Changing the
conversation
Care and support for people with a
terminal illness now and in the future
April 2015
Most of these people will have been
living with a terminal illness, whether
that's terminal cancer or any other
illness. By that, we mean they will have
reached a point where their illness is
likely to lead to their death. Depending
on their condition and treatment, they
may live with their illness for days, weeks,
months or even years after this point.
They will probably have needed care and
support for all or part of that time.
Because life expectancy is increasing,
people with a terminal illness are living
with more complex needs than before.
Indeed, they will often have multiple
long-term conditions. As we saw last
winter, there are already huge pressures
on services to provide the care that
people need.
Every day matters when you’re living with
a terminal illness. People want to be able
to get the most from the time they have
left. Part of that is about people feeling
able to talk to their doctors, nurses,
family and friends about the sort of care
they would like and the things they want
to do. It matters that the people they
are talking to be skilled in having these
important conversations.
Our work, as well as that of organisations
such as Dying Matters in England, Good
Life, Good Death, Good Grief in Scotland,
the All Ireland Institute of Hospice and
Palliative Care in Northern Ireland and
Byw Nawr in Wales, is helping the public
think and talk more about terminal
illness. This has government support,
with all four UK governments producing
strategies to improve care for people
with a terminal illness
2
. But more work
still needs to be done to make it a reality.
The UK is considered a world leader in
supporting people living with a terminal
illness
3
. But carers say seven out of every
10 people with a terminal illness in the
UK do not get all the care and support
they need*
4
.
If that’s the case now, what happens
when there’s one more person dying
every ve minutes?
We believe the conversation needs to
move on urgently if we are to meet the
growing challenges, especially as the
post-war generation moves beyond
retirement age. Policy makers, health and
social care professionals, service planners
and communities must talk honestly
about what sort of care and support we
want to give people aected by terminal
illness when their needs are becoming
more complex, are often being unmet
and are set to grow in number.
Terminal illness is changing
Today, one person in the UK dies every minute.
Year on year, more people in the UK are dying as our population ages.
Over the next 25 years, the number of deaths will increase by around
100,000 more deaths each year
1
.
That’s one more person dying every ve minutes.
Why we must change the conversation about terminal illness
*Ipsos MORI survey of 1,067 UK carers aged 16-75
3
Cover image: Simon Rawles/ Marie Curie
is how often they are admitted to
hospital as an emergency. In England,
people in the last year of life have an
average of 1.5 emergency admissions,
and on average spend a total of 22 days
in hospital following those admissions
9
.
In Wales, it was typically just under
23days
10
and people in Scotland in the
last six months of life spent anywhere
between 10 and 22 days in hospital
11
.
Unfortunately, this data is not currently
available for Northern Ireland.
Carers say seven out of every 10 people
with a terminal illness in the UK do not
get all the care and support they need
12
.
4
Why we must change the conversation about terminal illness Why we must change the conversation about terminal illness
Many of the needs of people
with a terminal illness and
their families are unmet and
unrecognised, and signicant
inequaties exist in the system
There are a number of factors which
make it harder for certain groups to
access care. This can be down to the
particular illness you have. For example,
people with degenerative conditions
such as dementia, chronic obstructive
pulmonary disease (COPD) or heart
failure are less likely to be referred to
a palliative care unit than those with
terminal cancer
13, 14
.
This is partly because the roots of the
modern hospice and palliative care
movements developed in response to
the needs of people with cancer. We
know, however, that palliative care can
signicantly benet people with a whole
range of terminal conditions.
Factors completely unrelated to your
illness can also aect how easy it is for
you to get the care you need
15
. Access
to suitable or appropriate care can be
more dicult if you have a disability
16
,
if you are from a Black or Minority
Ethnic background
17
or if you are
LGBT
18
. The same is true if you’re
homeless
19
, in prison
20
, or you’re from a
deprived area
21
.
with a terminal illness don’t get all the care and support they need
Carers say
7 out of 10 people
with a terminal illness don’t get all the care and support they need
Carer’s say
7 out of 10 people
FPO FPO
5
Forty-four per cent of adults in the
last year of life have multiple long-
term conditions
6
. The number of
people in England with at least three
multimorbidities is expected to have
risen from 1.9 million in 2008 to 2.9
million by 2018
7
. In Northern Ireland,
the number of adults living with a
long-term condition is expected to
increase by 30% by 2020
8
.
