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278 Chapter 19
There are several ways that we can reduce barriers peo-
ple with intellectual disabilities experience, enabling better
access to palliative care services and improving end-of-life
care for people with an intellectual disability and their
caregivers.
Training and Education
Improved awareness of intellectual disabilities for health
care professionals. How does the disease/condition present?
How does the individual person with an intellectual
disability report or describe discomfort, pain, distress, or
other symptoms? What tools can be used to measure pain or
distress?
Accessible Information and Reasonable Adjustments
Consider how people with an intellectual disability access
screening programmes and health care appointments.
What steps can be put in place to improve experiences?
How do we identify how we can adapt services? What
resources are available to support individuals with limited
or non-verbal communication?
Advance Care Planning with People with
Intellectual Disabilities
Recognising when people with intellectual disabilities are
approaching end-of-life can be challenging. For people
with unidentified health needs it can often result in over-
looked opportunities to discuss personal values and prefer-
ences planning for end-of-life care.
Advance care planning is an integral and important
aspect to palliative care, with a series of ongoing discus-
sions and opportunities for people to communicate choices
and wishes, goals, and plans for future care so that personal
preferences can be honoured at end-of-life with people
better involved in their own decisions.
While advance care planning may not be beneficial to
everyone, providing the opportunity to increase civic par-
ticipation in these important conversations and communi-
cate what is important can give individuals a sense of
empowerment and control over their future care. Despite
people with moderate to severe intellectual disabilities
often having more complex communication skills or the
inability to process or understand their prognosis it is still
important to give them and their carers equal opportu-
nities to communicate what matters most to them.
The case studies discussed shortly give examples of such
introductory end-of-life conversations, outside the context
of a medical environment and with people not within their
final year of life. In all case studies, staff involved were
skilled in these conversations but implemented new
approaches to meet individual need, adapting their skills
and using a range of resources to support the conversation.
Case study 2: Advance care planning
conversations with people with a
mild-moderate intellectual disability
Steven
2
is 54 years old and has a moderate intellectual
disability and several physical disabilities. He lives with his
wife who also has a mild intellectual disability and they both
receive a daily care and support package. Steven is involved
with several local advocacy groups and previously engaged in
work focussed on equitable access to health care, reasonable
adjustments and delivering awareness training to health and
social care professionals.
Steven joined a focus group for people with intellectual
disabilities that met to discuss different issues about death
and dying, including advance care planning. During the focus
groups the facilitator used a variety of resources including
easy read information and Books Beyond Words [47]. Steven
was reluctant to participate in the session about advance care
planning and stated that it was an “awful thing to think about”
but wanted to stay and listen to the group discussions. Gradu-
ally, Steven became more engaged in the topic and partici-
pated in conversations, speaking openly about his own wishes
for end-of-life and what matters most to him. By the end of
the session, Steven had documented some of his choices to
share with his wife, support worker, and GP. Following the
focus group Steven has been involved in further advance
care planning workshops, co-led by people with intellectual
2
Pseudonyms used to protect confidentiality.
Case study 1: Applying reasonable adjustments
within a Hospice
In 2017, The Mary Stevens Hospice in the Midlands, UK,
was aware that their services were not accessible for people
with an intellectual disability. The hospice commenced a
programme whereby they invited people with intellectual
disabilities to the hospice to conduct peer reviews and put
recommendations into practice. They ensured staff were
aware of reasonable adjustments for people with intellectual
disabilities and ways in which they could do this. The hospice
published easy read material, including an advance care plan,
created a library of pictorial resources around death, dying
and bereavement, installed accessible signage, created sensory
spaces, and developed education for health-care professionals
that is co-delivered with people with intellectual disabilities.
In addition, the Hospice facilitates regular focus groups and
workshops with people with intellectual disabilities to better
understand the needs and concerns of this group.
https://t.me/med1917
Palliative Care for People Living with Mental Illness and People with Intellectual Disabilities 279
Bereavement Care—Why Is Bereavement
Support Important?
Many people living with mental illness and intellectual dis-
abilities have experienced bereavement. Unresolved losses
can be a contributory factor to mental ill health and dis-
tress many people in mental health services and living with
intellectual disability have experienced multiple losses.
This may make it even harder to think about their own
care needs, should they become physically unwell. People
in both groups are also often carers for people who may
have incurable illnesses and will need access to bereave-
ment support but can sometimes find their psychiatric
diagnosis or intellectual disability is a barrier to accessing
bereavement support.
