Aging and death don’t discriminate, but some people do. Unfortunately, lesbian, gay, bi-sexual, transgender, and queer (LGBTQ) seniors may be afraid to access end-of-life services and may face their terminal illness without receiving the support they need and deserve. Grieving LGBTQ seniors may not feel comfortable seeking support when a partner dies and according to a nationally representative survey of AARP members released in March 2018, three-quarters of them are worried about having adequate family or social supports.
Many hospice providers have taken steps to ensure that their staff and volunteers provide compassionate and inclusive care to those in the LGBTQ community. The not-for-profit organization, Ohio’s Hospice, is leading an effort to increase awareness of and cultural sensitivity to the unique end-of-life needs of this community, with changes in their admission process by requiring staff to respectfully address sexual orientation, gender identity, and gender expression.
Michael Kammer, MDiv, LSW, bereavement counseling professional at Ohio’s Hospice of Dayton and the committee team that is working to ensure Ohio’s Hospice is well situated to provide inclusive, non-judgmental, and culturally competent care to LGBTQ patients and their loved ones, have recommended that in order to be respectful of everyone Ohio’s Hospice serves, all patients should be asked the following questions:
- What name would you like to be called?
- What sex were you assigned at birth? Female, male, intersex, or prefer not to answer?
- What gender do you identify as now? Female, male, transgender male, transgender female, non-binary/gender-queer/neither exclusively male nor female, other, or prefer not to answer?
- What personal pronouns do you go by? He/him, she/her, they/them, other___, or prefer not to answer?
- How would you define your sexual orientation? Heterosexual/straight, gay, lesbian, bisexual, other _____, or prefer not to answer?
LGBTQ patients need to decide whether they can set aside old grievances or accept that resolution is impossible with family members who have rejected them in the past. Facing death, many need to express desires about funeral services and practical matters such as the handling of their belongings.
At each stage of the patient’s illness, a new group of care providers may enter the scene, giving repeated rise to the same fears and possible discrimination and so for LGBTQ patients and their loved ones, end of life care can become a continuation of many of the same issues that plague medical care throughout the LGBT patient’s life:
- How safe is it for a patient to disclose their gender identity, sexual orientation, and who is considered a family?
- Will healthcare providers welcome the involvement of a same-sex or trans partner and/or shared parenthood with that partner in medical and psychosocial decision making?
- Will a home health aide treat their LGBT client with compassion?
- How can a dying LGBTQ patient who seeks spiritual guidance identify a supportive hospice chaplain?
By 2030, there will be an estimated 7 million LGBTQ people in America over 50. About 4.7 million of them will need elder care and services, according to SAGE, an advocacy group for LGBT elders. In a country where most eldercare is left to family, many LGBTQ people are estranged from relatives and don’t have that option. Turning to others for care, whether in assisted living centers, nursing homes, or hospice settings, makes them uniquely vulnerable.
“The fear of living in a situation where they can’t advocate for their own care and safety is terrifying,” said Hilary Meyer, chief enterprise and innovation officer for SAGE. Three-quarters of LGBT people are worried about having adequate family or social supports, revealed the AARP survey.
According to Kaiser Health News, twenty states have laws that specifically protect LGBTQ people against discrimination, but most don’t, noted Gary Stein, a professor at the Wurzweiler School of Social Work at Yeshiva University. Still, a growing number of senior housing and care sites are putting non-discrimination policies in place and training personnel to provide LGBTQ-inclusive care.
The SAGE staff has trained more than 50,000 people at more than 300 sites nationwide, Meyer said. They learn best practices for asking questions that don’t perpetuate stigma. “It’s even something as simple as asking somebody, a woman if her husband will be visiting,” said Meyer, noting that the question forces the person to decide whether to announce her sexual identity. “Having to come out of the closet that way can be very challenging.”
Kammer advises hospice and palliative care professionals to ask about both the patient’s biological and chosen families. Because of the conflict and estrangement that often occurs when a family member comes out, LGBTQ individuals make their own families consisting of chosen friends and others they know they can count on. Staff members need to know who the patient considers to be their family and what role those people will play in their life as they face their end-of-life journey. The care team also asks patients about end-of-life wishes and needs.
To ease the passage through dying for themselves and their loved ones, LGBTQ patients need understanding and support from palliative and hospice care professionals and spiritual counselors. The National LGBT Cancer Network offers LGBT cultural competence training to healthcare systems across the country and the National Resource Center on LGBT Aging has developed a helpful tool for patients looking for a hospice provider that has received training in issues related to caring for the LGBTQ community. Click here to use this resource.
Another helpful source in accessing affirming and supportive care is from The National Resource Center on LGBT Aging who developed “Ten Tips on Finding LGBT-Affirming Services.”
Familiarity with LGBTQ supportive organizations helps care providers ensure that LGBT patients and their families of choice are offered safe and welcoming referrals. After death, familiarity with LGBTQ supportive organizations helps care providers ensure that LGBT patients and their families of choice are offered safe and welcoming referrals. After death, end-of-life care providers should ensure that grief support is extended to the people whom their patients have identified as the bereaved, including referrals to LGBTQ bereavement groups.