We can expect similar increases
throughout the UK.
A good indication of how well
someone’s care is being managed
We need to be ready for
unprecedented demands
People with a terminal illness are living with more complex needs and often multiple
long-term conditions
44%
of adults
in the last year of life have
multiple long-term conditions
People have more complex needs
The number of people
in England with at least
three long-term
conditions is expected
to have risen from
1.9
million
2008
2.9
million
2018
FPO
Advances in medicine and care
coupled with the adoption of healthier
lifestyles mean people now live longer.
However, they are more likely to
develop multiple long-term conditions
(known as multimorbidities).
People with multimorbidities tend to
experience poorer quality of life. They
are much more likely to have unplanned
and undesirable hospital admissions
that could have been prevented
5
. It is
also much harder to predict when
they are approaching the end of their
life, presenting new challenges to
planning their care when they become
terminally ill.
Source: see notes 6 and 7
Source: see note 4
76
Why we must change the conversation about terminal illness Why we must change the conversation about terminal illness
At present, every year around 470,000
people die in England
22
, 54,700 people
in Scotland
23
, 32,000 in Wales
24
and
15,000 in Northern Ireland
25
. Over the
next 25 years, this is set to increase by
about an extra 100,000 people dying
each year across the UK
26
.
We know that about three quarters of
these people will need and benet from
some form of palliative care
27, 28
.
Those who are in the last year of their
life already account for 9.4 million
NHS bed days in England
29
and nearly a
quarter of all bed days (over a million) in
Wales are occupied by someone who is
in their last year of life
30
. About half of
all deaths still occur in hospital in each
of the four nations of the UK
31
.
Other research suggests that almost
three in every 10 hospital inpatients are
in their last year of life
32
. Around 15%
of all emergency hospital admissions in
England belong to the 1% of people in
their nal year of life
33
.
If existing services cannot meet the
current needs and there is no change,
then this growth in numbers of people
dying will lead to even greater
unmet needs.
There will be a dramatic increase in the number of people living with a terminal
illness in the coming years
15,000
32,000
54,700
470,000
England
571,700
UK
Scotland
Northern Ireland
Wales
Number of deaths each year in the UK
100,000
more
deaths
over the next 25 years
FPO
Source: see notes 22, 23, 24, 25 and 26
Layton Thompson / Marie Curie
Why we must change the conversation about terminal illness
8
Why we must change the conversation about terminal illness
Sometimes it isn’t even necessary to
make a choice between the two. For
example, most people want to be cared
for in their own homes at the end of
their life. Providing more services in
the community will reduce pressure on
hospital beds, meet people’s wishes and
has the potential to be a more ecient
and eective use of NHS resources.
But even so, investment remains very
much focussed on acute services in a
hospital environment.
We speak to people living with a
terminal illness and their families every
day. This is what they tell us:
It’s an isolating and confusing
experience
Many people with a terminal illness
and their families feel they cannot get
the information and support they need
to help them through an extremely
dicult time. Often they are uncertain
where to go for help and who to ask
about the many dierent issues that
they may face.
This is often made worse by
professionals struggling to
communicate with them clearly,
particularly when talking directly about
the fact that someone is going to die.
If professionals do not provide the
appropriate information, people may
feel unsure about what services they
need and unable to make decisions that
benet them.
People with a terminal illness
and
their families feel they
don't
get the right support
“To begin with you don’t really know
what you’re looking for. You don’t know
what things you want to nd out until
you actually sit and talk to someone
who can understand
34
.”
Care for people living with a terminal illness should be based on what individuals
and their families need, rather than what works best – or is easiest – for the health
and social care system to provide.
Simon Rawles/ Marie Curie
10
Why we must change the conversation about terminal illness
11
Why we must change the conversation about terminal illness
It is too dicult to get care
when it is needed
For many families, nights and weekends
can be worrying times because of a
lack of accessible, personal or eective
out-of-hours care in their area. Despite
improvements in some areas, access
to this care is inconsistent across the
UK. People living with a terminal illness,
carers and health and social care
professionals tell us that out-of-hours
care and equal UK-wide provision of
care are the two major areas they
would like to see more research in.
