© Springer International Publishing Switzerland 2016
Debra A. Harley and Pamela B. Teaster (eds.)Handbook of LGBT Elders10.1007/978-3-319-03623-6_2222. End-of-Life Issues for LGBT Elders
(1)
American Bar Association, Chicago, IL, USA
Abstract
This chapter explores the end-of-life issues and what makes end-of-life issues different for LGBT adults. The laws and policies relating to end-of-life have many presumptions that favor family, specifically biological or adoptive family and family from marriage. These presumptions impact health care decision-making, visitation policies, health insurance, health benefits, retirement plans, taxation, and inheritance rules. The expansion of same-sex marriage is changing this picture, but a great deal of work remains to be done. Societal homophobia impacts access to care, relationship recognition, and even funeral planning. Ageism is common in some parts of the LGBT community, casting a shadow over many LGBT elders. Many of the current generation of LGBT elders survived the darkest days of AIDS and HIV, and this experience influences their views on aging and end-of-life.
Keywords
AgeismPresumptionsIncapacityInheritanceSurrogateOverview
This chapter will explore how personal relationships and family structure impact LGBT elders and end-of-life decisions. The chapter will examine how legal presumptions and bias in laws and standard protocol favoring marital and biological family impact LGBT elders. The chapter will review the basics of planning for incapacity health care decision-making and inheritance and how LGBT elders may need to plan ahead for the outcome they desire. Homophobia is still a factor in our society and is ageism can be especially virulent in the LGBT community. All of these factors influence later life and dying for LGBT elders.
Learning Objectives
1.
Readers will develop an understanding of how family structure and possible estrangement from with biological family impact end-of-life for LGBT elders.
2.
Understand how legal presumptions and bias in laws and standard protocols impact end-of-life issues for LGBT elders.
3.
Articulate how the generation that survived the early years of HIV/AIDS is impacted by that experience.
4.
Identify the basic tools for planning for incapacity and estate planning and why completing them is especially important for LGBT elders.
5.
Identify ways that homophobia and ageism impact LGBT elders.
6.
Understand the change that growing access to same-sex marriage will have on end-of-life for LGBT elders.
Introduction
The purpose of this chapter is to highlight the factors that make end-of-life issues different for LGBT adults. Many factors, including laws, social norms, and cultural values, impact how people live and the decisions they make near the end-of-life. Our personal beliefs and values, our interaction with loved ones and community, social and cultural expectations, and laws, all impact our ability to live and die as we choose. Everyone is going to die, and volumes are written every year about later life, dying, and death. The majority of the writing focuses on heterosexual families; however, this chapter will focus on what sets these issues apart for LGBT adults. LGBT elders are less likely to have children, more likely to be estranged from families of origin, less likely to have marital family (a spouse and in-laws), less likely to fully self-disclose to health care providers, likely to have experienced the death of a large number of contemporaries at a young age, and working in a legal system that favors via preemptions and assumptions martial and biological family. Clearly, each of these situations can produce adverse outcomes for LGBT elders at the end-of-life.
Health Care
End-of-life health care issues for LGBT adults gained national attention in 2007 with the ordeal of Janice Langbehn and Lisa Pond. During the winter of 2007, Janice, Lisa, and their four children traveled from the state of Washington to Miami, Florida, to take a Caribbean cruise. Shortly before boarding, Lisa suffered a brain aneurysm and was rushed to a local hospital. Despite offering to fax a living will and durable power of attorney for health care, Janice was not allowed to make health care decisions or visit with Lisa for hours. Janice and the children were isolated from Lisa as her condition worsened and she was moved to intensive care. A hospital social worker told Janice that she was “in an anti-gay city and state.” Janice and the children were not allowed to see Lisa until Lisa’s sister arrived just minutes before Lisa died (McCorquodale 2013.) The saga made the national news when Lambda Legal sued the hospital. As part of a settlement, the hospital agreed to change policies and train staff to be more responsive to LGBT families (Legal 2008).
In April 2010, President Obama issued a memo directing the Department of Health and Human Services to take steps to assure health care decision-making and hospital visitation by LGBT families (The White House 2010, April 15). Fifteen months later, HHS released new regulations directing health care facilities that receive any federal funding (virtually all do by treating Medicare or Medicaid patients) to create new policies that include informing LGBT patients of their right to designate visitors and to not discriminate based on gender identity or sexual orientation (Legal 2008). As of 2013, only 26 states have addressed the issue of hospital visitation by statute, leaving this important issue up to individual facility policy in nearly half of the states (Human Rights Campaign 2013). Hospital Visitation Laws [Fact sheet]. Retrieved from http://hrc-assets.s3-website-us-east1.amazonaws.com//files/assets/resources/hospital_visitation_laws_12-2013.pdf).
