Researchers at the University of Washington are working to understand the current experiences of lesbian, gay, bi-sexual and transgender (LGBT) couples when one partner is seriously ill. They are hoping their results will inform public policies, ensuring that LGBT couples have access to their partners and can participate in critical decision-making. Ruth Engelberg, UW research associate professor of medicine and co-director of the End-of-Life Care Research Program, is the principal investigator of a study funded by the National Palliative Care Research Center. LGBT people across the country will be surveyed about their experiences when a partner is hospitalized. The goal of the study is to learn more about people’s experiences when making care decisions for their partner.
“Anecdotally, we are hearing that hospitals and care facilities are not always recognizing the rights of LGBT couples when they are trying to identify legal next of kin,” said Engelberg. “This failure to recognize LGBT partners as appropriate decision makers adds another element of stress, in an already stressful situation, when that partner is either denied access or questioned inappropriately.”
Engelberg is seeking to recruit 100 LGBT people across the country who have had the experience of advocating for a partner who was ill or injured over the past five years and received care in a hospital or other healthcare facility. To determine eligibility, people are asked to contact the study to answer several questions. The study hopes to capture both good and bad experiences.
Engelberg says she is especially interested in hearing from LGBT people who identify with groups that may be underrepresented in research, such as people of color and older people.
“There are many LGBT couples who have been in same-sex relationships for years and years,” she said. “Then one of them falls seriously ill and the partner feels that she/he must stand back in the shadows because she/he isn’t ‘legally’ the next of kin — even though they have been in a loving relationship for years.”