Discrimination in End of Life Care Part 1: The LGBTQ Experience
This month I will write the first of a two-part article on discrimination in end of life care. This first part will focus on the LGBTQ experience; next month I will write about discrimination experienced by people of color.
Discrimination is an insidious problem in health care in general. But it is particularly devastating when it comes at the end of life. According to a 2016 study done in the United Kingdom by the terminal illness charity, Marie Curie, 74% of lesbian, gay, bisexual and trans individuals were not confident that organizations caring for them at end of life would be sensitive to their needs. This has led many LGBTQ people to delay receiving care, resulting in more unmanaged symptoms and emotional pain. The report, titled Hiding who I am: Exposing the reality of end of life care for LGBT people, includes examples of both direct and indirect discrimination. Many of those interviewed said they felt anxious about hiding their true identity. Others talked about having to “out” themselves over and over again.
The Head of Policy and Public Affairs for England at Marie Curie, had this to say: “No one should have to hide who they are at the end of their lives. If LGBT people are not confident about services, or have experienced discrimination from healthcare providers in the past, they may not feel able to be open about themselves and the people who are important to them – factors that are all crucial to dying well.”
The situation in the United States is very similar to what Marie Curie reported in the UK. While there have been great advances in equal rights in the U.S., many older LGBTQ people still carry deep wounds of discrimination that come out of a long history of homophobia in this country.
As with other forms of trauma, the emotional wounds of discrimination can surface at the end of life, making unconscious bias in health care workers that much more painful. This can be complicated by the fact that many older LGBTQ people don’t have children to care for them and may be estranged from family who can’t accept who they are. In these cases, unfinished business in relationships can hang very heavily over the last days of life, leading to an emotional agony they feel can’t be openly expressed or dealt with. For transgender individuals, it can be even more complicated, because they may fear that their wishes to die as their preferred gender won’t be honored.
In a forward to the Marie Curie report, Sandi Toksvig, a broadcaster said: “Prejudice and discrimination at the end of life have a devastating impact on LBGT people. At its very worst, it means someone will spend their last days feeling isolated, alone, angry and unwelcome. For those who lose a loved one, not being able to say goodbye in a respectful and peaceful environment can make grief and bereavement that much harder to bear.”
As doulas, we need to be sensitive to the need for understanding and safety in the LGBTQ population when they approach the end of life. This begins by not assuming you know a patient’s sexuality or gender identity. You might start by asking who the most important people are in their life, and if they have a significant other. If the answers don’t give you information about their sexual orientation or gender identity, don’t be afraid to ask, explaining that you are comfortable with their identity and want to make sure you provide the best care to them and the best support to their partner. Be willing to learn from your patient and those around them how best to serve them. This is no different from how doulas traditionally approach care of the dying, but it requires greater sensitivity when the fear of discrimination and judgement has been absorbed over a lifetime by an LGBTQ person.
Exploring meaning and a person’s legacy can be particularly important when working with an LGBTQ individual. The story of their life and the lessons they have learned may revolve around their sexuality and gender identity in ways that are very rich and meaningful for those individuals close to them. Many LGBTQ people have spent considerable time in their life fighting for equal rights and acceptance both personally and publicly. That story, the resilience that has allowed them to persevere, and the success they may have achieved in standing up for who they are, sometimes in the face of physical danger or actual violence, is important for us to hear and preserve. Exploring meaning can help a dying LGBTQ person recognize how important their life has been and come to a sense of completion that can help them die more peacefully.
According to a 2016 Gallup survey, 4.1% of U.S. adults identify themselves as LGBTQ. That is about 10 million people. And, 2.4% of those 10 million people are Baby Boomers, with another 1.4% being from the previous generation, born between 1913 and 1945. Obviously, that means that more and more LGBTQ individuals will face dealing with a terminal illness and end of life over the next couple of decades. Doulas will need to educate themselves about LGBTQ issues and concerns. They will also need to remain alert to signs of discrimination in health care workers they may work alongside of when caring for an LGBTQ person. If you witness even subtle and unconscious discrimination, it is part of your role to advocate for better treatment by the offending people and to educate them on the impact of that discrimination
Unfortunately, there have been very few studies done on caring for the LGBTQ population at end of life. For its part, INELDA is dedicated to increasing not only access to care for LGBTQ individuals, but to making sure that the doulas we train and the programs we create are sensitive to the needs of this population. We also hope to promote more research into end of life care for LGBTQ people.
One of our corporate values is that we will do pro bono work in underserved populations. We have trained inmates in prison to care for each other as doulas. We will shortly do the same in a veteran’s community in Louisville, KY (which we will write about in an upcoming newsletter article), and we look forward to doing the same in selected LGBTQ communities as well.
The September issue of INELDA’s newsletter will focus on discrimination in end of life care for people of color.