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