There may be a role for the care teams involved with the
person to provide bereavement support in this case or
liaise with a bereavement service in some cases.
Bereavement services may be concerned that they are not
equipped to support a person’s mental health needs or
work with people with intellectual disabilities, but with
support from other professionals who know the person
well, can feel reassured that they are not solely responsible
for a person’s care and support and able to provide bereave-
ment services.
Public Health Approaches in palliative
and end-of-life care for people with
intellectual disabilities
In the eighteenth century, to be born into a community was
qualification enough to be part of that community, whatever a
person’s deviation from any sort of social norm. Communities
adapted to people rather than people having to adapt to them.
[49, p. 10]
When considering improvements to palliative care for
marginalised groups, it is important to also look at a whole
community approach, viewing the wider community as an
equal partner to NHS and social care services and this is no
less when working alongside people with intellectual disabil-
ities. Various community development and engagement ini-
tiatives within the UK have enabled people to define their
own needs, building not only the skills within the community
to support people with death, dying, and bereavement but
also community capacity. This approach helps to shift public
attitudes and perceptions, developing a culture where people
have open and honest conversations about their wishes and
choices for end-of-life and supporting one another during
times of ill health and grief. By “working with” rather than
“doing to” a community’s resilience can be strengthened, with
inequalities tackled and challenged together, championing an
equality led approach for palliative and end-of-life care.
The COVID-19 pandemic has highlighted the increased
vulnerabilities, bias, and discrimination for people with
intellectual disabilities. Inequalities have always existed for
this group of people and they will continue to exist. It is up
to everyone working in health and social care settings to
recognise inequity, our role in perpetuating it, and the bar-
riers that people with intellectual disabilities and other
marginalised communities experience. Organisations
Going to the funeral is very important. Once a person has taken
their final journey, you need to decide if you are going to the
funeral or not. It’s a question to think about! That’s if you are
even invited! Sometimes your family or carers decide that you
shouldn’t go to the funeral. That’s wrong. From the family’s per-
spective, they want to protect the person. The problem is, if the
person wants to go to the funeral, but if the parents say no, it’s
very difficult. They don’t have the right to make that decision.
It’s really, really important. Even if the person has severe and
multiple disabilities, they still have feelings and emotions inside.
They may know [that someone has died]. There is a way that
they know. I don’t know how, but they do know it inside.
A person with intellectual disability from the GRASSroots
group [48].
Case Study 3: Involving and including peo-
ple with profound multiple intellectual dis-
abilities in conversations about future care
To m
3
is a 24-year-old man with profound, multiple intellectual
disabilities. He requires 24-hour care and support, and he lives
with his brother who is his carer and Lasting Power of Attorney
for both health/welfare and property/affairs. Tom attends a
day care service twice a week and communicates non-verbally
using limited Makaton signs and blinking. Tom attended a
“What Matters to Me” day, whereby staff introduced conversa-
tions about priorities for end-of-life. Despite Tom’s intellectual
disability and limited communication Tom was supported to
express several wishes that were important to him. These was
documented within Tom’s care plans and shared with his broth-
er and wider multidisciplinary care team who were thankful
that Tom had been included and involved in these discussions.
disabilities, using his story to engage and respond to other
people’s concerns.
It is important that we speak about things that we are
frightened of
Steven—focus group member
3
Pseudonyms used to protect confidentiality.
https://t.me/med1917
280 Chapter 19
Case Study—Using arts-approaches for advance care planning conversations
No Barriers Here [50] is a project co-developed by people with intellectual disabilities who wanted to explore creative ways for
advance care planning conversations. Through arts-approached workshops the group worked with both chapter authors to initiate
conversations with other people with intellectual disabilities.
Conversations during the workshops were facilitated using a creative approach such as collage, textiles, and weaving. The project
ensured reasonable adjustments were in place and provided easy read information and support for people with intellectual disabili-
ties to attend the workshops.
People with intellectual disabilities were supported to think about end-of-life care, values and choice, and personal legacies. They
were encouraged to talk about and share their art with people important to them and who they would want involved in making deci-
sions about their care on their behalf, including health-care professionals, social support workers, and family carers.
“Ifounditvery
difficultatfirstbutas
theweekswenton,I
foundIwasmore
comfortableplanning
fortheendofmylife.”
“IfIamnolongerable
tomakemyown
decisions,Iwouldlike
mysisterandsupport
workertoadvocateon
mybehalf.”
must implement positive change to local and national pol-
icies, to be the difference and reduce disparities in how
people with an intellectual disability live, die, and grieve.
