Special Considerations for LGBTQ End-of-Life Care

Special Considerations for LGBTQ + End-of-Life Care

As a population, LGBTQ + older adults are more likely than their heterosexual peers to have poorer health status and be more hesitant to seek care. 1,2 This has important implications for aging and how aging LGBTQ + adults make decisions about end-of-life (EOL) care. We aim to highlight some key considerations for providers when having EOL discussions with their aging LGBTQ + patients. Additionally, it is important for providers to recognize these aging LGBTQ + considerations are in addition to, rather than instead of, common concerns and considerations of their heterosexual counterparts.

Next of Kin

While the nationwide legalization of same sex marriage in 2015 allows many couples to enjoy the benefits of legal marriage, many same sex couples are still not married. 1,3 Compared to their heterosexual peers, aging LGBTQ + adults are more likely to be single, live alone, and not have children. 1 This phenomenon can lead to isolation as they age or dependence on informal social networks. This becomes particularly important during EOL care planning and legal defaults to next of kin in healthcare decisions. In Minnesota, there is no next of kin law for medical decision-making, so it is crucial for adults to appoint a healthcare agent in their healthcare directive. When planning for EOL care, these social and legal dynamics have an impact on patients’ ability to agein-place as well as EOL decision-making. Whereas heterosexual elderly adults often rely on spouses and children for medical decision-making, aging LGBTQ +

By Beret Fitzgerald, Rachel Oldfather and Kerry Hjelmgren adults often rely on their “family of choice” which is comprised of friends and neighbors. 4 While a person’s chosen family may provide support for things like groceries and errands, many LGBTQ + elderly adults cite difficulty in asking for the Beret Fitzgerald Rachel Oldfather Kerry Hjelmgren level of support they need in aging or in for LGBTQ + people when discussing tranmaking EOL care decisions. 2 Furthermore, sitions to higher levels of care. the reliance on a patient’s chosen family can lead to conflict with biological family Grief in the LGBTQ + Community as well as difficulty in decision-making if Part of providing holistic care to patients there is not legal recognition of a patient’s during EOL planning and palliative care is partner or friends. 4 This makes early and attending to their grief. LGBTQ + patients clear discussions about health care direcand their loved ones may go through betives and proxy decision makers especially reavement in ways that are different than important for aging LGBTQ + people. their heterosexual counterparts. This may Many older adults fear placement in include survivor guilt, disenfranchised a nursing home, however, having a famgrief, and the influence of traumas specific ily caregiver is a key predictor of abilito the LGBTQ + community. ty to age-in-place. 5 Brennan-Ing et al. Disenfranchised grief occurs when a found that nearly two-thirds of elderly person’s “bereavement experience is not LGBTQ + adults lived alone (63%) and acknowledged or perceived as legitimate many LGBTQ + aging adults describe by healthcare providers or others.” 3 This difficulty creating friendships where they experience is made worse when either famcould ask someone to take on the role of ily or healthcare providers do not recognize caregiving making it less likely that they and consider input from significant othhave someone to help them age-in-place. ers during EOL planning. 6 This becomes 2,4 Those that do have a caregiver may enapparent when paired with the idea of counter difficulty in getting financial supchosen families. The community that port for them. While the National Family shows up and supports LGBTQ + people Caregiver Support Act protects caregivduring EOL care and decision-making ers regardless of their relationship to the may not have legal or familial ties to a patient, policies like the Family Medical patient. Having legalized documentation Leave Act, bereavement leave, and Social such as a healthcare directive can help with Security benefits are reserved for those both decision-making and recognition, who are legally related to the patient. 5 It is but providers should keep in mind that important to keep in mind the differences there are additional barriers to this for the in these relationships and financial barriers (Continued on page 26)

Special Considerations for LGBTQ + End-of-Life Care (Continued from page 25)

LGBTQ + community discussed below.

While most LGBTQ + people’s EOL care does not specifically relate to HIV/ AIDS, it is important to acknowledge for many patients. 6 The experience and trauma of living through the peak of the HIV/AIDS crisis has resulted in fear and denial for some aging LGBTQ + people and influences their perceptions of EOL planning.

