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228 Chapter 15
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palliative care: development and pilot study of a ‘Directory’
of life-limiting conditions. BMC Palliative Care 12 (1): 43.
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care needs. 2nd edition. https://www.togetherforshortlives.
org.uk/resource/perinatal-pathway-babies-palliative-care-
needs (accessed 19 April 2021).
8.
Fraser, L.K. and Parslow, R. (2018). Children with life-
limiting conditions in paediatric intensive care units: a
national cohort, data linkage study. Archives of Disease in
Childhood 103: 540–547.
9.
NICE (2016). End of life care for infants, children and young
people with life-limiting conditions: planning and management.
https://www.nice.org.uk/guidance/ng61/resources/end-of-life-
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RCPCH (2012). Bringing networks to life – an RCPCH guide
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12.
Together for Short Lives. A more equitable and sustainable
approach to statutory funding in England. https://www.
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for-children/policy-advocacy/statutory-funding-in-england
(accessed 25 April 2021).
13.
National Palliative and End of Life Care Partnership. Ambitions
for palliative and end of life care. A national framework for
local action 2015–2020. www.endoflifecareambitions.org.uk
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14.
Mulhern, R.K., Lauer, M.E., and Hoffmann, R.G. (1983).
Death of a child at home or in the hospital: subsequent
psychological adjustment of the family. Pediatrics 71 (5):
743–747.
15. Lauer, M.E., Mulhern, R.K., Schell, M.J. et al. (1989). Long-
term follow-up of parental adjustment following a child’s
death at home or hospital. Cancer 63 (5): 988–994.
16. Chambers, L. (2015). Stepping up: a guide to developing a
good transition to adulthood for young people with life-
limiting and life-threatening conditions. https://www.
togetherforshortlives.org.uk/resource/transition-adult-
services-pathway (accessed 25 April 2021).
17. Office of the Public Guardian. SD4 how to be a health and
welfare deputy (web version).www.gov.uk/government/
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When we take the time and energy to do this, we replenish
our emotional reserves to not only continue to care for
children and their families, but also protect against our
own emotional burnout.
Relationships within the palliative care team are crucial
to staff support and well-being. Maintaining professional
boundaries is often challenging as situations are stressful
and highly emotional and altruism is strong amongst staff.
Strong, effective and open communication within the team
fosters a trusting platform where potential issues can be
highlighted and addressed early. Clear working protocols
and procedures for a team sets out expectations for fam-
ilies and staff and minimises the risk of overstepping
boundaries. Debriefing together as a team provides the
opportunity to learn collectively and see how families give
back positively, and how these experiences can be used to
build on knowledge, resilience, and team capacity. Some
teams have also found it beneficial to have regular or ad
hoc clinical supervision either individually or as a group
with chaplaincy or psychology facilitation.
Summary
Children with life-limiting conditions requiring palliative
care are a very different population compared to adult recip-
ients of palliative care. Different in terms of their spectrum of
diagnoses, setting in families with siblings and different com-
munication needs. However, the tenets of holistic care, com-
passionate and honest conversations and careful symptom
control management apply to patients of all ages. Children
and families appreciate care and support given by those with
whom they have long-standing relationships. This chapter
seeks to support those offering this care and also includes
some sources of further information in the references.
References
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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.
230
16
While the onset of frailty can be before the age of 65 years,
not all adults develop frailty, even at advanced ages [3]. In
high income countries, the overall prevalence of frailty for
people 65 years and older is approximately 10%, with
25%–50% prevalence for those over 85 years [5, 6]. Frailty
is progressive and typically erodes functional, cognitive,
and/or emotional reserves [7]. While severe frailty is easier
to diagnose, lesser degrees of frailty may be difficult to dif-
ferentiate from normal ageing [7]. Furthermore, individ-
uals can fluctuate between states of severity of frailty [8].
As frailty progresses, there is an increased symptom
burden and reduced quality of life [9]. This includes higher
risk of falls, delirium, disability, mortality, and use of
hospital services [10, 11]. Frailty is multi-dimensional [4],
with a variety of measurement tools [5, 12]. Most tools
were developed in western countries, highlighting the
need to consider diversity and cross-cultural studies in
models and tool development [12]. Two widely used frailty
dimensions are the phenotype and the cumulative deficit
model [4].
