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Supportive care for end-stage kidney disease: an integral part of kidney services across a range of income settings around the world

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A key component of treatment for all people with advanced kidney disease is supportive care, which aims to improve quality of life and can be provided alongside therapies intended to prolong life, such as dialysis. This article addresses the key considerations of supportive care as part of integrated end-stage kidney disease care, with particular attention paid to programs in low- and middle-income countries. Supportive care should be an integrated component of care for patients with advanced chronic kidney disease, patients receiving kidney replacement therapy (KRT), and patients receiving non-KRT conservative care. Five themes are identified: improving information on prognosis and support, developing context-specific evidence, establishing appropriate metrics for monitoring care, clearly communicating the role of supportive care, and integrating supportive care into existing health care infrastructures. This report explores some general aspects of these 5 domains, before exploring their consequences in 4 health care situations/settings: in people approaching end-stage kidney disease in high-income countries and in low- and middle-income countries, and in people discontinuing KRT in high-income countries and in low- and middle-income countries.
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Supportive care for end-stage kidney disease: an
integral part of kidney services across a range of
income settings around the world
Barnaby Hole
1,2
, Brenda Hemmelgarn
3,4
, Edwina Brown
5
, Mark Brown
6
, Mignon I. McCulloch
7
,
Carlos Zuniga
8
, Sharon P. Andreoli
9
, Peter G. Blake
10,11
,Ce
´cile Couchoud
12
,
Alfonso M. Cueto-Manzano
13
, Gavin Dreyer
14
, Guillermo Garcia Garcia
15
, Kitty J. Jager
16
,
Marla McKnight
17,18,19
, Rachael L. Morton
20
, Fliss E.M. Murtagh
21
, Saraladevi Naicker
22
,
Gregorio T. Obrador
23
, Jeffrey Perl
24,25
, Muhibur Rahman
26
, Kamal D. Shah
27
, Wim Van Biesen
28
,
Rachael C. Walker
29,30
, Karen Yeates
31
, Alexander Zemchenkov
32,33
, Ming-Hui Zhao
34,35,36,37
,
Simon J. Davies
38
and Fergus J. Caskey
1,2,39
1
UK Renal Registry, Learning and Research, Southmead Hospital, Bristol, UK;
2
Population Health Sciences, University of Bristol,
Bristol, UK;
3
Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta,
Canada;
4
Department of Medicine, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada;
5
Imperial College
Healthcare National Health Service Trust, London, UK;
6
Department of Renal Medicine, St. George Hospital, Sydney, New South
Wales, Australia;
7
Paediatric Intensive and Critical Unit, Red Cross War Memorial Childrens Hospital, University of Cape Town, Cape
Town, South Africa;
8
School of Medicine, Catholic University of Santisima Concepción, Advanced Renal Care Unit - Las Higueras
Hospital, Talcahuano, Chile;
9
Department of Pediatrics, Pediatric Nephrology, Indiana University Medical Center, Indianapolis,
Indiana, USA;
10
Ontario Renal Network, Toronto, Ontario, Canada;
11
Division of Nephrology, University of Western Ontario, London
Health Sciences Centre, London, Ontario, Canada;
12
French Renal Epidemiology and Information Network (REIN) Registry,
Biomedicine Agency, Paris, France;
13
Unidad de Investigación Médica en Enfermedades Renales, Hospital de Especialidades, Centro
Médico Nacional de Occidente, Instituto Mexicano del Seguro Social, Guadalajara, Jalisco, México;
14
Department of Nephrology,
Barts Health National Health Service Trust, London, UK;
15
Servicio de Nefrologia, Hospital Civil de Guadalajara Fray Antonio Alcalde,
University of Guadalajara Health Sciences Center, Hospital 278, Guadalajara, Jalisco, Mexico;
16
The European Renal Association
European Dialysis and Transplant Association Registry, Department of Medical Informatics, Academic Medical Center, Amsterdam
Public Health Research Institute, University of Amsterdam, Amsterdam, the Netherlands;
17
Renal Division, Brigham and Womens
Hospital, Harvard Medical School, Boston, Massachusetts, USA;
18
Division of Global Health Equity, Brigham and WomensHospital,
Harvard Medical School, Boston, Massachusetts, USA;
19
Program in Global Noncommunicable Disease and Social Change,
Department of Global Health and Social Medicine, Harvard Medical School, Boston, Massachusetts, USA;
20
National Health and
Medical Research Council Clinical Trials Centre, Faculty of Medicine and Health, University of Sydney, Camperdown, New South
Wales, Australia;
21
Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK;
22
School of Clinical
Medicine, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa;
23
Universidad Panamericana
Faculty of Health Sciences and School of Medicine, Mexico City, Mexico;
24
Division of Nephrology, St. Michaels Hospital and the
Keenan Research Centre in the Li Ka Shing Knowledge Institute, St. Michaels Hospital, Toronto, Ontario, Canada;
25
Department of
Medicine, Division of Nephrology, University of Toronto, Toronto, Ontario, Canada;
26
Department of Nephrology, Sir Salimullah
Medical College and Mitford Hospital, Dhaka, Bangladesh;
27
NephroPlus Dialysis Centres, Hyderabad, India;
28
Nephrology
Department, Ghent University Hospital, Ghent, Belgium;
29
School of Nursing, Eastern Institute of Technology, Napier, New Zealand;
30
Renal Department, Hawkes Bay District Health Board, Hastings, New Zealand;
31
Division of Nephrology, Queens University,
Kingston, Ontario, Canada;
32
Department of Internal Disease and Nephrology, North-Western State Medical University named after
I.I. Mechnikov, Saint Petersburg, Russia;
33
Department of Nephrology and Dialysis, Pavlov First Saint Petersburg State Medical
University, Saint Petersburg, Russia;
34
Renal Division, Department of Medicine, Peking University First Hospital, Beijing, China;
35
Key
Lab of Renal Disease, Ministry of Health of China, Beijing, China;
36
Key Lab of Chronic Kidney Disease Prevention and Treatment,
Ministry of Education of China, Beijing, China;
37
Peking-Tsinghua Center for Life Sciences, Beijing, China;
38
Faculty of Medicine and
Health Sciences, Keele University, Keele, UK; and
39
The Richard Bright Renal Unit, Southmead Hospital, North Bristol National Health
Service Trust, Bristol, UK
A key component of treatment for all people with
advanced kidney disease is supportive care, which aims to
improve quality of life and can be provided alongside
therapies intended to prolong life, such as dialysis. This
article addresses the key considerations of supportive care
as part of integrated end-stage kidney disease care,
with particular attention paid to programs in low- and
Correspondence: Fergus Caskey, University of Bristol, Canynge Hall, 39
Whatley Road, Bristol BS8 2PL, UK. E-mail: Fergus.Caskey@bristol.ac.uk
The views expressed in this commentary are solely the responsibility of
the authors and they do not necessarily reect the views, decisions, or
policies of the institutions with which they are afliated.
