by Ellen Rand
In the course of doing research for my book about end-of-life issues, I interviewed many pathfinders and innovators who were forging better care for people struggling with serious advanced illness. Earl Collom, a social worker and facilities liaison in Manhattan for the Visiting Nurse Service of New York’s Hospice and Palliative Care service, was one such pathfinder I had the opportunity to interview.
He told me about having visited one gay client, and noticing the many photos of people, places, friends and travel that were displayed on the walls and shelves of the apartment. During his next visit, many had been removed. When Collom asked why he had done that, the client replied, “I didn’t want to offend anyone.”
Imagine yourself living at home but frail, ill, and in the most vulnerable time of your life, worried that whoever is caring for you – a visiting physician, nurse or home health aide – is hostile to the way you’ve lived your life. What would you do? Would you, like Earl Collom’s client, hide who you are? Would you perhaps refer to your partner or spouse as a roommate? Or: imagine that you are lesbian or gay and caring for your partner or spouse. Can you freely hold her or his hand in a physician’s waiting room or hospital room? Could you openly hug her or him if there is bad news to confront?
The fact is, when advanced illness strikes, elders who are gay, lesbian, bisexual, transgender or gender non-conforming face more challenges than their heterosexual peers. Those from the LGBT community are likely to have more complex health conditions than their heterosexual peers, made worse by postponing or not seeking care, often because they are fearful of reactions to their life choices. Social isolation is a major issue as LGBT seniors are three to four times less likely to have children, twice as likely to live alone and twice as likely to be single. And they may be in poorer financial straits. Going back into the closet out of fear of neglect, disapproval or abuse, is not uncommon.
Their fear is based on reality. A landmark 2011 report, “When Health Care Isn’t Caring,” published by Lambda Legal reports on a survey of nearly 5,000 people about discrimination against LGBT people and those living with AIDS. About half of the respondents reported having experienced refusal of needed care; healthcare professionals refusing to touch them or taking excessive precautions; being blamed for their health status; or healthcare professionals being physically rough or abusive. The number of transgender individuals reporting these events was dramatically higher than the average. In fact, the report showed that 5.1 percent of transgender individuals did not seek healthcare at all.
The medical field still has a lot to learn about LGBT health issues. For example, in a 2011 survey of deans of medical education at 176 medical schools in the United States and Canada, the Association of American Medical Colleges found that the median reported time dedicated to teaching LGBT-related content over the course of the four-year curriculum was five hours. Against this difficult backdrop, the good news is that there are many people and organizations doing great work to create safe and welcoming environments for LGBT populations.
One example is Boulder County Aging Services in Boulder, Colorado. Ash Bell, who heads that office’s Project Visibility training program, had some advice for those interested in reaching out to these populations:
- LGBT elders want to know that you see them and hear them and that their care will be the kind they want.
- If you’re considering training in cultural competence, don’t reinvent the wheel. There are many outstanding existing resources for training programs available to you.
- Use the right pronouns and the right names, which may be different from what appears on legal documents. Simply asking if a patient has a preferred pronoun is a great way to signal to your patient that you have thought about the issues in their life.
- Ask open-ended questions. This gives the patient a sense of ownership over their own health status.
- If you want to start building your own outreach program, talk to the people you want to serve and then listen to what they have to say about their needs.
Without question, greater sensitivity and skills are needed as this population ages. Compassion, kindness, and the ability to really listen to patients and understand their wishes and goals: these are the bedrock skills of the hospice and palliative care practitioners I have worked with and interviewed. They know how to build trust, one visit at a time, and how important it is to honor their patients’ lives and their struggles. Other health care professionals would do well to emulate them to address the health concerns of aging LGBT populations who have to confront serious illness.
Ellen Rand is a journalist, hospice volunteer with Holy Name Medical Center in Teaneck, NJ, and author of the book “Last Comforts: Notes from the Forefront of Late Life Care.” She blogs at http://lastcomforts.com. For more resources on improving care of LGBT elders, please contact the author.