Discrimination and Bias
LGBT elders are at risk of bias and discrimination on multiple fronts. Despite great progress, we live in a society with a heterosexual bias. An opposite-gender spouse is the default assumption. Gender choices in application or information forms are limited to male and female, leaving intersex and trans persons with no appropriate choice. Homophobia is still common. A survey of LGBT elders found that the vast majority, if needing institutional long-term care, would choose to be closeted about their sexuality and, if ever receiving in home care, would fear mistreatment by caregivers based on sexual orientation or gender identity. LGBT (2010) older adults in long-term care facilities. A fear of discrimination by health care service professionals is cited as a major fear among LGBT elders (Knauer 2010).
Ageism is widespread in society and in the LGBT community. Ageism especially impacts the gay male community with youth and sexual attractiveness being a significant focus of traditional gay culture and society (Knauer 2009). Older gay men are rejected by their younger peers. For example, one man speculated that he could stand nude in the corner of gay bar and not be noticed. Another joked that a gay man is dead at 30 (Arana 2013, August 22). Much work is needed in legal, social, and policy areas for LGBT elders to age in dignity and without fear (Knauer 2010).
End-of-Life, Death, and Dying: What Makes LGBT Elders Different from Others?
Dying and death are a universal part of life. The difference for LGBT elders is in the likely mixture of family of origin, marital, and chosen family. Family of origin or biological family is the family a person is raised within, including birth or adoptive parents, siblings, and blood relatives. Marital family includes a spouse and in-laws. Chosen families are the “network of friends drawn together by affinity rather than consanguinity that provide a wide arrange of family support” (Knauer 2009.) For gay and lesbian adults, chosen family frequently takes the place of marital family. This is especially true in states that do not allow or recognize same-sex marriage. Some LGBT adults experience “estrangement and distance from families of origin” and form chosen families in the place or biological family (Knauer 2010.) The law, however, frequently views chosen families, as strangers and outsiders often leaving chosen family with little ability to make health care decisions without legal documents.
Adult children and grandchildren play a major role in end-of-life social interaction and health care. Adult children often provide a social network, act as caregivers, and participate in making end-of-life health care decisions. LGBT elders are less likely to have children, an estimated 37 % of LGBT adults have children (Gates 2013), and by comparison an estimated 74 % of all adults have children (Newport and Wilke 2013, September 25). Desire for children is still the norm in USA (Newport and Willke 2013). LGBT elders who do have children may be estranged from them. “Coming out” to children and the risk of rejection is a great fear of LGBT adults. The mixture of chosen, marital, and biological family is a barrier, which complicate end-of-life issues for LGBT elders.
Society and the law create preferences or presumptions that favor families of origin and marital family. Heterosexuality is presumed in social interaction. When asking about a person’s spouse, the societal norm is to ask about a spouse of the opposite gender. A female hospital or nursing home patient will, by default, be asked whether she has a husband. Statutes codify these presumptions and preferences in health care decision-making, visitation in a health care facilities, benefits eligibility, survivorship, funeral planning, taxes, and inheritance rights. Generally, preferences and presumptions in the law can be overcome with legal planning.
It Gets Complicated
When working with LGBT elders, it is easy to make generalizations and assumptions. As with any population, generalizations and assumptions can lead one astray. The first generalization is that LGBT adults are not married. Widespread same-sex marriage is a relatively recent development; estimates in early 2015 are that about 70 % of the US population lives in a place that allows or recognizes a same-sex marriage. Experts agree that there are over 1000 federal benefits for married couples. It is expected that same-sex marriage will become increasingly common in coming years. As of the production of this book, the US Supreme Court is hearing law suits against states that do not recognize same-sex marriage.
Discussion Box
1.
Same-sex marriage is changing the face of LGBT life in the USA and much of western Europe. Experts agree that there are over 1000 federal benefits provided to legally married couples in the USA. Yet, there is significant religious opposition to same-sex marriage in the USA. Discuss separation of religious and governmental issues in same-sex marriage.
2.
End-of-life is a time when families gather to provide care and say good-byes. Discuss how this is impacted when the person nearing the end-of-life is LGBT.
3.
