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248 Chapter 17
For further information on breathlessness see Chapter
12: The Management of Respiratory Symptoms and
Advanced Chronic Obstructive Pulmonary Disease.
Pain
Patients with advanced HF commonly experience pain,
present in up to 90 % of patients with NYHA class IV [10].
As with all pain the underlying cause should be deter-
mined and treated as appropriate, for example, anti-angi-
nal medication as tolerated for ischaemic chest pain. For
other pains opioids are generally used, avoiding renally
excreted opioids in renal failure [9]. NSAIDs are generally
contraindicated due to adverse effects on renal function,
sodium and fluid retention, and gastrointestinal side
effects [9]. Tricyclic antidepressants (TCAs) and gabapen-
tinoids may be useful for peripheral neuropathy for
example due to diabetes related neuropathy although
TCAs should be used with caution as they may prolong the
QT interval leading to tachyarrhythmias.
Fatigue
The management of fatigue should include an attempt to
identify reversible causes such as anaemia, infection,
obstructive sleep apnoea, electrolyte abnormalities, and
renal failure. One should exclude depression, thyroid
abnormalities, and psychosocial contributors, and ensure
the optimal treatment of HF.
Exercise may be helpful for fatigue but should be tai-
lored to an individual’s performance status and stage of
heart failure [10]. Educating patients on how to time their
activities to periods of peak energy may be useful. There is
no evidence for the use of stimulants such as methylpheni-
date for heart failure related fatigue evidence. It may be
reasonable to consider these therapies but important to be
mindful of potential adverse effects such as an increased
heart rate and blood pressure [9].
Anaemia
Iron deficiency and anaemia are common in patients with
HF, being independently associated with reduced exercise
capacity, recurrent HF hospitalisations, and high cardio-
vascular and all-cause mortality. Treatment is complex and
generally consists of IV iron therapy. Erythropoietin stim-
ulating agents are not indicated for the treatment of
anaemia in HF. For further details the reader is directed to
recent European guidance [14]. As with all palliative
therapeutic strategies, one must consider patient goals and
potential benefits and risks of therapy.
Oedema/Ascites
The management of oedema requires excellent skin care to
prevent pressure and other skin ulcers and cellulitis.
Compression stockings may be useful but many patients
find them uncomfortable to use [9] and raising legs when
not mobilising will give symptomatic relief.
Optimal management of HF is necessary and discon-
tinuing medications associated with fluid retention such as
dihydropyridine calcium channel blockers, thiozolidine-
diones, NSAIDs, corticosteroids, and others may help.
Optimal dosing of diuretics considering electrolyte balance
depending on goals and prognosis is the mainstay of med-
ication management. Similarly, ascites secondary to right-
sided HF is best managed with diuretics; paracentesis
including indwelling catheters could be considered rarely
if refractory [10].
Psychological /Psychosocial
Depression and anxiety is very common in heart failure
and present is more than 50% of patients and more
common in patients with severe disease, for example pre-
sent in 40 to 70% of hospitalised patients with NYHA class
III or IV symptoms [10].
The presence of depression is associated with higher
symptom burden and increased risk of adverse outcome
such as hospitalisations and mortality [9].
Treatment of depression must be holistic, addressing
physical, psychological, spiritual, and social needs. People
with HF at the end-of-life face social isolation, hopeless-
ness, significant frustration, challenges of working with the
formal health-care system, life disruption, high symptom
burden, and uncertainty about prognosis and symptoms
[5, 93].
Non-pharmacological management includes open
communication, cardiac rehabilitation, exercise, and psy-
chological therapies including cognitive behavioural
therapy. Selective serotonin reuptake inhibitors (SSRIs)
are recommended first line as pharmacological agents for
depression and are safe and relatively well tolerated [10].
Further, it is important not to forget the challenges that
caregivers experience. Many caregivers of elderly patients
with HF are themselves elderly and often experience poor
health. These caregivers have high rates of depression.
