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268 Chapter 18
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https://t.me/med1917
Handbook of Palliative Care, Fourth Edition. Edited by Richard Kitchen, Christina Faull, Sarah Russell and Jo Wilson.
© 2024 John Wiley & Sons Ltd. Published 2024 by John Wiley & Sons Ltd.
269
19
barriers include the separation between mental health,
physical health, and intellectual disability services, silo
working between specialisms and commissioning arrange-
ments. Both groups experience prejudice which leads to
poor health outcomes, compounded by negative past expe-
riences in health and social care services, issues relating to
communication differences and accessibility issues.
Undoubtedly, people living with mental illnesses and
people with intellectual disabilities share some common
experiences and are clearly disadvantaged when accessing
palliative and end-of-life care services. It is important to
consider the specific needs of each group separately, with
unique wishes, life experiences, and abilities.
Many people with intellectual disabilities have mental
health needs and may also be mental health service users.
Similarly, there are many mental health service users who
also have intellectual disabilities and differences. People
living with mental illnesses and intellectual disabilities
often encounter other disadvantages which compound
their experience of marginalisation such as living in
poverty, a lack of family or social support, experience of
loneliness and isolation, substance use, as well as less access
to employment, leisure, and social activities.
These experiences and the chances of falling through
the gaps in service provision often means people with
mental ill health and people with intellectual disability do
not receive palliative care until the very last days of life, or
indeed at all.
This chapter is concerned with approaches and atti-
tudes. For most of the people it concerns, the components
of treatments and management of symptoms require many
of the same interventions as the general population.
However, the way that care is delivered, the timing of
Palliative Care for People Living
with Mental Illness and People
with Intellectual Disabilities
Jed Jerwood and Gemma Allen
Introduction
The only way death is not meaningless is to see yourself
as part of something greater: a family, a community, a
society.
[1, p. 127]
Palliative care in the United Kingdom is thought to be some
of the best in the world, yet we know this only benefits a
minority of the population [2]. Despite a focus on improving
accessibility to palliative care, some groups of people face
significant barriers, remaining marginalised, and under-
represented in services. Within this chapter, we explore some
of the issues associated with the provision of palliative care
for people with mental ill health and intellectual disability.
In 2015 [refreshed in 2021], the National Palliative and
end-of-life Care Partnership published the Ambitions for
Palliative and end-of-life Care [PEOLC] [3]. The frame-
work proposes six ambitions to improve access and quality
of PEOLC, including “each person gets fair access to care”
highlighting the inequalities which exist for some people
and communities.
I live in a society where I get good end-of-life care regardless of
who I am, where I live or the circumstances of my life.
[3, p. 3]
For people living with mental illnesses and people with
intellectual disabilities, many barriers to accessing high
quality palliative care exist. On an interpersonal level these
include negative attitudes, stigma, fear, and prejudice
among health-care professionals [HCP’s]. Structurally,
https://t.me/med1917
270 Chapter 19
Health-care professionals are often motivated by a desire
to help people recover and, particularly in mental health
services, death is seen to be a failure or something to be
avoided. More broadly, advances in health care have led to
higher expectation about curability and life expectancy.
Despite recent attention and an increase in discussion
and initiatives to encourage conversations about death,
dying, and grief [such as Death Café’s, Dying Matters
Awareness Week, Hospice Care Week, and Good Grief
Festival], the dying person can often experience feelings of
withdrawal and an avoidance of conversations about dying
and end-of-life care. Likewise, HCPs outside of the pallia-
tive care sector often do not feel confident speaking with
patients about death and dying. For the dying person living
with mental illness or intellectual disabilities this can mean
that they are doubly disadvantaged, with staff lacking
confidence in either speaking about death and dying or
addressing their care needs. This leads to raised anxiety in
HCP’s about their role and feelings of abandonment in the
dying person.
