Addressing Five Major Barriers to Hospice Utilization in the LGBTQ+ Community

Categories: Community Engagement.

In the 1970s and 1980s, members of the LGBTQ+ community fought for their rights and helped build a society in which they could be “out and proud” to an extent many could never have imagined. Unfortunately, medical care remains a major area of concern, particularly when it comes to older Americans. Understanding and addressing common barriers to hospice utilization in LGBTQ+ communities requires both empathy and action.

Limited Family Support

Members of the LGBTQ+ community face higher rates of family estrangement, are more likely to be childless and are at greater risk of social isolation as they age. While some individuals have strong social networks of “chosen family” these are often peers who are also aging and thus limited in their ability to help. This may require greater efforts on the part of hospice staff to coordinate care. Confirming up-to-date advance directives is especially important. Strong partnerships with local LGBTQ+ organizations can help hospices ensure patients have access to complementary services and support when family networks are limited.

HIV Status

One significant barrier to hospice enrollment among HIV-positive patients is uncertainty around hospice coverage of antiretroviral drugs. These medications are expensive and determinations of financial responsibility can differ based on the relationship between a patient’s terminal diagnosis and HIV status. The side effects, pill burden and likelihood of viral rebound occurring prior to death create difficult decisions for hospice for clinicians. Hospices can help by establishing a consistent philosophy around standard operating procedures and sharing it with prospective patients and referral partners.

Complex Medical Needs

Some LGBTQ+ populations face higher risk of complex medical conditions. This can lead to greater need for hospice services but may also complicate decisions around hospice election. HIV status is one major factor. Even patients with well-managed HIV face a greater and earlier incidence of aging-related diseases, particularly cardiovascular and neurocognitive conditions. Surgical and hormonal interventions common among transgender populations may also present special challenges to clinicians. Additionally, discrimination and social isolation contribute to greater mental health needs across the LGBTQ+ spectrum. Hospices that consistently demonstrate competence in care for medically complex patients and those with mental health needs are intrinsically more likely to meet the needs of the LGBTQ+ community.

Distrust in Healthcare System

One in five LGBTQ+ individuals reports avoiding healthcare due to negative experiences with providers. Many are particularly wary of residential long-term care settings for fear of being forced “back in the closet” due to implicit or explicit discrimination. This is especially troubling for transgender and nonbinary patients for whom a loss of authentic gender expression and recognition can be emotionally devastating. Hospices seeking to reach and serve these patients must be proactive in outreach and committed to providing culturally competent care at every level.

Unsupported Grief and Bereavement

It’s not just patients who face special challenges in end-of-life care associated with their LGBTQ+ identities. Their caregivers and loved ones do too. It’s common for a same-sex partner’s relationship to a patient to be questioned or minimized, even when they are legally married. LGBTQ+ patients are also more likely to receive care and support from close friends rather than family members, yet these arrangements are often not acknowledged by healthcare providers. Both patients and caregivers may also have varying levels of comfort discussing their sexuality or the nature of their relationship in different contexts. They may present differently to various family members, at work or within their faith community. Meeting the emotional needs of caregivers throughout the course of hospice care requires hospice staff to ask the right questions and respond accordingly.

Further Reading

Many of the best practices around service to the LGBTQ+ community also apply to other underserved populations. In fact, many involve a shift to more person-centric care mindset that can benefit all patients and caregivers. Here are a few additional resources to continue the conversation at your organization:

  • SAGE, a national advocacy group for LGBTQ+ elders, offers a variety of training and certification programs for healthcare providers through its SAGECare program and maintains a database for consumers seeing culturally competent care.
  • Enclara Pharmacia’s whitepaper, Equity in Palliative Care and Hospice, explores opportunities to improve outreach and service to underserved populations.
  • NHPCO’s Hospice and Palliative Care Resource Guide for LGBTQ+ Communities covers topics including LGBTQ+ healthcare disparities, ways to better serve LGBTQ patients and community outreach strategies.

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