End-of-Life Care: Making Palliative Care More Inclusive

For many people in the LGBTIQ+ community, interactions with the healthcare system can be difficult. The exhibition "Mots pour maux" (Words for pain), inspired by phrases heard in the medical field, offers a glimpse. “If you want to solve all your problems, you have to stop being trans!” is one of the phrases collected by Sophie Peuble, a primary care nurse at Unisanté, and by Sylvie Métraux, a sociocultural facilitator for the association Voqueer, who worked with LGBTIQ+ young people to create the exhibition. "The idea was not to point the finger at a profession," says Sylvie Métraux, "but rather to highlight the need for awareness-raising on this theme. There are still gynaecologists today who tell lesbian women that they do not need to get a cervical screening test, which is completely false.” 

When it comes to palliative care, a speciality focused on relieving suffering and preserving quality of life for people living with progressive chronic illnesses or approaching the end of life, a lack of knowledge about the realities specific to people in the LGBTIQ+ community can be truly problematic. To develop practices and tools to promote access to inclusive care, Claudia Gamondi, head of the Palliative Care and Support Service at CHUV, chose to conduct a study on the subject. “People in the LGBTIQ+ community are often afraid to approach the world of care because of their identity, which they often keep to themselves.” Discrimination in this environment can indeed take the form of a lack of recognition of identities and relationships, stigmatising attitudes, or unequal access to care. The TRUST-PALL study, carried out as part of a collaboration between the CHUV, the University of Lausanne, the HEIG-VD, the University of Zurich, and those concerned, aims to produce a set of recommendations, known as the "Rainbow Book", that will enable professionals, the people concerned, and their chosen families to develop a posture and tools that promote access to inclusive care. 

Bodies in Transition, Specific Needs        

The relationship to the body of transgender people, whose gender identity does not correspond to the sex assigned at birth, is a major issue. To align their bodies with their gender identity, some individuals undergo procedures such as chest surgery. Others, on the other hand, do not undergo surgery but camouflage their bodies through their clothes. For a transgender person, undressing in front of a doctor or caregiver can thus be a challenge. “I remember a transgender man who, until the end of his life, stayed dressed, refusing to wear pyjamas and to get help with body hygiene. For him, it was extremely difficult to show a body that he had wanted to change his whole life.” 

Being exposed to other people’s bodies can also be difficult in a hospital setting. For example, it may be difficult for a transgender man to share a room with a cis man (that is, an individual whose gender identity matches the sex assigned at birth).

To ensure their appearance aligns with their gender identity, a transgender person often takes hormones. However, some drugs can interact with this treatment and cause unwanted side effects, for example, facial hair growth in a transgender woman. "In these cases, you have to discuss with the person what is important to them, in order to preserve their gender identity and dignity," explains Claudia Gamondi. 

Rethinking the notion of family 

Palliative care aims not only to relieve the suffering of seriously ill people but also to support their loved ones. However, family members may be absent from the care journey because of breakups, rejection, or even violence. The concept of "chosen family" thus holds a fundamental place and must be recognised. Indeed, at the end of life, some people may no longer be able to make decisions about their care. If the "chosen family" has not been identified, those who best know the person’s wishes and values may be excluded from decision-making. “In one case, a patient’s husband, to whom he had been married for 20 years, was routinely treated by caregivers as though he were merely a friend.” 

For Sophie Peuble, who co-designed the exhibition “Maux pour maux” and worked for 20 years at the CHUV, varying the way questions are asked can have an immense impact. "You don’t have to become an expert. Adopting more neutral language can make a major difference." For example, saying 'the person you are in a relationship with' instead of 'your husband' or 'your wife.' During discussions with the people concerned, it is usually assumptions that cause harm, not questions. Maintaining a relationship of trust between the patient and the caregiver is essential, especially in palliative care.