Palliative Care for People with Mental
Ill Health
The first part of the chapter aims to explore some of the
barriers experienced by people living with mental illnesses
when accessing palliative care, the issues which arise for
HCP’s in thinking about providing care for a dying person
with a mental illness and an incurable condition, and to
present some examples of strategies for improving care
experiences and breaking down barriers. The chapter
draws on recent research by the author [6, 7], which
includes the views of patients and carers, as well as HCPs
from a range of backgrounds, to better understand the pal-
liative and end-of-life care needs of people living with
mental illnesses and incurable conditions.
Mental Health in the UK
Around 1 in 4 people will experience a period of mental ill
health in their lifetime [8]. For many people, this is a brief
event in response to a stressful or difficult period in their
lives. In the UK, around 1 in 6 people report symptoms of
a common mental disorder such as depression, anxiety,
panic disorder, phobias, and obsessive compulsive disor-
ders [9]. However, around 1 in 20 people live with a severe
or persistent mental illness or condition such as schizo-
phrenia, bipolar disorder, or personality disorder which
has a significant impact on their day to day lives and func-
tioning [10, 11].
interventions and the approaches to engagement and com-
munication may differ.
The chapter includes the views and experiences of peo-
ple living with mental illness and people with intellectual
disability on their care needs and experiences of accessing
care. It provides guidance on how to improve palliative
care experiences and accessibility to make sure that when
vulnerable people most need care and support, at the end
of their lives, they are able to receive it.
Language and Terminology
There is a wide variety of terminology used to describe
mental ill health including specific conditions such as
schizophrenia, bipolar disorder, depression, anxiety, per-
sonality disorders, phobias, and many more. Umbrella
terms such as severe mental illness [SMI] or common
mental disorders [CMD] are also used to define severity.
Language is emotive and many different views are held
about the terminology used.
For this chapter, the term “people living with mental ill-
ness” has been used, to be more inclusive and to reflect the
fact that it is not the specific diagnosis of an individual psy-
chiatric disorder which leads to marginalisation in pallia-
tive care, but more the stigma surrounding mental illness
as a whole.
In the United Kingdom, the term “learning disability” is
understood and accepted and it should be noted that
“learning difficulty” is different to “learning disability.”
However, internationally the term “intellectual disability”
is widely used and gradually becoming the more recog-
nised term. Within this chapter, we have used the term
intellectual disability.
Across the world, health services are structured differ-
ently, and the extent of mental health and intellectual
disability care systems differs in different countries.
However, the stigma surrounding mental illness and intel-
lectual disability, like the stigma surrounding death and
dying, is universal and the barriers experienced by both
defined populations are common across health systems.
Stigma around Death and Dying
The fear of death and dying is deep seated. The emotions
which arise when we think about our own mortality can
be difficult and lead to an avoidance of discussion about
death. Beliefs about death and dying are often religiously
and culturally anchored and in the UK, the health-care
system has evolved in society where attitudes to death and
dying are quiet, still, and sombre, and largely not dis-
cussed [4, 5].
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Palliative Care for People Living with Mental Illness and People with Intellectual Disabilities 271
For far too long, people of all ages with mental health problems
have been stigmatised and marginalised, all too often experi-
encing an NHS that treats their minds and bodies separately.
Mental health services have been underfunded for decades,
and too many people have received no help at all, leading to
hundreds and thousands of lives put on hold or ruined, and
thousands of tragic and unnecessary deaths.
[21, p. 3]
Stigma and Mental Illness
Stigma towards people with mental illness dates back to
the earliest of records. References to negative stereotypes
of people with mental illnesses are evident in ancient
Greek writings [22]. The separation of the mentally ill,
which is arguably still evident in the commissioning and
provision of mental health services, has long been a feature
in all societies. People with mental illness have been taken
away, locked up and ostracised, with the aim of “protecting
society,” throughout history [23, 24]. Fear of people with
mental illness comes from two places – fear of attack,
which comes from the unusual or distressing beliefs and
behaviours people may experience when acutely mentally
unwell; and the fear of contamination that somehow the
mental illness can be caught, spread, or passed on [25].
