Optimising Palliative Care for Older People in Community Settings
People are increasingly reaching advanced ages and live with frailty and progressive difficulties with their health. Palliative care focuses on preventing, detecting and relieving distressing physical, emotional, social and spiritual issues for patients and their families. Palliative care is recommended to support older people to live as well as possible and to die with dignity, but uncertainty surrounds how to achieve this.
Through the OPTCare Elderly project, we developed and tested a new service to improve the quality of life for older people living with frailty and advancing illness at home or in a care home. The new service was short-term integrated palliative and supportive care – SIPSCare, delivered by specialists in palliative care such as Macmillan Nurses, working closely with primary and community practitioners such as General Practitioners and District Nurses.
The project used mixed methods in two phases.
A postal survey completed by 443 bereaved relatives of people aged 75 years or over to understand how people thought health services could be better provided to support older people live well in their last months of life, and their carers.
Stakeholder consultations with older people and carers, professionals providing services and members of voluntary groups to consider the development of SIPSCare.
We evaluated the effectiveness and cost-effectiveness of SIPSCare service in a randomised controlled trial to usual care or the intervention SIPSCare. SIPSCare involved integrated person-centred palliative care delivered by multidisciplinary palliative care teams working with general practitioners and community nurses. The main outcome was a change in five key palliative care symptoms from baseline to 12-weeks. We conducted the trial in four general practices in England and recruited patients aged 75 years and over, with moderate to severe frailty, chronic noncancer condition(s) and two or more 2 symptoms or concerns, and family caregivers when available.
Trial registration: Controlled-Trials.com ISRCTN 45837097
Summary of Findings
There is a reliance on hospital care at the end of life for older people, despite the majority preferring to die in their usual place of care. Please read the full paper here.
- Older people who experience severe breathlessness in the last week of life, or have a primary diagnosis of respiratory disease are more likely to transition to hospital as their place of death.
- Older people who have discussed end of life care preferences, or who identify a key health professional who they can rely on, are less likely to transition to hospital.
SIPSCare for frail older people with non-cancer conditions has potential benefits for older people and carers within community settings. Uncertainty surrounds the optimal timing and indicators for this service to maximise benefit. Please read the full publication here.
This palliative and supportive care intervention SIPSCare is an effective and cost-effective approach to reduce symptom distress for older people severely affected by chronic noncancer conditions. It is a clinically effective way to integrate specialist palliative care with primary and community care for older people with chronic conditions. Further research is indicated to examine its implementation more widely for people at home and in care homes. Please read the full publication here.
Recommendations for policy and practice
- A reconfiguration of community palliative care services to deliver specialist palliative care through integrated working with the existing generalist workforce.
- Invest in evidence-based community breathlessness services for older people to reduce end of life transition to hospital.
- Assign a key healthcare professional, skilled in coordinating care, facilitating complex discussions and in future care planning with older people and their family.
- Increase training for community health care professionals in communication of difficult conversations and anticipatory care planning for older people with uncertain illness trajectories.
Work with older people living in community settings is continuing through our Symptom & Psychosocial Assessment & Communication Evaluation (SPACE) study.
Sussex Community NHS Foundation Trust
Funding Body: National Institute for Health Research (NIHR)
Period: November 2010 - May 2016