Seeking LGBT-inclusive hospice care? Here are some things to look for

Cover of "LGBTQ-Inclusive Hospice and Palliative Care "
Cover of "LGBTQ-Inclusive Hospice and Palliative Care "

Discrimination against LGBT people is unacceptable in any instance. But it is particularly unforgiveable when encountered in a hospice or palliative care environment.

When an LGBT person has a serious or life-limiting illness and seeks palliative care or hospice care, they run the risk of isolation and marginalization at the precise time when they most need support. LGBT family members of straight patients seeking hospice care are also vulnerable.

A 2016 survey quoted in The Atlantic article “LGBT Seniors Are Being Pushed Back Into the Closet” by David R. Wheeler,” found that LGBT seniors were frequently mistreated by care-center staff. Abuse  included cases of verbal and physical harassment and refusal of basic services. Some respondents reported being prayed for and warned they might ‘go to hell’ for their sexual orientation or gender identity.”

Stripped of any sense of comfort while facing a serious illness some find their situation all the more excruciating. LGBT adults who’ve already experienced a lifetime of discrimination may be particularly vulnerable as they seek out care.

When seeking LGBT-inclusive hospice and palliative care for ourselves or a loved one, it is critically important to know what to look for. In the handbook for hospice and palliative care professionals, LGBTQ-Inclusive Hospice and Palliative Care by Kimberly D. Acquaviva (Harrington Park Press) offers guidelines that translate easily into advice for those seeking palliative and end-of-life care. It is the Book of the Year for Palliative Care and Hospice category from the American Journal of Nursing.

Beyond sensitivity training in caring for LGBT patients, the handbook reiterates the broader tenet of never assuming anything about patients, family members, colleagues, or employees. Never assume the gender a person identifies as or the pronouns they want used to refer to themselves. Never make assumptions about how a person wants to be addressed, never assume that an LGBT person’s family either rejects or embraces theim and never assume anything regarding spirituality.

The handbook discusses how to conduct an inclusive “intake interview” and how to understand complex family dynamics. It offers guidance on topics that may not be as obvious, but are equally critical, such as whether or not an LGBT healthcare professional should disclose their gender identity and/or sexual orientation in an effort to bond with the patient. Professionals need to be mindful of not inadvertently “outing” patients whose sex anatomy and gender identity do not match by using their preferred gender pronouns, and making sure patients’ wishes are legally protected with a healthcare power of attorney.

For those searching for a hospice or palliative care organization, one of the most important things to look for is a prominently displayed, LGBT-inclusive, nondiscrimination statement.

The statement should, at minimum, include the phrases “gender identity” and “sexual orientation,” in addition to the other phrases that commonly appear in nondiscrimination statements. The statement should appear on the organization’s website homepage — not buried on some other page and be included in any printed marketing materials.

Type the terms “LGBT,” LGBTQ,” “gay,” “lesbian,” “bisexual,” “transgender,” “discrimination,” “gender identity,”  gender expression,” or “sexual orientation” into any search boxes embedded on the organization’s homepage. It should yield a link to the nondiscrimination statement.

In order for a hospice or palliative care employees also feel safe, comfortable, and valued. Look at the organization’s non-discrimination statement to make sure it protects LGBT employees. Also, look for staff diversity that don’t appear awkward, forced, or worse, stock photos of crayon-box lineups. Ads in LGBT newspapers and websites, an information booth at a local LGBT Pride festival, and availability of an LGBT bereavement group is ideal.

There’s an easy way to assess how inclusive a hospice or palliative care program really is: If you visit the program’s offices just look for gender-neutral bathrooms. A willingness to address the needs of ALL people by installing gender-neutral bathrooms is a pretty good indication of its commitment to LGBT inclusivity.

LGBTQ-Inclusive Hospice and Palliative Care is published by Harrington Park Press, and distributed by Columbia University Press.