43
People who have had negative
experiences of out-of-hours care in
the past may be reluctant to use those
services again. People say they are
afraid to see a dierent doctor, who is
not familiar with their needs, wishes or
illness, as they worry this may result in
an unwanted hospital admission.
Ineective coordination of care
between services such as health and
social care or general and out-of-
hours practice, and between dierent
organisations, can lead to unnecessary
delays for care and support. Evidence
in England suggests that this problem
is getting worse, as between 2012 and
2013, the VOICES survey of bereaved
relatives shows a signicant fall in
ratings for service coordination.
“I did feel a bit abandoned and a bit
scared… the middle of the night is a
very terrifying place to be in when
you’re not sure what to do”
[Bereaved carer – husband with cancer]
42
Some carers report feeling unsupported
and left out of conversations about
their loved one’s care
36
, as well as
nding a lack of information to help
them prepare for the reality of a loved
one dying at home and support after
bereavement.
More and more people will also
potentially be facing terminal illness
without the support of a carer, as
the number of people living alone
increases. In Northern Ireland, for
example, it’s estimated that a third of
people over the age of 65 will be living
alone by 2020
37
.
It is an unequal system
Research shows that people with a
terminal illness do not have equal
access to the care they need
38
. They and
their families are well aware of this.
“He was still having radiotherapy…
doctor was saying ‘Well I wouldn’t rule
out another stem cell transplant.’ He
told him that two weeks before he
died… and it was giving him the wrong
signals… he was clutching at straws”
[Bereaved carer – partner with cancer]
35
“My overwhelming
impression is that there’s
lack of consistency. It all
depends where you live.”
[Bereaved carer – daughter with cancer]
39
“Before even checking the
patient out a lot of times
they just go, ‘hospital’,
because they are too scared
to deal with that patient,
with all the tablets and the
conditions they’ve got
44
.”
People living with a terminal illness
also feel the care and support available
to them is inconsistent between
dierent places of care. Bereaved carers
also report a lower quality of care in
hospitals than at home or in a hospice
40
.
It is important that services are provided
that people feel comfortable using,
otherwise they may nd it dicult
to see the benet.
“I didn't belong in terms of what I felt
like age-wise, disability-wise, because
I was still walking - and so what I saw
was lots of people in wheelchairs, lots
of people over the age of 50 or 60 and I
was 20-something. And also I didn't see
anybody from a dierent ethnicity, so it
was predominantly white...male, 50s
and 60s...in some ways I left feeling
more isolated”
[Terminally ill person with MS on a support group]
41
13
Why we must change the conversation about terminal illness
Our already stretched health and social
care system is failing to deliver that now
and the demands on it are only set
to grow.
So we need a conversation that tackles
the big issues and nds solutions:
• We need to discuss how we are
going to nd the resources to care
for increasing numbers of people
with a terminal illness who have
increasingly complex needs.
• We need to make sure we do so in a
way that allows people to choose
where and how they will live towards
the end of their life.
• We need to decide how we are
going to support families and
communities so they can give people
living with a terminal illness the care
and support they want.
• We need to make sure that if you have
a terminal illness, you get the same
quality and ease of access to care,
regardless of who you are, where you
live or what your illness is.
• We need to discuss how professionals
will get all the training and support
they need to provide high quality,
person-focussed care.
We need everyone to take part in this
conversation, including people who
have a terminal illness themselves or
are supporting a loved one, health
and social care professionals, service
planners and policy-makers.
This issue aects us all. It’s likely to
touch most families in the UK in the
coming years. We may not like to think
about it in this way, but the reality is that
we will all die. So when we talk about
care and support through terminal
illness, what we’re talking about is the
life we want for our families. Our loved
ones. Ourselves.
The conversation about terminal
illness must change. If it doesn’t,
we as a society will be failing vulnerable
people at the time they need us most.
We must change the
conversation about
terminal illness
Everyone living with a terminal illness should have access to high quality care
and support, which meets all of their needs.
