A Swiss national research project is examining how LGBTQ+ people experience advanced illness and the end of life has just marked its first year – a milestone that underscores both the urgency of its questions and the scale of the work still ahead.
When we talk about palliative care and the end of life, the collective imagination still tends to construct a partial, simplified picture – one that rarely accounts for the plurality of experiences involved. Reality is far more complex. That recognition is the starting point for a Swiss national research project spanning the country’s linguistic regions and involving clinicians and researchers with strong ties to Ticino.
Launched on 1 February 2025 and scheduled to run until 31 January 2028, the study asks a question that has long been overlooked: how do LGBTQ+ people experience advanced illness, dying and palliative care?
The project is called TRUST-PALL – Tailoring Respectful and Understanding SupporT for LGBTIQ+ individuals in Palliative and End-of-Life Contexts. It is led by CHUV and the University of Lausanne, in partnership with the HEIG-VD and the University of Zurich, specifically the Swiss LGBTIQ+ Panel. The work is funded by the Swiss National Science Foundation.
“The project aims to address persistent inequalities in access to palliative and end-of-life care and to promote more inclusive, respectful and equitable support for lesbian, gay, bisexual, trans, intersex and queer people in our country,” says Claudia Gamondi, professor of palliative care at CHUV’s faculty of medicine and head of its palliative and supportive care service, formerly of the palliative care clinic in Bellinzona and Lugano.
Launched in February 2025 and running until early 2028, the study brings together a multidisciplinary team: Francesca Bosisio of HEIG-VD; Léïla Eisner and Tabea Hässler of the University of Zurich; Philip Larkin, professor of palliative nursing at CHUV; Clément Meier of the University of Lausanne’s HEC faculty; and Catarina Letras, a clinical nurse specialist in palliative care at CHUV and the project’s research manager.
Their task is twofold: to analyse care needs and identify structural and cultural barriers that limit LGBTQ+ people’s access to services – including their “chosen families” – and to examine healthcare professionals’ understanding of LGBTQ+ experiences.
One of the project’s most innovative features, Letras notes, is that for the first time in Switzerland it places clinicians, researchers and LGBTQ+ community members “on the same level”.
“The end of life is not the same for everyone,” Gamondi says. “For LGBTQ+ people it is often shaped by a history of exclusion, silence and discrimination that long predates their entry into the healthcare system.”
Like studies involving other marginalised groups, TRUST-PALL begins with those who first raise questions – what anglophone research calls “early adopters”: individuals and organisations that have already encountered the system’s shortcomings, often firsthand, Bosisio explains.
The methodology follows from that premise: a participatory approach involving healthcare workers, associations and community members. Workshops have been held in Lugano, Lausanne and Zurich to reflect Switzerland’s linguistic diversity. One tool is “photolanguage”: participants select images that allow them to speak about death and care through metaphor or lived experience, choosing their own level of exposure. Some recount personal stories; others speak about relatives; some imagine an ideal end of life.
“This process doesn’t just collect data,” Bosisio says. “It gives voice to individual experiences. For some people, recognising that what they lived through is not an isolated episode but part of a systemic problem is profoundly liberating. It shifts the burden from individual responsibility to a collective dimension.”
Approaching healthcare professionals can carry a high “entry cost”: the need to disclose, explain and risk not being understood. For many LGBTQ+ people, this is compounded by previous experiences of discrimination in medical settings. A recent Swiss literature review conducted within the project suggests the country is broadly in line with other western nations. LGBTQ+ patients report frequent verbal microaggressions and, at times, a sense that care itself can feel violent – not because of intent, but because it is delivered with discomfort, ignorance or within a deeply heteronormative framework.
No professional group is immune. Homophobia, like any prejudice, reflects wider society and permeates care environments.
Gamondi recalls a gay man undergoing oncology treatment whose husband was repeatedly referred to by the physician as “a friend”. “It’s a subtle but persistent form of linguistic violence,” she says, “that denies both identity and relationship. Language is never neutral; it reflects and reinforces a worldview that still struggles to embrace plural experiences.”
Change, the researchers note, is slow. As with other stigmatised groups – for example people with addictions, who are also often marginalised in palliative care – many LGBTQ+ patients choose not to disclose their identity. Not out of shame, but from fear of poorer care, judgement or not being taken seriously.
This intersects with what Bosisio calls a structural confusion between equality and equity. “Many healthcare professionals say they treat everyone the same. But that doesn’t necessarily mean being fair. Equity requires adapting resources, time and energy to specific needs. Some people can be followed with standardised protocols; a significant proportion cannot – for linguistic, cultural, identity-related or life-course reasons. The care system struggles to recognise this.”
Communication is therefore central. Clinically, small signals can make a significant difference: wearing an LGBTQ+ symbol on a coat, using open questions about gender identity or spirituality, avoiding assumptions. But these gestures, Gamondi stresses, cannot rely on individual goodwill alone; they must become institutional responsibility.
Although TRUST-PALL is not primarily an educational project, it will have training implications. One expected outcome is a “Rainbow Book”: a compendium of competencies, behaviours and best practices for inclusive palliative care. It would help fill what the researchers describe as a worrying gap in Swiss medical and nursing education, where gender and sexual orientation remain marginal topics.
The consequences are particularly acute in nursing, Letras says, given nurses’ close and continuous contact with patients’ bodies and intimate care. “Body, intimacy and body image can be especially complex for trans and gender-nonconforming people, often shaped by discrimination. Training is crucial to ensure sensitive, respectful care.”
Yet education alone is insufficient. There is no clear evidence that more training automatically produces better care. Cultural and social change is also required.
“Before we are caregivers, we are citizens,” Gamondi says, “formed in a deeply heteronormative context. Recognising our own biases is a necessary step to overcoming them.”
This ethos is embedded in the project’s governance. Local boards across linguistic regions – including Ticino – review and validate findings, with some members joining a national board to ensure shared interpretation beyond the research team. At the same time, the project maintains an international outlook, with external advisory boards and collaboration with the European Association for Palliative Care.
Ultimately, by weaving together local insight and national coordination, personal testimony and collective accountability, TRUST-PALL argues that recognising identity at the end of life is not an optional sensitivity but a core condition of dignity – a claim further tested and deepened through new evidence from the Swiss LGBTIQ+ Panel’s 2026 survey on palliative and end-of-life care.
