by Megan Perkins
(Previously published by Harness Magazine at http://www.harnessmagazine.com)
Disclaimer – this case is based on true events, but details have been changed to keep the anonymity and protect privacy.
Chris and Andrew have been together for over 10 years. Chris is very charismatic and the person you call when you need a smile put on your face. Andrew is an old soul. They have a love story most dream of – one built on communication, love, and respect.
For the past 8 years, Chris has been on HAART therapy after testing HIV positive. He is currently being admitted to the hospice IPU after declining quickly with tuberculosis infection. Since Chris and Andrew are not legally married, the next of kin has been called in which is Chris’s parents. Due to religious reasons, Chris’s parents have been estranged from their son for years. They know nothing about his relationship with Andrew or the life they have built.
Given their history, Chris and Andrew anticipate tension and issues with Chris’s parents. Upon arrival, Chris’s parents will not allow Andrew into the hospital to visit Chris nor do they plan to let him back into the apartment that they shared. Andrew quickly packed some belongings and mementos from his life with Chris and moved across the country to be with friends.
Chris and Andrew talked nightly on a cell phone that was purchased in secret, one that Chris’s parents were not aware of. One night, Chris didn’t pick up the phone. That was how Andrew knew that his partner, his love had passed away.
This is what we want to prevent. We want to prevent a patient from not being able to be their authentic self during their final days. We want to prevent a patient’s loved ones, partner, and chosen family from being excluded from their funeral, from not being able to say goodbye. We want to prevent a partner from losing their home and belongings when their lover passes away. We want to prevent a transgender patient from being buried under the wrong name and pronoun by an estranged next of kin. And we want to prevent a partner from finding out their lover passed away due to an unanswered phone call.
Anyone can be an ally to the LGBTQ+ community at end of life. There are a variety of action items that can be taken, even if you are not in the healthcare field. Remember, activism is a multi-lane highway. Find the lane you are most comfortable in, or where your skills lie and drive.
Education is the first step, and it includes educating healthcare professionals, patients, and the general public. We need to educate the healthcare field on the health disparities associated with the LGBTQ+ community. We need to educate why inclusive training is needed and how to provide it. Hospices needed to be educated on LGBTQ+ health disparities, inclusive training, and the end of life obstacles unique to the LGBTQ+ patient. There also needs to be comprehensive LGBTQ+ training included in the curriculum of all healthcare professionals.
- In a 2012 of US medical schools, 16% had comprehensive LGBTQ training and 52% had no training at all.
- A 2017 Association of American Medical Colleges report found that most schools surveyed include some LGBTQ coursework (usually electives).
- A study done in 2018 of medical students at 10 different schools found that 80% felt ‘not competent’ or ‘somewhat not competent’ when it came to treating gender and sexual minority patients.
Individuals who identify as LGBTQ+ should also be educated on their own health disparities so that they can be an advocate for themselves when getting care from a healthcare professional. We also need to make LGBTQ+ individuals aware of the precautions they need to take when approaching the end of life care, as well as the resources that are available to them.
Educating the general public about these LGBTQ+ equality issues helps to amplify the voice of needed change. Friends, family members, coworkers, and more can email their elected officials on legislation that is needed.
Training on providing inclusive care can be done on both an individual and an institution basis. Often, local CE programs may provide a brief introduction to inclusive care. Organizations can seek out certifications to market that they are committed to providing inclusive care to the LGBTQ+ community. Inclusive care training should include processes (intake forms), providing a welcoming environment, marketing, discrimination statement advice, and providing equal benefits to LGBTQ+ employees. The Healthcare Equality Index (Human Rights Campaign) and SAGECare Credential (SAGE) are two examples of certifications/training available to institutions. The University of Louisville trains individual healthcare professionals on how to provide inclusive care through their LGBTQ+ Affirming Healthcare Series.
One of the easiest action items one can take to be an ally to the LGBTQ+ community is to email their elected officials about necessary legislation.
The Movement Advancement Project is one resource that makes it easy to look up how a state performs in regards to LGBTQ+ equality. Individuals can utilize this information to email their elected officials on areas where their state is lacking. Resources are available on the national level (Human Rights Campaign, ACLU) and local level (Equality Ohio) that also provide information on current legislation impacting the LGBTQ+ community.
In 2016, Washington D.C passed the LGBTQ Cultural Competency Continuing Education Amendment act requiring all members of the 48 licensed, registered or certified healthcare professionals in the Washington D.C area to complete 2 hours of CE during each renewal period. This is another policy idea that individual healthcare providers can email their respective boards to implement.
End of Life Planning
Discussing end of life planning is a hard and emotional conversation, but a necessary one. Since the LGBTQ+ community lacks the protections of a heterosexual patient, it is paramount to have items such as advanced directives and a will in place. In order for a hospice to help an LGBTQ+ patient achieve a good death (one of the main goals of hospice), they need to be aware of the health disparities unique to that community, the specific hospice obstacles in front of a LGBTQ+ patient and provide inclusive care. Having advanced directives in place will help to prevent a patient from losing their home when their lover passes; a transgender patient will not have to worry about being buried under the wrong name/pronoun and a LGBTQ+ patient can live out their final days as their authentic self, surrounded by their chosen family.
- Acquaviva, KD. LGBTQ-Inclusive Hospice and Palliative Care: A Practical Guide to Transforming Professional Practice. New York, NY: Harrington Park Press; 2017.
- Dennis, J. We Made This Family: End-of-Life Care in the LGBT Community. 2014. Accessed January 6, 2014. https://www.huffpost.com/entry/death-and-dying_b_4508724
- Hollenbach, A. D., Eckstrand, K. L., & Dreger, A. (2014). Implementing curricular and institutional climate changes to improve health care for individuals who are LGBT, gender nonconforming, or born with DSD: A resource for medical educators. Washington, DC: Association of American Medical Colleges. Accessed April 11, 2020. https://www.aamc.org/download/414172/data/lgbt.pdf
- Human Rights Campaign Foundation. 2019. Healthcare Equality Index 2019: Promoting Equitable and Inclusive Care for Lesbian, Gay, Bisexual, Transgender and Queer Patients and Their Families. Accessed April 4, 2020. https://www.hrc.org/hei
- Maxwell E, Salch S, Boliko M, et al. Discrepancies in Lesbian, Gay, Bisexual, and Transgender Patient Care and How Pharmacists Can Support an Evolved Practice. American Journal of Pharmaceutical Education. 2017;81(7):6181.
- Movement Advancement Project. February 2020. Mapping LGBTQ Equality: 2010 to 2020. Accessed April 11, 2020. www.lgbtmap.org/2020-tally-report.org
- Services and Advocacy for GLBT Elders. 2014. Out and Visible: The experiences and attitudes of lesbian, gay, bisexual and transgender older adults, ages 45-75. Accessed April 4, 2020. https://www.sageusa.org/resource-posts/out-visible-the-experiences-and-attitudes-of-lesbian-gay-bisexual-and-transgender-older-adults-ages-45-75-by-the-numbers-full-report/
- Traynor K. Pharmacists, Technicians Will Soon Need LGBTQ Education to Practice in D.C. 2017. Accessed April 11, 2020. https://www.ashp.org/news/2017/12/13/pharmacists-technicians-will-soon-need-lgbtq-education-to-practice-in-dc