Patient Care Through the Lens of Pride Month
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.