Simon Rawles/ Marie Curie
14
1 ONS (2014). 2012-based National Population Projections.
2 End of Life Care Strategy: Promoting High Quality Care for All
Adults at the End of Life (Department of Health, England, 2008);
Together for Health, Delivering end of life care. A Delivery Plan up to
2016 for NHS Wales and its partners (NHS Wales, 2013); Living and
Dying Well: A National Action Plan for End of Life Care in Scotland
(Scottish Government, 2008); and Living Matters, Dying Matters: A
Palliative and End of Life Care Strategy for Adults in Northern Ireland
(Department of Health, Social Services and Public Safety Northern
Ireland, 2010)
3 Economist Intelligence Unit (2010). The quality of death: Ranking
end-of-life care across the world. The Economist, 14 July 2010, p. 6.
4 On behalf of Marie Curie, Ipsos MORI interviewed a quota sample
of 1,067 adults aged 16-75 online who had cared for a family
member, friend or neighbour who was, or is, terminally ill in the last
3 years. This sample was screened from a nationally representative
sample of 6,136 online adults aged 16-75 within the UK. Interviews
took place between across the UK using i:omnibus, Ipsos MORI’s
online omnibus between 3rd and 29th October 2014.Data are
weighted by age, gender, region, working status and social grade to
match the prole of the target audience.
5 Payne, R. A. et al. (2013). The eect of physical multimorbidity,
mental health conditions and socioeconomic deprivation on unplanned
admissions to hospital: a retrospective cohort study. Canadian
Medical Association Journal, March 19, 2013, vol. 185 no.5.
6 Nueld Trust, 2015, Individual correspondence with Marie Curie
(data available on request). Cohort of 73,243 adults as dened in
Nueld Trust 2012 report: “Understanding patterns of health and
social care at the end of life”, List of chronic (long term) conditions:
Diabetes, Hypertension, Congestive heart failure, COPD, Ischaemic
heart disease, Asthma, Angina, Cerebrovascular disease,
Connective tissue disease/rheumatoid arthritis, Sickle cell disease,
Renal failure, Cancer and Dementia. Chronic (long term) conditions
are assigned to individuals by scanning all inpatient diagnoses
recorded during the last two years of life.
7 Department of Health (2012). Long Term Conditions Compendium
of Information – Third Edition. 30 May 2012.
8 DHSSPS – Living with Long Term Conditions – A Policy Framework,
April 2012 & Institute of Public Health in Ireland – Making Chronic
Conditions Count, February 2010.
9 Understanding patterns of health and social care at the end of life,
Nueld Trust, 2012
10 Marie Curie and the Bevan Foundation (2014). Death and dying
in Wales.
11 ISD Scotland (2014). Percentage of End of Life Spent at Home or in
a Community Setting: Financial years ending 31 March 2009 to 2013.
August 2014.
12 See note 4.
13 Gardiner, C. et al (2011). Barriers to providing palliative care for
older people in acute hospitals. Age & Ageing, 40 (2). pp. 233–238.
14 Marie Curie and the Alzheimer’s Society (2014). Living and dying
with dementia in England: Barriers to Care. December 2014
15 Dixon J. et al. (2015). Equity in the provision of palliative care in the
UK: Review of evidence. Personal Social Services Research Unit, LSE.
March 2015.
16 Marie Curie Policy and Public Aairs (2014). The experiences
of caring for disabled people at the end of life. Marie Curie, 2014
[unpublished]
17 Calanzani et al (2013). Palliative and end of life care for Black,
Asian and Minority Ethnic groups in the UK: Demographic prole and
the current state of palliative and end of life care provision. June 2013.
18 Fuller et al (2011). Open to all? Meeting the needs of lesbian, gay,
bisexual and trans people nearing the end of life. National Council
for Palliative Care, Consortium of Lesbian, Gay, Bisexual and
Transgendered Voluntary and Community Organisations.
19 Davis et al (2011). Are the homeless dying without access to
palliative care? BMJ 2011;342:d3018.
20 Peacock (2014). Dying in prison: ‘Both sides of the fence’ study.
eHospice, 12 June 2014. Online at – http://www.ehospice.com/uk/
ArticleView/tabid/10697/ArticleId/10878/language/en-GB/View.
aspx
21 Barnet et al (2012). Epidemiology of multimorbidity and
implications for health care, research, and medical education: a cross-
sectional study. The Lancet 2012 Jul 7;380(9836):37-43
22 Oce of National Statistics (2014). Deaths in England and Wales,
2013, Part of Death Registrations Summary Tables, England and Wales,
2013 Release.
23 General Registrar Oce for Scotland (2013). Vital Events
Reference Tables: Table 5.4 Deaths by sex, age, and ethnic group,
Scotland 2013.
