People at the End of Life
Population Outcome: People at the End of Life in Suffolk and North East Essex Die Well
Flexibility, choice and control over their care, and support for those closest to them, are essential for everyone in Suffolk and North East Essex at the end of their life. Early identification of end of life means people and their carers and families can plan and access the right support for all their needs. High quality, sensitive and compassionate care means people have the right support in the right place for them.
Data about Place of Death
- Nearly 42% die in hospital
- Around 1 in 4 die in care homes
- Just over 1 in 4 die at home
- in SNEE the proportion of people who die in their usual place of residence is significantly higher than the England average
There is variation depending on age – care home deaths and hospital deaths are similar in proportion in the 85+ group
Data about Deaths in Hospital
West Suffolk also had the lowest proportion of deaths in hospital across all age groups
In 2021 the percentage of deaths with 3 or more emergency hospital admissions in the last 3 months averaged at 7% in SNEE, with West Suffolk having the highest rate in 2021
The Story Behind the Outcome
In the name of love
Muscular dystrophy care
A caring hospice environment
Preparing for end of life
Delivering community-based healthcare
Demography and end of life
- On average in England, approximately 1% of the population die each year
- The majority of people who die in England are aged 75 years and older (68% in 2016) and this proportion has changed little over recent years although, the age at which people die over the age of 75 years has been increasing significantly
- Ageing population – SNEE has more older people than national average with almost 1 in 4 aged over 65, and in 20 years this will be 1 in 3
- In 2040, 51% of all deaths are projected to be in those aged 85 years or older
Rates and Causes
SNEE has higher than average percentage of deaths from cancer and higher than average deaths in care homes for people with dementia
- Age affects place of death, with the oldest people most likely to die in a care home and least likely to die in a hospice.
- Cause of death also affects place of death, with a particularly high proportion of deaths from liver disease, stroke and COPD occurring in hospital, a high proportion of deaths with dementia occurring in care homes and a dominance of cancer deaths in hospice
- The total over 65+ population living in a care home is expected to rise by around 90% in the next 20 years.
Projecting Older People Population Information System (POPPI) estimated that 8,910 over 65s are living in care homes in SNEE
LGBT experiences at end of life
1.Anticipating discrimination – can lead LGBT people to access palliative care services late or not at all.
2.Complexities of religion and LGBT end of life care – not always ensuring LGBT patients and their families have their spiritual needs addressed.
3.Assumptions about identity and family structure – by health and social care staff, impacting on LGBT people’s experiences of care; some clinicians discriminate on the basis of sexual orientation.
4.Varied support networks – choosing to be surrounded by close friends and constructed support networks alongside biological ones; ensuring loved ones are respected and recognised as next of kin.
5.Unsupported grief and bereavement – partners feeling isolated during bereavement because of their sexuality.
6.Increased pressure on LGBT carers – increased pressure on informal carers where people are accessing palliative and end of life care services late or not at all.
LGBT people may also experience barriers to palliative care because they are:
- three times more likely to be single
- less likely to have children
- far more likely to be estranged from their birth families (though many have alternative family structures)
- significantly more likely to experience damaging mental health problems
Spiritual needs at end of life
– for meaning, purpose and value in life – for love
– to feel a sense of belonging – to feel hope, peace and gratitude
In exploring spiritual needs with people, several models can be helpful, such as the HOPE tool:
Hope – What are your sources of hope, strength, comfort and peace?
Organised religion – Do you have a religion or faith? How important is your religion or faith to you?
Personal spirituality and practices – Do you have personal spiritual beliefs that are separate to organised religion? What are they? What aspects of your spirituality or spiritual practices do you find most helpful to you personally?
Effects on medical care and end of life issues – Has your illness stopped you doing things that give your life meaning and purpose? Are there any specific practices we should know about when we care for you?
Inequalities in access to hospice care
Certain groups are under-represented in accessing hospice care:
- The oldest old (over 85) – though this is changing
- Ethnic groups – in particular Pakistani, Indian, Bangladeshi, Caribbean, Chinese, African
- Those living in rural areas – exacerbated by costs and time travelling
- People living in deprivation – in particular if they lack health literacy and knowledge of services
Non-cancer conditions e.g., chronic chest and heart disease, dementia, frailty, cystic fibrosis, liver disease, and learning disabilities:
- Prolonged needs and difficulties in determining when in the terminal stage leads to late or no hospice referral.