Received 26 June 2019; revised 11 October 2019; accepted 7 November
2019
ISN public affairs www.kisupplements.org
e86 Kidney International Supplements (2020) 10, e86–e94
middle-income countries. Supportive care should be an
integrated component of care for patients with advanced
chronic kidney disease, patients receiving kidney
replacement therapy (KRT), and patients receiving non-KRT
conservative care. Five themes are identied: improving
information on prognosis and support, developing context-
specic evidence, establishing appropriate metrics for
monitoring care, clearly communicating the role of
supportive care, and integrating supportive care into
existing health care infrastructures. This report explores
some general aspects of these 5 domains, before exploring
their consequences in 4 health care situations/settings: in
people approaching end-stage kidney disease in high-
income countries and in low- and middle-income countries,
and in people discontinuing KRT in high-income countries
and in low- and middle-income countries.
Kidney International Supplements (2020) 10, e86–e94; https://doi.org/
10.1016/j.kisu.2019.11.008
KEYWORDS: conservative care; end-stage kidney disease; palliative care;
supportive care
Copyright ª2020, International Society of Nephrology. Published by
Elsevier Inc. All rights reserved.
From the perspective of end-stage kidney disease (ESKD),
integrated care includes pre-emptive treatment for peo-
ple with chronic kidney disease (CKD) and those at risk
of acute kidney injury, alongside kidney replacement therapy
(KRT) (i.e., dialysis or kidney transplantation) and non-KRT
conservative care. A key component of treatment for all peo-
ple with advanced kidney disease is supportive care, which
aims to improve quality of life and can be provided alongside
therapies intended to prolong life, such as dialysis.
1
This
article addresses the key considerations of supportive care as
part of integrated ESKD care. This article considers support-
ive care for people of all ages, both those with and approach-
ing ESKD, with special attention to programs in low- and
middle-income countries and emphasize that supportive
care should be an integrated part of care for patients with
advanced CKD, patients receiving KRT, and patients receiving
non-KRT conservative care. The challenges of delivering sup-
portive care as part of cost-effective, integrated kidney care
will vary according to disease epidemiology, health care fund-
ing and infrastructure, and the cultural and political issues of
a country. An action plan to support the optimal delivery of
supportive care across a range of health care and income set-
tings is outlined in Harris et al.
2
This article adds granularity
to the recommendations by exploring application of the pro-
posed action plan in 4 settings: people reaching ESKD and
people receiving KRT in high-income countries (HIC), and
in low- and middle-income countries (Table 1). This approach
has been chosen to highlight the principal gaps, opportunities,
and challenges in supportive care delivery worldwide.
Global inequity in access to kidney care
There is substantial global inequity in access to kidney care. In
2010, an estimated 2.62 million people were receiving KRT
worldwide,
3
with approximately 93% of these people living in
high- or upper-middle-income countries. This reects KRT
rates in HIC that are 70 times higher than in low- and lower-
middle-income countries.
4
In HIC, the incidence of KRT has
increased progressively over the past half century, although
conservative care as a treatment alternative for older multi-
morbid people has gained acceptance.
5
Meanwhile, it is in low-
and lower-middle-income countries, where ESKD is increasing
in prevalence, that most of the 7 million people die each year as
a result of unavailable or severely limited KRT.
3,6
As well as
limited funding for KRT itself, these less-afuent nations have
health care worker shortages, including both physician and
nursing personnel, with nephrologist densities averaging 0.32
per million population, compared with more than 50 per
million population in some HICs.
68
Similarly, there is a crit-
ical lack of access to palliative care, especially for the poor.
9
Integrated kidney care can incorporate a combination of
treatments that aim to prevent future health complications,
such as cardiovascular events and ESKD, management of
kidney disease (e.g., KRT), and supportive care. Relative in-
vestment in and contribution of the three domains of kidney
care are closely linked with the economic setting
10,11
(Figure 1
11
). Higher-income countries can provide greater
access to all 3 domains, whereas the World Health Organi-
zation has rated dialysis service development as low priority
in low- and lower-middle-income countries, where they
recommend efforts that focus on ESKD prevention.
12,13
There
is a clear need to ensure that efforts to dene roles and
standards of supportive care are individualized to the health
economic contexts in which they will be applied.
Supportive care for people approaching ESKD, on KRT, and
withdrawing from KRT
Adults and children with advanced CKD and ESKD experi-
ence a high symptom burden and have complex health and
social care needs.
1416
The denition of supportive care in the
setting of kidney disease has been aligned with the World
Health Organizations description of palliative care.
1
Thus
dened, supportive care is ...anapproach that improves the
Table 1 | Illustrative settings in which supportive care is
delivered worldwide
Clinical
situation
High-income
country
Low- or middle-income
country
People
reaching
ESKD
Setting A: supportive
care for individuals
reaching ESKD where
KRT is universally
available (includes those
who choose or are
advised not to start KRT)
Setting B: supportive care for
individuals reaching ESKD
where KRT availability is
restricted or self-funded
(includes those who choose,
are advised, or are obliged
not to start KRT)
People
receiving
KRT
Setting C: supportive
care for individuals on
KRT (includes those who
choose or are medically
advised to withdraw
from KRT)
Setting D: supportive care
for individuals on KRT
(includes those who choose,
are medically advised, or are
obliged to withdraw from
KRT)
ESKD, end-stage kidney disease; KRT, kidney replacement therapy (dialysis and
kidney transplantation).