It is vital that importance of excellent and co-ordinated
care in the last hours, days, weeks, and years of life is recog-
nised. People with intellectual disabilities often have little
or no support, with a lack of communication between ser-
vices and frequently do not experience a good death.
Public health, community-led approaches have much to
offer and HCP’s and health-care organisations have a role
to play as partners in these initiatives, advocating for excel-
lence in palliative and bereavement care.
A horizon is where the known and the unknown meet.
Where what can be seen meets with what is perhaps
unknown, and it is individual and collective action that will
enable expansion beyond the current patient population
that traditionally access palliative and end-of-life care. If
services and individuals listen and respond to people’s
needs, make reasonable adjustments, then care improves
for the most vulnerable and for society as a whole.
Covid-19—Opportunities and Threats,
Learning from the Pandemic
The impact of the Covid-19 pandemic has been felt across the
world. In the UK, as in many other countries, the pandemic
has illuminated wider health inequalities. As the pandemic
progressed, data became available which highlighted the dis-
proportionate impact the virus, and surrounding policy, was
having on different groups of people. For people with mental
ill health and intellectual disabilities, fears about the overuse
of Do Not Attempt Cardio-Pulmonary Resuscitation
[DNACPR] instructions emerged early on, delays in avail-
ability of vaccines for different vulnerable groups also
impacted upon people with mental ill health and people with
intellectual disability, in part due to the disproportionate
levels of poor physical health experienced by both groups. In
addition, lockdown measures and physical distancing resulted
in increased isolation and loneliness for people already mar-
ginalised in our communities. For those with mental ill health
or intellectual disabilities and living with long-term condi-
tions, receiving palliative and end-of-life care or bereaved
during the pandemic, the absence of social interaction and
importance of human relationships has resulted in a marked
change and increase in distress, behaviour, and
understanding.
However, the developments in care during the pan-
demic also highlighted the role of palliative care, the
importance of advance care planning, the importance of
HCP’s having the skills to provide and talk about palliative
and end-of-life care and the importance of families and
carers.
https://t.me/med1917
Palliative Care for People Living with Mental Illness and People with Intellectual Disabilities 281
Conclusion
There continues to be persistent and increased health and
socio-economic inequalities for people in the UK living with
mental illness and with an intellectual disability, resulting in
many people disadvantaged not only in life but in death and
grief. However, small changes in practice have big impact.
What makes a difference to people is a change in attitude
and approach. The people and their carers and families who
informed the research in this chapter were asking to be lis-
tened to, to be seen, to be included and to be empowered to
participate in their own care decisions and care planning.
Everyone in health care settings has a role to play in chang-
ing attitudes to people living with mental illness and with
intellectual disabilities, to work together to make sure that
the right support is in place the very end of their lives.
I just needed them to lean in, when I most needed them to lean
in, they stepped back.
[51, p. 260] (John)
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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.
283
20
towards an individualised patient care plan. Individualised
patient care plans for the last days of life are best exempli-
fied by the One Chance to Get it Right report and Nice
Guidance (NG31) [4, 5]. Services should strive to achieve
equitable access to care for all, the maximisation of com-
fort and well-being, the improvement of community
support and the delivery of coordinated care from a caring
and competent workforce [3]. Furthermore, better recog-
nition of palliative care outside of hospital has been esti-
mated to improve care and reduce hospital costs by £180
million per year [6]. Therefore, not only does improving
care of the dying patient improve outcomes for the
individual involved and their family but financial savings
can be passed on to others. NHS England’s End-of-Life
Care Programme aims to increase the percentage of people
recognised as dying so that their needs can be individual-
ised and care can be provided, where possible, in their
preferred setting. The Gold Standards Framework system
goes some way to helping professionals recognise those
approaching the end-of-life and has also been shown to
improve outcomes [7].
The topics covered within this chapter will include:
• how to recognise dying
•
assessing the dying person
• supporting the dying person including symptom control
measures at the end-of-life
• common concerns
• consideration of specific end-of-life scenarios
• care after death and bereavement support.
Many may feel that end-of-life care, once started, has an
inevitability to it that renders our efforts futile however
there is always something that can be done. The therapeutic
power of listening – of sharing the heavy burden that
comes with supporting someone to die peacefully – should
never be underestimated.
Care in the Last Days of Life and
after Death
Nikhil Sanyal and Alistair Duncan
Special thanks to Jenny Booth RGN, Severn Hospice Shrewsbury for her support with pressure
ulcer management.