Although legislation and clinical practice now focuses on
detaining those who may be a risk to themselves, and for the
minimum period possible, the perceived risk to others is still
a key consideration in the assessment of mental health. While
a small minority of people may pose a risk to others, and
some may pose a risk to themselves at times, the vast majority
of people with mental ill health pose no risk at all [26–28].
Even though contemporary understanding of mental ill
health in clinical practice has evolved a long way from these
early misconceptions, the stigma which surrounds mental
illness continues to be very powerful in health-care settings
and in wider society. This is compounded by portrayals of
mental illness in the media, news, on television and in film.
People with mental illness are portrayed as killers, psycho-
paths, dangerous, and violent. In addition, portrayals also
present people with mental ill health as unable to make
decisions, understand and as vulnerable members of society
who need to have decision-making removed from them.
Experiences in Healthcare
In health-care settings, people who don’t fit into perceived
norms can be difficult for health-care professionals to work
with, especially in busy, pressurised services [28–30].
People living with mental illness sometimes present
In the UK, and in many other health-care systems,
mental health and physical health services have tradition-
ally been commissioned and provided separately. Within
the health-care system, people who have more severe and
persistent mental illnesses are cared for in secondary
mental health services. The mental health system is struc-
tured around community mental health teams: e.g. multi-
disciplinary teams of psychiatrists, psychological therapists,
community psychiatric nurses, occupational therapists,
and social workers as well as other recovery and employment
support services. People are referred via their General
Practitioner [GP] when their mental health needs cannot
be supported in primary care or following an acute
admission to hospital or crisis presentation. During their
journey through the mental health system, people may
receive support in the community as an inpatient, and
access a range of psychological therapies, occupational
therapies, and recovery orientated support services. Many
people spend many years within the mental health system,
and currently, many service users have co-existant physical
health problems, exacerbated by their mental illness and
some of the medications they have been prescribed. In
recent years there has been a national focus on improving
the physical health of people within the mental health
system to address this but has not included a focus on
improving access to palliative care [12–16].
Health Inequalities and Mental Health
Adults living with long-term mental illnesses still die up to
twenty years younger than the general population, which
is one of the biggest health inequalities in the UK [14, 17,
18]. Early mortality in people living with long-term mental
illness is mostly due to preventable causes associated with
other socio-economic disadvantages such as living in
poverty, poor quality housing, poor diet, lower levels of
physical exercise, poorer diet, and higher rates of tobacco,
drug, and alcohol use [15, 19]. Sometimes people living
with mental illness present later with symptoms and may
not feel able to attend routine screening and this can lead
to later diagnosis, and then poorer prognosis, of life-
threatening conditions. In addition, when accessing health
services, people living with mental illness are often subject
to “diagnostic overshadowing,” where physical symptoms
are attributed to mental illness [20]. People with mental
illness report feeling dismissed, ignored, and fobbed off by
health services, not having physical symptoms treated seri-
ously, not finding health services accessible or joined up,
and consequently continue to have poorer health out-
comes [21].
https://t.me/med1917
272 Chapter 19
‘It’sliketheythinkIdon’tknowIam
ill,ortalkingwithmewillmakeme
moreupset.IknowIamdying,andI
cantalkaboutit,itmakesmefeel
bettertotalk–theydon’tneedto
treadoneggshells’
experienced being detained against their will under the
Mental Health Act 2007 [32]. Some people have had experi-
ences of their health-care needs going unmet, ignored, or
have felt fobbed off by services. It is common for physical ill
health to be neglected and symptoms to be missed. For many
people, they have felt misunderstood, not had access to the
right kind of support at the right time with regard to their
mental health needs, and experienced conflict with their
care teams.
