Start End of Life Planning Early to Reduce the Chances of Guardianship

February 2014

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In October 2012, as Hurricane Sandy devastated the Northeast, Rebecca, 72, and her partner of 38 years, Barbara, 85, holed up in their New York City apartment to weather the storm.

Over the course of four days, with no electricity or water, Rebecca began noticing a difference in her partner. “I realized that she was not taking in information and would ask me again and again, ‘Why isn’t the light on?’ ”

Shortly after the hurricane, Barbara was diagnosed with Alzheimer’s disease.

As Barbara’s dementia worsened, her doctor and Rebecca helped her execute a healthcare proxy—a legal document allowing a person to appoint someone to make medical decisions in the event of incapacitation—to complement her existing will and living will. These advance-planning documents provided security for Barbara that her wishes regarding medical care and the distribution of her belongings would be respected.

According to Rebecca, Barbara still lacks a financial power of attorney. They are fortunate to live in a state that recognizes same-sex marriages. As Barbara’s legal spouse, Rebecca will likely be the lead decision-maker on most of her healthcare and financial matters.

Yet their situation would change if Rebecca’s capacity diminished. The challenges would intensify if none of these advance-planning documents were in place because, unlike Barbara, Rebecca has not taken steps to plan should she become unable to make healthcare and financial decisions for herself. Without the execution of these documents, and with a partner who has Alzheimer’s, if Rebecca became incapacitated, it’s a very real possibility that a court-appointed guardianship may one day be necessary to help with her medical care, financial decisions and property matters.

According to the National Guardianship Association’s standards of practice, a legal guardian is a person or entity appointed by a court with the authority to make some or all personal and-or property decisions on behalf of an incapacitated individual. Common reasons for diminished capacity include dementia, developmental disabilities and traumatic brain injuries, among others.

The court in guardianship proceedings often look to “next of kin”—individuals related by blood or marriage—to determine guardianship appointments, which can leave out family of choice, such as close friends. In a worst-case scenario for Barbara, unless the proper advance-directive legal documents were filed, the legal guardian may not know her final wishes and might not have her best interests at heart. This is a challenge for many LGBT people with limited, legally unprotected or estranged next of kin, as well as for married same-sex couples in states where same-sex marriage is not legal.

Many LGBT people enter these life moments in crisis, without proper legal arrangements. They encounter a long-term care and legal system that’s fraught with bias—a lifelong experience for many—and they remain unaware of available resources to support these decisions.

In Rebecca’s case, she feels too overwhelmed by daily life to consider the gravity of guardianship and advance directives.

“Everybody has the same problem,” she says. “They want to care for that person. And they don’t want to really think about what’s going to happen tomorrow or the next day, down the road. There’s so much you have to do every day.”

Throughout her 10 years at SAGE, Senior Director for Programs Catherine Thurston has witnessed a variety of reasons preventing LGBT older adults from establishing advanced directives and many LGBT people lack these documents.

Conversations about diminished capacity and aging are charged and many people prefer to avoid them. Also, Thurston says that a person’s closest loved ones—a spouse, a best friend—might not be the best, most rational person to designate as a beneficiary or guardian, which is also a difficult discussion to have, especially if these relationships are strained. And many LGBT elders focus exclusively on survival, having lived through the AIDS epidemic or personal life trauma, making conversations or documents about incapacity off-limits.

Yet Thurston knows these discussions become more difficult after a person loses capacity, with tougher consequences. “You don’t want to put people you love in the very difficult place of having to make these decisions for you,” she says.

LGBT people are also at greater risk of needing a guardian should they become incapacitated, because they are more likely to be single and many are estranged from their biological families, which the legal system often privileges in a guardianship proceeding.

And with few supports, an LGBT person dealing with dementia may be unable to manage their personal and-or property needs. Without advance directives, if the court appoints a guardian, this individual will have no documented information on the LGBT person’s final wishes.

Thurston recounts the story of a gay man she knew who passed away and his son couldn’t decide what to do with his father’s body, which remained in the morgue for a month.

“People need to talk about these issues—emotionally, practically and ethically,” says Thurston.

SAGE Case Manager Bill Mendez runs support groups in New York City for gay and bisexual men, including a group for HIV-positive longtime survivors at SAGE and a cancer support group co-led by SAGE and CancerCare, a national organization that supports people dealing with cancer.

For some members of Mendez’s support groups, the fear discrimination in moments of crisis is a driving force behind not executing advance directives.

Mendez describes the concerns of a gay member in one of his support groups who, with his spouse, had various end-of-life documents in place. “Their fear was that the medical establishment was not going to honor those wishes regarding quality of life. He made it clear, ‘I don’t want to be hooked up to machines. I just want to go peacefully.’ His concern was whether his doctor would abide by his wishes and his partner’s wishes, or would the doctor just say, ‘No,’ and continue to prolong his life.”

These fears might be overstated and they don’t negate the benefits of proper planning, says Thurston.

To aid in planning, various national organizations offer instruction to ensure one’s final wishes are respected. In addition to living wills, healthcare proxies and financial powers of attorney, other documents include wills, beneficiary designations, real estate ownership, funeral directives and hospital directives.

Lambda Legal, a national LGBT rights group, offers advice on legal and financial planning measures. SAGE’sNational Resource Center on LGBT Aging, a federally funded technical assistance center, maintains an online clearinghouse of educational resources on end-of-life issues, caregiving and more. And the Alzheimer’s Associationprovides a 6-step “legal plans” resource for people assisting individuals with dementia.

Online resources are abundant, with clear instructions and online submission capabilities. Additionally, the Cardozo School of Law Guardianship Clinic in New York City offers assistance to families and loved ones with questions concerning adult guardianship.

And while an attorney can be helpful in long-term planning, and many nonprofits offer legal support, most of these documents do not require approval by an attorney, says Thurston.

More importantly, she advises that these documents be updated, filed regularly and made readily available—taped on a refrigerator, placed in one’s pocketbook and shared with one’s network of friends, family members and a primary physician.

These days, Rebecca focuses on managing Barbara’s health one day at a time. Rebecca admits she hasn’t completed any advanced directives for herself, though she’s not clear on the rationale. “I don’t know, to tell you the truth. Because I’m younger, maybe. And I feel it’s not necessary, you know. She [Barbara] knows where everything is if something happened to me.”

Rebecca pauses, then adds, “You’re probably right. I should probably take care of that.”

Read the original article here.

Robert Espinoza, MPA is Senior Director, Public Policy and Communications at Services and Advocacy for LGBT Elders (SAGE) in New York, N.Y.

This article was brought to you by the editorial committee of ASA’s LGBT Aging Issues Network.