Provider Sensitivity and Supportive Environments

While many of the concerns surrounding EOL discussions in the LGBTQ + community are not specific to sexual orientation, the role of sexuality in EOL planning should not be overlooked. As providers, we have the opportunity to create a supportive environment that allows patients to feel comfortable and confident in sharing their values during EOL planning, including their sexual orientation. One key practice providers should adopt is minimizing heterosexual assumptions, such as spousal gender, marriage status, and familial support networks, within assessment and care, and thus strengthen open communication. 7 Physical intimacy and sexuality remain important for many people even as they face terminal illnesses or age. Greibling et al. found that many LGBTQ + adults with terminal illnesses still considered sexuality an important aspect of their wellbeing. 3 In the context of palliative care and EOL discussions, supporting patients successfully requires providers to be open and proactive in bringing up such topics. These issues are not unique to the aging LGBTQ + community, but due to frequent discrimination many people choose to withhold information such as sexual orientation and HIV status during care. 3 Another key aspect of supporting aging LGBTQ + adults in EOL care planning is helping them navigate surrogate decision-makers. People are often familiar with healthcare decision-makers and healthcare directives, however, Cartwright et al. found that roughly half of LGBTQ + adults had completed the documents. 6 Reasons for not completing forms, such as feeling like it wasn’t necessary or uncertainty about who to appoint as an agent, were similar to their heterosexual peers. However, factors such as fear of family usurping EOL care decisions and gender or sexual orientation not being recognized after death are of particular concern to LGBTQ + people. 6 A durable power of attorney for health care, a crucial element of a healthcare directive, is a key document to improve the likelihood of non-family significant others making EOL decisions. Providers should be comfortable bringing up the importance of legal documentation and options with patients. 5

Conclusion/Practice Considerations

Elderly LGBTQ + people experience higher rates of discrimination, poorer health and isolation as they age compared to their heterosexual peers. When patients have experienced discrimination from the healthcare system, good intentions are not sufficient. This is increasingly important with the recent decision to roll back discrimination protections for LGBTQ + patients in health care. Providers need to be proactive in their approach to EOL care planning with their LGBTQ + patients. By opening the conversation early and often to the

Documents Assigning Healthcare Agents

Legally binding Non-legally binding

Healthcare directive (IF notarized or signed by two adult witnesses who are not their healthcare agents) Living will IF healthcare agent is specified Unsigned/not-witnessed healthcare directive

Living will without Power of Attorney for Healthcare designation

5 Wishes *The POLST form is a legal medical order but does not allow for assigning a healthcare agent. unique considerations of aging LGBTQ + people we can proactively help them age according to their values. Beret Fitzgerald is a fourth year medical student at the University of Minnesota. After studying Philosophy as an undergraduate at Carleton College, she became interested in the ethics of healthcare decision making and patient autonomy. Rachel Oldfather is a fourth year medical student at the University of Minnesota Medical School. She earned her bachelor’s degree in geography with minors in chemistry and biology at Macalester College in St. Paul, MN. Rachel is interested in both Internal Medicine and combined Med/Peds and is applying to residency programs that will allow for opportunities to train as both a learner and as an educator.

Kerry Gervais Hjelmgren is the Executive Director of Honoring Choices Minnesota, and is working on a Master’s degree in Palliative Care from the University of Maryland. She earned her bachelor’s degree in Philosophy and English from St. Olaf College, and a graduate certificate in Aging and Applied Thanatology from the University of Maryland.

References: 1. Wallace SP, Cochran SD, Durazo EM, Ford CL.

The health of aging lesbian, gay and bisexual adults in California. Policy Brief (UCLA Center for Health Policy Research). 2011 Mar; 1. 2. de Vries B, Gutman G, Humble Á, et al. Endof-Life Preparations Among LGBT Older

Canadian Adults: The Missing Conversations.

Int J Aging Hum Dev. 2019;88(4):358-379. doi:10.1177/0091415019836738. 3. Griebling TL. Sexuality and aging: a focus on lesbian, gay, bisexual, and transgender (LGBT) needs in palliative and end-of-life care. Curr

Opin Support Palliat Care. 2016;10(1):95-101. doi:10.1097/SPC.0000000000000196. 4. Brennan-Ing M, Seidel L, Larson B, Karpiak

SE. Social care networks and older LGBT adults: challenges for the future. J Homosex. 2014;61(1):21-52. doi:10.1080/00918369.2013. 835235. 5. Croghan CF, Moone RP, Olson AM. Friends, family, and caregiving among midlife and older lesbian, gay, bisexual, and transgender adults. J Homosex. 2014;61(1):79-102. doi:10. 1080/00918369.2013.835238. 6. Cartwright C, Hughes M, Lienert T. End-of-life care for gay, lesbian, bisexual and transgender people. Cult Health Sex. 2012;14(5):537-548. doi:10.1080/13691058.2012.673639. 7. Harding R, Epiphaniou E, Chidgey-Clark

J. Needs, experiences, and preferences of sexual minorities for end-of-life care and palliative care: a systematic review. J Palliat Med. 2012;15(5):602-611. doi:10.1089/ jpm.2011.0279.