Why intimacy matters at the end of life
When we hear the word ‘intimacy’, we might immediately think of physical or romantic relationships. But intimacy can mean many different things. It can be found in holding someone’s hand, sharing a familiar joke, sitting quietly together or feeling able to talk openly with someone we trust.
These expressions of closeness can become especially meaningful when a person is living with a life-limiting illness. Yet intimacy is not always recognised or discussed as part of hospice and end of life care. A new research project led by Dorothy House hopes to change that.
Making space for intimacy
The IN-TALK study, which stands for Intimacy in Palliative and End-of-Life Care, will explore how hospices can better support the intimacy needs of patients and the people closest to them.
The England-wide project is being led by Dorothy House, in collaboration with the University of the West of England and St Oswald’s Hospice. It is funded by the National Institute for Health and Care Research through its Research for Patient Benefit Programme.
Researchers will work alongside patients, family members, bereaved people and hospice staff to create the first Intimacy Support Toolkit designed specifically for hospice settings.
The study takes a deliberately broad view of intimacy. It recognises that closeness might mean affection, emotional connection, companionship, quiet moments or simply the comfort of being near someone who knows us well.
When illness changes relationships
A serious or life-limiting illness can affect many different parts of a person’s life, including their relationships, independence, confidence and sense of identity.
Illness may change how people communicate or express affection. Physical symptoms, changes to the body, medical equipment, fatigue and the demands of providing care can all alter familiar ways of being together. But the need to feel connected, valued and recognised as a whole person does not disappear.
Previous research led by Dorothy House found that intimacy can help people maintain a sense of identity, dignity and connection at a time when illness is profoundly affecting everyday life and relationships.
However, the research also found that conversations about intimacy were frequently missed. Patients, partners, relatives and bereaved people described a need for closeness that was rarely discussed, despite its importance to their emotional wellbeing. Healthcare professionals wanted to offer support but did not always have the confidence, knowledge or training needed to begin these conversations.
Seeing the person, not only the illness
Dr Kate Sugar, Senior Researcher and Evaluation Lead at Dorothy House, explains:
“Intimacy is about connection with the people who matter to us and with the parts of ourselves that make us who we are. A life-limiting illness can change how we express that connection, but it doesn’t make it any less important.”
She adds that the project wants to help hospice teams feel more confident talking about intimacy, so that patients and the people important to them feel seen as people, rather than only through the lens of illness.
This matters because good end of life care is about more than responding to clinical needs. It also means paying attention to a person’s identity, relationships, wishes and emotional, social and spiritual wellbeing.
Making space for conversations about intimacy does not mean assuming what closeness should look like. Instead, it means giving people permission and opportunities to talk about what matters to them, in ways that feel comfortable and appropriate.
Learning from lived experience
The 24-month IN-TALK study will begin by gathering insights through surveys involving hospice service users and healthcare professionals.
Patients, relatives, bereaved people, hospice staff and researchers will then come together through co-production workshops to help design practical resources and guidance.
The resulting Intimacy Support Toolkit is expected to include conversation prompts, educational materials and examples of supportive practice. Its purpose will be to help hospice professionals begin honest, compassionate and timely discussions, while enabling patients and families to express their needs or concerns.
Placing lived experience at the heart of the project should help ensure that the toolkit responds to genuine challenges rather than making assumptions about what patients and families need.
The research builds on an earlier qualitative study involving seven hospices across England. That work identified intimacy as an important but frequently unmet need in hospice care. IN-TALK will explore what forms of support people find helpful and acceptable, with the aim of strengthening care across the physical, emotional, social and spiritual dimensions of intimacy.
Connection remains part of life
At the heart of this research is a simple but important idea: people do not stop needing connection because they are seriously ill or approaching the end of their lives.
Closeness may change. It may be expressed through small gestures, shared memories, reassuring routines, honest conversations or quiet companionship. What matters is that people are supported to maintain the forms of connection that hold meaning for them.
By helping hospice professionals recognise and respond to these needs, the project aims to reduce distress, improve wellbeing and support loving relationships during an immensely personal time.
The study’s findings will be shared through academic publications, conferences, clinical education forums and hospice networks. The prototype Intimacy Support Toolkit will also be made freely available online, helping hospices across the country develop their own approaches to intimacy support.