B Hole et al.: Supportive care for ESKD ISN public affairs
Kidney International Supplements (2020) 10, e86–e94 e87
quality of life of [people with kidney disease] and their
families facing the problems associated with life-threatening
illness, through the prevention and relief of suffering by
means of early identication and impeccable assessment and
treatment of pain and other problems, physical, psychosocial
and spiritual.
17
Figure 2 shows supportive care integrated
into the care of all individuals with kidney disease, including
patients with and without ESKD, patients receiving KRT and
conservative care, and patients at the end of life. Key com-
ponents of supportive care include proactive symptom
assessment and management, estimation and communication
of prognosis, shared decision-making, advance-care planning,
as well as end-of-life and bereavement care.
1
Each of the 3
elements of integrated kidney care is required to varying
degrees by patients at different points in their disease course,
with a tendency for supportive care to increase toward the
end of life (Figure 3).
Although the main components of supportive care have
been outlined, and the need to integrate them into routine
care has been recognized, no consensus exists as to what
constitutes optimal supportive care for patients with CKD and
ESKD.
1
Clear denitions of the key components and role of
supportive care could facilitate the development of pragmatic
minimum standards, matched to local health care systems,
culture, and economic settings.
2
Such standards would facil-
itate the delivery and measurement of supportive care pro-
vision, including analysis of cost effectiveness in different
settings, to inform resource distribution and program de-
livery. Delineation of supportive care would facilitate assess-
ment of its interactions with preventive treatment and as a key
component in the management of kidney disease.
Conservative care for people approaching ESKD not planning
to start KRT
Supportive care is the foremost domain of integrated kidney
care for individuals receiving conservative care. However,
consideration must be given to 3 distinct groups who receive
conservative care because provision of supportive care differs
for each (Table 2).
1
Those who elect not to start KRT or who
are medically advised not to start KRT based on their indi-
vidual circumstances are categorized as receiving compre-
hensive conservative care. Among the oldest individuals and
those with major comorbidities, a number of observational
studies have shown no clear net survival or quality of life
benet from preparing for dialysis compared with having
comprehensive conservative care.
1821
Individuals who start
conservative care because of KRT unavailability receive
choice-restricted conservative care. Those who reach ESKD
Tot al ca re
Preventave
treatments
Managing
kidney
disease
Supporve
care
High-income
seng 1
High-income
seng 2
Low-income
seng 4
Middle-income
seng 3
Figure 1 | Components of care received by individuals with kidney disease, conceptualized as preventive (light-blue), management
of underlying kidney pathology (mid-yellow), and supportive (dark-green). Contributions of care components are shown in 4
hypothetical settings: 2 high-income, 1 middle-income, and 1 low-income, and are interpretable as countries, regions, or treatment centers.
In setting 1, greater total and proportional investment has been made in managing kidney disease (e.g., dialysis services) than in
settings 2, 3, or 4. In setting 2, greater emphasis on preventive and supportive care is delivered. In setting 3, preventive treatment and
management of kidney disease are funded, but supportive care has not yet been funded. In setting 4, preventive treatment represents a
greater proportion of service delivered than in settings 1, 2, and 3, although it receives less investment in absolute terms. Management of
kidney disease (e.g., dialysis) is unavailable in setting 4. Data are from White SL, Chadban SJ, Jan S, et al. How can we achieve global equity in
provision of renal replacement therapy? Bull World Health Organ. 2008;86:229237.
11
Supporve care
Death and bereavement
Kidney disease
CKD
AKI
No
kidney
disease
C
End-stage kidney disease
KRT
Tx HD
PD
Conservave care
T
x
T
T
HD
d
b
Figure 2 | Supportive care as part of integrated kidney care.
Arrow between conservative care and kidney replacement therapy
(KRT) indicates individuals switching their treatment approach.
Those with end-stage kidney disease who stop KRT receive
supportive care at the end of life, not conservative care, which is
provided to individuals reaching the end stage as either a chosen or
choice-restricted therapy. AKI, acute kidney injury; CKD, chronic
kidney disease; HD, hemodialysis; PD, peritoneal dialysis; Tx,
transplantation.
ISN public affairs B Hole et al.: Supportive care for ESKD
e88 Kidney International Supplements (2020) 10, e86–e94
without recognition or a diagnosis are categorized as having
unrecognized ESKD. Evidence of the effectiveness of conser-
vative care and the experiences of patients in these contexts is
needed. In nations that can provide KRT to all individuals
who might benet, comprehensive conservative care is likely
to predominate. Individuals in countries that cannot provide
universal KRT may elect to receive conser vative care, but most
are likely to receive choice-restricted conservative care or die
with unrecognized ESKD. Access to supportive care also is
likely to be highly restricted for these individuals.
Key components of comprehensive conservative care have
been dened (Table 3).
1
As with KRT, comprehensive con-
servative care includes all treatment domains, such as pre-
ventive care (minimize risk of adverse events), management
of kidney disease (interventions to delay progression), and
supportive care. Nonetheless, treatment elements predomi-
nantly relate to supportive care, signifying palliative care as an
essential component of comprehensive conservative care.
Choice-restricted conservative care and unrecognized ESKD
are compatible with provision of both preventive and sup-
portive care, although neither is presumed.
Opportunities and challenges in the delivery of supportive
care
Five themes were identied and included in the action plan
by Harris et al.,
2
as follows: improving information on
prognosis and support, developing context-specic evidence,
establishing appropriate metrics for monitoring care, clearly
communicating the role of supportive care, and integrating
supportive care into existing health care infrastructures.
Generalizable aspects are outlined later, before exploring their
consequences in 4 contexts: people approaching ESKD in high-
and low- and middle-income countries and people discontinu-
ing KRT in high-, low-, and middle-income countries (Tab l e 1 ).
