AMA CXO Todd Unger discusses caring for LGBTQ seniors and addressing disparities during end-of-life care with Carey Candrian, PhD, an associate professor at the University of Colorado School of Medicine in Denver.
0:00 AMA Moving Medicine for June 21, 2022 1:04 What disparities affect LGBTQ older adults, specifically? 2:04 What is driving these disparities in LGBTQ older adults? 4:06 How have previous stigmas taken a toll on LGBTQ seniors mental health? 5:35 Why are LGBT older adults at particular risk for receiving inequitable end-of-life care? 8:17 How is end-of-life care different from other areas of health care where we don’t see these huge gaps? 8:43 What are the drivers of this discrimination? 9:53 What kind of data would be helpful—and how can it best be collected by care providers? 11:46 What do you mean by “breaking the script” when it comes to communication with LGBTQ older adults? 13:30 How would you like to see end-of-life care evolve and what do we need to do to get there?
When Desiree Celeste begins to feel emotional while discussing the death of their grandmother, they refuse to apologize — instead, they make space to explore and feel the depths of their grief.
“I’m not sorry, actually. I will be mourning her for the rest of my life,” said Celeste, who uses they/them pronouns.
Celeste said that their grandma “always was and always will be” their best friend. When she died after a three year stay in hospice, the emotional care Celeste and their family received was lacking.
“Her death almost killed me, that’s how deep my grief was,” they said. “Don’t get me wrong, the hospice workers were amazing, they did a great job. But I was still left feeling like I needed more. I needed someone outside of that group that could hold space for me and my grief.”
Now, years later, Celeste has built themself into the companion they sorely needed in those dark moments.
Celeste works as a death companion. Also known as a death doula or a death midwife, death companions dedicate themselves to supporting people as they experience grief and death. They can help make funeral arrangements, answer questions about death and dying, organize euthanasia for pets, help process grief years after an event and much more.
Although Celeste officially started their work in 2021, they said they’ve been doing some forms of death companionship for most of their life.
“At pet stores I used to take home animals that smelled like death … that I knew would die. I took them home so I could care for them and make sure they didn’t die alone,” they said.
But everything truly came to a head when Celeste lost their grandmother. On top of the grief of losing their best friend, they never had a chance to come out to her as nonbinary, which added a unique and terrible pain to Celeste’s experience.
“I never came out to my grandma, she never knew who I really was,” they said.
Influenced by that pain, Celeste is a death companion focused on providing services to other LGBTQ+ individuals, for whom death and grief can be exceptionally difficult.
“I worked with a client once to help them organize an at-home euthanasia for their pet. They identified as transgender, and were terrified of reaching out to veterinarians because of their fear of being mis-gendered,” Celeste said. “Talking to the vet, picking up the ashes and even getting the body cremated are all opportunities where they could have been mis-gendered, so I acted as a barrier and shielded them from that pain.”
In another instance, Celeste worked with another transgender client who was the primary caregiver for an individual who had died. Living in a conservative and rural area, it was unsafe for the client to come out, and so they would be facing funeral directors, doctors and other professionals as someone they weren’t.
“When someone is experiencing grief, they’re already so fragile. It’s not fair to have to hide who you are while going through that, so I was there to offer emotional support and be someone who knew what was really going on,” they said. “It’s really important to have someone to explore those feelings with without hiding anything.”
One of the most important aspects of their work is the unique variety of care Celeste offers as a death companion.
“The important thing to remember is that it’s not either/or — you can work with hospice and social workers and still need the support of a death companion,” they said. “When people are experiencing the anxiety that comes with death, they need to feel safe. I’m here to offer a vast and flexible variety of services to help with that.”
Starting in February, Celeste began to offer virtual processing spaces for those who identify as queer. The goal of those spaces, they said, is to offer space and time to talk about death and grief in all its forms.
“When I started my work, I wasn’t focusing on queer clients, but over time I think my clients began to see a piece of themselves in me, and they just started to gravitate towards me.” they said. “A death companion’s care is truly unique, I strive to meet people wherever they’re at.”
The LGBTQ+ community has been among the groups historically underserved by hospice, with mistrust of the health care system at large and provider bias as leading roadblocks to quality end-of-life care. Hospice providers are increasingly working to better understand the LGBTQ+ population and improve access to care.
Issues of equity, inclusion and diversity have plagued the nation’s health care system. Providers of all walks are reaching deeper into the roots of disparities to understand barriers and expand care among underserved African American, Hispanic, Jewish and LGBTQ+ communities. While widespread data is scarce, available research indicates that the LGBTQ+ population is among those groups under-utilizing hospice care. According to a 2018 AARP study, 60% of the LGBTQ+ community are concerned about a lack of sensitivity to their needs among health care providers.
“When LGBTQ+ seniors need to access long-term care, most of them do not don’t feel safe and our health system in many places doesn’t make them feel safe,” said Ruth Thompson, national hospice medical director at Elara Caring during a session at the National Hospice and Palliative Care Organization (NHPCO) Interdisciplinary Conference. “We may have no idea that we’re taking care of people who are gay, lesbian, transgender and bisexual, but we are. It’s not unusual that they are not going to share with you that part of their personal history, which is really unfortunate because it’s who they are. The history of discrimination and poor education of the health care system really has had a profound effect on these people and compounded their fears. This population of people tend to have worse health outcomes as compared to their heterosexual and cisgender peers.”
With barriers such as patients’ fear of discrimination and general mistrust, hospice providers will need to build up awareness and break down biases around gender identity and sexual orientation to foster greater trust among underserved LGBTQ+ communities. A general lack of understanding and awareness among providers, along with stigmas, stereotypes and biases have been drivers of under utilization.