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Palliative Care in Advanced Heart Failure 249
Discontinuing Medical Therapies
Large randomised double-blind placebo-controlled
trials have irrefutably demonstrated the prognostic
benefit of HF medical therapy, such as angiotensin
converting enzyme (ACE) inhibitors, beta blockers and
mineralocorticoid receptor antagonists. These drugs
have also been unequivocally shown to alleviate symp-
toms, reduce hospital admissions, and improve quality
of life [14].
It follows that in HF patients with escalating pallia-
tive care needs, conventional HF medical therapy
should be continued wherever possible. Medication
should be reviewed regularly, and the relative benefits
with respect to survival and symptom management
considered. Advanced HF patients are prone to hypo-
tension and hypovolaemia. As a transition to a more
palliative approach is taken, one must weigh the risks
and benefits of what medications are continued and for
what benefit. Diuretics remain important throughout
the disease trajectory with respect to alleviating
peripheral oedema and preventing pulmonary oedema
[94]. Intermittent intravenous diuretic therapy is often
considered appropriate in advanced HF, but aggressive
diuretic management in hospital is not recommended
in the terminal stages. Subcutaneous infusion of
diuretics may be of benefit [95, 96]. Continuing digoxin
in end-stage HF may have symptomatic benefit by
reducing heart rate and breathlessness without adversely
affecting blood pressure [97].
Advance Care Planning and
End-of-Life Care
Advance care planning should be part of routine care for
all patients with HF. It should be wide ranging, including
all aspects important to each patient and those close to
them. It should also include medical anticipatory care
planning, where likely deteriorations are discussed and
patient centred plans made and documented. It is often
helpful to frame as “hope for the best and plan for the
worst”[42].
When death is imminent and comfort is the primary
goal, a reassessment of symptom burden, psychosocial,
informational, and other needs must be done. Opioids
with or without benzodiazepines via subcutaneous (SC)
route of administration for breathlessness are used.
Medications must be re-evaluated. Grief and bereavement
support for families should be available.
Conclusion
The prevalence of HF patients is increasing and so are their
symptom, caregiver, informational, social, psychological,
and spiritual needs. Earlier identification of these palliative
care needs will help bring improved quality of life to this
growing population. Recognition of end-stage disease is
Case Study Conclusion
The palliative care team did not hear from BB for two
months. They telephoned to find she was as stable as at her
discharge, with good symptom control and acceptable quality
of life and was planning for Christmas. Her primary care
physician and home care nurse had been seeing to her needs.
She remained stable for a number of additional months with
daily visits from her daughters and received twice daily home
support help. She slowly deteriorated with a PPS of 30%, and
then a more rapid deterioration with changes week by week.
She recognised she was dying.
She was well supported by her family, primary care
physician, and home care nurse and utilised the support of
the palliative response team who assisted with a change of
medication administration to SC route, titration of doses to
comfort, and provided glycopyrrolate subcutaneously at a
PPS of 10% for the treatment and relief of upper respiratory
secretions. The three daughters had gathered around their
mother for her last weeks and received grief and bereavement
counselling.
Case Study Part 4
Following her eight weeks at the day hospice she was
discharged from palliative care services with excellent
symptom control at rest. She remained fatigued but focused
what energy she had on her most important tasks. She was
screened for depression but her mood remained stable in
spite of recognising her uncertain prognosis. She continued
with a Palliative Performance Scale (PPS) of 40% and was
unable to descend her stairs. Occupational Therapy Services
reviewed her home and provided appropriate equipment
and a hospital bed downstairs. Home care was organised to
support BB and her family with her care needs.
Her home care nurse and primary care physician moni-
tored her closely at home. She had no further admissions to
hospital.
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250 Chapter 17
crucial to meet patient goals and optimise care, but pallia-
tive care is not simply “terminal care” in this population
and should be introduced earlier along with active care
depending on identified needs. Discussions with patients
and families about the anticipated course of the disease,
prognostic uncertainty, goals of care, and advance direc-
tives (advance decisions) including preference for resusci-
tation orders, deactivation of defibrillation devices, and
place of death need to be revisited along the trajectory.
