How anti-LGBTQ+ policy can hurt the hospice and palliative care population

This is an update of my part 2 current events assignment following the “Don’t say gay” and similar policies from a social work perspective” reflection I wrote for my field course Spring 2022 semester.

Hospice and palliative care organizations serve members of the community of any age living with a serious illness (palliative care) and/or at the end of life (hospice) – from pediatric to geriatric care. As part of care for the ill or dying person, hospice and palliative care teams also provide support for caregivers and family members. In doing so, “one important consideration is that hospice providers should recognize that ‘family’ is defined by the patient. The patient may consider certain people as family who are not related through genetics or marriage.” The aim is to provide holistic, patient-centered care that addresses the medical, social, and spiritual needs of the patient and family/community.

The National Hospice and Palliative Care Organization (NHPCO) reports that “patients who are lesbian, gay, bisexual, transgender, queer, and other sexual and gender minorities (LGBTQ+) may require special care when they are experiencing serious illness and the end of life.” Such considerations may also be applicable to the family and community systems – for instance, genetic/married family, chosen family, or caregivers of the patient who are LGBTQ+ and managing all the challenges of coping with serious illness, impending loss, or bereavement along with minority stress. Minority stress is “additional stress that members of marginalized groups experience because of the prejudice and discrimination they face” and is “(1) unique, (2) chronic, and (3) socially-based.” Socially-based means this stress “stems from social processes, institutions, and structures beyond the individual events or conditions” – such as public policy or regulations and processes at healthcare organizations.

Anti-LBTQ+ policies complicate or stymie the provision of care for these members of our community. For pediatric patients and family/community members, “receipt of gender-affirming care, including puberty blockers and gender-affirming hormones, was associated with 60% lower odds of moderate or severe depression and 73% lower odds of suicidality over a 12-month follow-up” according to a recently published study in the American Medical Association’s open-access journal, JAMA Network Open. Gender-affirming care served to mitigate mental health disparities faced by trans/nonbinary youth “likely owing to high levels of social rejection, such as a lack of support from parents, and bullying, and increased stigma and discrimination.” Yet policy such as Louisiana’s HB 270 “prohibits any physician or other medical healthcare professional from performing any gender transition procedures on any person under 18 years of age or referring any person under 18 years of age to any medical doctor for gender transition procedures.” Transgender pediatric patients and their family members would be denied surgical and pharmacological interventions (including puberty blockers and hormones) that affirm them and reduce adverse mental health outcomes even as they navigate a life-threatening/limiting illness that is already likely to provoke mental distress.

For adult patients and family/community members, a policy like Louisiana’s HB 270 may delay their care (as they would have waited until age 18 or later), add to a sense of isolation and social rejection, and contribute to mental health challenges and lack of trust in healthcare organizations. Adding to a lack of trust between LGBTQ+ people and healthcare entities is particularly troublesome as this community already faces health disparities. While 83% of cisgender heterosexual adults report being in excellent or good health, only 77% of LGB adults and only 67% of transgender adults report the same, and “30.8% of transgender participants delayed or did not seek needed health care due to discrimination.”

Additionally, policy such as Louisiana’s HB 837 which seeks “to prohibit classroom discussion about sexual orientation or gender identity in certain grade levels; to prohibit teachers and others from discussing their sexual orientation or gender identity with students; and to provide for related matters” contributes to a social environment that says LGBTQ+ people should not exist. School personnel would not be allowed to affirm or even acknowledge parts of LGBTQ+ students’ existence in a space where they spend one-third or more of their day, and adults in these schools would not be able to acknowledge their LGBTQ+ identities or family members. An example of the detrimental possibility of this for the adult hospice/palliative care population is a teacher who is a man married to another man with cancer under palliative care treatment. This teacher would not be able to invite his husband to school events, like a basketball game, because he would risk having to respond “Yes” or lie if a student asked, “Is he your husband?” If he responded truthfully and this bill were law, he would be discussing his sexual orientation and found in violation. If he lied, it could hurt his relationship. Either could potentially contribute to the stress and strain they already face navigating cancer treatment and require more attention by the social/spiritual members of the care team.

Legislators may claim to believe this is not prejudicial and these scenarios for HB 837 are equally applicable to any sexuality or gender, but if we are honest with ourselves, students know (and have known for many years) things about their teachers private lives such as whether or not they are married, if they have children, etc. They learn these facts directly from their teachers at school and through correspondence sent home. We have, wisely, made it this far without deeming it detrimental for our children to know that “Mrs. Smith” is originally from Alabama but moved to Louisiana and got her degree from Louisiana Tech University and has a husband, a son named Bailey, and two dogs, and she loves Reese’s Peanut Butter Cups and camping. We have been wise to do this because teachers and students are community members who, at their best, bring their authentic selves to the learning relationship. So it does strike as particularly prejudicial now to announce such policies when the public consciousness has been raised even slightly more toward realizing LGBTQ+ educators/students/people have a right to exist and participate fully in society. It speaks to a fear that more people – perhaps even our loved ones – will embrace those we other, empathize with those we other, or even reveal to us that they are those we other.

After I wrote and submitted the original version of this reflection for my course, I realized I personally know people who could/could have fit these exact scenarios of being harmed by these policies. Whether they are in the same town or the next state over or hundreds of miles away, these are my people. We belong to each other. They belong.

I also considered how challenging it has been over the past five years for multiple generations of both sides of my family to deal with terminal illnesses, dying, and bereavement related to strokes and cancer. Navigating all the appointments, the payments, the providers, the insurance, the gatekeepers, the equipment, the rules, the calls, the relationships, the emotions, the uncertainty, and, yes, the certainty is enough to break an ill or dying person and their family/community more than a few times in the process. Politicians adding to the mass of these and other life processes with policy that says “Shhh, the kids don’t need to know about your gay cousin” or “No, you should not be legally allowed to get your trans daughter the healthcare that could save her life” or “You can’t shove your nonbinariness down our throats; don’t visibly be you here, be that at home” is a hurt I don’t wish on anyone.

With all this in mind, as I wrote in the previous reflection, social work practitioners* have an ethical obligation to work against the enactment and implementation of these policies because they threaten to encourage or mandate inadequate and harmful services. We have a responsibility to be part of the provision of the best, most timely, and holistic care possible for individuals, families, and communities of every sexuality and gender throughout their lifespans. Our ethical obligation is to do the opposite of these policies – to affirm the right to existence and promote a sense of belonging for people of marginalized sexualities and genders.