Aging LGBT boomers face challenges their straight counterparts don't
by Kimberly D. Acquaviva
Some LGBT elders die without ever calling hospice because they fear being rejected or disrespected by hospice staff.
In the coming years, hospice and palliative care programs in urban, suburban and rural areas alike will increasingly be called upon to provide quality, compassionate care to LGBT elders. An estimated 10 million to 15 million LGBT adults currently live in the United States; according to the 2000 U.S Census, 97 percent of counties have at least one elder in a same-gender partnership. Hospice and palliative care professionals need to understand how the experiences of LGBT elders near the end of life may differ from those of other older adults.
Some LGBT elders die without ever calling hospice because they fear being rejected or disrespected by hospice staff. Since hospice services are predominantly provided in the home and include the family as the unit of care, hospice may be the most intimidating type of care for LGBT elders who are not fully open about their sexual orientation or gender identity.
Hospice and palliative care programs that wish to communicate their acceptance of the LGBT community can do so by playing a visible role in the community — for example, by staffing a booth at the gay pride festival in their region or placing an advertisement in a local gay newspaper. Programs also can support the community by nurturing a welcoming work environment for LGBT staff and providing healthcare benefits to both married and unmarried partners.
For many LGBT elders and their families, the admissions process for hospice and palliative care has the potential either to provide welcome and comfort or to leave them feeling alienated and disconnected. A seemingly innocuous question — ”Are you married, single, widowed or divorced?” — may present a dilemma to LGBT older adults: Should they come out to hospice and palliative care professionals? Fearing discrimination, many of these elders have become accustomed to hiding who they are — and whom they love — from healthcare providers.
Removing the barriers
This barrier to care is relatively simple to remove. Many programs have changed the question about marital status on intake forms to include “partnered” as one of the choices, making the question more inclusive both of individuals in same-gender relationships and of those in mixed-gender unmarried relationships. Once the hospice and palliative care staff know about a patient’s same-gender partnership, everyone on the team must strive to honor that relationship: Same-gender partners deserve the same support that any other spouse would receive from the hospice team.
In addition, hospice and palliative care professionals should recognize that typical LGBT patients and families do not exist. Not all LGBT elders have a partner — some are single, some are widowed, some are divorced and some are separated from a same-gender partner. LGBT elders may have been married to a person of the other gender, and in some cases, they may still be married to a person of the other gender.
Furthermore, some LGBT older adults have children — either through birth or adoption — and some have grandchildren. Some LGBT elders are extremely close to both their family of choice and their family of origin, whereas others may not have had contact with their family of origin for decades. Transgender patients may be male or female and may or may not disclose their status as transgender during the hospice admissions process.
As with the admission of non-LGBT patients to hospice or palliative care, staff must ascertain who has decision-making authority in the event that the patient can no longer communicate or make decisions. This process may be more challenging when assisting elders in a same-gender relationship because the patient’s partner does not have the automatic legal authority afforded to people in heterosexual marriages. Hospice and palliative care staff should honor any advance directive stating that the same-gender partner is authorized to make decisions if the patient no longer has the ability or the capacity to do so.
If members of the family of origin contest an advance directive of this sort, or if there is no directive, extremely difficult and painful conflicts can arise between members of the patient’s family of origin and family of choice — especially if the patient has been estranged for years from the family of origin. Without an advance directive in place, the elder’s family of origin has the legal power to bar the patient’s life partner from the hospital room, even when the patient is dying. That is why advance directives and related legal documents are so important: they ensure that the patient’s wishes are honored and that the basic rights of the patient’s partner are not denied.
Hospice and palliative care programs that seek to provide quality end-of-life care for LGBT elders can take the following simple steps to improve procedures and services.
Admissions and intake process
• Change intake forms to be inclusive of same-gender relationships or partnered status.
• Determine who has the legal authority to make decisions in the event that the patient no longer can do so.
• Ask patients to define their family of choice and family of origin, and encourage them to identify any potential conflicts between the two families.
• Encourage patients to complete advance care planning, as well as legal and financial paperwork.
• Recognize the potential psychosocial issues related to families of origin and families of choice.
• Consider any medical issues related to transgender patients.
• Pay attention to spiritual issues of LGBT elders whose faith traditions do not affirm their identity.
Grief and bereavement counseling
• Support the patient’s partner, especially in the event that the loved one’s death isn’t acknowledged by others as the deep loss that it is for the partner.
• Help surviving partners express grief. Especially for those who are not out, public acknowledgement of their loss may be minimal or absent.
• Advocate for surviving partners whose workplace doesn’t offer bereavement leave to unmarried partners.
• Teach staff about the unique needs of LGBT people at the end of life.
• Allow staff the opportunity to express their misgivings or fears about caring for LGBT elders.
• Reinforce the idea that hospice staff must respect each and every patient and family and must provide the highest possible quality of care.
All older adults deserve comfort, care and compassion at the end of life. Hospice and palliative care programs can open doors and build bridges to ensure that all older adults in their community, including LGBT elders, receive the care and services they need. If your agency doesn’t care for LGBT elders at the end of life, who will?
— Kimberly D. Acquaviva is an assistant research professor in the School of Medicine and Health Sciences at George Washington University, Washington, D.C