The symptoms of some mental health conditions that
can cause people to feel paranoid, suspicious, or mis-
trustful of health-care services have often been exacer-
bated or reinforced by actual experiences. So when a
person with mental ill health becomes unwell with an
incurable physical condition, it can trigger negative past
experiences which make that person less likely to seek or
accept help and support. It might feel difficult to talk
differently to other people, they may show their distress
more, feel more anxious, or seem suspicious of service pro-
viders. When unwell, sometimes people with mental illness
may hold unusual beliefs, especially about death and dying,
medications and medical treatments, and may present with
unusual or different behaviours to other patients. People
may find it hard to organise themselves, attend appoint-
ments and communicate with services. This leads services
and HCP’s to withdraw [7]. HCP’s are subject to the same
media and societal stereotypes and despite receiving anti-
discriminatory practice and mental health awareness
training, may still feel some of the same fears and anxieties
about working with people who may feel very different to
themselves [23, 28, 31]. The stigma and fear about mental
illness continues to be pervasive and persistent.
Many people living with mental illness have had negative
experiences in health care. Sometimes people will have
‘No‐onespoketoanyone–my
CPNdidn’tcontactmy
haematologyteamandno‐one
fromthehospitalcametomy
reviews–Igettreatedlike
differentpartsofabodynotlikea
wholeperson’
‘IwenttotheGPoverandover
again,buttheykeptsayingI
wasjustanxiousandthatIhad
tensioninmyback,eventuallyI
wasdiagnosedwithkidney
cancer’
‘Ijustdon’tfeeltrainedtoknow
whattosayaboutsomeone’s
mentalhealth,Ididn’tgetany
trainingaboutmentalhealthand
feeloutofmydepthtobehonest’
‘Idon’tknowhowtobringup
thatIknowapatientisdying,I
don’twanttoupsetthemwhenI
knowtheyhavefeltsuicidalin
thepast’
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Palliative Care for People Living with Mental Illness and People with Intellectual Disabilities 273
Table 1 Barriers to palliative care.
Barriers to Palliative Care
SYSTEM
Structural Barriers
Silo working
Separation between mental health and physical health
services—gaps between services
Unclear referral pathways
Lack of co-ordination of care
PRACTICE
Stigma and Prejudice
Lack of confidence
Avoidance of the patient
Fear of mental illness
Fear of talking about death and dying
Diagnostic overshadowing
Paternalism and risk averse practice
Lack of understanding of available services and care pathways
[mental health and palliative care]
Lack of clarity of roles and responsibilities
PATIENT
Unusual beliefs or behaviours
Challenging or unusual presentations
Fear of services or negative past experiences in health care
Anxiety about meeting new people
Fear of dying
Isolation and lack of social and family support
Fear of discrimination
Lack of understanding of breadth of palliative care and
services available
Loss of support due to physical health
about the end-of-life with someone who has experienced
suicidal feelings or who experiences very low mood.
HCP’s may be fearful of “getting it wrong” or causing dis-
tress and consequently, avoid difficult conversations but
this can leave the person who is ill feeling abandoned or
avoided.
A Note on Risk
An excessive focus on risk stems from stigma surrounding
mental illness. The perceptions of people with mental ill
health as dangerous or risky to others, or vulnerable and a
risk to themselves, can lead to an avoidance of discussions
between HCP’s and their patients.
Discussions about palliative and end-of-life care, death
and dying, and people with mental ill health often focus on
risk. HCP’s across mental health and palliative care often
feel worried about having conversations about the end-of-
life with people with mental ill health for fear of upsetting
or de-stabilising the person [6, 33–35]. Conversations bet-
ween HCPs regarding advance care planning [ACP] or
involving the person in their own care can become risk-
focused and issues of mental capacity and ability to be
involved are often pre-occupying for professionals. In con-
trast, patients and carers often feel left out of care planning
discussions or experience a feeling of being treated differ-
ently to other people when decisions about care are being
made.
Most people with experience of mental illness have
mental capacity to enable them to take part in care
planning discussions and want to be involved. People
living with mental illness can often feel anxious and being
left out of discussions or not being told information about
their health, prognosis, or treatment and care options can
exacerbate these feelings.