A patient and family-centred multidisciplinary approach
with improved integration and communication between
primary, palliative, and cardiology care will likely serve
patients best.
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© 2024 John Wiley & Sons Ltd. Published 2024 by John Wiley & Sons Ltd.
254
18
family/informal carers play in the care of people with ARD.
We consider the relationship of the patient and family to
health-care professionals and the requirement for teams
working across the health and social care system to meet
the needs of the individual, before giving recommenda-
tions for clinical practice. The chapter concludes by con-
sidering death (whether sudden or planned) and
anticipated death following the withdrawal of dialysis and
the care required for the deceased and to the bereaved
family.
Context
Chronic kidney disease (CKD) is common. It is classified
into five stages (Table 1) based on the estimated glomer-
ular filtration rate (eGFR) and the presence of protein in
the urine.
CKD in its early stages [1, 2, 5] is generally totally
asymptomatic and largely irreversible, and care is focused
upon establishing a diagnosis of the underlying cause,
reducing the associated cardiovascular risk and retarding
progression. Symptoms are more likely as disease prog-
resses towards stage 5 which may require renal replacement
therapy (RRT). RRT is therapy which replaces the normal
blood filtering function of the kidneys. Renal disease is
common. 11–15% of adults over the age of 35 have some
level of CKD, while 7% have the most severe stages [5].
Advanced renal failure refers to those with stage 4–5 CKD
with or without proteinuria.
Advanced Renal Disease or End Stage Renal disease
(ESRD) or End Stage Kidney Disease (ESKD) all refer to a
condition in which renal function has deteriorated such
that it is insufficient to allow a person to remain well and is
persistent over a 90-day period [1]. The modern unifying
Palliative Care in Advanced
Renal Disease
Jo Wilson and Jenny Cross
Introduction
The requirement for palliative care in non-malignant con-
ditions including advanced renal disease is established [1,
2]. People living with advanced renal disease (ARD) are
often more symptomatic than those living with malignant
conditions [3], and they report a reduction in quality of life
and in psychological distress akin to cancer patients [4].
This chapter provides advice for practitioners on the
management of symptoms in patients with ARD.
There are increasing numbers of patients with renal dis-
ease [5], and our ageing population has an emergent
problem of complex interacting comorbidity involving
obesity, diabetes, and heart disease for which renal failure
is a common result. In this we recognise the detrimental
impact of poverty [6] with chronic disease and patients
who may suffer repeated admissions to hospital to manage
their illnesses [7]. This brings us to the concepts of “sup-
portive care,” “advance care planning” (ACP) and “frailty.”
Supportive care is defined as “helping the patient and their
family to cope with the illness journey – from pre-diagno-
sis, through the process of diagnosis and treatment, to
cure, to continuing illness or death and bereavement” [8].
Advance care planning (Chapter 9: Recognising
Deterioration, Preparing and Planning for Dying) allows
the dual consideration of the future, while actively
engaging in how to enjoy life currently and making real-
istic plans for the future bereavement experience of the
family. The assessment of frailty (Chapter 16: Frailty,
Dementia and Multi-Morbidity) and a comprehensive
geriatric assessment permits a focus on rehabilitation to
optimise life experience in this period. We consider these
topics in this chapter, in the context of the assessment of
mental capacity in decision-making and the vital role
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Palliative Care in Advanced Renal Disease 255
four hours. When a patient first starts HD, they often still
pass residual urine, and this allows some flexibility in the
hours and frequency of treatment in the first 6–9 months or
so. The dose time and frequency of HD is re-assessed and
planned accounting for gradually waning residual renal
function. Patients who have residual function, have consid-
erable flexibility in what they can eat and drink, and will
survive even if they miss treatment sessions sometimes for
weeks or even months. Once urine output is lost, so is this
flexibility, and missing dialysis sessions or dialysis with-
drawal will rapidly result in death in days or a small number
of days or weeks. HD is not easy to tolerate, nor without
physiological consequences. It requires an operative
procedure to place a fistula connecting an artery to a vein in
the forearm and these commonly fail or require further
intervention and further anaesthetics and hospital stays
[10]. HD itself can contribute to the accelerated loss of renal
function. This is thought to relate to hypotensive episodes
on dialysis, but even in their absence there is evidence of
critical organ hypoperfusion during dialysis [11]. The
reality of a day on HD is a long and tiring one. Treatment
shifts start at 07.00 am and the last shift ends at midnight.