Phenotype: conceptualises frailty as a biological syndrome
[10], suggesting that a person is frail if they present
with three or more of five criteria such as exhaustion,
weight loss, weakness/loss of muscular strength,
reduced gait speed, and reduced energy/physical
activity [10]. Scores range from robust, pre-frail or
frail [10].
Cumulative Deficit Frailty: is concerned with health
deficits accumulation assessed through, for
example, The Frailty Index (FI) contains 36 or
more deficits, to give a score between no frailty
and extreme frailty [11]. As deficits accumulate,
people become increasingly vulnerable to adverse
Frailty, Dementia and
Multi-Morbidity
Sarah Russell
Introduction
The palliative and end-of-life care needs of people living
and dying with frailty, dementia, and multi-morbidity is a
global issue, because of the rising incidence, prevalence,
and mortality of chronic illness, an ageing population and
increased multi-morbidity [1]. By 2040, healthcare sys-
tems will need to adapt and adjust to the higher need for
palliative care because of age-related growth in deaths
from chronic illness [1]. This is pertinent as despite evi-
dence of the benefits of early palliative care; referral and
access to services remains limited, for the non-cancer
population [2].
In this chapter, some of the palliative and end-of-life
care needs of people living with frailty, dementia, and/or
multi-morbidity is described. There are two underpinning
principles. First, attention should be paid to the specific
needs of people living and dying with these conditions.
Second, provision should be made for early, focussed, tai-
lored integrated approaches to the assessment and support
of the needs of people living and dying with frailty,
dementia, and/or multi-morbidity.
Frailty
Frailty is a health state in which people experience an
accelerated decline in physiological reserve leaving them
less resilient to relatively minor stressor events [3]. While
all adults are at risk of developing frailty:
risk levels are substantially higher among those with
comorbidities, low socioeconomic position, poor diet, and
sedentary lifestyles. [4 p.1365]
https://t.me/med1917
Frailty, Dementia and Multi-Morbidity 231
Table 1 Palliative care needs and outcomes in frailty.
Physical Pain, shortness of breath, drowsiness, weakness, fatigue, loss of appetite, pressure ulcers, insomnia.
Psychosocial Emotional distress (sustained, intense, progressive, and not related to acute concurrent conditions),
psychological burden (anxiety, low mood confusion, and loneliness), low perceived social support, low levels
of hope, desire for death, losses of dignity, suffering, hopelessness and dissatisfaction, anxiety, depression,
and loss of wellbeing towards the end-of-life, recognising nearing the end-of-life, without a specific
life-threatening diagnosis.
Function Decreased function, dependence for assistance with bathing, eating, mobility, and continence especially
when cognitively impaired and at the end-of-life.
Place of Death
and Preferences
for Care
Variation depending upon internationally different healthcare systems, with increased hospitalisation in
some systems and in others more likely to die in nursing home or own home. Preferences for treatment or
treatment intensity also mixed, more likely to express a preference for reduced treatment or interventions at
the end-of-life, however these preferences are not always observed at critical phases of care.
Satisfaction and
Access to Care
Lower satisfaction with care and less likely to access palliative care.
Advance care planning rates for frail, older people are low.
A recent systematic review reported:
although 74%–84% of capacitous older inpatients are
receptive to ACP, rates of ACP are 0%–5% [16 p. 164].
Furthermore, since fluctuating function and frequent
acute illness episodes affects the stability of choice-mak-
ing, it important to understand the individual context of
wishes and decisions such as family support, long term
goals, recovery from illness, and changes in health aware-
ness [1, 17, 18]. Other commentators point out the impor-
tance of re-conceptualising advance care planning to
include current and future care, with emphasis on the sig-
nificance of relational decision-making, family relation-
ships, and engagement [19, 20]. Moreover, there can be
differences in attitudes towards dying and talking about
death between frail patients and those with cancer or organ
failure, in part related to the unpredictability of death and
dying in frailty [21].
