End of Life Care in Frailty: Social support
The aim of this guidance series is to support clinicians and others to consider the needs of frail older people as they move towards the end of their lives and help them to provide high quality care.
This chapter encourages the multidisciplinary team to consider the social, practical and emotional needs of older people and their carers at the end of life. Please click here to view the other chapters in this series.
The social care needs of older people at end of life are vitally important. Neglecting social care needs can have devastating quality of life implications for older people, their family and friends. A person dies having lived a life, and not just with a disease. Social care needs are those related to being in connection with others; including family, friends and the wider social networks in which people live.1
The social wellbeing of older people with frailty and their family support is profoundly affected by progressive frailty. Prolonged dependence on others and uncertain illness trajectories can often strain and change relationships, leading to loss and isolation as well as financial and practical hardship. Comprehensive end of life assessment always involves the ‘social unit of care’ for a person - i.e. their home, family and their community. Older people are often keen to involve friends and family in discussions about their care, but permission should always be sought from the older person regarding contacting family and friends. The level of this assessment will depend upon care setting and individual need, however some key areas for assessment and intervention are described below.
The person behind the patient
There must be an assessment of the key people and places that are important to the older person – questions such as the below can be useful:
- ‘Who are important people in your daily life?’
- ‘Who might you see on a regular basis?’
- ‘Has anyone visited you since you have been in hospital?’
It is important to not assume that an older person’s family and friends knows about their everyday life. The use of Ecomaps (see Resources) can help to map out the important people in an older person’s daily life and the strength of that connection.
Strengths of a person
The capabilities of a person with severe frailty can be overlooked and assumptions made, open questions such as ‘What has worked for you in the past?’ can help us to see the personal and local resources which can be drawn upon.
Informational needs related to living and dying well
Care continuity, remaining socially connected and help navigating systems of care are priorities for older people and their family.2
As a multidisciplinary team (MDT) it is helpful to know:
- The local authorities that relate to your clinical areas. Most local authorities will have a dedicated webpage information site for older people detailing a range of resources available in their local area and what help can be expected from their local council. Keeping people socially active is an increasingly important area and there are numerous opportunities including (in some local boroughs) home visiting, taxi services and befriending services. Council offices, Local libraries and day centres are also often repositories for this information.
- Who in your clinical area you might refer to for a health and social care needs assessment or detailed discussion about care options – for example a care navigator/discharge co-ordinator /designated social worker/PALS, etc.
- Where there are links into the voluntary sector (see Resources) which can provide accessible person-centred advice on a range of issues related to the end of life, including advance care planning, care choices and working with the MDT.
Financial concerns are often very pressing for older people and those caring for them. Financial support at end of life in England and Wales for people with a “complex medical condition with substantial ongoing needs” is through a continuing health needs assessment.
Dependent upon eligibility criteria, people may receive some or full financial support to spend on care needs (see here for further information).
A person can be fast-tracked to receive funding if they have a rapidly deteriorating condition that may be entering a terminal phase. This can be complicated in people with severe frailty as prognostication is difficult. However, when a person has complex needs and signs of rapid decline, this avenue should always be explored. Once an individual is identified as being in need of Fast Track continuing care then the local health authority are obliged to put a care package in place within 48 hours. The uncertain trajectory in severe frailty can mean end of life needs change and the care package may need to be reviewed. The Fast Track pathway and tool can be found here.
Many organisations provide clear patient-focussed explanations of the funding process (see Resources) and support once a decision is made.
Funeral poverty is an increasing phenomenon affecting older people and the source of significant anxiety for those who fear they will become a burden on those they leave behind. Leading charities provide advice on reducing funeral costs and alternative types of funerals as does the Money Advice Service. If a person organising a funeral is on benefits they may be entitled to claim a Funeral Expenses Payment (or Funeral Support Payment in Scotland) from the government towards the funeral costs. This must be applied for within six months of the funeral.
Carers, who may or may not be family members, are lay people in a close supportive role who share in the illness experience of the patient and who undertake vital care work and emotion management.3 Friends and family of older people with frailty are often unrecognised, unsupported, and overlooked as they care for people at the end of life They are often co-ordinating several services, carrying out physical and emotional care over many weeks or months, and living with the uncertainty of a person dying in a protracted and often erratic way. As an MDT it is helpful to understand:
- Who are the main carers for the older person under your service – it is important to note that they might not self-identify as a ‘carer’.
- How you would assess a carers needs? The use of an evidence-based assessment tool, such as the Carer Support Needs Assessment Tool (CSNAT), may be helpful.
- Carers are entitled to a carer assessment which can be done through local social services or an approved assessor.
- Carers who spend at last 35 hours a week caring for someone who needs ‘substantial and regular’ care may be able to claim carers allowance.
- Carers may experience anticipatory grief.
- There are a many local and national networks and resources which you can signpost carers to – some are tailored specifically to carer support at end of life. Support can be provided personally, through groups or online (for example Carers UK digital resource).
Care after death
The practicalities of what to do when someone dies can be hard to think about in early bereavement. A death needs to be registered within five days and this requires certain information including the medical certification of cause of death. It is helpful to be able to signpost people to help within your organisation or to national resources to help minimise, where possible, the emotional and practical work that people have to undergo following a death.
Most bereavement reactions are not complicated, and the necessary support is provided by family, friends, and various societal resources. It is important not to 'medicalise' normal grief. However the impact of bereavement on older people is often minimised as a universal experience that is expected in old age. It affects all older people differently and can leave the bereaved feeling alone and isolated.
Not everyone needs or wants connection with a formal bereavement service, however for many there is a need for their grief to be recognised. Bereaved spouses are at particularly risk of a significant rise in mortality and morbidity in the year following death - this risk is greater if the spouse died in a sudden or unpredictable manner.4
As an MDT is important to understand:
- The normal process of grief and what can be expected (this will be embedded within a cultural context) in order to then understand more complicated grief and the associated risks. Consider who under your care might be vulnerable to complicated grief, and how you might assess complicated grief.
- How you might discuss any concerns you may have with a bereaved carer and perhaps, with their permission, alert their GP.
- What local resources are available to the population you serve e.g. –Specialist Mental Health Teams, IAPT service, local bereavement services.
- What national services to signpost people to, for example Cruse Bereavement Care.
It can be difficult to understand an older person’s wider life when clinical needs are so pressing, and social care needs are often solely focussed on care packages and personal care needs. However it is often continuing social connections that many older people with frailty prioritise in the last phase of life.
- Programme NEoLC. The Route to Success in end of life care–achieving quality in acute hospitals. NEoLCP London; 2010.
- Goodman C, Froggatt K, Amador S, Mathie E, Mayrhofer A. End of life care interventions for people with dementia in care homes: addressing uncertainty within a framework for service delivery and evaluation. BMC palliative care. 2015;14(1):42.
- National Institute for Clinical Improvement. Improving Supportive and Palliative Care for Adults with Cancer. London; 2004.
- Morin L, Wastesson J, Agahi N, Johnell K. Advanced Topics for End-of-Life Care. Innovation in Aging. 2018;2(suppl_1):5-.