The end of life can be a time of reconciliation. But often not for LGBTQ people who face rampant discrimination and are often shut out by the way people talk and listen to them. Let me give you an example.
“We’re looking for room 112,” Aurelia, the hospice nurse, told me as we exited the elevator. We were in Denver; what happened next actually occurred, though the names (except mine) are changed to protect privacy.
“Thanks for coming,” a woman said as she answered the door. “I’m Barb, Joan’s friend.”
The kitchen sink was full of dishes and 6 prescription bottles sat on the counter. “Joan’s on the couch,” Barb said. We walked along the shag carpet and there was Joan: sitting on a mid-century couch, oxygen attached, next to a worn-in piano with the music propped up as if someone had just been playing.
“I’m Aurelia, the hospice admission nurse. It’s nice to meet you. This is Carey, she’s a researcher and is interested in helping us do better in hospice. Is it okay she shadows today?”
“Sure,” they both said. Barb came and sat in a chair diagonal to the sofa so she could make perfect eye contact with me, Joan and Aurelia. And then she placed a glass of water in front of Joan.
The hospice admission conversation is incredibly complex and delicate. Patients have 6 months or less to live, and often are experiencing fears of dying, of being in pain, of being alone. The context matters, too. Misunderstandings and cultural biases can interfere. For the next 90 minutes or so, a hospice admissions nurse or social worker explains what hospice is and isn’t, discusses medications, covers legal matters, asks the patient consent to hospice and makes plans for what’s next. It’s a challenging conversation for everyone. And, then, they’re off to meet the next patient.
Aurelia got started and focused most of the conversation on the clinical (the way she was trained): the illness, the pain, the medications.
“You’re not married, right? No kids?” Aurelia asked Joan towards the end of the visit.
“Correct,” Joan said. “Barb helps me get to my appointments. And cooks.”
“You have a good friend!” Aurelia said. “And that’s all I need for today. You’ll be hearing from someone from our team soon. Carey is going to stay and ask you both some questions for her project. Do you have any questions for me before I leave?”
There was a pause and then, “No we don’t,” they said at almost the same time.
Aurelia left with her signed paperwork for Joan to enroll in hospice.
And I felt this enormous sadness. Barb and Joan are not just friends I said to myself as Aurelia left. I know this coded language that so many of us in the LGBTQ community use to stay within the dominant and binary “scripts” to stay safe. This coded language – staying silent — nearly destroyed me, as it does to others in the LGBTQ community.
Barb and Joan had been together 28 years.
“Why didn’t you tell Aurelia that Barb is the love of your life?” I asked Joan.
“It’s just easier to not go there. I’m tired. I’m scared. I don’t want it to affect our care. It’s habit for us to just say we’re friends,” Joan said in the softest voice.
My heart hurt as I left room 112. So much of what was happening for Joan was clinical. But so much was non-clinical: how well Joan and Barb they understood what hospice meant, how well they were understood, how much they were able to participate in the conversation, how much they were able to express openly and safely who they are, who they love, and what they wanted — and didn’t want — at the end.
These are communication problems that affect clinical outcomes, and the care people receive.
Barb being marked as a friend meant she would not be included in care decisions or planning for Joan. It meant Barb was afraid that if they reached Joan’s hand as the nurse was talking about what the end of Joan’s life might look like, that their care might suffer. It meant that when something happens to Joan, no one will offer Barb bereavement support for her loss. She was just the emergency contact on paper for hospice.
In a 2020 survey of more than 850 hospice professionals, 24% of staff reported directly observing discriminatory behaviors towards lesbian, gay, and bisexual patients, and 21% observed discriminatory behaviors toward transgender patients. Behaviors like eye-rolling when couples were holding hands, not involving the patient’s partner in goals of care conversations, and even disregarding patient wishes.
Hospices often operate on an entrenched cultural narrative of, “we treat everyone the same.”
The thing is, we should never want to treat everyone the same, because we aren’t all the same.
Imagine the difference the outcome could have been for Barb and Joan – and millions of other LGBTQ people – if someone broke the script and asked something like:
“What do I need to know about you as a person to take the best care of you that I can?”
This might have given Barb and Joan the space to share critical information for their care when they needed it the most.
To not be able to be who you are and talk about who you love is an inherent violation of dignity for all people. Failure to invest in and protect LGBTQ people throughout life, and especially at the end of life, is a defining challenge that must be addressed.
Carey Candrian, of Boulder, is an associate professor at the University of Colorado School of Medicine and on the Board of Directors at GLMA: Health Professionals Advancing Health Equity.
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