Palliative Care for the LGBTIQ Community in India: Lived Experiences from Critical Care

Palliative care for the LGBTIQ community in India Sameera M Jahagirdar (She/They) Specialty Doctor West Middlesex University Hospital Chelsea & Westminster NHS Trust, UK 1 Who am I? •I identify as transgender and began my journey of self-recognition and transition in 2011. •As a doctor from a middle-class Indian Muslim family, I faced challenges balancing my medical career and gender identity. •I have worked to promote trans inclusion in the workplace and advocate for LGBTI+ inclusion in healthcare alongside my critical care medicine career. •Today, I want to share not just concepts but lived experiences from the ICU that will illuminate why this work matters so deeply. 2 Two Stories from Critical Care •Case 1: A 38-year-old transgender woman during COVID •Case 2: A 30-year-old Bangladeshi man in the ICU Key Learning Objectives on Palliative Care •Understanding terminologies: Gender, sex, and identity basics •Exploring the LGBTIQ community in the Indian context •Examining healthcare discrimination through real cases •Identifying specific palliative care needs •Developing inclusive healthcare approaches at all levels 3 Definitions: Sex and Gender Sex: •Refers to specific anatomy assigned at birth, typically based on body parts •Male or Female, and Intersex Gender: •Individual’s innate sense of being male, female, or nonbinary. •Attitude, feeling and behaviour that the culture associates with being male or female. •Gender has both extrinsic (how others perceive us) and intrinsic (how we perceive ourselves) components 4 Definitions: Gender identity & Expression Gender identity •Person's inner sense of gender (male, female, both, none, ?) •All of us have gender identity Gender expression •How one present themselves •It's a spectrum 5 COMPONENTS OF HUMAN SEXUALITY Orientation Behavior Identities (selfand/or imposed by others) Gay Bisexual Lesbian Kothi Ranga Maichiya Panthi Double Decker Attraction to men Sex with men Attraction to women Sex with women 6 L G BT Q I 7 8 The Indian scenario: the L-G-B scenario •Complexity of identity, marriage, and social expectations in India. •Many individuals live dual lives, maintaining traditional family structures while hiding their authentic identities. 9 STRESSORS: SOCIETY AND FAMILY •Heterosexism and Gender norms •Family expectations around marriage and child-bearing •Bullying and other abuse by peers, especially for gender-nonconforming children •Suicidality •Conversion therapy 16 Case 1: The Breakthrough Moment •While transferring to the ICU, I chose to share that I am an openly transgender NHS doctor who would be her ICU physician. The Patient's Response: •She described her work as a sex worker, emphasizing her need for independence and income during COVID, which limited her ability to isolate safely. The Medical Mystery: After ICU admission and arterial access, her vital signs stabilized, oxygen needs decreased, and breathing improved significantly. The real issue surfaced: She revealed she couldn't urinate or defecate in the ward, leading to growing frustration with the nursing care. 17 The Urinal Decision: A Lesson in Dignity •Once in the ICU isolation room, the patient requested to urinate, and the nurse asked me whether to provide a male bottle or a female round basin for collection. •Nurses gave her male urinals, assuming her transgender woman identity meant male equipment was appropriate, which caused significant distress. •The Learning: The patient simply wanted to be asked about her treatment preferences and provided with a female urinal matching her gender identity. 18 Violent health care: Case narratives •“The nurse rubbed my forehead with cotton very roughly without taking the glass pieces out... I told her to stop but she just kept at it and muttered, “You people deserve this”. Because of her I have scars...” •“The doctor there wouldn’t even touch me by hand. He would only touch me using the syringe.” •“Everyone in the hospital looks at us weirdly. The doctors make us wait and will see us after everybody else, even if other patients have come after us.” •“The nurses at the hospital are very rude to us community people and to HIV positive people.” •Case reflections: Healthcare Discrimination Experiences of Non-Normative Genders and Sexualities in Southern India. Researcher: Vinay Chandran, Swabhava Trust, Bangalore Research Assistant: Anurag P Nair. (Unpublished data) 19 Conversion therapy •“One doctor said to me, “This (wanting to be a woman) is nothing big. It’s just like cigarettes and boozing. If you want, you can let go of it” •“The doctor told me; You are living with dissociative identity disorder and one of the female personalities is controlling your thoughts” •Case reflections: Healthcare Discrimination Experiences of Non-Normative Genders and Sexualities in Southern India. Researcher: Vinay Chandran, Swabhava Trust, BangaloreResearch Assistant: Anurag P Nair. (Unpublished data) 20 Prejudices: Affirmative procedures •“Why all this? You need to undergo counselling. Don’t you want to have a baby? You have such a pretty face. I have spoken to homos, but never spoke to somebody like you…” •“I will not perform hysterectomy for someone who has not enjoyed motherhood…” •Case reflections: Healthcare Discrimination Experiences of Non-Normative Genders and Sexualities in Southern India. Researcher: Vinay Chandran, Swabhava Trust, BangaloreResearch Assistant: Anurag P Nair. (Unpublished data) 21 Case 2: The Complexity of Hidden Lives Leading Two Lives: •Married with a child in Bangladesh •Openly living with a male partner in London for ten years •Family unaware of his sexual orientation •Homosexuality is highly taboo in Bangladesh The Medical Crisis: •He worsened after intubation and passed away following several days on a ventilator. The Tragic End: •His funeral was performed by his biological family and members of London's Bangladeshi mosque community, with his male partner of ten years acknowledged merely as a "friend and roommate." Hidden Identity Religion Family: chosen / biological End of life Autonomy Complicated grief 22 Relevance of homophobia or transphobia by HCP to healthcare provision to LGBTIQA+ persons Implicit Bias Clinical Relationships Patient care & Outcomes 23 For all health care professionals to remember •Don’t make assumptions about people’s sexual orientation, gender identity or sex characteristics based on their gender expression •The medical research community is increasingly recognizing that sexual orientation and gender identity are not illnesses (homosexuality was depathologized by WHO in 1992, Gender Identity Disorder changed to Gender Incongruence in ICD-11, 2018) •NALSA Judgement (2014): Legal Gender Identity in India can be self-determined as male, female or third-gender. Asking for proof of surgery or hormone therapy as a prerequisite for legal gender change is illegal and immoral. •Navtej Singh Johar (2018): Consensual relationships of adult LGBT persons are no longer criminalized: Sec 377 does not apply to these. •Transgender Persons (Protection of Rights) Act, 2019: an act of the Parliament of India with the objective to provide for protection of rights of transgender people, their welfare, and other related matters 24 Inclusive healthcare model LGBTIQ+ inclusive healthcare Inclusive encounter: physical set-up Preventive health Palliative care Specialty Medicine: paediatrics, adolescent, Geriatric, Dermatology, Urology, O&G Transgender Health: Affirmative healthcare Medico-legal perspectives 25