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

6. What matters when someone is dying, caring or bereaved

• Top priorities when someone is dying from a UK survey were:
  • Free of pain and symptoms (46.5%)
  • Being surrounded by loved ones (43.2%)
  • Dignity and self-respect (34.9%)
  • Being in a calm and peaceful atmosphere (27%)
  • Being at home (26.3%)

6.1 Care around dying

• Managing pain and other symptoms remained the most important aspect of care of the dying person, followed by being with the people who matter to you.
• Place of care is complex, with comfort more important than place. The practical and emotional challenges for carers was an important consideration and their views sometimes differed from the person who was dying.
• Preference for care at home shifted closer to death when care needs increased, or the person had more pain or distress; older people and those with less family support and care might prefer alternatives such as a care home.
• People having palliative care at home are often given a pack of injectable medicines to keep just in case they are needed urgently. This improved care if people understood why they were being offered and staff used them effectively.
• Care home staff wanted to care for dying residents and support families, but barriers including uncertainty of how and when the resident might deteriorate, access to advice day and night, relatives changing their mind in a health crisis, or lacking confidence in care staff could affect their abilities to provide care.
• Hospitals remained an important place of care around dying for people whose health changes rapidly and when there were long established relationships with a specialist team. When care at home was not possible or acceptable and no other options were available, hospitals were seen as a safe and valued place of care.
• Hospices and specialist palliative care units provided expert, multidisciplinary care but have relatively small numbers of beds so might not be able to meet expectations of being available when needed.

6.2 Caring and bereavement

• Carers would have liked individualised help and support from earlier in the illness journey so that they had more information about what to do and how to manage things like getting more support, equipment, and medicines, or applying for financial benefits.
• Timely reviews helped reduce crises, but barriers include poor communication and co-ordination among professionals, teams, and services.
• Carers had different ways to cope and individual needs but can maintain personal networks and drew strength from valued roles and relationships.
• Some carers (and patients) talked of isolation and loneliness affecting their own physical and mental health. Social contacts and local community support helped with maintaining relationships and wellbeing.
  • “I’d been caring for him [husband with heart failure and other health problems] for so long that I think my… my own self had kind of gone into the background […] and I’m not aware that I’m not looking after myself but obviously it’s taken its toll.”
• The UK Commission on Bereavement report (2022) gave a comprehensive view of experiences of loss, grief and bereavement and what can be done to improve care and support. Available at: https://bereavementcommission.org.uk/