End of Life Care in Frailty: Community settings

Dying with frailty from a life long-lived is as much a social as a physical process. Uncertainty at the end of life with frailty is not only medical in nature - it is also psychosocial, and is about the cohesion, capacity and capability of family and communities to care for an older person over the last phase of life.

Community care at the end of life involves a mixed workforce: the multidisciplinary health care team including paramedics, social carers, voluntary agencies, local authorities, friends, families and community groups.

The NHS Long Term Plan¹ for England includes the formation of Primary Care Networks - bringing general practice surgeries together at scale to provide a wider range of services to patients and to more easily integrate with the wider health and social care system.² Working across sector and service boundaries will improve the quality and continuity of care. Transitioning across care settings is a common experience for older people with frailty at the end of life.

Living and dying ‘at home’

Projections of place of death in the UK based on current trends predict the number of deaths in community settings to rise by 88.6% by 2040, and care provision in care homes and domiciliary care will have to double to meet this need.³ Home being the preferred place of death at the end of life is a widely held view in health policy and by the public.⁴ Increasing evidence suggests this view may not always reflect the views of dying patients, especially older people, where preferences are often around familiarity, comfort and ease of access to services rather than a particular location.⁵ However, ‘home’ remains a preferred place of care in the last phase of life, and a vital component to integrated care of older people with frailty at this stage of their lives.

Specific community issues

Older people and their social networks are often well known to GPs and practice teams and an ideal place for early identification of patient and carer need, advance care planning conversations and delivery of end of life care. Purposely designed frameworks and tools provide guidance, ongoing learning and core standards to inform community-based end of life practice (see Resources).

Some important considerations include:

• Using shared structures and information processes to enable continuity across services and to ensure patient wishes are met – e.g. enriched Summary Care Record and/or using the local Electronic Palliative Care Co-ordination System to communicate with other health providers, including the ambulance service and out-of-hours services, to ensure that anticipatory care plans are shared and previously expressed wishes respected. This requires patient consent.
   
• Ensuring family and carers have a 24-hour access number and feel confident to know when they might need to call, who to call and what information might be required
   
• Ensuring all services are aware of the location of any DNACPR or advance directives or patient wishes (e.g. the multi-agency campaign ‘message in a bottle’).
   
• Robust and responsive escalation plans where specialities, e.g. GPs, geriatricians, community nurses, palliative care specialists and paramedics, work together to support patient choice and feel supported in holding the risk of clinical uncertainty during sudden change.
   
• Responsiveness and crisis services for times other than actively dying - including night care.
   
• Prescribing anticipatory medication to be used in the event of a sudden deterioration to ensure comfort can be maintained in the patient’s usual place of residence. Timely access to injectable medication can be very challenging in the community, particularly out of normal working hours.
   
• Engagement with social carers - they have often known the person over a long period of time and are key in providing end of life care for many older people with frailty.
   
• Flagging people who are more at risk than others of inappropriate hospital admission – such as those living alone, or with certain symptoms (e.g. breathlessness) which may escalate family/carer distress.
   
• Long-term condition monitoring and prescribing should be reviewed and changes clearly communicated to the wider team, including paramedics (for example, hypoglycemia may not be a reason to admit to hospital).
   
• The importance of the wider community in care pre and post death.
   

References

1. The NHS Long Term Plan. NHS England London; 2019.
2. Humphries R. Integrated health and social care in England–Progress and prospects. Health Policy 2015;119(7):856-9.
3. Etkind S, Bone A, Gomes B, Lovell N, Evans C, Higginson I, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Medicine 2017;15(1):102.
4. Department of Health. End of Life Care Strategy - promoting high quality care for all adults at the end of life. 2008.
5. Pollock K. Is home always the best and preferred place of death? BMJ 2015;351:h485

Resources

• The Daffodil Standards - Royal College of General Practitioners and Marie Curie
• Palliative and End of Life Care - Royal College of General Practitioners