June 2022

Patient Care Through the Lens of Pride Month

By Ramon Jacobs-Shaw, MD, MPA

Some years ago, I sat with Jack at the bedside of his partner, Norman. Although he had many chronic medical conditions, Norman’s main challenges were progressive Parkinson’s disease and dementia. These left him debilitated and bedbound, and eventually plagued him with multiple infections and bedsores. Due to constant aspiration (inhalation of food or liquid), Norman was unable to eat or drink towards the end of his life. 

Throughout some of this agony, I sat at Norman’s bedside as Jack, who was Norman’s only caregiver, held tightly to his hand, agonizing over a decision. Would Jack place his partner in hospice and resolve to focus solely on Norman’s comfort, rather than on medically curative treatments? 

The creases in Jack’s face told a lifetime’s worth of stories. Jack and I had many conversations — although all of them focused on Norman, not all of them focused on Norman’s hospitalization. In a well-worn leather photo book that he’d brought with him to the hospital, Jack shared pictures of the two of them together, a visual arc of their love. Pictures taken on the beach at Fire Island; at dinner parties at their home with friends; deep in conversations or embraces with close family members. Across this array of photos and memories, there were almost always smiles between Norman and Jack.  

Some of these photos captured moments of intimacy: a hand on the shoulder, or close and comfortable seating, legs touching. Most of the photos, however, suggested distance between the two men, reflecting a different era in which being an out gay person was stigmatizing and, quite literally, dangerous to one’s life. 

And as we looked through the photos together, we knew, in this very different sort of intimate moment between Norman and Jack, they faced an altogether different sort of struggle. 

Ultimately, Jack made the decision to place Norman in hospice. With their niece by Jack’s side, he eventually said goodbye to Norman and watched him pass away.  

Not long after getting to know Jack and Norman, I met Lorraine, a rambunctious lady full of sass and vigor. Lorraine was in the hospital to receive one of many rounds of chemotherapy for breast cancer. 

For all that therapy, and for all of its challenges, Lorraine’s wife, Maria, joined her in support. Where Lorraine maintained an upbeat spirit, Maria stayed rooted in details and plans, outcomes and expectations, concerning Lorraine’s condition. 

Maria wanted to know what was around every corner. Lorraine wanted to focus on fun. They were a perfect balance. 

I came to know Lorraine and Maria before the 2013 landmark Supreme Court decision struck down the ‘Defense of Marriage’ Act and allowed federal recognition of same-sex marriage. In many of our conversations, Maria openly discussed our hospital’s stance on visitation rights for same-sex spouses. More than that, she wanted to know about what was in the cards for her and Lorraine concerning other issues in the healthcare landscape: medical decisions, and emergencies outside of the United States. What would happen to their children in the event of their own illness or death? What about estate planning? 

These were, and continue to be life-or-death questions. Jack, Norman, Lorraine, and Maria represent just a sliver of the more than 20 million people in the United States who identify as something other than heterosexual. Across a range of healthcare settings, we see and care for them, but we don’t always have full knowledge of all their identities. We don’t always hear the depths of their fears and struggles. 

Nearly one in six LGBTQ+ people avoid healthcare, including preventative and urgent care visits, altogether, due to fear of stigma.

A recent Gallup poll revealed that, as of 2022, 7.1% of Americans identify along the LGBTQ+ (lesbian/gay/bisexual/transgender/queer/questioning/+) spectrum. This figure is double what it was in 2012, the last time Gallup reported on this topic. While acceptance of LGBTQ+ persons by the public has increased at an astonishing rate over the past 20 years, many people who identify along that spectrum still face fear, stigma, and marginalization.  

These harsh realities lead to bias and discrimination in the workplace and elsewhere, prompting many to choose not to reveal their respective sexual orientation and/or gender identity amongst their work colleagues or even among some family.  

Additionally, members of the LGBTQ community still face challenges with school bullying, denial of public accommodations, education resources, and military service, to name a few.  

Heartbreakingly, none of us can be assured patients like Norman and Lorraine will always be treated in the same ways as their heterosexual peers. Today, more than half of people who identify as LGBTQ+ have experienced bias and discrimination when seeking healthcare. These biases range from homophobic slurs to microaggressions, as well as both nonaggressive and aggressive harassment from healthcare staff. Additionally, nearly one in six LGBTQ+ people avoid healthcare, including preventative and urgent care visits, altogether, due to fear of stigma.  

These stats are truly deadly. Without proper preventative care, and certainly without attentive care to more urgent conditions, the worst of outcomes can occur. Additionally, bias and discrimination unquestionably affect a person’s private health, self-concept, and well-being — facts which increase the risk for suicide or depression and anxiety, as well as for substance use, and physical and verbal violence. 

As we celebrate Pride Month this June, and recall the 1969 Stonewall Uprising in New York City and the start of the Gay Rights Movement, let’s also remember to champion the health and safety of everyone, even those hands we may never ourselves hold in their final moments.  

Far too often, the hands LGBTQ+ people encounter are ones of hate or dismissal. Hands that shove them to the periphery of society and make inaccessible many of the services and programming upon which so many rely. Perhaps by embracing that enduring kindergarten lesson about the ‘golden rule’ — treat everyone as you would want to be treated — we can instead hold tightly to each other and build a safer, healthier world.