Everyone deserves Dignity and Comfort at the end of life! It’s been said that “death is a great equalizer,” and most people want to face the end of life with loving support and dignity. This includes members of the LGBTQ+ community, who are often more hesitant than the general population to seek out hospice services. 

To overcome any potential roadblocks to care, the solution includes: 1) Educating hospice providers and caregivers of the unique needs of LGBTQ+ families and 2) Educating families about hospice and assurances of non-discriminatory, compassionate care.

For Pride Month in June, for example, the Heart to Heart Hospice organization worked to partner with and recognize members of the LGBTQ+ community. Our efforts included the Heart to Heart Hospice Foundation sponsoring the Dallas Pride Festival. Thank you to our Heart to Heart Hospice teams in Texas, Indiana, and Michigan for joining with surrounding communities to better serve LGBTQ+ families. 

But even beyond the month of June, Heart to Heart Hospice works to acknowledge, recognize, and provide quality care for LGBTQ+ families –  care they deserve year round. From legal documentation and well-informed healthcare practitioners to family concerns and mental health issues, Heart to Heart Hospice utilizes a hospice team approach that provides patient care for body, mind, and spirit – including support for LGBTQ+ patients and their loved ones. 

LGBTQ+ Informed Hospice Providers

Each family has its own dynamic, and special considerations may be required for LGBTQ+ individuals and their loved ones. Hospice providers need to understand the following concerns as they meet with patients and caregivers and create hospice care plans for the final months of life.

Marie Curie, a palliative care research organization in the UK, identifies key problems LGBTQ+ people face in the study, Hiding who I am – the reality of end-of-life care for LGBT people (as reported in NHPCO LGBTQ+ Resource Guide):

  1. “Anticipating discrimination” – Because LGBTQ+ people anticipate that they will face discrimination, they access palliative care later or avoid it entirely. Sixty percent of older gay people believe that care services will not be able to meet their needs.
  2. “Complexities of religion and LGBT end-of-life care” – End-of-life and palliative care providers may not meet the spiritual needs of LGBTQ+ families to the same extent they address these issues for other families.
  3. “Assumptions about identity and family structure” – Some clinicians may discriminate against LGBTQ+ people in end-of-life care and make assumptions about patients’ identity and family structure.
  4. “Varied support networks” – Kinship networks are varied, and LGBTQ+ patients may more often rely on chosen family than biological family at the end of life. Furthermore, they may fear that partners may not be respected as next of kin.
  5. “Unsupported grief and bereavement” – While communities are offered many templates of how to support bereaved straight surviving spouses after the death of a partner, LGBTQ+ survivors may feel isolated in their grief.
  6. “Increased pressure on LGBT care[givers]” – Because evidence shows that LGBT people are more likely to receive palliative care support late in the trajectory of an illness, or not receive that aid at all, there is additional burden on LGBTQ+ caregivers, who may not benefit from all the resources available to others when providing care for a loved one.

To allay these concerns, LGBTQ+ families need hospice providers who offer pain and symptom management, dignity, and compassion that never discriminates – from nurses, aides, volunteers, social workers, spiritual care and bereavement coordinators. Well-informed staff respect patient identities, family structures, unique health concerns, social challenges, mental health concerns, and more. Further, qualified hospice staff can help guide the process for medical decision-making and legal documents like advance directives that help put LGBTQ+ families at ease.

LGBTQ+ Education and Support

Beyond educating hospice staff, another vital step is engaging with the LGBTQ+ community about the importance of hospice care. This includes:

  • Collaboration with LGBTQ+ organizations to enhance their knowledge, build community partnerships, and ensure they are providing the best care possible. These collaborations help foster a more supportive environment for LGBTQ+ patients.
  • Education and resources specifically tailored to LGBTQ+ patients and their families. This can include information on legal rights, support groups, counseling services, and assistance in creating advance care directives that address the unique concerns of LGBTQ+ individuals.
  • Comprehensive education campaigns within the community and LGBTQ+ groups on hospice topics like costs and Medicare coverage, levels of care, quality of life on hospice, and more (read some here at 10 Facts About Hospice).
  • Continual improvement and feedback to hospice care organizations from LGBTQ+ patients and their families to identify areas for improvement. Regular assessment and evaluation of their services can help identify any gaps in care and ensure that the needs of LGBTQ+ individuals are being met effectively.

By implementing informed care and collaboration, hospice providers can create a welcoming environment where LGBTQ+ patients and their families feel supported, respected, and empowered during the end-of-life journey. For more, see the comprehensive LGBTQ+ Resource Guide from the National Hospice and Palliative Care Organization.