24 Oce of National Statistics (2014). Deaths in England and Wales,
2013, Part of Death Registrations Summary Tables, England and Wales,
2013 Release.
25 Northern Ireland Statistics and Research Agency (2013). Deaths
in Northern Ireland, 2013/ Additional tables for Deaths in Northern
Ireland, 2013 http://www.nisra.gov.uk/demography/default.asp23.
htm
26 ONS (2014). 2012-based National Population Projections.
27 Murtagh FEM, Bausewein C, Verne J, Groeneveld EI. (2014). How
many people need palliative care? A study developing and comparing
methods for population-based estimates. Palliative Medicine, January
2014, vol 28, no. 1, pp 49–58
28 Moens K, Higginson IJ, Harding R (2014). Are there dierences
in the prevalence of palliative care-related problems in people living
with advanced cancer and eight non-cancer conditions? A systematic
review. Journal of Pain and Symptom Management. 2014 Oct; 48(4)
pp. 660–77.
29 National End of Life Care Intelligence Network (2012). What do
we know now that we didn’t know a year ago? New intelligence on end
of life care in England, p. 10.
30 Marie Curie and the Bevan Foundation (2014). Death and dying
in Wales.
31 ONS (2014) Deaths: area of usual residence and sex‚ by place
of occurrence, numbers and percentages, 2013. England and
Wales; Deaths, by sex, cause and place of occurrence and whether
post mortem performed, Scotland, 2012 provided by the General
Register Oce for Scotland; NISRA (2013) Statistical Bulletin: Death
in Northern Ireland 2012.
32 Clark D et al. (2014). Imminence of death among hospital
inpatients: Prevalence cohort study. Palliative Medicine28 (6)
pp.474–479. June 2014.
33 http://www.nueldtrust.org.uk/blog/counting-cost-end-life-
care
34 Cragg et al. (2014) Marie Curie: Feedback on focus group on
Information and Support Service. [Internal document]
35 Marie Curie Policy and Public Aairs (2014). Dicult
conversations with dying people and their families. Marie Curie,
March 2014
36 Oce of National Statistics (2014). National Survey of Bereaved
People (VOICES), 2013. July 2014.
Endnotes
Why we must change the conversation about terminal illness
15
Why we must change the conversation about terminal illness
37 Transforming Your Care – A Review of Health & Social Care in
Northern Ireland, December 2011.
38 Dixon J. et al. (2015). Equity in the provision of palliative care in the
UK: Review of evidence. Personal Social Services Research Unit, LSE.
March 2015.
39 Marie Curie Policy and Public Aairs (2014). Dicult
conversations with dying people and their families. Marie Curie,
March 2014
40 Oce of National Statistics (2014). National Survey of Bereaved
People (VOICES), 2013. July 2014.
41 Marie Curie Policy and Public Aairs (2014). Dicult
conversations with dying people and their families. Marie Curie,
March 2014
42 ibid
43 James Lind Alliance (2015). Palliative and end of life care Priority
Setting Partnership.
44 Worth et al (2006). Out-of-hours palliative care: a qualitative
study of cancer patients, carers and professionals. The British Journal
of General Practice, January 1 2006; 56(522); 6–13
Charity reg no. 207994 (England & Wales), SC038731 (Scotland) A040
We’re here for people living with any terminal
illness, and their families. We oer expert care,
guidance and support to help them get the most
from the time they have left.
mariecurie.org.uk
MarieCurieUK
@MarieCurieUK
@MarieCurieEOLC
@MarieCuriePA
We need everyone to take part in this conversation,
including people who have a terminal illness
themselves or are supporting a loved one, health
and social care professionals, service planners and
policy-makers.
This issue aects us all. It’s likely to touch most
families in the UK in the coming years. We may
not like to think about it in this way, but the reality
is that we will all die. So when we talk about care
and support through terminal illness, what we’re
talking about is the life we want for our families.
Our loved ones. Ourselves.
The conversation about
terminal illness must
change. If it doesn’t, we
as a society will be failing
vulnerable people at the
time they need us most.