Frailty is characterised by a slow and gradual decline
interspersed with crises or episodes of rapid deterioration
[22] which makes it difficult to identify when someone is
entering the final twelve
months of their life [23].
Furthermore, the dying trajectory is characterised by high
levels of disability in the last year of life [24]. This uncer-
tain prognostication landscape emphasises the need for
specific assessments and services tailored to patient and
family needs and end-of-life preferences [5]. Frailty
approaches can be helpful to focus care, as “framing
outcomes [12, 13]. An electronic version of this
(the eFI) is used in the UK in primary care for
patients aged 65 years and over in order to identify
patients at risk of severe frailty and therefore
requiring for example, an annual medicines review
and falls assessment see: https://www.england.nhs.
uk/ourwork/clinical-policy/older-people/fraility/efi
A measure recommended by the British Geriatrics
Society is the Comprehensive Geriatric Assessment
(CGA):
a multi‐dimensional diagnostic and therapeutic process
that is focused on determining a frail older person’s med-
ical, functional, mental, and social capabilities and limita-
tions with the goal of ensuring that problems are identified,
quantified, and managed appropriately. [14 p. 6]
Widely used to summarise a CGA, the Rockwood clinical
frailty scale is also often utilised and includes seven levels
from “very fit to severely frail” with additional two addi-
tional levels of eight “very severely frail” and nine “termi-
nally ill” [15].
Frailty, Palliative and End-of-Life Care
There are few targeted frailty and end-of-life care specialist
services, despite people with people with frailty requiring
levels of palliative care similar to those living with cancer
[5] (Table 1).
Drawn from [5]
https://t.me/med1917
232 Chapter 16
Dementia, Palliative and
End-of-Life Care
Optimal palliative care should be provided across all stages
of dementia, however the end-of-life care period for those
living with dementia can be difficult to define [36]. People
with dementia may live with the progressive, life-limiting
disease for years, with their last year, months, or weeks of
life difficult to predict. There is a lack of studies regarding
the needs and care of those with early-stage or moderate
dementia who may be dying from other life-limiting dis-
eases or co-morbidities [37]. In addition, different profiles
of symptoms and carer experiences, of those dying from
advanced dementia, or in people with young onset and
rapidly progressive dementias, highlight the need not to
treat all dementias the same [37].
There is an inconsistency in the use of dementia and
end-of life assessment tools, with a predominance of single
measure tools which focus on cognition or function which
fail to recognise the complexities and individual unmet
needs relevant to dementia and end-of-life [33]. Many of
the assessment tools are designed to measure dementia
severity rather than palliative and end-of-life needs, raising
questions about their use in the end-of-life context [33].
More dementia specific assessment tools such as the
Integrated Palliative Care Outcome Scale for Dementia
(IPOS-Dem) are helpful. IPOS-Dem is a proxy-reported
outcome measure allowing comprehensive and specific
assessment of symptoms and concerns experienced by peo-
ple with dementia [14]. There is evidence that IPOS-Dem
improves aspects of caring quality for people with dementia
as it takes a person-centred approach asking about the per-
son’s most important concerns, and then assessing symp-
toms and unmet needs, to enable carers and nonclinical
staff to identify needs, plan, and improve care [14, 37].
While end-of-life care in dementia can be complicated
by its potentially long and unpredictable trajectory [33],
people with dementia may never reach its advanced stages
and can die from other causes earlier in the trajectory [38].
This is relevant as the dementia trajectory is variable with
progressive decline, punctuated by acute events such as an
infection, falls, and hospital admissions, where the person
may recover or experience an increased rate of decline in
health until the end-of-life [39]. A 2021 study reported that
only one third of people with dementia were recognised as
having palliative care needs in the last year of life [40].
Furthermore, identification of palliative care needs before
the last 90 days was associated with a lower risk of having
multiple non-elective admissions to hospital [40].
discussions in the context of degree of frailty provides a
unifying concept” [13 p. 171], rather than concentrating
on diagnosing dying or biological age alone. Rajabali et al.
[25] argue that recognition of an individual’s frailty status
informs treatment decisions, goals of care, and recovery
expectations.