Good quality end-of-life care is of the utmost importance
and, if delivered well, is rewarding. There is no unified def-
inition of palliative care however the tenets of what consti-
tutes this area of practice are focused on the provision of
holistic care for an individual, and those close to them,
from diagnosis and especially during the last twelve
months of life [1, 2].
The principles underlying the delivery of care in the
last days of life remain constant despite an ever-changing
clinical landscape that includes complicated treatments
and an expanding understanding of diseases and their
processes. Without the appropriate knowledge, approach
and skills navigating end-of-life care can feel over-
whelming to the professionals involved. However, failing
to acknowledge deterioration in a person’s condition and
addressing the dying process does not prevent it from
happening.
Palliative care as a specialty can be considered, at times,
more of an art form than a science and you may find your-
self adapting the advice within this chapter for the context
in which you practice. If patients know that professionals
are comfortable engaging in discussions on the topic of
death, dying, and the end-of-life then they will be empow-
ered to take an active role in planning and voicing their
preferences. Achieving this will transform the patient’s
experience and hugely influence what those left behind
recall of their loved one’s last days.
Individualising end-of-life care was identified as a pri-
mary ambition by the National Palliative and End-of-Life
Care Partnership in their national framework [3]. National
guidance on the care in the last days of life have regularly
been issued and reviewed over the last ten years. These
have included a move away from the Liverpool Care
Pathway which was abolished in 2014 following an
independent review by Baroness Neuberger, and more
https://t.me/med1917
284 Chapter 20
the dying phase of their illness or not is sometimes an
impossibility and can pose one of the most significant bar-
riers to recognising dying [12].
Barriers exist for patients and families as well as profes-
sionals. Some patients may simply not want to acknowl-
edge their deteriorating health or their limited life
expectancy. In extreme cases this denial may prevent
engagement with professionals attempting discussions
relating to any aspect of end-of-life care or future planning.
Rarely is this impassable and facilitating the patient to
speak with a trusted professional can often allow the initial
steps to be taken.
Having an understanding of the traditional patterns of
disease trajectory can sometimes help to shed some light
on the matter although it is important to be mindful of the
limitations to these models (see Figure 1) [13].
It is worth noting that these proposed trajectories do not
take account of those patients who have more than one
pathology or who may experience an acute event for
example a severe infection or a stroke. Similarly, due to the
less predictable nature of organ failure – such as heart
failure or pulmonary fibrosis – opportunities to have
advance care planning conversations are often missed, even
when these diagnoses are understood to be life-limiting
Recognising Dying
Perhaps the most important step in providing good end-
of-life care to patients and their families is the initial one –
that of recognising that a dying process is imminent or is
actually taking place [8]. Acknowledging and taking that
first step is what allows all the other elements to unfold and
follow on.
The recognition of dying allows healthcare professionals
to tailor treatment plans to the patient’s situation. Needless
investigations and interventions can be avoided, and
treatment can be honed. If patients, and those close to the
patient in instances where the patient lacks capacity, are
open to discussing preferences and priorities at the end-of-
life then this can facilitate a personalised approach to
advance care planning to prioritise what is important to
the individual [9].
Identifying the dying process is fraught with difficulty
and uncertainty [8, 10, 11]. Trying to distinguish between
reversible deterioration and inevitable decline at the end-
of-life is a skill which improves with experience and col-
laborative working with the wider multi-disciplinary team
(MDT). To be certain about whether a patient is entering
Proposed Trajectories of Dying
High
Sudden Death
Organ Failure
Terminal Illness
Frailty
Function
Low
High
Function
Low
High
Function
Low
Time Time
Time
Death
Death
Death
Death
Time
High
F
unction
Low
Figure 1 Proposed Trajectories of Dying [13].
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Care in the Last Days of Life and after Death 285
healthcare professionals in all areas of practice should be
equipped with the right skills and language to provide this.
The Government focus on avoidable deaths, while help-
ful, also instils a fear that death is avoidable, which is
unhelpful when most deaths occur despite the best pos-
sible treatment [20]. Of course, we need to learn from our
patients who die. However, by open conversation with
patients and their families about dying we can start identi-
fying important goals for that individual and ensure the
death is an expected death rather than being seen as an
avoidable death [21].
Assessing the Dying Person
Once dying is recognised the next steps involve assessing
that individual and considering the needs that are unique
to them. The dying process may have similarities from one
individual to another but there will be important nuances
to this that mark it out as particular to that person. The
basics of palliative care help to address the processes
common to all patients, but hopefully this section will also
and have limited treatment options. The dying process for
these individuals often manifests as numerous clustered
hospital admissions and many of these patients die in
hospital, possibly because professionals have not recog-
nised that repeat admissions and a decline despite our best
treatment can be an indication of dying.
