We are delighted to present to you, the second part of IAPC’s special feature in connection with the World Hospice and Palliative Care Day (WHPCD).
The second part of this seires features a selection of articles on Palliative Care for the LGBTI community to generate awareness and improve the momentum for these two communities in the country.
Each feature encompasses a selection of articles (experiences, stories and other key recommendations etc.) from geographically dispersed expert palliative care practitioners from different cadres (Doctors, Nurses, Counsellors) and from different institutional setups (Private hospitals, Stand alone centers, hospices and NGOs).
Care for the LGBTI Community: Role of Palliative Care
About the Author: Dr. Rajni Herman is a palliative care physician, working as the Project Director of Shalom Delhi, which is a Palliative care Unit of Emmanuel Hospital Association. Shalom, located in Delhi, India, provides holistic care for patients with HIV, terminal cancer and Non Communicable Diseases. Its various components include a hospital clinic with inpatient and outpatient facility, home care programs for patients with HIV, cancer and NCD, an adolescent program, palliative care work among transgendered people, support groups and a livelihood program.
Shalom Delhi is a Palliative care unit of Emmanuel Hospital Association that provides holistic care for patients with HIV, terminal cancer and NCD, with a focus of providing care for the poor and marginalised sections of society.
Transgenders (both “Hijras” and “Kothis” who are-effeminate men), the homosexual partners of Transgenders (TGs), and the wives and children of Kothi’s, are one of the important beneficiaries of Shalom’s Home Based Care HIV and medical program.
Transgender (or trans) is an umbrella term used to describe people who do not identify with the gender they were assigned at birth. This includes people who identify with a binary gender (e.g., man, woman) and those who identify as non-binary (e.g., gender fluid, genderqueer, etc). In India, a common term used to describe transgender people, transsexuals, cross-dressers, eunuchs, and transvestites is “Hijra” – who are biological males who reject their masculine identity, and identify either as women, or “not-men”, or “in-between man and woman” or “neither man nor woman”. Some trans people may also identify as lesbian, gay or bisexual, while others identify as heterosexual. While there are significant differences both between and within the different groups, LGBTI individuals share many common experiences; notably, rejection from their families and communities, discrimination in medical care, lack of formal employment and housing, verbal and physical abuse, violence, widespread stigma, and discrimination. The fact of being diagnosed as having HIV, worsens the discrimination and stigma that they already experience. Rejection by the family and the society along with a traumatic past has left several of them emotionally hurt with a low self-esteem and a frail mental health. Violence, often from their sexual clients, is a common part of their life experiences. Having grown up in situations of poverty, many of them are illiterate or poorly educated, and this makes them even more socially vulnerable. Most of the transgenders Shalom works with make a living by singing, dancing or by begging and prostitution.
Role of Palliative care for the LGBTI community
Palliative care requires a deepening trust between the provider and the patient. Listed below are some of the ways in which Shalom works towards deepening this trust:
- Our communication:
A patient who was assigned male sex at birth and identifies as a woman today (Transwoman) should be addressed by their “self-determined identity” regardless of whether they have pursued any hormonal and/or surgical interventions to align their gender expression with their gender identity. Our clients are always referred to by the name they prefer, or at times if it’s a trans-woman we address them as “Didi”. The purpose for such addressal is done out of respect for who they are and who they identify themselves to be.
One of our Home-based care staff working with TGs can converse in their language known as “Hijra Farsi”. The rest of the staff at Shalom have also learnt some of the key words used by TGs. This helps us to build a good rapport with them.
- Provision of holistic, person-centred medical care:
The Shalom staff have been trained in the knowledge of health issues faced by transgenders and are therefore able to provide holistic, person centered medical care in a friendly, safe, loving and welcoming environment. Their health history is also taken without any judgement. Barriers to ART adherence and engagement with HIV care including pain and physical symptom management are addressed by our efficient medical staff.
- Addressing their psychosocial needs and providing supportive services:
The provision of Home-based care has emerged as an effective method of providing emotional and psychosocial support to TGs infected and affected by HIV/AIDS and for those who have cancer. Implementation of inclusive community programs such as yearly and quarterly gatherings of transgenders with HIV infected and affected families, and regional support groups, create oppurtunities to provide them with the much-needed psychosocial support.
Supportive care is provided regularly to those transgenders’ who are extremely poor. Support is extended by provisioning regular monthly food hampers and financial help in times of dire need. Our staff also accompany TGs to the government hospitals if further evaluation is needed to be done.
- Networking, and partnering with organizations working with the LGBTI community in Delhi:
We network and enter into partnerships with NGO’s working in this space to promote community awareness and the understanding of palliative care among the LGBTI community.
As a palliative care community, may we strive to foster the well being and affirm
the dignity of the LGBTI community.