Considering the relationship between frailty, chronic
disease, and palliative care needs is useful. For example,
clinical frailty scales (rather than diagnosing dying) have
been used to trigger palliative care referral in intensive
care units, chronic respiratory disease, and end-stage
renal disease [26–28]. Amblàs-Novellas [29] also advo-
cates a needs-based care provision (rather than diagnosis
or prognosis) commentating:
a progressive approach, then, in which palliative care is
provided as long as patients’ needs evolve. [29 p.190]
Dementia
The palliative and end-of-life care needs of people living
and dying with dementia is significant. Globally,
dementia affects 50 million people worldwide with an
estimated increase to 152
million by 2050 [30]. In
England and Wales, by 2040, deaths from dementia are
projected to rise from 59,199 to 219,409 per year [1].
Dementia is often associated with older people, but it is
not a normal part of ageing [31]. It is the fourth cause of
major disability among people aged 75 and older [32],
and its relationship with multi-morbidity (including
frailty) in older people should not be discounted [31].
One of the significant challenges is that dementia is not
always considered to be life limiting in practice, leading
to lack of (and referral to) specialised palliative and end-
of-life care services [31].
Dementia encompasses a range of disorders for example,
Alzheimer’s, vascular dementia, and dementia with Lewy
bodies which affect the cognitive (and other) functions of
the brain and is a complex biopsychosocial constellation of
progressive, neurodegenerative symptoms [33]. Dementia
is ultimately fatal and is characterised by profound
cognitive impairment, inability to communicate verbally,
and complete functional dependence [34]. While dementia
is an organic, progressive neurodegenerative disorder,
Kitwood [35] points out that people exist in a social,
relational context, and that positive and enriching inter-
personal relationships can prevent the disabling effects of
dementia and promote a sense of well-being.
https://t.me/med1917
Frailty, Dementia and Multi-Morbidity 233
There are specific palliative and end-of-life care needs
for people (and their families) living and dying with
dementia (Table 2), which is helpful for services and prac-
titioners to consider.
Advance Care Planning and Dementia
Advance care planning is often instigated late in the
dementia disease trajectory [41], despite evidence that it
reduces aggressive or burdensome disease orientated
treatments [36, 37]. Challenges include the fluctuating
capacity of the person with dementia their ability to retain
information, weigh up concerns, make judgements as well
as difficulty in imagining and articulating their future
wishes and decisions [41]. Family carers may not always
be able to accurately predict preferences and choices [41]
and practitioners may lack confidence in starting conver-
sations due to lack of knowledge of disease progression
and the communication needs of a person with dementia
[42]. Chapter 7 (Conversations and Communication)
suggests some communication recommendations and
early advance care planning conversations are advised.
In 2014, Van der Steen and colleagues [36] published a
white paper defining optimal palliative care in older peo-
ple with dementia. Eleven key principles underpin the
document illustrating that patients and families may need
palliative care specific to dementia (Box 1) and services
should be designed around these principles.
Table 2 Symptom control considerations.
Pain
Underdiagnosed and assessed
by professionals [43]
Consider observational pain assessment tools
e.g. Abbey, ADD, CNPI, DS-DAT, DOLO-Plus
2, EPCA, MOBID2, NOPPAIN, PACSLAC,
PAINAD, PADE, and PAINE [44]
Consider polypharmacy, drug interactions,
renal, and hepatic insufficiency [45]
High prevalence with multiple
causes such as
musculoskeletal,
gastrointestinal, cardiac
conditions, genitourinary
infections, wounds, oral facial,
and pressure ulcers [46]
Abbey Pain Scale and DOLO-Plus2 valuable to
assist in the assessment of pain for people who
are unable to clearly articulate their needs.
Other tools for the assessment of distress
(where distress may be a manifestation of
pain) include “DS-DAT”, however individual
judgement and assessment is important [47]
Consider non-pharmacological interventions
e.g. music therapy, reflexology, tailored pain
intervention, painting, and singing, personal
assistive robot, cognitive-behavioural therapy,
play activity, and person-centred environment
programme [48]
The location of the
neuropathology may affect
the sensation and experience
of pain [46]
May be difficult to convey or assess due to
communication problems due to cognitive
decline [46]
Consider consent issues for assessment,
management, and prescribing.