Generalizable aspects of the 5 themes
Improving information on prognosis and support for people
with ESKD. In all settings, patient preference and perspective
must be included in the provision of supportive care.
Although in many cultures this will be best achieved through
shared decision-making with health care professionals trained
in effective communication, it must be recognized that there
are different approaches to family involvement in decision-
making and these do not always follow EastWest cultural
stereotypes.
22
Regardless, improved evidence is needed
regarding how best to support people preparing for life and
potential or probable death with ESKD. The probability of
ESKD, likelihood of transplantation, and projected survival
with each treatment are likely to inform initiation decisions.
Dealing with uncertainty is challenging and needs support.
Further information also is needed on quality of life and
death, and patient-reported experiences. The consequences of
providing intensive supportive care for people with kidney
disease are largely unknown. These may involve physical and
mental health, end-of-life care, and survival, as has been
shown in other disease settings.
23
Making available context-specic guidance on supportive
care. Guidance on prognosis and supportive care will have
the greatest inuence if it is readily available, understandable,
and context-specic, or in a form that allows it to be inter-
preted in a context-specic manner (including for children,
and so forth, as well as across economic settings). Materials
must be accessible to relevant parties and relate to realistic,
rather than idealized, care.
Establishing approaches to evaluation of care access and
quality. Collecting data on aspects of supportive care for
CKD, KRT, and conservative care would provide an integrated
picture of total kidney care. Dening optimal and minimum
Decision support, symptom control, and advance-care planning
CKD care
Management of cardiovascular risk factors
KRT
End-of-life care Bereavement care
CKD diagnosed ESKD reached Dialysis stopped Death
Time
Figure 3 | Hypothetical patient journey showing variation in components of kidney care with disease/time progression. In this
example, a patient already is receiving cardiovascular risk management when their chronic kidney disease (CKD) is diagnosed. CKD care then is
added. At a later date, supportive care is added for symptom control. Sometime later they start kidney replacement therapy (KRT). Later again,
a deterioration triggers deprescribing of preventive care and subsequently a choice to withdraw from dialysis. Supportive care is continuous
through CKD, end-stage kidney disease (ESKD)/KRT, end-of-life, and bereavement phases. Light-blue boxes, preventive care; yellow boxes,
kidney care; green boxes, supportive care.
Table 2 | Denitions of conservative care
Comprehensive
conservative care
Conservative care that is chosen or
medically advised
Choice-restricted
conservative care
Conservative care for patient in whom
resource constraints prevent or limit access to
kidney replacement therapy; therefore, a
choice for conservative care cannot be
recognized
Unrecognized G5 CKD CKD is present but has not been recognized or
diagnosed; therefore, a choice for conservative
care cannot be recognized
CKD, chronic kidney disease; G5, glomerular ltration rate category 5 CKD.
Reproduced with permission from Davison SN, Levin A, Moss AH, et al. Executive
summary of the KDIGO Controversies Conference on Supportive Care in Chronic
Kidney Disease: developing a roadmap to improving quality care. Kidney Int.
2015;88:447459.
1
B Hole et al.: Supportive care for ESKD ISN public affairs
Kidney International Supplements (2020) 10, e86–e94 e89
standards of supportive care is a necessary rst step to
assessing whether and to what standard it is being delivered.
Inclusion of metrics such as patient-reported outcomes and
experiences, dialysis withdrawal, and quality of end-of-life
care would facilitate evaluation of the experience of living
and dying with kidney disease.
Clearly communicating the role of supportive care.
Supportive and conservative care must not be perceived as
cost-saving alternatives to provision of other aspects of kid-
ney care, such as KRT. Dening the role of each domain of
integrated kidney care emphasizes the eligibility for sup-
portive care of all individuals, including those receiving KRT.
Nomenclature may need to be exible for communication in
different cultures and dialects. Rigor is needed, however, to
prevent confusion between conservative care, provided only
to those not receiving KRT, and supportive care, which is
benecial to all people with advanced kidney disease.
Integrating supportive care with existing health care supply
chains. Effective and efcient supportive care requires inte-
gration with existing infrastructures. Increasing levels of
multimorbidity means that most people with advanced kid-
ney disease will be living with comorbidity.
24
Furthermore,
the supportive care needs of people with kidney disease are
likely to overlap with those with other life-limiting condi-
tions. Exchange of learning between specialists in kidney
disease and experts in multimorbidity and palliative care may
be valuable. By dening preventive, kidney, and supportive
aspects of kidney management, health care for people with
kidney disease may be rationalized.
Setting A: people reaching ESKD in HIC
This section examines the role of supportive care for in-
dividuals starting an ESKD treatment modality in which direct
costs are paid by the state or an insurer. Supportive care for
these individuals has 2 manifestations. The rst is as support
during treatment decision-making. The second is the sup-
portive care components of each available treatment package
the nature of which might, in turn, inuence which is chosen.
Broadly speaking, 2 groups of people require attention:
younger, tter people who are likely to live substantially
longer with KRT than conservative care, deciding on a
long-term treatment strategy combining dialysis modalities
and/or transplantation. Although conservative care is
exceptional, these people would benet from supportive
care, perhaps most importantly in the form of symptom
management and psychological support, during decision-
making and alongside KRT; and
typically older, multimorbid people for whom the survival
benets of KRT are less and might be traded off against the
burden of dialysis. Treatment decisions are between dialysis
modalities and comprehensive conservative care because
transplantation is not medically an option. Supportive care
available during decision-making, as part of comprehensive
conservative care or alongside KRT, will benet these
people.
Optimizing communication and maximizing patient
participation in decision-making is a top priority for adults
on or nearing dialysis, their caregivers, and health care pro-
fessionals.
25
Shared decision-making is expected in many
HICs.
26
Decision support tools have been developed and
more are in development.
27
Prognostic calculators exist,
including some that have been validated in external data
sets.
28
However, shared decision-making may not always
occur in decisions regarding ESKD, in which KRT may be
given precedence over comprehensive conservative care dur-
ing decision-making.
27
Meanwhile, nonsystematic efforts to
communicate treatment options and aims in advanced kidney
disease have been reported.
