People at the End of Life

• 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

All three SNEE alliance areas had a level lower than England average percentage of 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

Making sure that everybody is treated with dignity, everybody has a nice calm space and it’s a pleasure to be here and … you don’t get worried about coming here. It should be an inviting place where you feel relaxed.

If people need care in their home sometimes it’s a really difficult process to negotiate who is going to provide that care whether it be health or social care. And ultimately to the patient it doesn’t matter as long as they’re [obtaining] the care. So, a more integrated health so people can access the care in the community when and where they need to rather than worrying about who’s funding it.

Around palliative and end of life care… what they can do to prepare for that and better understand the challenges that that brings around them. And also, along the way, looking out for their mental health.

My poor dad who’s actually now in hospital at the moment he’s had a stroke and is actually dying. He’s been suffering with horrendous leg ulcers all summer. He’s actually a carer for my mum who’s got dementia and Alzheimer’s and neuropathy, who’s completely housebound. But he was still expected to be taken to [a clinic] twice a week to have care for his legs the nurses were fantastic, but he didn’t need that. And because I could physically take him, he wasn’t entitled to have any care at home. Whereas it would have been so much better for him to have it done at home. But again it’s not the nurses the doctors the surgeries fault it’s down to lack of finance. And what can we do about that it’s impossible absolutely impossible.

• 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

The highest percentage of deaths in Suffolk are in people aged 85 and over and in North East Essex it is in people aged 75-84

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

Marie Curie reported in 2016 on the barriers to care and quality of care LGBT people experience 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 are very individual. They can include the needs:

– 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?

Hospice care was reported by the National Survey of Bereaved People to provide the highest levels of quality of care. However, recently published research into inequalities in accessing hospice care in the UK and other countries highlighted a range of inequalities of access:

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.

The National Survey of Bereaved People (VOICES, Views of
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.

Analysis from the Nuffield Trust suggested that despite the national ambition to deliver personalised care planning for everyone identified as being in their last year of life to reduce avoidable emergency admissions, this trend has increased over the last decade.

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

End of life care | The Nuffield Trust

Emergency admissions in the 3 months before death – GOV.UK (www.gov.uk)

Palliative and End of Life Care Profiles – Data – OHID (phe.org.uk)

Palliative and end of life care – GOV.UK (www.gov.uk)

Atlas of variation for palliative and end of life care in England

Rolling annual death registrations by place of occurrence, England, period ending Quarter 2 (July to Sept) of financial year 2020 to 2021 – Office for National Statistics

health-economics-palliative-end-of-life-care.pdf (publishing.service.gov.uk)

Dying with Dementia: briefing (publishing.service.gov.uk)

better-end-of-life-report-2022.pdf (mariecurie.org.uk)

Healthy Ageing Needs Assessment Summary (healthysuffolk.org.uk)