“No one is asking for special care or special treatment,” said Michael Kammer, medical social worker and bereavement counseling professional at Ohio’s Hospice of Dayton, during the conference session. “We just want care that takes into consideration the unique needs, concerns and experiences that we have had just like we do for any other minority population. We’re working on developing the awareness and ability to identify and join with people in the LGBTQ community. We need to shift our thinking about this from seeing the LGBTQ population as a special population to more inclusive care. Everyone needs the same specialized care, and it requires self-awareness on our part to shift how we perceive these groups and become aware of our own implicit biases, and being able to better interact with and support all our patients.”
Expanding education and awareness among hospice staff regarding the challenges, concerns and needs could extend reach for LGBTQ+ community members. Older LGBTQ adults often face issues such as economic insecurity, reduced caregiving support networks and misconceptions around sexual orientation and gender identity.
Hospice providers can improve access and experience of care by shifting organizational cultures and patient care practices, with executives leading the charge on deeper integration of LGBTQ+ education.
“In order to be successful and transform your organization’s culture, you must really start from the top,” said Kammer. “There needs to be buy-in at that executive leadership level. This requires a lifelong commitment, self-critique and self-evaluation and being culturally humble so that we can become aware of our implicit biases and mitigate those to provide truly person-centered care. This is not a one-and-done activity.”
Addressing gender identity and sexual orientation during the patient admission processes is one strategy toward greater LGBTQ+ inclusion in the hospice space. Providers will need to look beyond the scope of information on electronic health records to better understand how aspects such as gender identities and personal pronoun preferences can impact the experience and quality of care for LGBTQ+ patients.
Despite increasing advocacy, the field has much room to grow when it comes to improving cultural understanding and learning the specific social determinants of health for LGBTQ+ communities.
“People are struggling with LGBTQ+ issues that are impacting their psychosocial and spiritual situations, and it’s really critical that those patient discussions remain respectful,” said Thompson. “You can identify champions and have a team willing to stand up and make sure that people are having respectful conversations around care goals. When people are reaching the end of life, it’s important that they can be who they are and be with who they love. Those can really be challenges for the senior population because our LGBTQ+ elders are really the group of people who experienced a lot of that historical discrimination before the Gay Rights Movement many years ago. We’ve come a long way since then, but we still have a long way to go.”
Palliative, or end of life care can help people with terminal conditions, such as cancer, live as well as possible for as long as possible – and allow them to die with dignity. But end of life care is not a straightforward process. And for patients from the LGBT community, the process presents a whole host of barriers that they and their families may face.
Not only do many people from the LGBT community face difficulties accessing high-quality end-of-life care, they also may face issues with their care. This may sometimes be because of ignorance and prejudice against them during pre-hospital admission. It may also be due to poor communication between patients and care providers about treatment plans, judgement by staff about a patient’s family or relationships, and a failure to properly support the spiritual needs of the patient.
Many have also experienced victimisation, discrimination and personal hardship as a result of their sexual identity throughout their life, and may feel that telling a healthcare professional about their sexual identity would change their interactions or quality of treatment.
Staff may also be unaware of an LGBT patient’s particular needs or how to meet them. For example, patients who have undergone gender reassignment may have been married previously in their former gender. They might have children and grandchildren. Dealing with current partners, spouses, former spouses and children during end of life care takes particular skills, which requires specialist training. As many in palliative care want to be surrounded by loved ones, healthcare workers need to be trained to deal with these types of situations.
Many LGBT people may also hide their relationships, meaning that healthcare workers may exclude key individuals from their loved one’s end of life care. Other factors that can impact end of life care include whether an LGBT person lives alone, if they’re socially isolated, and if they face barriers to services or lack consultation. Ageism, and past negative experiences relating to their sexual orientation or gender identity, might also impact the care they receive.
Bereaved LGBT partners and spouses have also been found to experience less support during the death of their loved one. They complained of being shut out of the care process and ignored.
Healthcare professionals also aren’t typically trained to address the specific needs of the LGBT community when it comes to end-of-life care. These needs will include the need for confidentiality and communication from healthcare providers that is sensitive to their sexuality and preferences. Many LGBT people may also feel too vulnerable to disclose their sexual identity while receiving this type of care, which may make their final months lonely.
Room for improvement
Research shows that LGBT people already have lower health outcomes, partly because of ignorance of LGBT issues among healthcare practitioners. For example, they may not receive routine cancer screenings, and may not be able to access adequate healthcare services.
But many of the shortfalls faced by the LGBT community during palliative care are prohibited and protected by the Human Rights Act 1998. Article three states that no one shall be subject to torture or to inhuman or degrading treatment or punishment, while article eight protects a person’s right to privacy, respect for their sexual identity and the right to control information about their private life.
The issues addressed in articles three and eight have been interpreted by the courts as including how a person plans their end of life care. This means there could potentially be legal redress for any person who feels that their wishes and feelings relating to end of life care aren’t being taken into account by the healthcare workers looking after them.
There are two particular aspects of good end of life care that many LGBT people find are most important to them. First, they want their care to focus on their individual needs. Second, they want their partner to be accepted.
Currently, there are recommendations in place for caring for those from the LGBT community in palliative care. In order to ensure that LGBT people receive the best end of life care going forward, it will be important for healthcare workers to have better training.
Better training will ensure they can communicate properly with LGBT people about their needs and understand their situation. Training will need to include understanding equality, diversity and confidentiality, as well as understanding the unique issues LGBT people face and how this impacts end of life care. Staff or other residents should also report any discrimination to prevent it from continuing in the future.