Breathlessness Agitation
Often associated with co-morbidity [49]
Use usual assessment tools and management
Restlessness, pacing, shouting, and verbal or
physical aggression; it is complex and
multifactorial with a range of biological,
psychological, and social causes. It may be a
direct result of neurodegeneration, affecting
brain circuits that control behaviour, and also an
expression of unmet needs (e.g., pain or thirst,
lack of communication or comfort) [37, 43, 49]
(Continued)
Box 1: Principles of Optimal palliative care
in dementia [36].
1) Applicability of palliative care
2) Person-centred care, communication, and shared
decision-making
3) Setting care goals and advance planning
4) Continuity of care
5) Prognostication and timely recognition of dying
6) Avoiding overly aggressive, burdensome, or futile
treatment
7)
Optimal treatment of symptoms and providing
comfort
8) Psychosocial and spiritual support
9) Family care and involvement
10) Education of the healthcare team
11) Societal and ethical issues
https://t.me/med1917
234 Chapter 16
Changing Behaviours
Waking during the night, or sleeping excessively during the day [43] Identify usual behaviours, changes, possible
causes of changed behaviour.
Infection and Delirium
Consider urinary tract
infections and pneumonia [43]
Do not confuse with dementia, however acute
delirium may develop in an individual with
pre-existing cognitive impairment [45]
Consider PINCHME Mnemonic (Pain,
Infection, Constipation, Hydration, Medication,
Environment) and that hypoactive (drowsy)
delirium maybe conflated with signs of dying.
Often complicated by other
behavioural manifestations [50]
Consider Confusion Assessment Method
(CAM) e.g., three of the following four
possible features: (1) acute onset and
fluctuating (2) inattention plus either (3)
disorganised thinking or (4) altered level of
consciousness [45]
Assess for hypo and hyper delirium. Avoid use of
Haloperidol, Olanzapine, Risperidone,
Quetiapine in Parkinson’s Disease and in Lewy
Body Dementia [45]
Nutrition and Hydration
In early stages an individual may forget to eat and drink and experience changes
in perceptions of food, including altered taste and smell. As dementia develops,
apraxia, dysphagia, or a lack of attention might make it difficult for the person to
feed themselves. May find it difficult to recognize food, or does not feel hungry.
Associated problems include aspiration, pneumonia, weight loss, malnutrition,
and dehydration [51]
Presence of dysphagia and associated risk of
aspiration are indicators that prognosis is limited
and should trigger a discussion of treatment
goals in this context [51, 52]
Consider the goal of care, the communication difficulties of the person with
dementia, communication with family members, early advance care planning,
strain on carers and practitioners in helping someone to eat while they may
choke, other ways to provide texture and taste to a dying person [51]
The use of artificial nutrition and hydration
should be carefully considered [52]
Skin Care
Increased risk of pressure ulcers and damage [43]
Continence
Higher prevalence of bowel and bladder incontinence [53] Consider medications, dietary tolerance,
comfort, dignity, and exercise
Depression
Increased risk of and should be carefully assessed [43]
Carer Burden Dementia Grief
Concerns over being a “burden” to relatives and high levels of carer burden [54] Specific type of anticipatory grief in response to
compounded serial losses of varying magnitude
and marked by the ambiguity that characterize
the experiences of loss in dementia [55]
Increased emergency department visits
Common clinical reasons include infection, injury, and respiratory problems.
High-strength evidence that ethnic minority groups, greater number of
comorbidities, neuropsychiatric symptoms, living in more rural areas, and
previous hospital transfers are associated with increased attendance [56]
Patients admitted with a Clinical Frailty Score of
7–9 have an inpatient mortality rate of 11–31%,
readmission rates of 10–14% and a one-year
mortality rate of 50% [57]
Table 2
(Continued)
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Frailty, Dementia and Multi-Morbidity 235
Table 3 Useful palliative and end-of-life care resources in dementia.