Barriers to Accessing Palliative Care
There are barriers at all levels for people with mental ill
health needing palliative care, both in terms of access and
experience within services. Specialist palliative care pro-
viders, hospital, mental health, primary care, and other
community services all have a role in the provision of pal-
liative care. Barriers exist at three levels as highlighted in
Table 1: (1) at system level, (2) within clinical practice and
(3) with the patient themselves. The barriers are high-
lighted below with quotes from HCP, patient, and carer
research participants.
How Can We Improve Care and Break
down Barriers?
At both an individual or service level, as well as at a system
level, there are ways that everyone involved in the care of
people living with mental illness and an incurable
condition can help reduce these barriers and improve the
experience of accessing a receiving care.
https://t.me/med1917
274 Chapter 19
Individual Level – What Can I Do?
Early Conversations and Referrals/Advance
Care Planning
The benefits of early referral to palliative care are well docu-
mented [37]. For people with mental ill health this is all the
more important because of the multiple disadvantages many
face. They may need more time to build relationships with
new services, but also may benefit even more than the gen-
eral population from some of the interventions within pal-
liative care, before end-of-life such as respite, psychological
support, day hospice, social work advice, and advance care
planning. For the small minority of people with mental ill
health who do receive palliative care, it is often in the last few
days or weeks of life. The intensity of such conversations may
mean that they have to take place in smaller sessions over a
longer period of time. In addition, people may have multiple
agencies involved in their care and it can take time to co-
ordinate the roles and responsibilities of each element.
The key to early referral is helping people understand that
palliative care is not about the very end-of-life and can be
provided throughout an illness trajectory.
Leaning In – Getting Alongside
It is important for health-care professionals [HCPs] in all
settings to be able to see the person before them, rather than
a series of labels and diagnoses. Consider your own fears and
anxieties which arise when meeting a patient who has a mental
illness. What are you worried about? Talk to other HCP’s about
your concerns and share knowledge and expertise.
Use your skills from having other difficult conversations
to have these conversations. Ask the person what they know
about their illness; do they understand the treatment options
available to them? Do they understand what palliative care
is in its widest definition? Do they know what is available
locally in the palliative care system?
Ask how their mental illness affects them. What helps?
What makes it worse? How can symptoms be alleviated?
What might you need to know or look out for? How might
you know if they were to become unwell? Are there other
professionals or services involved in the person’s care that
you need to be in contact with?
If you notice yourself retreating or avoiding ask why?
What is going on and getting in the way of you being along-
side the person and how can you address this? What support
might you need?
Care Co-ordination and Multi-agency
Working/Communication between Services
There may be multiple organisations involved in a person’s
care or they may be very unsupported. People may not
have good relationships with health-care professionals or
family and may have support from other service users or
community organisations. For good palliative and end-of-life
care to be provided, multiple agencies need to be involved.
Care needs to be co-ordinated and agencies will need to
communicate. It may not be obvious who is co-ordinating
care – for some people, their GP might be the best person,
for others their care co-ordinator from their mental health
team might be or for others a community nurse or other
professional from a hospice might take the lead. However, it
is important that all agencies stay involved with the person’s
care as their illness progresses. Hospice teams may need
support from mental health teams and vice versa. Support-
ing the person to maintain contact with other services and
specialisms is important.
Often patient care IT systems do not allow information
sharing across agencies. It is important that agencies and
professionals communicate with each other directly. Multi-
agency meetings, involving the patient, are also essential to
support the delivery of holistic palliative care.
Involving the Person [and those important
to them]
Recent research highlighted how often people living with
mental illness are excluded from conversations about their
care [7, 36]. In contrast, patients and carers were very
clear about wanting to be involved, feeling able to cope
with being involved and that being excluded exacerbated
their anxiety and feeling of isolation rather than feeling
protective.