In a recent survey, the vast majority of LGBT adults responded that if they needed long-term care, in their home, in an inpatient setting, they would be reluctant to disclose their sexual orientation or gender identity to caregivers. This fear forces committed couples in long-term relationships to act like close friends instead of spouses.
During their lives, many lesbian and gay adults have entered into opposite-sex marriages. Marriage brings with it economic, legal, and social benefits and can be seen as a source of security. One article described gays and lesbians in opposite gender marriages as people who “hid(e) behind the pillars of convention” (LeDuff 1996, March 31). Some lesbian and gay adults enter into opposite-gender marriages hoping to blend in and live what prevailing society considers a normal adult life. Marriage can be the ultimate hiding place for sexual orientation or gender identity. A desire for children leads some lesbian or gay adults to enter into opposite gender marriages—sometimes with full knowledge by both partners—sometimes without.
For a bisexual adult, having an attraction to members of both genders is part of his or her core sexual orientation and gender identity. Many bisexual adults marry a person of the opposite gender, and some then act on their same-sex attraction, resulting in a complex mixture of marital and chosen family. It is not uncommon for a bisexual adult to be married to an opposite gender partner, with or without children, and at the same time to have a same gender partner. In many instances, the martial partner does not know about the same-sex partner, in other cases they do. This complex mixture of martial and chosen family is far outside the societal norm. In the event of a health crisis or end of life, this complex mixture may function as a family, or may exclude one of the partners from end of life and death.
Trans includes a spectrum of individuals whose primary sexual identity or gender expression is inconsistent with the gender assigned at birth. This can range from physical expression or dressing in a way not expected by society to persons seeking gender reassignment surgery. A person, who self identifies as trans or gender non-conforming, or queer, may be heterosexual, bisexual, or gay/lesbian and may marry members of the same or opposite gender. Persons who have had gender reassignment surgery and legally changed the gender designation in official documents have overcome the barrier to opposite-sex marriage in many states. Disclosure of sexual orientation can be a choice: a person’s appearance that is perceived as being inconsistent with societies gender expectations can be difficult or impossible to conceal.
Another generalization is that LGBT elders do not have children. Census data show that 37 % of LGBT adults have children (Gates 2013). A desire for children is a strong driver of human behavior. Most commonly LGBT adults have children from opposite-sex relationships, marital or non-martial. If the relationship breaks up after the children are born, sexual orientation or gender identity is sometimes, but not always, used to isolate the children from the LGBT parent. As children mature, some may reject or self-isolate from the LGBT parent. Increasingly, same-gender couples are having children. Same-sex couples can use surrogates , or artificial insemination. Some bypass the medical assistance to conceive children, sometimes resulting in child support and paternity issues (Narayan 2014). In many states, same gender couples can adopt, or one of the two can adopt. End of life issues are family issues, and any factor that isolates parents and children complicates end of life.
Case Study
Eddie’s story
I was born in 1928 and grew up in Louisville, Kentucky. I knew I was different as a kid. I was drafted in World War II and spent three years in the Navy, and I fell in love. Fred was his name, and he was gorgeous. We served on the same ship, palled around ports in the south Pacific, and pledged our undying love to one another. We talked for hours about how we would spend our lives together. When the war ended, we were discharged on the west coast and went to Los Angeles. I worked as desk clerk in a hotel, and Fred and I shared a room and everything else for a few weeks. He went home to visit family in Iowa saying he would be back in a couple of weeks. Three weeks later I received a letter from him. He said what we did was not right, and he could not live like that and was going to marry the girl down the street and try hard to be normal. I was heartbroken. I only saw him once years later, and he denied that we ever loved one another.
After a few months, I went home to my mothers’ house and started college. I was hanging out on the front porch talking with the girl next door. Over a couple of weeks, I told her everything, about Fred and love and broken promises. One day she said, “Why don’t you marry me?” I explained that I really preferred guys. She reasoned that we both wanted children; she did not care about sex as long as I would do my part to have kids. She wanted a best friend for life. She said, “If I marry you, I will never be bored.” We went across the river to Indiana one afternoon and got married by a justice of the peace. It was three weeks before I told my mother. Mom shook her head, saying it would never work. We have been married almost 50 years. We had three kids. We had a “don’t ask don’t tell policy.” When she was away, I could go out with the boys. When I was out of town for work, anything goes, as long as I come home. Oh, the fun I have had over the years. If I had kept a diary, the book I could write. But, I never would have written anything down. In those days, people whispered behind their hands about someone being “different,” in the end for me, it was always, but he is married with children. That saved my skin several times. We are best friends, we are good for one another, and we take care of one another. But, I have never stopped thinking about Fred, and love.