29
Although there are many successful examples of integrated
preventive, kidney, and supportive care systems in HICs,
19
barriers and disincentives have the potential to drive under-
delivery of supportive care. In some settings this might reect
disproportionate investment in kidney domains of health care
(Figure 1), which may convey a risk of overtreatment. Even in
settings in which comprehensive conservative care is well
established, the availability and nature of services can be
variable and ill dened.
30
Many HICs have registries that are well placed to appraise
delivered care along with dialysis and transplant epidemiology
and outcomes. Patient-reported outcome measures have been
incorporated into a small number of kidney registry data sets.
However, the capture of data for individuals without ESKD is
rare, particularly for children. Very little is known about the
experiences of people who make an informed decision for
comprehensive conservative care.
Recommendations.
The core components and standards of supportive care,
such as symptom control and opportunities for advance-
care planning, should be dened in a way that permits
measurement.
Chosen standards must be culturally suitable and sensitive.
For example, although shared decision-making is favored in
many Western cultures, it may not be a universally appro-
priate metric as new, non-Western countries develop into
HICs and become able to provide KRT more broadly.
Information on prognosis and supportive care should be
freely available to all relevant parties. When appropriate, a
Table 3 | Components of comprehensive conservative care
Comprehensive conservative care is planned, holistic, patient-centered
care for patients with G5 CKD that includes the following
Interventions to delay progression of kidney disease and minimize risk
of adverse events or complications
Shared decision-making
Active symptom management
Detailed communication including advance-care planning
Psychological support
Social and family support
Cultural and spiritual domains of care
Comprehensive conservative care does not include dialysis
CKD, chronic kidney disease; G5, glomerular ltration rate category 5 CKD.
Data are from Davison SN, Levin A, Moss AH, et al. Executive summary of the KDIGO
Controversies Conference on Supportive Care in Chronic Kidney Disease: developing
a roadmap to improving quality care. Kidney Int. 2015;88:447459.
1
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e90 Kidney International Supplements (2020) 10, e86–e94
single repository should be maintained to ensure clarity of
communication and prevent duplication of work.
Registries provide a logical means through which to collect
required information. Databases should be expanded to
include:
Ball individuals with kidney disease, including:
-children,
-individuals with acute kidney injury and CKD, and
-those choosing comprehensive conservative care;
and
Bquality of life and quality of death.
Robust decision support tools should be developed to
facilitate shared decision-making between KRT and
comprehensive conservative care. These should facilitate
discussion of prognosis and transplant likelihood.
Decision support should be developed for less well-
represented populations, including children, and should
cover individual and caregiver costs such as travel, loss of
employment, and so forth.
Nephrology services should interface with primary care,
community, and palliative services to ensure that people
with kidney disease have access to existing supportive care
networks and that their special requirements are met.
Observational and interventional research is required to un-
derstand the system and individual effects and costs of intro-
ducing standardized supportive care. Interventions such as
decision aids must be tested rigorously in real-world settings.
Setting B: people reaching ESKD in low- and middle-income
countries
This section examines the role of supportive care for in-
dividuals residing in countries where the majority of direct
treatment costs are not paid by the state. These are individuals
who lack private insurance or personal wealth such that they
do not have the opportunity to choose KRT or comprehensive
conservative care. They may reside in countries where some
citizens have access to health care (e.g., state employees) but
there is not yet universal health care coverage. For the ma-
jority of these individuals, kidney care is unavailable or un-
affordable. As a result, they die with undiagnosed ESKD or
receive choice-limited conservative care, usually with no ac-
cess to palliative care.
Individuals and their families in this setting have different
supportive care needs from those in more afuent areas.
Given low levels of inuence over their treatment, supportive
care is likely to play a lesser role in decision support.
Nevertheless, a proportion of individuals self-fund a period of
KRT. Dialysis may cost 7 to 48 times the average income and
can be associated with catastrophic health care costs and
precipitation of familial poverty.
31,32
For those contemplating
self-funding, supporting rational decisions with information
regarding the survival and quality-of-life benets of KRT
alongside nancial costs may reduce the need for early KRT
withdrawal and health carerelated poverty.
Individuals who cannot access or afford KRT experience
high levels of avoidable health-related suffering.
33
These
individuals need supportive care. Deciencies of and prior-
ities for palliative care in low-income countries are well
described.
9,33
The essential components of supportive care for
people dying with/from nonKRT-treated ESKD need
dening, but are likely to overlap with familiar palliative care
priorities. Where general palliative care services are in place,
these may provide models, access to care, and opportunities
for establishing costs and effectiveness for those with kidney
disease. Supportive care for those receiving choice-restricted
conservative care may provide a legitimate alternative for
families considering self-funding KRT. Although the need for
supportive care is clear, it is vitally important that access to
palliation does not contribute to underprovision of kidney
and preventive domains of care, except where rigorously
developed health economic evidence supports this approach.
In resource-limited settings, choice-limited conservative
care can be provided disproportionately to older people,
children, and those from lower socioeconomic and minority
ethnic groups.
34
Capturing data that permit evaluation of
inequity could inform policy regarding access to care and
equality of services nationally and internationally. This will
require metrics that capture delivery of choice-limited con-
servative care and supportive care. Given the lower pene-
trance of registries and high levels of undiagnosed ESKD in
low- and middle-income countries, routinely collected data
are likely to be inadequate.
Recommendations.
Supportive care should be available to all individuals,
including those who self-funding KRT and those who
receive choice-limited conservative care. Minimum stan-
dards of care should be dened.
Information on prognosis should be accompanied by full
details of cost for families contemplating self-funding.
Alignment with existing networks for the delivery of
palliative care is likely to be necessary.
Studies are needed to identify the effectiveness, costs, and
opportunity costs of providing supportive care in low- and
middle-income countries.
Provision of supportive care must not be regarded as an
alternative to developing KRT services or investment in
preventive care.
Setting C: people receiving KRT in HICs
This section examines the role of supportive care for people
on KRT or withdrawing from state-/insurer-funded KRT.