When working with people with mental illness it is im-
portant to establish early on, who they would like involved
in their care, and as importantly, who they would not like
involved in their care. Many people have very limited social
and family support networks, and may have professionals
or informal care networks who provide day to day sup-
port. Some people may have complex family relationships
and it is important not to make assumptions about who
is and is not involved. A person may have carers who also
have mental health needs of their own and so having open
conversations early on about who the preferred and most
appropriate people to be involved in different aspects of care
is essential.
For example, someone may want their family to be in-
formed about their changing health status if they are not able
to inform them themselves but may want a support worker
to be the person attending health appointments and helping
with advance care planning discussions.
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Palliative Care for People Living with Mental Illness and People with Intellectual Disabilities 275
System Level—What Can We Do?
Each local health-care system is structured differently and dif-
ferent palliative care systems and services are available in dif-
ferent areas. For example, there may be greater involvement of
the voluntary and community sector in some areas, hospice
services differ depending on commissioning arrangements,
there may be community palliative care teams, hospice at
home services, and day hospice provision to differing degrees
across the locality. Similarly mental health services can be
structured in a range of ways and have different referral path-
ways. However, there are things which service providers can
do to improve the care journey for the person living with a
mental illness and requiring palliative and end-of-life care.
Case Study—John’s
1
story
John was a 48-year-old man with a history of schizophrenia.
John had been a mental health service user for more than
twenty years and had a CPN who visited him regularly at
home and was aware of John’s physical health problems but
not involved in his physical health care.
John had presented several times to his GP with symptoms
and queried a prostate problem, but his GP had told him he was
too young to need further screening. After six months and mul-
tiple appointments, John was diagnosed with prostate cancer,
learning that his cancer was incurable from the GP receptionist.
John had a history of moving around, he had lived
overseas and had lived in and out of supported care services
throughout adulthood. He was estranged from his family and
lived alone with his rescue dog in supported housing.
As John’s physical health deteriorated, he experienced an
increase in pain and a reduction in mobility. His Housing
Support Worker helped him to apply for a ground-floor flat,
which was more suitable for his needs, but increased his
isolation. As his health deteriorated, his mental health also
became more difficult for John to cope with. He was unable
to go fishing, in pain, and now living alone in his flat with his
dog who he was struggling to care for. His CPN continued to
monitor his mental health.
John’s Housing Support Worker contacted a local Hospice
and John was referred for an assessment that he was reluctant
to attend. He met with a member of the well-being team
who offered pain management and suggested he attend the
day hospice where John became a regular member of the
Wednesday Social Group. Staff were initially worried about
his schizophrenia diagnosis but as they got to know John,
found him to be a funny and wise member of the group. He
1
Pseudonym used to protect confidentiality of patient.
Discussion Activity
Strategic Commitment—Setting the Tone
System-wide acknowledgement of the need to make services
more inclusive to people living with mental illness, and other
excluded groups, is important. All too often, people living with
mental illness are not even acknowledged as a marginalised or
minority group in strategic or policy level discussions. At a
local level, bringing stakeholders together to set a commitment
for improvement is something that all localities can do.
Training and Education—Winning Hearts
and Minds
Identifying local champions within services who are pas-
sionate about improving services can help to drive improve-
ments forward. Many HCP’s are not aware that people living
with mental illness encounter barriers to accessing palliative
care. In mental health services, there is a need to increase
awareness of the mental health clinician’s role in supporting
access to and delivery of palliative care. In palliative care
services there is a need for greater understanding and higher
levels of confidence among HCPs working with people living
with mental illnesses.
Care Pathways and Service Understand-
ing—Who, How, and When?
Improving knowledge of the local health-care systems is
critical to improving access to services. HCP’s need quick
and easy ways to identify appropriate services for people
living with mental illnesses and incurable conditions. Know-
ing who, how, and when to refer is essential to improving the
dying person’s care journey. A local system map or service
leaflet, highlighting what is available at each stage of a per-
son’s illness is helpful for the dying person, their family, and
health-care professionals.
