legality of living wills for Sini and others was established by a 2018 Supreme Court judgment in Common Cause v Union of India. The court recognised the right to die with dignity as a fundamental right under Article 21 of the Constitution, which guarantees the right to life and personal liberty. The judgment legalised passive euthanasia, allowing the withdrawal of life-sustaining treatment from patients in a permanent vegetative state or with irreversible conditions.

The top court permitted individuals to create living wills or advance directives specifying their wishes regarding medical treatment if they become incapacitated. It referenced the definition of a living will provided by legal scholar James C. Turner, describing it as a document directing one’s physician to cease treatment under certain conditions. This applies to both terminal illness and serious accidents leading to a vegetative state. In essence, a living will outlines actions to be taken for one’s health if they are unable to make decisions for themselves due to illness or incapacity.

The apex court laid down guidelines for the implementation of passive euthanasia and living wills, including the process for execution, authentication and implementation of advance directives. This landmark judgment affirms individual autonomy in making end-of-life decisions while setting up a legal framework to prevent abuse.

The Global Trend of Living Wills

The concept of living wills was first proposed by American lawyer Luis Kutner in 1969. They gained legal recognition in the US when California became the first state to legalise them in 1976. This movement was further supported by the Patient Self-Determination Act of 1990, which required healthcare providers to inform patients of their rights regarding advance directives.

In the United Kingdom, the idea gained traction in the 1980s, culminating in the Mental Capacity Act of 2005, which provided legal standing to advance decisions. Australia has had varied implementations of advance care directives since the 1980s, with a national framework established in 2011. Canada recognises advance directives through provincial legislation, with Quebec being the first province to legalise medical aid in dying in 2014, incorporating provisions for advance directives.

The Netherlands recognised living wills in 1995 and legalised euthanasia in 2002, including advance directives. Germany followed with legal recognition in 2009, while Japan has seen gradual acceptance since the 1990s, with guidelines issued in 2007. Spain introduced its legal framework for living wills in 2002. Globally, there is a trend towards increased recognition of patient autonomy in end-of-life decisions, though implementation and legal standing vary among nations.

The Other Side of the Story

Susheela Madhavan, a volunteer at the Society, has chosen not to sign a living will. She says, she has a supportive family as she does not even need a will to execute her wish. She highlights potential misuse concerns, stating, “Rather than signing an advance medical directive, this should evolve into a support system.”

The palliative care volunteer warns that the document could be misused, leading to family members ceasing to provide necessary medical attention. “The chance of returning to normal life is high in many cases," says Susheela Madhavan.”

Her extensive experience includes working with national and international organisations such as the WHO.

Susheela’s apprehensions reflect debates in the Supreme Court, where the Government opposed legalising living wills due to misuse concerns. The Additional Solicitor General highlighted that living wills could lead to vulnerable individuals, particularly those lacking mental competence, being pressured into directives that do not reflect their true wishes.

The Pain and Palliative Care Society challenges the misconception that living wills are only for those with terminal illnesses. Among the 60 individuals who have signed living wills through the society, only one has survived a terminal disease.

N N Gokul Das, 75, a retired professor and founder of the society, is a cancer survivor who believes that a living will helps people face the end of life with dignity and peace. “People shouldn't have to die in the cold isolation of Intensive Care Units. They deserve a warm farewell surrounded by their loved ones,” he says.