Conversations that matter: talking about the end

We were asked by the BLMK Integrated Care Board End-of-Life (EoL) Care Transformation team to hold a series of conversations with local residents about their experiences of palliative and end of life care. 

Over a series of one-to-one conversations, we spoke with residents whose voices are often missing from these rare conversations: people living with mental ill health, addiction, long‑term conditions, and those from diverse cultural and faith backgrounds. 

We explored what matters the most at the end-of-life, and identified ways that services could improve. 

What did we find?

People understand end‑of‑life care—but only through lived experience

Most participants could describe palliative and end‑of‑life care, but this understanding came from personal hardship rather than clear explanations from professionals. As one participant put it, “It’s when it is final, when there is no hope and they are definitely going to die.”

Communication is the biggest gap

Residents repeatedly told us they weren’t given the information they needed—about what to expect, how someone might deteriorate, or what choices were available. Families often felt decisions were made about them, not with them. This lack of clarity caused distress, conflict, and a sense of powerlessness.

Emotional and cultural needs are not being met

While clinical care was often described as kind, emotional and psychological support was seen as inadequate. People valued small, personal acts of care, but felt these were inconsistent. Those with addiction, minority faiths, or LGBTQIA identities described feeling misunderstood or overlooked.

Planning tools are poorly understood

Awareness of Advance Care Plans, DNACPR, and RESPECT forms was very low. Even when people had heard of them, few had been supported to complete them. Some also felt their documented wishes weren’t always followed, undermining trust.

Conversations about death rarely happen

Talking about dying is still seen as taboo, especially for people with mental ill health or addiction. Yet when conversations did happen, people found them grounding and helpful. Many said these discussions should take place earlier and in calmer moments—not during crisis or immediately after difficult news.

What do patients want from end-of-life and palliative care? 

Our findings demonstrate that when people come to that time, they want care that is compassionate, honest, and centred on their whole identity—not just their medical needs.

• Better information and clearer guidance so families aren’t left guessing during the most difficult moments.
• More inclusive, person‑centred care that recognises cultural, spiritual, emotional, and identity‑based needs.
• Earlier, more normalised conversations about wishes, values, and preferences—helping people feel prepared rather than overwhelmed.
• Greater support for families who often carry the emotional burden of decision‑making without enough help.
• A system that listens, especially to those whose experiences are often overlooked.