System-wide, patient held, care plans—
Everyone Knows, Everyone Asks
Adoption of a system-wide, patient held care plan document
which is used across services can support better integrated
care. This can include advance care planning but is a broader
document, which could be held electronically or in paper
form, which includes all the care and services involved with
the patient. If all services, including mental health services,
are aware of the locally adopted document, it can be used
in appointments to ensure that all areas of care have been
considered and each service is aware of who is involved in
that person’s care, avoiding the gaps between services and
improving communication and awareness between services
and empowering the person receiving care.
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276 Chapter 19
Palliative Care and People with
Intellectual Disabilities
Intellectual Disability
The World Health Organisation definition of an intellec-
tual disability is when the following three criteria are pre-
sent: (1) a significantly reduced intellectual ability to
understand new or complex information, (2) to learn and
apply new skills [impaired intelligence] resulting in a
reduced ability to cope independently [impaired social
functioning] and (3) beginning before adulthood, with a
lasting effect on development [38].
The level of daily living support an individual with intel-
lectual disabilities will require is dependent on the degree
of their intellectual disability. There is often a difference in
individual communication skills, concept, and under-
standing of language with variations on the degree of care
and support that a person will need.
There are different types of intellectual disability, and
this can be distinguished by:
• Mild to moderate intellectual disability—The person
may require some level of support with everyday tasks,
learn to develop independence, be employed, live indepen-
dently, and maintain relationships.
• Severe and profound disability—The person is likely to
have severe limitations in capacity, conceptual skills,
understanding, communication skills, and personal care.
They are likely to require a high level of support to meet
their care needs.
Health Concerns for People with
Intellectual Disabilities, Disadvantaged
in Life—and Death?
In the UK, there are more than 1.5 million people with an
intellectual disability [39]. However, with increasing childhood
survival rates, advances in care and an ageing population it is
predicted that the number of people with an intellectual
disability over the age of 60 years will increase, thus more
people living longer with multiple and complex conditions
and an increased need for palliative and end-of-life care.
Study findings suggest that people with intellectual dis-
abilities are at an increased social disadvantage with poor
access to health care, unmet care needs and delayed diag-
nosis of long-term conditions and progressive disease.
People with an intellectual disability often experience
indifferences in equality, poorer health outcomes and
increased rates of significant health issues with a lower life
expectancy than the general population and often dying
preventable deaths [40].
The 2007 Death by Indifference report [41] shared sev-
eral distressing accounts of people with intellectual disabil-
ities who were alleged to be disproportionately affected
and died from unnecessary, premature, and avoidable
deaths. Since then, several independent inquiries and
studies have followed highlighting further investigations
into how and why people with an intellectual disability are
dying younger than the general population, with poor
health-care outcomes and failings in the health-care system
for people with intellectual disabilities.
The Confidential Inquiry into the Premature Deaths of
People with Learning Disabilities [CIPOLD] report [42]
investigated the deaths of people with intellectual disabil-
ities and described distinctive findings regarding avoidable
deaths and failings within the health-care system.
Furthermore, it identified that people with an intellectual
disability were less likely to access specialist palliative care
and the end-of-life care people received was un-coordi-
nated with improvements required for the support that the
dying person and their families receive. Many more reports
have followed including The Care Quality Commission
[2016] thematic review A Different Ending: Addressing
Inequalities in End-of-Life Care [43]. The review identified
and recognised that certain groups of people, including
those with intellectual disabilities, experience inequitable
care at the end-of-life with providers not understanding or
considering their needs.
The learning from deaths of people with a learning
disability [LeDeR] programme was established in 2015 as a
service improvement programme in response to the CIPOLD
recommendations. The programme aimed to learn from and
would often tell stories of his adventures overseas and shared
the stories behind his many tattoos.
