Palliative care strategy - lived experiences and public views: research studies - key findings summary

3. Key findings

3.1 Understanding palliative care

• People have a much better understanding of palliative care if they have experience of it personally or through a work role.
• Palliative care offers much more than quality care of people who are dying but many people still think that introducing palliative care means someone is near death.
• People have diverse and varying views about the value of talking openly about death and dying, and the concept of a ‘good’ death.
• Doubts about when to shift from a focus on diagnosing and treating diseases makes conversations about palliative care, dying and death difficult, particularly for hospital specialists.
• People living with multiple health conditions or frailty focus on the daily challenges of life or accept their problems as part of ageing and do not see palliative care as relevant to them yet.

3.2 Experiences of palliative care for adults

• For people living and dying at home, general practitioners (GPs) and district nurses have important and valued roles providing ongoing relationships, care of the whole person and family, broad expertise and coordination of care.
• Palliative care in hospitals can be excellent with kind care, good symptom management, joint working with specialists and effective communication. Shortages of staff, resources and equipment, and poor communication have negative impacts.
• When people need urgent or emergency health or care, what matters is a timely response from staff who make people feel safe and well cared for.
• Specialist palliative care is regarded highly in hospitals, the community and hospices.
• Early specialist palliative care in cancer is described as restoring life and hope.
• Person centred care including family and carers happens when palliative care is part of the ongoing management of different serious or life-threatening illnesses.
• Palliative care and involvement of specialist palliative care services is offered less often and later for vulnerable groups with multidimensional health and social support needs, including people living with learning disabilities or severe mental illness, those with financial and housing insecurity, and prisoners who all need tailored and flexible approaches.
• People from Black, Asian, Chinese and other minority ethnic groups, including gypsy/ travellers, sometimes approach changes in health, progressive health conditions, serious illness, death, dying and bereavement in ways that are shaped by culture, family roles, beliefs and religious practices; and look for cultural and religious sensitivity from staff, involvement of the family and community, and suitable care including for personal hygiene and foods.
• LGBTQ+ people often value inclusion of family in decision-making, personal safety in clinical environments enabling disclosure of gender identity, legal support and advocacy, with autonomy and respect during and after a person’s death.

3.3 What matters when someone is dying, caring or bereaved

• When someone is dying what matters most is being free of pain and other symptoms and having the right people around them. People say they prefer to be at home, but the best place of care may change when the person becomes more unwell, and carers and patients have different views.
• Hospitals were a safe and valued place of care around dying for some people.
• Carers would like individualised help and support from earlier in the illness journey and some feel isolated while others find various ways to cope and maintain personal connections and relationships.
• What happens when a person dies, and the care and support given to them, and people important to them, before and around the time of death has a big impact on long-term experiences of grief.
• Bereavement experiences are personal, but people feel isolated and lonely unless they have practical and emotional support from family, friends, neighbours, work colleagues, employers, faith communities and other informal networks of support.

3.4 Experiences of care planning

• People continue to see care planning for when someone is not able to make their own decisions as problematic or of little personal relevance due to multiple factors including difficulties talking about dying, worries about causing or experiencing distress, uncertainty about what will happen with their health and care and financial costs; so many people said that they would prefer to focus on living well now although carers may be more interested in having a plan.
• Care planning is more complicated and less acceptable for some people from minority ethnic communities.

3.5 Experiences of children, young people, parents and families

• Palliative care for children is valued most when it is co-led and co-planned with trusted staff; is integrated with other children’s services, responsive and flexible; encompasses the whole family; and enables parents to parent as well as to care for their child throughout their life.
• Parents and carers with parental responsibility say they value care planning about maximising their child’s quality of life and minimising suffering and prefer flexible decisions about possible options; but these conversations bring conflicting emotions ranging from hope to the reality of their child’s death.
• Transitions to adult health and care services for young people and families are multi-dimensional and complicated with educational, social, and developmental impacts.
• Bereaved parents value early support before a child dies that enables them to make lasting memories of their child and psychological support for the whole family.