The demand for HD machines is such that patient choice of
time is not always possible. NHS-provided transport to and
from treatment is one of the biggest challenges, particularly
in city centres, and is the single commonest cause of patient
complaint. Most frail elderly patients report that a dialysis
day is a null day, where they do little other than attend
treatment, and sleep on return home. A minority of patients
can conduct their own dialysis at home often with a family
member or partner to assist.
Peritoneal Dialysis (PD)
PD offers a gentler option. It requires daily treatment at
home but has the advantage that it uses the abdominal
cavity, rather than the circulatory system to achieve dial-
ysis, using ultra-pure dialysate fluid installation through a
semi-permanent indwelling dialysis catheter. The dialysate
fluid is delivered monthly to a patient’s home and is a more
flexible option if travel or family are a priority. It is associ-
ated with better preservation of residual kidney function
and avoids the need to attend hospital three times weekly
with the attendant frustrations of transport and risks of
nosocomial infection. The treatment is performed daily
and is effective in smoothing fluid removal, it is the
preferred treatment modality for those with a history of
ischaemic heart disease, left ventricular dysfunction, or
heart failure. It also allows considerable flexibility in die-
tary restriction, as it is more effective in clearance as it is
performed daily.
term is Advanced Renal Disease (ARD). Symptoms are
non-specific and their onset is pernicious, often passing
unnoticed. Where reported, symptoms of illness such as
nausea, itch, and fatigue demonstrate a considerable
increase often only in the month before death [3].
Renal Replacement Therapy (RRT)
The decision to choose renal replacement therapy is ideally
made well in advance (minimum of six months) when the
GFR is <20mls/min to allow preparation of vascular access
and shared decision making about modality [1]. Medical
therapies begin in parallel, and RRT starts when potassium,
phosphate, or fluid cannot be controlled by diet, fluid
restriction, and pharmacological interventions. The mean
GFR at the time of dialysis is 8 mls/min in the UK [9].
There are now four forms of therapy to consider: conserva-
tive or maximum conservative management (MCM), hae-
modialysis, peritoneal dialysis, and transplantation. It is
important to note that these are not necessarily “either/or”
treatments, and several may be utilised over the lifetime of
a patient with renal disease. They can though appear as
“either/or” due to the progressive nature of ageing and
accumulating co-morbidities making one modality, most
commonly transplantation, unlikely to be beneficial.
Haemodialysis (HD)
HD is the most familiar of the renal replacement therapies.
In this therapy the patient’s blood is filtered via a porous
membrane to clear it of by-products of metabolism. Most
UK patients (95%) receive this therapy in a hospital facility
three times a week. Each HD sessions lasts approximately
Table 1 Stages of CKD (Based on [1] and [5]).
Chronic
Kidney
Disease Stage eGFR
Presence of
Albumin in the
Urine
Description of
renal function
1 >90 Yes Normal
2 89–60 Yes Mildly reduced
3a 59–45 Regardless of
albuminuria
Moderately
reduced
3b 44–30 Regardless of
albuminuria
Moderately
reduced
4 29–15 Regardless of
albuminuria
Severely
reduced
5 <15 Regardless of
albuminuria
Severely
reduced
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256 Chapter 18
Transplantation
Renal transplantation is the preferred option for many
patients, as this negates the limitations of renal replacement
therapy in terms of dialysis dietary and fluid restrictions;
however it does require the patient to be compliant with
immunosuppressive therapy for the lifetime of the graft. It
also requires patients to be fit for transplantation surgery.