These individuals are likely to have complex health histories
including preventive, kidney, and supportive care, the latter
commencing in late stages of CKD and continuing on KRT.
Those who stop KRT do not start conservative care, as
such (Figure 1), but transition to supportive care becoming
the predominant domain. Individuals contemplating KRT
cessation are likely to have complex social, psychospiritual,
symptom, and informational needs (Figure 4). These re-
quirements for supportive care must be met alongside deci-
sion support before and during withdrawal, and, if chosen,
end-of-life care after discontinuation.
B Hole et al.: Supportive care for ESKD ISN public affairs
Kidney International Supplements (2020) 10, e86–e94 e91
Withdrawal from KRT is reported for up to 30% of people
who receive dialysis in HICs.
35
Marked variation in with-
drawal rates between countries may reect differences in
culture, practice, and denitions of dialysis withdrawal.
36
A
unied denition would enable the generation of higher-
quality evidence to inform discussions regarding cessation
of KRT.
37
Increasing levels of comorbidity, including cogni-
tive impairment, are likely to explain at least some of the
increase in withdrawal from dialysis.
36
To ensure that in-
dividualswishes regarding dialysis continuation and with-
drawal are respected, these must be discussed and recorded
(e.g., as part of advance-care planning).
After KRT withdrawal, individuals enter an end-of-life
phase and most die within days to weeks.
38
HICs are likely to
have established systems for delivery of supportive care, such as
palliative care clinicians, hospice care, and access to essential
medications. It is important that individuals withdrawing from
KRT can access such services. This does not always happen,
however, even in HICs in this relatively controlled setting, and
death after withdrawal from dialysis does not guarantee
exemplary symptom control.
39,40
Given the morbidity and
vulnerability of this group, there is an urgent need for metrics
and surveillance systems that can quality assure the palliative
care received by people at this crucial stage in their treatment.
Improved evidence is required regarding medicinal and non-
medicinal treatment of symptoms after withdrawal of KRT.
1
Recommendations.
Supportive care for all individuals on KRT should include
discussion of withdrawal and the opportunity for them to
share their values and preferences regarding it. This should
include development of advance-care plans and directives.
Access to end-of-life supportive care should be universal for
individuals who withdraw from KRT.
Metrics are required to assess the quality of end-of-life
supportive care for individuals who withdraw from KRT.
A unied denition of dialysis withdrawal should be
operationalized. Data relating to quality of death are
needed, but care must be taken not to burden patients and
their families during this period.
Improved evidence is required to facilitate generation of
guidelines for the management of symptoms experienced
by individuals withdrawing from dialysis.
Setting D: people receiving KRT in low- and middle-income
countries
This section examines the role of supportive care for in-
dividuals on KRT or withdrawing from KRT in low- and
middle-income countries. Similar to HICs, these individuals
are likely to have complex health histories including preven-
tive, kidney, and supportive care requirements. Deciencies in
palliative care services are likely to impact the availability of
support for social, psychospiritual, symptom, and informa-
tional needs of individuals receiving KRT in this setting.
33
Although some patients will elect to withdraw from KRT
for clinical reasons (comparable with those discussed in
setting C) and many because of nancial hardship, an infre-
quent but important group is those who are compelled to
stop for reasons beyond their control. Choice-restricted KRT
withdrawal after treatment provider/transplant immune
suppression supplier collapse or natural disaster is cata-
strophic for individuals with ESKD and requires surveillance
and reporting at an international level, given the resultant
avoidable death and suffering (Figure 5).
The treatment priority for individuals mandated to stop
owing to provider collapse or natural disaster is re-
establishment of KRT as quickly as possible. When
Decision support
Decision support
Blood pressure and glucose control, renin/angiotensin system blockade
Management of diabetes mellitus: educaon, diet, medicaon, monitoring for end-organ disease
Bereavement care
CKD diagnosed
Time
Preparaon for transplantaon
Major health event (e.g., stroke)
Preparaon for dialysis
Death
Decision support
Peritoneal dialysis
Withdrawal
Advance-care planning
Symptom control
Social, emoonal, spiritual, and informaonal support
Worsening of condion
Figure 4 | Hypothetical patient journey showing variation in components of kidney care with disease/time progression. In this
example, a major health event necessitates changes to all components of kidney care, culminating in a discrete shift to a purely supportive
approach with the withdrawal of dialysis. Light-blue boxes, preventive care; yellow boxes, kidney care; green boxes, supportive care. CKD,
chronic kidney disease.
ISN public affairs B Hole et al.: Supportive care for ESKD
e92 Kidney International Supplements (2020) 10, e86–e94
impossible, supportive care for those dying from ESKD is
required. Individuals in this setting are likely to be substan-
tially younger and less comorbid than those withdrawing
from KRT in HICs. Evidence relating to survival and symp-
tom control cannot be extrapolated between these settings.
Recommendations.
Supportive care should be available to all individuals on KRT.
For individuals who withdraw from KRT, intensive sup-
portive and kidney care should be instituted with efforts
made to prolong life, where possible.
When individuals are mandated to withdraw from KRT due
to collapse of a provider or natural disaster, the priority
should be the re-establishment of KRT.
Events in which individuals are compelled to withdraw
from KRT should be recorded and reported, as should
deaths due to dialysis withdrawal.
Although the challenges must not be underestimated, it is
possible to provide good supportive care in all 4 of these
settings. To illustrate this, 4 of the co-authors have provided a
case study from their recent practice (EB, CZ, MB, and MM)
(Supplementary Case Studies).
Conclusion
Supportive care must be an integral part of the care of people
with advanced CKD those approaching ESKD, those on
KRT, and those withdrawing from KRT. To achieve this in all
countries of the world, regardless of economic situation, we
have identied 5 themes for work covering patient informa-
tion provision, evidence-based guidance, processes and met-
rics for measurement, clear communication, and alignment
with other chronic disease supply chains and infrastructure.
Each of these will need tailoring to be context-sensitive. There
is a lot of work to be done, but also a lot we can learn from
examples of good practice already in place in high- and low-
and middle-income countries.