A number of tools exist to try and aid in the identification
of people who are at risk of dying. Every tool is fallible, but
most contain helpful information that can be taken into
account when making a clinical judgement about prog-
nosis and proximity to death [14]. Some examples of these
tools include:
•
GSF [7]
•
SPICT [15]
•
Karnofsky [16]
•
AMBER care bundle [17]
No one tool can replace the value of assessing a patient and
aligning the facts with the feeling. The tools are best used
as prompts to begin conversations with patients and/or
other professionals and are at their most effective if used
over a number of sessions with a patient to chart a
trajectory.
What Does Dying Look Like?
If we are to recognise dying when we see it then it is impor-
tant to know what this process looks like [18]. Table 1 out-
lines some of the common features of the dying process
and may, like the prognostication tools above, serve as a
prompt to review the patient, their needs, and their current
clinical plan.
Palliative care teams hold the recognition of dying in
mind and often internally prognosticate (and validate with
the MDT) in order to weigh up the active and palliative
interventions that will promote that person’s comfort –
which is a term defined by the individual themselves – and
stop any intervention that no longer contributes towards a
patient’s goals or comfort.
Previously, medical, nursing, and therapy undergrad-
uate training in palliative care has historically been inade-
quate [19]. Other areas of education have often been
prioritised despite death being a possible outcome in all
avenues of medicine and healthcare. This approach is
changing and education focussing on palliative care has
increased. There is also a view that palliative care is focused
on cancer and this is patently untrue. Patients who have
treatment withdrawn, are too unwell for life-saving opera-
tions or who have progressive, degenerative pathology all
deserve to receive high-quality palliative care. Thus,
Table 1 Common signs and symptoms of the dying phase.
Symptom/Sign How This May Manifest
Increasing
tiredness and
fatigue
May spend increasing amounts of time
sleeping/in bed
Less interest in what is happening around
them
Less able to hold a conversation
Physically less
able to do
things
Deterioration in mobility and/or ability to
transfer
Spending increasing amounts of time in
chair/bed
More dependent on others for care needs
Changes in
breathing
Breathing can become irregular and/or
shallow
Breathing can become noisy
Eating and
drinking less
Reducing appetite/interest in food and/or
drink
Swallowing can become more difficult
Likely to struggle with oral medications
Changes in
appearance
Can look tired, pale, grey in colour
Can appear increasingly cachectic
Occasionally peripheries can take on a
mottled appearance
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286 Chapter 20
repeatedly trying new ways and adapting old ways of doing
something you will formulate your own style of assessment
of palliative patients that feels comfortable to you.
Building up a rapport where possible often encourages
the patient to open up about certain things that they might
otherwise have glossed over. As a “keeper of patient’s
secrets” we become privy to intimate knowledge of
strangers in a very short space of time. This is a privilege
but one that cannot be taken for granted.
Assessment of the dying person relies upon taking time
to consider the individual, what is important to them and
ensuring they have had the opportunity for all aspects of
care to be discussed. As suggested by Figure 2, all of these
different domains overlap and affect one another and
assessing them allows us to provide individual, holistic,
high-quality end-of-life care.
Finally, it is important to consider the needs of those
close to the patient; for many this may be trusted people
providing care, partners, friends, and/or family members.
This may involve focusing on their psychological, emo-
tional, and spiritual needs more so than physical needs
however caring for someone at the end of their life is phys-
ically demanding. It may be that frailer patients have frail
carers and it is important to be mindful of the pressure
placed on them. Often, although not universally, those
close to the patient may wish to take care of them and will
attempt to do so unaided and ill equipped through lack of
knowing what support is available. This is a big task which
can be difficult for teams of professionals in specialist inpa-
tient units, to undertake this as a small group of people car-
ing for a loved one is no mean feat and can be overwhelming.
With this in mind sometimes the assessments of the patient
and their carer involve consideration as to how feasible
continuing to care for them in their current residence is.
This can be a hard discussion as many feel that moving
from home to a hospice, for example, is a sign they have
failed but the reality is that sometimes the needs of someone
at the end of their life can become complex and challenging
to manage at home even with maximal support.
