End of Life Care in Frailty: Care homes

More than 400,000 people live in UK care homes. These are long-term care facilities which provide 24 hour care to people with functional dependency. Almost half (47%) of beds are in homes with nursing care - the rest are in care homes without nursing (otherwise known as 'residential homes'). Across both categories of home, care is predominantly provided by social care staff, many of whom have considerable experiential knowledge of how to provide highly specialised care. While 17% of homes provide care for people with learning difficulties, the bulk of provision is designed to provide care for older people with frailty.

Transition to a care home

When older people with frailty move to a care home they usually do so permanently, unless it is for time-limited assessment or rehabilitation as part of an intermediate care programme. In British culture, rightly or wrongly, care homes are not usually residents’ first-choice. The transition to care home is frequently associated with sudden or marked deterioration in physical function, cognition or both. More than three quarters of residents have dementia, more than half have mobility problems and up to a third have incontinence. The average number of diagnoses is 6.2 and number of medications is 8.

Identifying need

The average life expectancy in UK care homes is 24 months for care homes without nursing and 12 months for care homes with nursing. This belies a much more complex picture, where some residents enter a home with one or more rapidly deteriorating medical conditions. Many of this group die shortly after admission, while another group of residents live in care homes for much longer. It follows that all care home residents should be considered for end of life care, but it should not be taken for granted that all will need it straight away.

Advance care planning

Moving into a care home can be a difficult time for new residents and their families. They have often had to give up and move away from their lifetime home, leaving families and communities behind. They are likely to be adjusting to significant deterioration in health and functional status.

There is evidence that residents and families may not want to discuss end of life care when they are already grappling with so many complicated and potentially overwhelming issues. Clearly, assessing need for end of life care, and presenting opportunities for advance care planning is important at the point of admission to care home. There is evidence that advance care planning can work in care homes, can reduce inappropriate escalations of care and can improve resident and relative satisfaction with care.

For the reasons outlined above, however, the issue should not be forced at the time of admission. A luxury of long-term care is that discussions can always be revisited later. Care home staff often build very close relationships with their residents and their recommendations with regard to advance care planning should be heeded and followed-up.

Multidisciplinary working

A challenge to end of life care in care homes, as with all multidisciplinary working in care homes, is that multidisciplinary teams work differently than in most other care settings. The multidisciplinary team is split across multiple organisations and members will have differing schedules and work pressures. Opportunities to sit down as a team can be scarce. An advantage is that time pressures with regard to patient care are usually less acute than in other settings, so different professionals can add their assessments to the care plan at different times. This asynchronous assessment requires careful documentation (usually in the care home record, which will act as the only shared document between all professionals) and close case management (usually by the care home team, who will require to be fully updated by all visiting professionals).

Structured approaches

Given the emphasis on care home staff as care co-ordinators, it is helpful if they can institute a structured approach to end of life care. One approach which has gained relatively wide traction is the Gold Standards Framework, where staff triage all residents as:

• Blue (prognosis over a year)
• Green (prognosis in the region of months)
• Amber (prognosis in the region of weeks); or
• Red (prognosis in the region of days)

This is done in weekly meetings, and triage categories are used to help to seek external professional support and plan care accordingly. A challenge to wide roll-out of such models is that they frequently require care home organisations to invest in specific training or registration. The proposed roll out of the NHS Enhanced Health in Care Homes (EHCH) model as part of the NHS Long-term Plan will lead to more integrated workforce planning and training between long-term care homes and healthcare providers, and may enable more standardised approaches to how such models are commissioned.

Principles of care

The principles of good care in care homes match the principles of good end of life care in any setting. This involves situating care in an understanding of the residents’ life story and established priorities. Structured caring conversations with residents and their families can establish care plans that reflect resident priorities. Such patient-centred dialogues can be a useful way to reopen care planning dialogues that may have been difficult at the point of admission.

Medication and symptoms

Medication reviews at the point of admission and at six-month intervals thereafter are now recognised to be gold-standard practice if they involve care home staff, the general practitioner, a representative of the resident and a pharmacist with interest in frailty. It can often be possible to stop many medications when older people arrive in care homes. Communicating any adverse symptoms that might be associated with withdrawal or cessation to care home staff will enable them to monitor for these.

Assessing pain and the effectiveness of pain control can be challenging in care homes. Staff in care homes without nursing are not registered nurses and training in pain recognition needs to be adjusted to meet their needs. In addition, many residents have advanced dementia, meaning that they don’t routinely report pain and may manifest pain in atypical ways. This can challenge even experienced dementia care staff. Validated tools, such as the Abbey Pain Scale or the Pain Assessment in Advanced Dementia (PAIN-AD) tool can help staff take a structured approach.

An important issue in care homes is that plans put in place during working hours, may be over-ridden by visiting out-of-hours doctors or paramedics with less knowledge of the resident and less established working relationships with care home staff. Such visiting staff can often feel vulnerable in the face of medical complexity and may default to hospital admission, even when it is not appropriate, out of a sense of 'doing the right thing'. Traditional hierarchies do not always empower care home staff to advocate for residents in such scenarios.

Consideration should be given to ways in which care home staff can be empowered, and how clear messages and guidelines can be left for visiting health professionals, so that working hour plans are adhered to. A clearly worded advance care plan can be helpful in this situation.

Resources

• Gold Standards Framework
• New Care Models: The Framework for enhanced health in care homes - NHS England
• MyHomeLife - Caring Conversations