DISCLOSURE
Publication of this article was supported by the International Society of
Nephrology.
PGB has received lecture fees from Baxter; GGG has received grant support
from CloudCath and ICON Clinical Research, Ltd. RLM has received lecture fees
from Baxter Healthcare and Amgen One, receives current grant support from
Australian National Health and Medical Research Council (NHMRC) Translating
Research into Practice Fellowship and Kidney Health Australia Project Grant,
and has grants under negotiation with the Australian NHMRC Project Grant
(Can Symptom monitoring With Feedback to clinicians improve the lives of
people on dialysis? [SWIFT]). JP has received consulting fees from Baxter and
DaVita; lecture fees from Baxter, DaVita, Dialysis Clinic, Inc., and Fresenius
Medical Care; and grant support from the Arbor Research Collaborative for
Health. RCW has received grant support from Lotteries Health Research Grant
and Baxter Health Care (Clinical Evidence Council [CEC] research grant). SJD
has received grant support from Baxter Health Care (CEC and Extramural
Research Grants). All the other authors declared no competing interests.
Dialysis
Decision support
Management of nephropathy
Management of HIV infecon
ESKD
Preparaon for dialysis
Death
Symptom control
HIV and CKD diagnosed
Dialysis
Decision support
Management of nephropathy
Management of HIV infecon
Preparaon for dialysis
Death
Symptom control
Choice-restricted
withdrawal
a
b
Early death and avoidable
suffering following choice-
restricted dialysis disconnuaon
ESKD
HIV and CKD diagnosed
Figure 5 | Hypothetical patient stories. (a) Patient A starts dialysis for HIV-associated nephropathy and dies while in receipt of kidney
replacement therapy. (b) Patient B follows the same initial trajectory, but when the dialysis provider abruptly goes out of business or
withdraws from the market, the patient has no option but to transition to choice-restricted conservative care. Patient B dies prematurely and
experiences an abrupt onset of palliative care needs at the point of dialysis discontinuation. Light-blue boxes, preventive care; yellow boxes,
kidney care; green boxes, supportive care. CKD, chronic kidney disease; ESKD, end-stage kidney disease.
B Hole et al.: Supportive care for ESKD ISN public affairs
Kidney International Supplements (2020) 10, e86–e94 e93
ACKNOWLEDGMENTS
This manuscript emerged as an individual product of the
International Society of Nephrologys 2nd Global Kidney Health
Summit held in Sharjah, United Arab Emirates, in March 2018, and
portions of the material in this document have been published in the
full report from the Summit (Harris DCH, Davies SJ, Finkelstein FO,
et al. Increasing access to integrated ESKD care as part of universal
health coverage. Kidney Int. 2019;95:S1S33
2
). In addition to the
International Society of Nephrology, support of the Summit was
provided through unrestricted grants from Baxter and BBraun.
SUPPLEMENTARY MATERIAL
Supplementary File (Word)
Case Studies.
Setting A: Comprehensive conservative care in a high-income coun-
try. Mark Brown, Department of Renal Medicine, St. George Hospital,
Sydney, New South Wales, Australia.
Setting B: Comprehensive conservative care in a low- or middle-
income country. Carlos Zuniga, School of Medicine, Catholic Univer-
sity of Santisima Concepción, Concepcion, Chile.
Setting C: Withdrawing dialysis in a high-income country. Edwina
Brown, Imperial College Healthcare NHS Trust, London, UK.
Setting D: Withdrawing KRT in a low- or middle-income country.
Mignon I. McCulloch, Paediatric Intensive and Critical Unit, Red Cross
War Memorial Childrens Hospital, University of Cape Town, Cape
Town, South Africa.
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... The KSPC model of care aims to maximise symptom relief and enhance QoL for individuals on KRT and make informed decisions regarding withdrawal from KRT if patients and families are unable to cope with the disease burden (Chao et al., 2016). Patients on KRT were referred to KSPC service by their nephrologist if patients had persistent high symptom burden or were wishing to come off dialysis (Hole et al., 2020). The social worker consultations consisted of 30−60 min assessment of psychosocial issues and as well as discussion regarding suitable KRT modalities (Phase 1) and recommendations to ameliorate psychosocial issues. ...
... In this multicentre study evaluating the differences in psychosocial needs of patients with kidney failure in the pre-or start of KRT and KSPC phases of illness needing social worker intervention, we found The interrelatedness of the physical, psychological and social impact of kidney failure on QoL highlights the need for a comprehensive and integrated approach to providing kidney support services (Han et al., 2019). Appropriate management of pre-KRT and patients receiving KSPC is essential for optimal patient outcomes (Gerogianni & Babatsikou, 2014;Hole et al., 2020;Holley, 2007;Janmaat et al., 2018;Owen et al., 2006;Spigolon et al., 2016). ...
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Background: People with kidney failure face a multitude of psychosocial stressors that affect disease trajectory and health outcomes. Objectives: To investigate psychosocial factors affecting people with kidney failure before or at start of kidney replacement therapy (KRT) and kidney supportive and palliative care (KSPC) phases of illness and to explore role of social worker during the illness trajectory. Methods: We conducted a secondary data audit of patients either before or at start of KRT (Phase 1) and at the KSPC (Phase 2) of illness and had psychosocial assessments between March 2012 and March 2020 in an Australian setting. Results: Seventy-nine individuals, aged 70 ± 12 years, had at least two psychosocial assessments, one in each of the two phases of illness. The median time between social worker evaluations in Phase 1 and Phase 2 was 522 (116-943) days. Adjustment to illness and treatment (90%) was the most prevalent psychosocial issue identified in Phase 1, which declined to 39% in Phase 2. Need for aged care assistance (7.6%-63%; p < 0.001) and carer support (7.6%-42%; p < 0.001) increased significantly from Phase 1 to Phase 2. There was a significant increase in psychosocial interventions by the social worker in Phase 2, including supportive counselling (53%-73%; p < 0.05), provision of education and information (43%-65%; p < 0.01), and referrals (28%-62%; p < 0.01). Conclusion: Adults nearing or at the start of KRT experience immense psychosocial burden and adaptive demands that recognisably change during the course of illness. The positive role played by the nephrology social worker warrants further investigation.