North West Coast Strategic Clinical Network, Palliative Care Guidelines in Dementia 2nd Edition Version 3.9 – March 2018
(accessed 18/09/2021)
https://www.england.nhs.uk/north/wpcontent/uploads/sites/5/2018/06/palliative-care-guidelines-in-dementia.pdf
NHS Scotland, Healthcare Improvement Scotland: Scottish Palliative Care Guidelines https://www.palliativecareguidelines.scot.
nhs.uk/guidelines/pain/pain-assessment-cognitive-impairment.aspx
(accessed 18/09/2021)
Irish Hospice Foundation: Guidance Documents to Improve Palliative Care for People with Dementia
https://hospicefoundation.ie/other/ihf-launch-seven-guidance-documents-improve-palliative-care-people-dementia (accessed
18/09/2021)
Alzheimer’s Society, End-of-Life Care for a person with dementia
https://www.alzheimers.org.uk/get-support/help-dementia-care/end-life-care-dementia (accessed 18/09/2021)
Dementia UK Advice Leaflets
https://www.dementiauk.org/our-advice-leaflets (accessed 18/09/2021)
British Geriatrics Society End-of-Life Care in Dementia in Frailty and End-of-Life Resource Series https://www.bgs.org.uk/
resources/resource-series/end-of-life-care-in-frailty (accessed 18/09/2021).
NHS England: My Future Wishes, Advance Care Planning for people with demean in all care settings https://www.england.nhs.uk/
publication/my-future-wishes-advance-care-planning-acp-for-people-with-dementia-in-all-care-settings (accessed 18/09/2021)
NICE Decision Aid: Enteral (tube) feeding for people living with severe dementia
https://www.nice.org.uk/guidance/ng97/resources/enteral-tube-feeding-for-people-living-with-severe-dementia-patient-decision-
aid-pdf-4852697007 (accessed 18/09/2021)
UCL and Marie Curie Palliative Care Research Department: Supporting family carers of people living with dementia to make
difficult decisions during COVID-19
https://www.ucl.ac.uk/psychiatry/sites/psychiatry/files/endemic_decision_aid_26_08_20_v.2.pdf (accessed 18/09/2021)
UCL and Marie Curie Palliative Care Research Department: Rules of Thumb for End-of-Life Care for People with Dementia.
https://www.ucl.ac.uk/psychiatry/sites/psychiatry/files/rules_of_thumb_davies_iliffec.pdf (accessed 15/10/2021)
UCL and Marie Curie Palliative Care Research Department: The Compassion Intervention Manual: A model of enhanced
integrated care for people with advanced dementia. https://www.ucl.ac.uk/psychiatry/sites/psychiatry/files/the-compassion-
intervention-manual.pdf (accessed 18/09/2021)
UCL and Marie Curie Palliative Care Research Department: Caring for family or friends with dementia: Could these feelings be
grief? https://www.ucl.ac.uk/psychiatry/research/marie-curie-palliative-care-research-department/research/centre-dementia-
palliative-care-23 (accessed 18/09/2021)
Family Carers
The needs of family or informal carers of those living
and dying with dementia should not be underestimated,
including the transition stages when the person with
dementia moves from one stable period/state to another
[58]. Recent studies report that informal carers experi-
ence physical, emotional, and economic stressors, and
are likely to experience mental and physical disability
themselves and have higher risk of mortality compared
to carers of patients with other types of chronic illness
[59]. Furthermore, support for informal carers as “co-
workers” in supporting patients (to ensure they have the
information, skills, and equipment for this role) as well
as “clients” in their own right (to preserve their own
wellbeing and health) is essential [60]. Research using
the Carer Support Needs Assessment Tool (CSNAT) for
family carers in dementia looks promising enabling
family carer and the service provider to discuss support
needs and strategies to address them [61]. Table 3 pro-
vides some useful palliative and end-of-life resources.
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236 Chapter 16
prescribing. The risk, benefits and possible harm or burden
of prescribed medications must be assessed as should the
medications used beyond licence, by routes that are effec-
tive but unlicensed. Practitioners should consider renal
and liver function, route of administration and interaction
with specific conditions and other drugs. National,
regional, local, and organisational policies will provide
specific advice.