It is important to be careful about the generalization that LGBT adults will be estranged from marital and biological family. Many families are very accepting of LGBT family members, while others actively reject LGBT family members. An individual assessment of the nature of family relationships is essential to helping an LGBT elder with end-of-life issues. In any family, disagreement and strained relationships complicate end-of-life. The strain of illness and death can bring to the surface suppressed beliefs, feelings, and emotions. Families that have gotten along for decades, when faced with an end-of-life illness or death, may feel compelled to argue religious and societal views to urge an LGBT elder to change before death.
The last caution is that an LGBT individual can be “out” with one person and in the closet with the next person. Sexual orientation is generally invisible, and LGBT adults spend a lifetime deciding what to disclose to whom. When working with LGBT adults at the end-of-life, it is important to honor and respect the choices that they have made. Accidental disclosure can strain relationships and cause frustration and confusion at a time when the support of family and friends can be most important. Knowing what to say to whom is especially complicated if the LGBT elder near the end-of-life is unable to communicate their wishes regarding disclosure. If unsure of the level of disclosure, the best course of action can be to listen carefully for clues—while maintaining confidentiality.
End-of-Life Health Care Decision-Making
In an ideal world, every person would remain fully aware and able to make and communicate health care decisions until their last heartbeat and breath. In reality, most people experience at least a short period before death when they are unable to make or communicate decisions regarding the kind and extent of health care that they want or do not want to receive. Every adult has a fundamental right to make health care decisions. Only when a person lacks the ability to make or communicate health care decisions does this right shift to someone else. Even when the transfer of health care decision-making is triggered, it is important that the individual be included in the decision-making process and that the known wishes of the patient be honored. Even if unable to make a decision, the individual may be able to express preferences or fears that can guide the decision-making process. The ultimate goal is for the decision that is made and to reflect the wishes, beliefs, goals, and values of the individual.
Default Decision Makers
Virtually, all states by statute or common law allow someone to make health care decisions for a person who is unable to do so (American Bar Association Commission on Law and Aging 2014). All of the default health care decision-making rules turn first to marital and biological family members. The most common provisions first ask the patient’s spouse to make health care decisions. If there is no spouse, the person’s adult children are generally second in line to make health care decisions (and the laws vary in how they treat disagreement among them.) If there are no adult children, the rules look to the person’s parents. This process continues moving out through the family tree. Domestic partners are included on the statutory lists in five states, and best friends are included in 23 states—but only are called on to make health care decisions when there is no spouse or biological family higher up in the statutory list (ABA Commission on Law and Aging 2014). Default surrogate consent statutes). For an LGBT elder, a “close friend” or chosen family may be his or her preferred health care decision maker. The growth of same-sex marriage will change this picture, with more and more same-sex couples becoming spouses recognized by the law.
The spousal preference disproportionally impacts LGBT elders. Same-sex couples are less likely to be married than opposite-sex couples. Until recently, few states allowed same-sex couples to marry. This is a rapidly changing area of the law. Time will tell if same-sex couples marry at the same rate as opposite-sex couples. Unmarried opposite-sex couples face the same issue as unmarried same-sex couples on this issue—with the major difference being that opposite-sex couples can marry in every state, and same-sex couples can only marry in some states. For same-sex couples who are married, the marital preferences apply.
The health care decision maker presumptions can be overcome by the naming of a health care surrogate . This is the same for all adults and requires specific legal steps.
Advance Care Planning
Advance care planning includes naming a health care surrogate and communicating health care goals, values, and beliefs to the health care surrogate and health care providers to guide decision-making when the elder is not able to make or communicate decisions. The process focuses on the needs, goals, preferences, cultural traditions, family situation, values, and the needs and preferences of surrounding family (Levine Feinberg 2013, May 1).
Successful planning involves a spectrum of people, including the patient, health care providers, marital, biological, and chosen family and the health care surrogate . Including the surrogate early in the process will help the surrogate gain insight into the choices and preferences of the person for whom they may someday need to make decisions (Tilly et al. 2007).
Related posts:
African-American and Black LGBT Elders
The Intersection of Identities of LGBT Elders: Race, Age, Sexuality, and Care Network
Understanding Transgender Elders
Impact of Healthcare Reform on LGBT Elders
Disabilities and Chronic Illness Among LGBT Elders: Responses of Medicine, Public Health, Rehabilitation, and Social Work
LGBT Elders in Nursing Homes, Long-Term Care Facilities, and Residential Communities
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