... Multiple studies are currently underway to identify a validated prognostic assessment tool or frailty index specifically for patients receiving dialysis. 88,103,104 Identifying the appropriate patients early and delivering open discussion pertaining to dialysis withdrawal provide additional time for patients to process the information and have autonomy over the decision relating to the life-and-death situation.Furthermore, some of the medical and psychosocial burdens may be modifiable, and addressing these issues early may avoid the need for dialysis withdrawal.42,54,105 Clinicians need to overcome the fear of selecting the 'wrong' patients for dialysis withdrawal as a singletimepoint decision and to re-evaluate the appropriateness of dialysis withdrawal through ongoing conversation in multiple clinical settings via the shared decision-making process. ...
... Withdrawal decisions are often guided by financial constraints, which are unlikely to change in the foreseeable future due to economic inequality. Nevertheless, once the decision of dialysis withdrawal is made, the care for the choicerestricted withdrawal process should remain the same as choicedriven dialysis withdrawal with focuses on symptom management and quality of life, taking into account the limited healthcare recourses for end-of-life care.54 ...
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... The improvement of only a simple symptom may change the mental and physical status and in uence the prognosis. We need the further randomized interventional studies to identify the effectiveness, costs, and opportunity costs of providing supportive care in patients receiving hemodialysis [20] ( Table 2, Supplementary le 3: Table S1). ...
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... High-quality care for patients with serious illness incorporates palliative care practices that enable patients to plan for their care and prepare for end of life (1,2). Hemodialysis providers poorly grasp their patients' health priorities and fail to recognize when patients prioritize treatment of symptoms or relief of suffering over life extension (3). ...
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Introduction Chronic renal failure as a progressive pathological process can reduce patient quality of life. This study aimed to investigate the effect of spirituality-oriented psychological counseling (SOPC) on fear of death (FOD) among hemodialysis patients. Methods This randomized controlled trial was conducted in 2019-2020. Through convenience sampling, 66 hemodialysis patients were selected and randomly assigned to either an intervention or control group in Modares hospital in Saveh, Iran. Each patient was evaluated pre-and post-intervention by the Collett-Lester Fear of Death Scale. Both groups received routine spiritual care weekly. But the intervention group received additional psychological counseling named SOPC. The SOPC comprised six sessions conducted for 45 minutes every day. This trial was registered in the Iranian Registry of Clinical Trials (RCT No. IRCT20161210031328N10). Results There was no significant difference between the intervention and control group on FOD (60.75±15.72 vs. 61.48±16.23, p=0.26), before the intervention. However, after the intervention, the FOD in the intervention group was significantly less than the control group (35.01±15.23 vs. 60.72±16.79, p=0.01). The mean score of FOD in the intervention group had a significant decrease after the intervention (p=0.01). While the score of FOD in the control group has no significant difference after the intervention (p=0.26). Conclusion This study shows that the SOPC reduces the FOD in Shia-Muslim hemodialysis patients. It is suggested that further studies be conducted on the effect of the SOPC on the FOD in other populations as well.
Thesis
Les Interventions Non-Médicamenteuses (INM), et autres procédures qui peuvent leur être associées (Médecine Traditionnelle, Médecines Complémentaires et Alternatives), sont aujourd’hui d’une prépondérance à ne pas sous-estimer dans l’optique d’une santé intégrative. Une évaluation scientifique robuste est nécessaire afin de trier les pratiques néfastes ou inefficaces, de celles attestant de réels bénéfices. Dans ce domaine, les essais randomisés contrôlés (ERC) font loi, à un titre discutable du fait de leurs limites intrinsèques. Par le biais d’une revue systématique de littérature centrée sur les pratiques de manipulation corporelles comme soins de support proposés en oncologie, nous confirmons la difficulté qu’ont les ERCs de tirer des conclusions fermes et bien appuyées. Nous présentons alors une méthode interventionnelle différente et peu enseignée, les protocoles expérimentaux à cas unique, et proposons leur illustration à travers quatre études. Celles-ci portent sur l’évaluation de différentes interventions dans des contextes de maladies chroniques ou de problèmes de santé variables : 1) Jeu vidéo thérapeutique dans le cadre de la réadaptation physique de la maladie de Parkinson, 2) Intervention musicale en Soins Palliatifs, 3) Hypnose face aux restrictions hydriques de patients sous hémodialyse et 4) Séances de shiatsu face à la dysménorrhée primaire. Ces études rendent compte de résultats intéressants, et permettent de discuter des forces et faiblesses de cette méthode. Nous plaidons alors en sa faveur du fait de ses principes expérimentaux légitimes ainsi que son adéquation avec la pratique fondée sur la preuve. Nous profitons enfin de la faible qualité des études que nous avons menées pour dresser une liste de recommandations et d’écueils à considérer afin de les employer de façon optimale.
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The global nephrology community recognises the need for a cohesive plan to address the problem of chronic kidney disease (CKD). In July, 2016, the International Society of Nephrology hosted a CKD summit of more than 85 people with diverse expertise and professional backgrounds from around the globe. The purpose was to identify and prioritise key activities for the next 5–10 years in the domains of clinical care, research, and advocacy and to create an action plan and performance framework based on ten themes: strengthen CKD surveillance; tackle major risk factors for CKD; reduce acute kidney injury—a special risk factor for CKD; enhance understanding of the genetic causes of CKD; establish better diagnostic methods in CKD; improve understanding of the natural course of CKD; assess and implement established treatment options in patients with CKD; improve management of symptoms and complications of CKD; develop novel therapeutic interventions to slow CKD progression and reduce CKD complications; and increase the quantity and quality of clinical trials in CKD. Each group produced a prioritised list of goals, activities, and a set of key deliverable objectives for each of the themes. The intended users of this action plan are clinicians, patients, scientists, industry partners, governments, and advocacy organisations. Implementation of this integrated comprehensive plan will benefit people who are at risk for or affected by CKD worldwide.