Patients require substantial physiological reserve such as
normal heart function, the ability to ascend two flights of
stairs or to achieve a six-minute rapid walk test to even be
considered for assessment. Mortality at five years is more
than doubled for those patients with a poor functional
status at the time of transplant compared with those
without [12]. Only 25% of patients on HD are sufficiently
robust to be considered for activation on the transplant
waiting list and the majority of these are under 70 years.
Although there is no age cut off, comorbidity precludes
them from this operation, therefore transplant in the over
80 years, is a rare event. Surprisingly, transplantation in the
older age group above 50 does not offer a survival
advantage over dialysis but certainly has a substantial
benefit in terms of quality of life. If a patient is trans-
planted, the graft might be expected to last 12–17 years.
Again because of the requirement for immunosuppression
and the persistence of the underlying primary disorder,
transplant is also associated with progression of cardiovas-
cular disease which can be accelerated by the presence of
immunosuppression particularly steroids. It should be
noted that some grafts can last 30 years, and patients may
be become frail and comorbid while the graft fails in
parallel. It can be a critical time for decision making when
the graft fails, and not all patients wish to be dialysed.
Maximal Conservative Management (MCM)
Maximal conservative management is the support of
patients with ARD without resorting to RRT and describes
conservative renal care that is now routinely provided in
UK renal units. It involves the management of patient’s
renal failure with diet, fluid, and pharmacological and life-
style interventions. Medical therapy includes the treatment
of underlying renal pathology and other manoeuvres to
prolong residual renal function, such as anti-hypertensive
medication. As renal function declines, the treatment of
renal anaemia with erythropoietin and optimization of
fluid balance with diuretics can become more important.
Symptom management is the focus [13].
While understanding that renal units have historically
had differing approaches to offering MCM as a valid option
[14], most units have offered this treatment option, since
2009, to patients who have restricted activities of daily
living and diabetes [15] and other co-morbidities [16].
These patients have tended to be older. For many years now
some renal clinicians have been interested in under-
standing the survival versus quality-of-life risk/benefit
ratio of patients being offered MCM. Dialysis prolongs
survival of elderly patients who have ARD with significant
comorbidity by approximately two years. However, those
patients who choose conservative management commonly
survive beyond a year and surprisingly achieving similar
numbers of hospital-free days compared to patients who
chose haemodialysis [17]. These patients also have more
access to palliative care and are more likely to die outside of
a hospital setting [18]. Currently there is a large NIHR
funded multi-centre “Prepare for Kidney Care” Study
underway [19, 20]. This study recognises that previous evi-
dence was from small observational studies, where like was
not being compared with like. This study is designed to
assist clinicians and patients with data on survival and
health related quality of life benefits associated with differ-
ent approaches to managing end stage chronic kidney dis-
ease in patients aged 80 years and over and those aged 65
years and multiple co-morbidities.
Frailty
The relationship between frailty and ARD is important.
Frailty is a state of health where even minor insults can
result in decline in physical or mental well-being. People
who are frail are at highest risk of adverse outcomes such as
falls, disability, admission to hospital or the need for
long-term care [21]. Frailty can be assessed using a clinical
frailty scale (CFS) which is based on a person’s functional
status two weeks prior to the assessment [22]. The CFS is
only validated in those over the age of 65 and has not been
validated for those with Learning Disabilities. However, as
the glomerular filtration rate (GFR) decreases the preva-
lence of frailty with ARD is high irrespective of age [23].
While there is interest in whether frailty predicts
mortality [24], the intention of the assessment of the frailty
score is to open opportunities for a comprehensive geri-
atric assessment (CGA) [25] and opportunities for the
patient to rehabilitate, increasing the likely hood of
independence and improving quality of life. A CGA has
been demonstrated to reduce hospital admission rates [26]
and increase the likelihood of the person remaining in
their own home [27].
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Palliative Care in Advanced Renal Disease 257
Physical frailty is often associated with sarcopenia – the
loss of muscle mass [28] and is common in those with
CKD. The combination of sarcopenia and frailty are both
negative prognosticators for quality of life, morbidity and
mortality [29]. Like frailty however, the assessment of sar-
copenia, allowing interventions such as introduction of
movement, nutrition, may allow for recovery or preven-
tion of decline [29].