As John’s health deteriorated further, the Hospice staff
helped John to plan his future care. He was admitted for
respite to help with symptom control, and during his stay
planned for his dog to be rehomed. No mental health support
was available to John in his final weeks of life and with his
health deteriorating he died in the hospice six weeks later. His
funeral took place, led by the Hospice Chaplain and attended
by many of his day hospice friends and members of staff.
During John’s admission, the Hospice did not contact
his mental health team, his CPN did not visit and was not
informed of his death for over a month.
Questions
● How effective was communication in John’s story? Con-
sider communication with John and between HCP’s and
services.
● How did John benefit from referral to palliative care?
● How could John’s care have been improved? Think about
his care journey from diagnosis to his death.
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Palliative Care for People Living with Mental Illness and People with Intellectual Disabilities 277
Table 2 Intellectual disability impairment level and median
age of death [45].
Impairment Level Median Age of Death
Mild intellectual disability 62
Moderate intellectual disability 63
Severe intellectual disability 57
Profound and multiple intellectual
disability
40
prevent future avoidable premature deaths, supporting local
steering groups to review deaths and identify significant
issues, to improve health outcomes of people with an intel-
lectual disability and reduce discrimination and inequity
people with an intellectual disability experience. The publi-
cation of the 2018 LeDeR annual report [44] reviewed the
findings from 1311 deaths of people with an intellectual
disability who had died between June 2016 and November
2017. It presented the significant indifference in mortality
for someone with an intellectual disability with the findings
once again reporting poor coordination and care for people
with intellectual disabilities, lack of understanding and
awareness of individual needs and delays in care.
The LeDeR review [45] reported the median age of death
for a man with an intellectual disability is just 60 years of age
and 59 years for a woman. In comparison to the general
population, the difference in median age of death between
men with an intellectual disability is 23 years and for women
27 years. Table 2 presents the disparities in mortality age
dependant on the level of impairment the individual has,
with people with a profound or severe intellectual disability
having a much lower life expectancy in comparison to a
person with a mild to moderate intellectual disability.
Barriers Accessing Palliative Care for
People with Intellectual Disabilities
There are a comprehensive range of challenges in deliv-
ering good palliative and end-of-life care for people with
intellectual disabilities. When considering barriers that
people with intellectual disabilities experience accessing
wider health-care services [Table 3] it is essential to
understand the gaps in knowledge and inequalities that
lead to multiple disadvantages at the end-of-life. There
may be access barriers if people are unaware of services,
lack of reasonable adjustments made by the provider, poor
previous experiences within health and social care ser-
vices, structural or institutional barriers, and indirect
biases that often exist within systems. Communication bar-
riers between the individual, caregivers and services can
result in lack of advance care planning opportunities and
late referrals to palliative care.
Reasonable Adjustments
Under the Equality Act 2010 [46] health and social care
services have a legal responsibility to create reasonable
adjustments for people with an intellectual disability.
Reasonable adjustments help to address and reduce health
inequalities people with intellectual disabilities experience,
access health screening programmes, and health services.
Take a moment to consider your
organisation
● How do you communicate with people with an intellectual
disability?
● Is information available in accessible formats?
● Are reasonable adjustments in place for appointments?
● Does your service give priority appointments or allow
extra time for someone with an intellectual disability?
Table 3 Barriers accessing palliative and end-of-life care for
people with intellectual disabilities.
Late Diagnoses or Uncertain Prognostic Indicators
Institutional discrimination
Individual needs not considered or understood by
health-care professionals
Lack of confidence—health-care professionals
Inadequate training and awareness of the needs of people
with intellectual disabilities
Structural barriers and “gatekeepers” of services
Difficulty expressing pain and other symptoms
Poor communication between services and with the
individual
Uncoordinated care
Difficulty navigating appointment booking systems.
Lack of understanding about Accessible Information
Standard
Misconception of palliative care services
Lack of involvement in future care conversations
Silo-working
Assumptions made by health-care professionals
Lack of reasonable adjustments
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