Beyond Bloodlines and Kinship Ties: Nomination in Healthcare

In 2024, when Jebin Joseph lost his partner, Manu, his struggle was not just the emotional journey of losing a loved one, but a legal battle to claim his partner's body and perform last rites. Jebin and Manu were same-sex live-in partners, and on February 3, 2024, Manu passed away. When the hospital did not release the body to Jebin, the case went to court. In Jebin Joseph v. State of Kerala, the Kerala high court ruled that Manu’s body should be handed over to his natal family, and Jebin could attend the last rites, if the family does not express any objection.

Manu’s family had given up on him ever since he started living his identity comfortably. In death, however, the law reinstalled them as the rightful kin – while Jebin, his partner and possibly the person closest to him, had no say in how Manu’s last rites would be performed. In 2018, the Supreme Court of India guaranteed the right to die with dignity as a fundamental right. However, this case hardly seems to provide dignity to the deceased.

This case exposes the legal blindspot where queer partners are erased from decision-making, since the default choice, especially in healthcare situations, often is the natal family. It ignores the reality that individuals might have a strained relationship with their families and such families are not best placed to determine what decisions will be in the ‘best interest’ of the person. In healthcare-related situations, the absence of this decision-making and default turn to natal families could lead to unwanted or forced treatments. Thus, the lack of healthcare nomination erodes dignity, agency and can worsen health-seeking behaviour.

What would you do if your family did not know what healthcare decisions are the best for you? How would you feel if the word of a disapproving parent outweighed the one of your loved one or your chosen family? Without formal recognition, love and care that fall outside the heteronormative or marital framework finds no place in the eyes of law.

Also read: ‘Queering the Law’: A Policy Brief Seeks Equality Beyond 'Supriyo'

Currently, in Indian law, only three legal instruments look at nomination or surrogate decision-making:

1. Advance Directive under the Mental Healthcare Act, 2017: Section 5 guarantees the right to an adult to decide (in writing) how they wish to be treated, or refuse treatment, if they do not wish to be treated for mental illness. Critically, it also allows an individual to decide whom they would like to nominate as their representative to make mental healthcare decisions on their behalf.

2. Provision for guardianship under the Rights of Persons with Disabilities Act, 2016: Section 14 of the Act provides for a limited guardian to take legally binding decisions for a person with disability who is unable to do so. These decisions must operate on mutual trust and understanding;

3. Advance Medical Directives under Common Cause v. Union of India: A legal document where an individual can list out their wishes on how they wish to be treated towards the end of their life. The document also lists surrogate decision-makers in an order of preference, who can make decisions for them when an individual loses decision-making capacity.

In all of the above, a nominee can be anyone, a family member, friend, partner, colleague – anyone trusted to make decisions for you when you lose decision-making capacity.

Using nominations to provide agency to queer relationships

In queer relationships, nomination does not only provide logistical formality – but is a way to reclaim autonomy from systems that have long ignored their existence. It is imperative that the law extends the right to all individuals, especially queer couples. It is heartening to note that recently the Delhi high court has asked the Union government to clarify the rationale for excluding unmarried and same-sex couples from giving consent on their partner’s behalf for medical treatment or in an emergency, as in its view, it saw no valid justification for such exclusion.

To bridge the gap that currently exists, is it important that directions are issued to all medical practitioners and healthcare institutions to broaden the definition of ‘family’ or ‘kin’ to include non-normative family structures. This would break the bias on what constitutes a family, allowing chosen families and queer partners to be included in the process when it comes to healthcare decision-making. To ensure that there is no discrimination, a strong institutional response is needed. One way to address this would be to update the existing medical curriculum and make it queer-affirmative for all medical students. This curriculum must actively include and validate queer bodies, identities, experiences and relationships. It is important to remove the existing biases and lack of knowledge of medical professionals in relation to queer persons. A queer-affirmative curriculum will pave the way for informed and unbiased care and will help foster respect and dignity in the healthcare system.

Also read: Access Intimacy and Sensual Sovereignty – The Pill For The Queer Disabled

To implement the right to die with dignity, and respect the autonomy that stems from the right of choosing a surrogate decision-maker, all hospitals across the country must institute end-of-life care policies, clearly delineating the definition of a family to include partners and non-heteronormative relationships. Here, advance medical directives become legal documents where individuals can list their wishes regarding healthcare towards the end of their life. One can also list surrogate decision-makers in an order of preference.

Lastly, the determination of nomination heavily depends on decision-making capacity. Multiple legislations allude to this – ‘sound mind’ under the Indian Contract Act, 1872, ‘unsound mind’ under Bharatiya Nyaya Sanhita, ‘sound mind’ under Indian Succession Act, 1925, and numerous other laws and judgments. However, there is no standard legal definition on what constitutes decision-making capacity under the law. A law on decision-making capacity can be used to determine the decision-making process when an individual is unable to make decisions for themselves. The determination of this capacity must be built in consultation with medical and legal experts in the subject-area. Further, global best practices from existing legislations on the issue in the United Kingdom (Mental Health Capacity Act, 2005) and across different states in the United States of America will be critical to shape this law.

The law on decision-making capacity is critical for queer relationships because it allows an opportunity for formal recognition. An individual can nominate anyone – their chosen families, partners – to be the decision-makers, allowing one to move away from the patriarchal and homophobic institutional policies that often guide medical practices.

These measures would help recognising chosen families formally as the rightful decision-makers in healthcare settings. This move would help build autonomy and can likely improve health-seeking behaviour for queer persons. It is time that the law catches up with the realities of queer lives.

Shireen Yachu and Sunetra Ravindran are with the Vidhi Centre for Legal Policy, which has prepared policy briefs proposing legal and policy solutions for challenges faced by the queer community.

The Wire is now on WhatsApp. Follow our channel for sharp analysis and opinions on the latest developments.