Decision-making in elderly patients considering dialysis
is complex. A recent Dutch study of 196 participants
greater than 65 years of age starting dialysis (GoLD study)
found that 94% had geriatric impairments (cognition,
mood, mobility, functional performance, comorbidity
burden, and nutritional status) [30]. Of those, 77% starting
dialysis, and 88% of those in the MCM group had two or
more impairments. The most frequent were in functional
performance, cognition and severe co-morbidity. In the 89
patients who chose conservative management the preva-
lence of geriatric impairments was even higher (88%). In
the “Frail Elderly person on Dialysis” study 33% had fallen
in the previous three months, 14% sustained a fracture [31]
and it is well known that fractures in the elderly carries its
own mortality [32]. The Cognitive-HD study found that
patients with cognitive impairments on haemodialysis had
premature mortality compared with those who did not
[33]. Renal clinicians in the UK are evaluating ways to
make the CGA a standard part of renal care [34] and are
evaluating the impact this approach may have on outcomes
[35]. Just because we technically can dialyse elderly frail
patients does not mean that it is in their interests that it is
started if the above information is shared.
Advance Care Planning
While the concept of advance care planning is supported
[36], renal clinicians can find the concept of uncertainty
and advance care planning challenging and have linked
this to lack of communication training, and lack of experi-
ence in conservative management of patients with ARD
[37]. Others have linked this to systemic challenges such as
finding time when patients are/are not on dialysis to have
difficult conversations with carers and family present [38],
or to having documentation and processes that are simple,
individually tailored, culturally appropriate, and involves
key contacts/family [39].
People with ARD though have what is described as
“high burden, time consuming, invasive and exhaustive
tasks, impacting on all aspects of patient’s and care givers
lives” [40]. The act of remaining well, while on dialysis is
hard work from getting to dialysis, understanding and
making decisions about disease management, compliance
with diet and fluid, and all of this is affected by socioeco-
nomic factors, such as poverty and housing. Loss of
independence is a common sequelae with frequent social
support to assist during episodes of poor health. It’s not all
bad. Dialysis keeps you alive at the very least and at its best
can provide good physical health allowing you to maintain
a full life. Some patients report, dialysis has a social quality,
making friends at dialysis, and providing a structured rou-
tine which can make patients feel cared for [40].
While waiting for the “right time” to begin advance
care planning conversations, we often witness the inexo-
rable progression of the underlying conditions where,
despite ongoing technically impeccable dialysis
treatment, patients fail to thrive and symptomatically
deteriorate, developing end-of-life symptoms like
breathlessness, weight loss, hypotension, and progres-
sive cognitive decline despite treatment. Patients on
dialysis experience intermittent confusion, and micro-
strokes or frank stroke events, the latter is one of the
most feared outcomes for patients and is a common
event in a dialysis population. There is fatigue and dis-
comfort associated with transport to/from/dialysis that
occur in parallel with increasing requirements for social
and financial support. Cardiac arrest on dialysis is an
infrequent event [41], and if a death is anticipated, then
effective processes for decision-making need to be in
place to avoid death occurring on dialysis if this can rea-
sonably be avoided. While some haemodialysis centres
have developed procedures for the verification of death,
and transfer of the deceased to a public mortuary, a dial-
ysis centre is rarely the place for relatives to spend time
with the deceased. This situation may also distress other
patients who are dialysing in the vicinity.
Part of the challenge with advance care planning in any
disease is to see ACP, not as an additional “to do,” but as the
building and maintenance of a relationship where the
evolving goals of the patient are clearly understood and
documented for all to see. This means all (renal physician/
urse/GP or palliative care/allied healthcare professionals)
have the capacity to advance care plan, but it is likely that
one will need to lead and the other to support. It should
also be noted that people on dialysis have an additional
option, denied to the rest of us, of HD withdrawal: this
effectively allows them to die at a time of their choosing
[42]. It is rare that patients or families spontaneously
raise this.
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