People living with frailty, dementia and multi-morbidity
are often subject to poly pharmacy with subsequent poten-
tial harm, with serious adverse events including, falls,
cognitive impairment, functional decline, hospitalisation,
length of stay, and death [71]. There is further evidence
that older people approaching end-of-life are among the
greatest consumers of prescription medications [72].
Deprescribing involves a stepwise, patient-centred process
that reduces the risks and burden of taking multiple medi-
cations [73]. It reduces adverse events, reduced tablet
burden, prioritisation of the most essential medications,
reduced costs and, most importantly, enhanced quality of
life [73]. Curtin et al. [72] advocate the use of the
STOPPFrail list of potentially inappropriate prescribing
indicators, advocating that symptom control is the priority
rather than prevention of illness progression. All depre-
scribing (reducing or stopping) needs to be individualised
to each patient.
Case Study: Thinking ahead to
End-of-Life
Mabel (pseudonym) is a 97-year-old grandmother, living
with her husband (Ed) in their own home. She has been
living with dementia and renal failure for 9 years and type
2 diabetes for over 40 years. Recently she has had several
falls at home resulting in a hospital admission and surgery
for a fracture of her right neck of femur. In the immediate
post-operative period she was confused, distressed, and
agitated. Her Estimated Glomerular Filtration Rate (eGFR)
is below 50, her C-reactive protein (CRP) is very high, her
diabetic control is poor and she has signs of a hospital
acquired pneumonia. An assessment of Mabel with her,
and her husband using IPOS-Dem reveals that Mabel no
longer goes out of the house, sleeps most of the time in the
day, is restless and walks around the house at night, she
eats and drinks very little, falls or stumbles every day, and
they do not monitor her diabetes. Her husband also reports
that she is having more difficulty finding the right words
and he often finds her sitting in the bathroom trying to put
on her clothes. He is mentally and physically exhausted but
Multi-morbidity, Palliative and End-of-
Life Care
Multi-morbidity is defined as where two or more chronic
conditions co-exist [62]. A study in Scotland reported that by
2040 people dying from multiple chronic progressive diseases
across different disease groups will rise by 60%, accounting
for nearly half of all palliative care deaths [63]. Earlier in this
chapter some of the palliative and end-of-life care needs for
people living with frailty and dementia have been described.
Some of that population live with multi-morbidity indicating
the importance of assessing each morbidity separately as well
as together. This is relevant as recent studies report that a
significant amount of people with frailty also present with
multi-morbidity [4].
Melis and colleagues [64] report that baseline chronic
multi-morbidity is significantly associated to accelerated
decline in daily functioning but not in cognition in dementia
patients. Oosterveld et al. [65] argue that physical health and
Alzheimer’s Disease manifestation are associated, emphasising
the importance of adequate assessment of co-morbid medical
conditions and frailty in patients with Alzheimer’s Disease.
Other indications of the relationship of multi-morbidity on
dementia include the acceleration of cognitive decline and
type 2 diabetes [66], the significant association of cerebrovas-
cular disease, chronic kidney disease, and diabetes with
dementia [67]. There are also strong correlations between
multi-morbidity and dementia with adverse health outcomes
as well as a proxy for loss of independent living [68].
One of the challenges is that the population of older peo-
ple with multi-morbidity has not been routinely recognised
as having specialist (and considerable) palliative care needs
[69]. This population can have poorly controlled symptoms,
functional dependence, poor quality of life and distressed
caregivers, but a prolonged life expectancy [70]. Nicholson
et al. [69] argue that older people with progressive long-term
conditions may have different palliative care needs com-
pared to young people with malignancy and suggest that
more work is needed to understand whether there are
specific palliative care symptom clusters, which are com-
monly associated with older people with multi-morbidity, in
order to determine the response to need.
Prescribing and Deprescribing in Frailty,
Dementia and Multi-Morbidity
Safe, effective prescribing at the end-of-life for people with
frailty, dementia, and multi-morbidity means paying close
attention to polypharmacy, co-morbidities, and the goal of
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Frailty, Dementia and Multi-Morbidity 237
wants for her to return home for “whatever time we have
together”.