- The needs of the growing numbers with multimorbidity and frailty presents a major challenge.
Non-hospice care can be a choice, rather than an inequality:
- Where care needs are better met by other services e.g., care homes.
- For those with longstanding trusting relationships with their GP and Community Nursing Team.
- Ethnic minority people with cultural and religious needs at the end of life may prefer their community’s care.
- However, those with concerns over social prejudice may have less access to hospice care, or specific care needs.
The research concluded that these inequalities are the responsibility of the whole health and social care sector, and need a collaborative and innovative whole-systems approach.
Quality of care at end of life
Informal Carers – Evaluation of Services) collects information on
bereaved people’s views on the quality of care provided to a
friend or relative in the last 3 months of life, for England.
Key data from the last survey in 2015 found the quality of
care given to the person varies:
- 3 out of 4 rated care as outstanding, excellent or good,
while 1 in 10 rated care as poor.
- The relatives of people who died in hospital rated overall
quality of care significantly worse than any other place of death.
- Significantly more people with the most deprived status
have care rated as fair or poor (29%) compared with the
least deprived group (22%).
The National Survey of Bereaved People also found:
Dignity and respect – staff in hospices were most likely to be rated as always showing dignity and respect to the patient in the last 3 months of life, and while other settings were rated as giving dignity and respect at least most of the time, GPs are significantly more likely to be rated as never treating patients with dignity and respect in comparison with all other settings.
Pain relief – was reported by relatives as being provided “completely,
all of the time” most frequently for patients in hospices (64%) and least
frequently for those at home (19%). Almost 1 in 13 (8%) people
cared for at home did not have their pain relieved at all.
Place of death – almost three-quarters (74%) of respondents whose relative died in hospital believed that their relative died in the right place, despite only 3% of all respondents stating that patients wanted to die in hospital.
Deaths in hospital
Locally, NEE percentage increased from 5.6% in 2015 to 7% in 2021, Ipswich & East decreased from 6.5% to 5.2%, and West Suffolk increased from 7.1% to 8.6% but actual admission numbers are small for all three
References & Further Reading
What we know matters and why
|I want to be able to prepare for the end of my life||I need time to think and plan for my end of life.|
Timely identification of end of life means I can discuss with those closest to me my choices and wishes.
|I want to receive high quality care||Professionals sharing my plan with me, my carer and family (including my chosen family), and each other, means care is joined up and meets my needs.|
I deserve the best care whether in my home, hospice or hospital, including effective pain relief when I need it.
Flexible care gives me confidence my care can adapt as my needs and choices change.
|I want information on what to expect and my choices||Clear, sensitive, compassionate communication from professionals, giving me time to ask questions, helps me understand what is happening and to plan.|
Knowing what to expect and what support is available means I can make informed choices.
|I want to be treated as an individual||Treating me, my carer and my family with dignity and respect, recognising my culture, characteristics, any physical health conditions and my life circumstances, means my care and support is inclusive, sensitive and responsive to my needs.|
|I want to be seen and heard||Having choice and control over my care means I, and those closest to me, have a good experience at end of life.|
Compassion, sensitivity and understanding from health and care services, my family, friends, neighbours, school, workplace, and community, means I feel cared for and supported.
How will things be different in Suffolk and North East Essex
|We will improve the identification of end of life for people with diverse long term conditions.||We will encourage family-administered medication where people choose and it is safe, to prevent delays in obtaining pain relief at home.|
|We will ensure people at end of life are not moved from the setting of their choice unless necessary.||We will co-produce awareness in communities of end of life and how to speak to people and their carers and families.|
|We will co-produce awareness and training to ensure all health and care environments understand end of life, communicate sensitively and provide compassionate care.||We will support people to maintain their health and wellbeing before, while waiting for, during and after treatment to help them stay well.|
|We will co-produce a continuum of support from identification of end of life to bereavement for people at end of life and their chosen families.|