Key summary points:
•
Using a structured approach can help with holistic
assessments while building experience/confidence
• Consider physical, psychological, and spiritual/religious
needs
• Remember to focus on the person not the pathology
• Consider the needs of the patient but also their carers/
families
• The holistic assessment also considers how feasible it is
to continue caring for someone in their current locality as
their needs change
serve to help form a comprehensive assessment that leads
to individualised and holistic care.
Holistic care can be broadly defined as care that incor-
porates the patient’s physical, psychological, spiritual, and
social care needs as seen in Figure 2 [22]. By taking into
consideration all aspects of a person, allowing them to
identify their own priorities and highlight the aspects of
their experience that require attention from professionals
is what allows us to call this process individualised [23].
This can be transformative for the patient and the people
important to them.
There will be times where getting a sense of the
individual is harder due to time pressures or emergencies
but in the main there is often time to achieve this over
many interactions rather than in one consultation. In
addition to this, it is important to bear in mind that a per-
son’s priorities change over time. The needs identified dur-
ing an initial assessment shortly after a palliative diagnosis
has been made compared to the needs of the same person
as they approach the end of their life could be very differ-
ent emphasising the need for ongoing assessment. The
assessment is best undertaken over a number of interac-
tions using a multidisciplinary approach with a view to
drawing on the expertise of different disciplines.
Most of us in healthcare have been trained to review
individuals in a systematic way. As such this section aims
to propose a possible approach to assessment (Table 2) but
does not mean to imply there is only one way to do this.
Similarly, as with all structured approaches, through
Spiritual
Social
Physical
Psychological
Figure 2
Components of a holistic assessment.
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Care in the Last Days of Life and after Death 287
Table 2 An example of an approach to holistic assessment.
Holistic Component Points to Consider Covering
Physical issues
Patients approaching the end-of-life often experience
physical symptoms – trying to improve and/or
control these where possible has the potential to
enhance the quality of the time they have left to live.
• Symptoms – pain, nausea, vomiting, anxiety, breathlessness etc.
• Mobility
• Sleep disturbance
• Appetite, nutrition & hydration
• Excretion
• Wounds and skin breakdown
Cultural, spiritual, and religious issues
These can be distinct aspects of care or, for some
individuals, exhibit a degree of overlap. Addressing
this area of care helps to acknowledge the
personhood of the individual, uncover additional
support networks and can make all the difference in
managing someone’s pain, distress, or sense of
isolation.
• Not being able to physically pray
• Not being able to get to place of worship
• Specific religious practices/customs that need to occur
• Perhaps feeling disconnected from God/questioning faith
• Sometimes strong religious beliefs can appear as barriers to treatments
starting or stopping
• Struggle to find a sense of meaning in life
• Difficulty in achieving inner peace
Psychological issues
Illness impacts upon how other people might
perceive and relate to an individual and how the
unwell individual perceives themselves. The
implications are wide reaching and impact upon all
domains of a person’s life.
• Mood disturbance and emotional state
• Existential distress
• Fear of what is coming
• Fear of what is being lost
• Bereavement of the self – mourning the loss of who you feel you were
• Sense of feeling like a burden
Social issues
Social issues are varied and can include anything
from family support to financial advice to
discussions around how to meet a person’s care
needs.
• Relationships and the impact illness can have on this, including
intimacy/sex
• Concern for impact on family/children
• Impact of ill-health on ability to provide and impact on finances
• Provision of care
• Place of care and place of death
Supporting the Dying Person
Having recognised the dying process and assessed the
situation the focus moves onto how to support the dying
person in their last days of life. By paying particular
attention to physical needs (e.g. symptom control, review-
ing medication and skin care), psychological needs (e.g.
developing conversations around death/dying and advance
care planning) and social needs (e.g. care packages, family
support) the situation is approached in a holistic manner.
Physical
The management of physical symptoms is an important
aspect of care. Many patients fear a painful or uncomfort-
able death making symptom control through the dying
phase a shared goal between the patient and the HCPs
delivering care. This concern is emphasised by studies
which highlighted that over 50% of patients with a pallia-
tive diagnosis either malignant or non-malignant experi-
enced pain [24, 25]. Physically the needs of patients will be
unique to them however common themes to most patients
involve us addressing current symptoms, appraising the
effect of current medications and anticipating future
problems.
A non-exhaustive list of symptoms commonly experi-
enced in the last 48 hours of life, and the anticipatory med-
ications frequently used to alleviate these symptoms, can
be found in Table 3.
Given the prevalence of these symptoms in the last days
of life good practice in palliative care often involves antici-
patory prescribing. An example of the medicines used and
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