What are the considerations? For example:
1.
Full assessment of their psychological, emotional,
physical, social, and spiritual needs.
2.
Invite a conversation about future end-of-life prefer-
ences (advance care planning) and what is most important
to them now and in the future.
3.
Check if any advance care planning has already taken place
for example, Lasting Power of Attorney, Advance Decision to
Refuse Treatment, decision about cardiopul
monary
resuscitation.
4. Review medications and consider renal function –
deprescribe if necessary.
5.
Discuss and review with Mabel and Ed what their
expectations and assumptions are about what support and
help they need at home.
6.
Coordinate with multi-professional colleagues both
within and outside of the hospital setting to maximise
Mabel’s physical function and her independence and emo-
tional wellbeing for example, equipment, package of care,
community nurses, and/or specialist palliative/hospice
care referral.
7. Discuss the “what if’s” and “what next” of when
Mabel deteriorates at home – would she come back into
hospital, what would a Community and Hospital
Treatment Escalation Plan (a document for healthcare
practitioners to communicate urgent treatment
decisions) contain?
8.
Consider if anticipatory “Just in Case” medications
(drugs for symptom control to be administered in the
community) are necessary on discharge home.
9.
Ensure all of the above is communicate to community
colleagues using the local policy and procedures.
Practice and Service Models for People
Living and Dying with Frailty, Dementia
and Multi-Morbidities
Service models will need to adapt to the needs of people
living and dying with frailty, dementia, and multi-morbid-
ity, bringing together the knowledge, skills, and tools from
a variety of multidisciplinary teams and settings. For
example, if living and dying well is a priority for our
population, then palliative care and geriatric practice have
much to offer each other [74]. Both include person-cen-
tred care, education, and a multi-professional workforce.
While it is pertinent to be alert to subtle differences so that
we do not impose a model of palliative care developed for
cancer onto the care of frail older people [75], a 2019
review concluded that both Integrated Geriatric Care or
Palliative Care were effective in improving end-of-life for
older people [9]. Different specialities need to adjust to dif-
ferent ways of working together (integration) based upon
the complex needs of patients across a longer (and maybe
uncertain) time continuum.
Short-term Integrated Palliative and Supportive Care
(SIPS) [76] point out the value of episodic involvement of
specialist palliative care for patients with non-malignant
conditions. Involvement may be for complex symptoms
(including emotional distress), discussing the future,
increased healthcare utilisation and unmet carer needs
[76]. Furthermore, person-centred care should drive
access to services with service use triggered by individual
need rather than prognostication [9].
Comprehensive Geriatric assessment (CGA) is a mul-
tidisciplinary diagnostic process intended to determine a
frail elderly person’s medical, psychosocial, and functional
capabilities and limitations to develop an overall plan for
treatment and long-term follow-up [77]. Recent studies
report that adding in specific advance care planning com-
ponents to CGA has utility for frail hospitalised geriatric
patients [78]. Additionally, including routine CGA for
older cancer patients undergoing systemic medical cancer
treatment aids identification of frail patients needing early
supportive and palliative care [79].
“Age Attuned Hospice Care” is an approach proposed
by Nicholson and Richardson [19] that balances continuity
with ongoing adaptation to loss. They argue that the model
(Box 2) is particularly relevant as specialist palliative care
often focuses its attention on people either with domi-
nating single diseases, like cancer, or giving care at the very
end-of-life [80]. The proposal is that the focus should be on
helping people to live well even when their condition(s) is
advancing and cannot be cured. [19 p. 8]
The Bromley Care Co-ordination Centre (Box 3) in Kent,
London is a nurse-led service primarily for older people
with palliative care needs who do not meet the criteria for
referral to specialist palliative care services providing timely
and coordinated end-of-life care to patients with progres-
sive illness and/or frailty, thought to be in the last year of
their life [69]. It offers 24/7 telephone support and home
visits to patients providing symptom control pain control
and psychological support. It has led to working with a dif-
ferent skill mix developing a “stratification” tool intro-
ducing the role of care navigators and volunteers [81].
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