The end of life is different for everyone but one thing for sure is that none of us is making it out alive. The focus for end of life should be on the comfort and wishes of the individual who is dying.
Hospice care still has a stigma of the “Grim Reaper” coming in, even though in some cases the services provided actually help people get better. Hospice is an unlimited benefit through Medicare that will become active when an individual’s life expectancy is less than six months. The diagnoses can vary from cancer and dementia to ALS and HIV/AIDS with a myriad of symptoms needing management. Many people who would benefit from hospice never utilize these services, either because they do not want hospice, don’t know about hospice or think that hospice may not understand them.
There are many components of end-of-life care that are unique to the LGBTQ community. People are vulnerable at the end of their lives and expressing who they really are can be difficult without the support and understanding of those who are providing care to them.
If an LGBTQ person is receiving assistance from a nurse or CNA (certified nursing aide) and it is obvious that this provider does not understand the LGBTQ community, will the LGBTQ person be able to open up to them and allow them in at such a difficult time of life? Will the LGBTQ person receiving care feel the need to hide photos and lie about their life? Will they refuse the care completely and not have the benefit of hospice services at all?
One of the issues within the LGBTQ community is who is considered family. Many LGBTQ people have not had children and may have strained relationships with their biological families. In many cases, their close friends may have become their family. In other cases, individuals may live alone and that can be quite a concern for them.
Fortunately, hospice providers are working to better serve LGBTQ communities and to take these unique factors into account when planning services for an individual. Holisticare Hospice is focused on providing care within the home and supporting individuals up to seven days a week. This can include a CNA in the home up to two hours a day and a nurse two or more days a week for up to two hours each visit. Also offered are massage therapists, Reiki therapists, social workers, chaplains, music and pet therapy and volunteers. For those who live alone, the many check-ins throughout each month help ease some of the concern those we serve may have.
We as hospice providers must become interested in the lives of those we serve and learn about them in a meaningful way. If LGBTQ people are feeling the need to remove personal photos or to conceal parts of their identities, we are not assisting them in the best way possible.
Therefore, continued training and education is key for providers to deliver services that allow individuals to be themselves and to be understood. We are all the same when everybody’s breathing.
The most important thing for service providers, not only in hospice, is to be culturally competent to the LGBTQ community. A certified training program through SAGE (Service and Advocacy for GLBT Elders) provides both online and in-person trainings for companies of all sizes. The goal is to enhance the person-centered services that a company already provides by educating them around the unique needs of LGBTQ elders. Having the SAGE credentials and certified symbol alongside your company logo shows that you are inclusive and welcoming to the LGBTQ community.
Not every company is able to afford formal training. However, there are other groups, such as the Safe Zone Project, that provide a free two-hour training that can be administered by a designated trainer within a company.
Holisticare Hospice understands the importance of this cultural competence and is currently receiving formal training from SAGE to become a certified culturally competent provider to the LGBTQ community. Hospice is a service that should be inclusive and understanding of every person we serve regardless of race, religion, ethnicity, gender identity or sexuality. The last thing that we as humans should do is make someone return to the closet in fear of discrimination at end of life.
Guy Wiegand is a hospice-service liaison for Holisticare Hospice and a volunteer with the LGBT Elder Initiative. To learn more about Holisticare Hospice, visit www.HolisticareHospice.org or call 610-995-0100. To learn more about the LGBT Elder Initiative, visit www.lgbtelderinitiative.org or call 215-720-9415.