Armijo et al.

BMC Palliative Care (2023) 22:5 BMC Palliative Care

https://doi.org/10.1186/s12904-022-01122-z

RESEARCH Open Access

Estimation of the demand for palliative care

in non‑oncologic patients in Chile
Nicolás Armijo1 , Tomás Abbot1, Manuel Espinoza1,2* , Ximena Neculhueque3 and Carlos Balmaceda1,2,4

Abstract
Background Access to palliative care is an emerging global public health challenge. In Chile, a palliative care law was
recently enacted to extend palliative care coverage to the non-oncologic population. Thus, a reliable and legitimate
estimate of the demand for palliative care is needed for proper health policy planning.
Objective To estimate the demand for Palliative Care in Chile.
Methodology Diseases likely to require palliative care were identified according to literature and expert judgement.
Annual deaths of diseases identified were estimated for the periods 2018–2020. Demand estimation corresponds
to the identification of the proportion of deceased patients requiring palliative care based on the burden of severe
health-related suffering. Finally, patient-years were estimated based on the expected survival adjustment.
Results The estimated demand for palliative care varies between 25,650 and 21,679 patients depending on the
approximation used. In terms of annual demand, this varies between 1,442 and 10,964 patient-years. The estimated
need has a minor variation between 2018 and 2019 of 0.85% on average, while 2020 shows a slightly higher decrease
(7.26%).
Conclusion This is a replicable method for estimating the demand of palliative care in other jurisdictions. Future
studies could approach the demand based on the decedent population and living one for a more precise estima-
tion and better-informed health planning. It is hoped that our methodological approach will serve as an input for
implementing the palliative care law in Chile, and as an example of estimating the demand for palliative care in other
jurisdictions.
Keywords Palliative care, Mortality, Health services needs and demand, Chronic disease, Comorbidity, Forecasting

Background
Palliative care (PC) is the active total care of patients
whose disease does not respond to curative treatment.
PC aims to achieve the best possible quality of life for
*Correspondence: patients and their families [1]. World Health Organiza-
Manuel Espinoza tion (WHO) emphasizes that PC is a component of uni-
[email protected] versal health coverage, integrated into the Sustainable
1
Health Technology Assessment Unit, Clinical Research Center, School
of Medicine, Pontificia Universidad Católica de Chile, Santiago, Chile Development Goals. [2–4].
2
Department of Public Health, Faculty of Medicine, Health Technology PC is not only designed for patients with end-stage
Assessment Unit, Clinical Research Center, School of Medicine, Pontificia cancer but also for people suffering from non-oncolog-
Universidad Católica de Chile, Pontificia Universidad Católica de Chile,
Diagonal Paraguay, 362 Santiago, Chile ical diseases from stages before the so-called end-of-life
3
Ministry of Health, Santiago, Chile stage [5]. PC is focused on those patients who experi-
4
Centre for Health Economics, University of York, York, UK ence severe health-related suffering (SHS), that is when

© The Author(s) 2023. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which
permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the
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Armijo et al. BMC Palliative Care (2023) 22:5 Page 2 of 7

the suffering produced by an injury or illness cannot be the healthcare sector adequately. Although some efforts
alleviated without the intervention of a professional and have been made to develop estimates of the population
when it compromises physical, social, spiritual, and/or in need of PC [6, 7, 19, 26–32]; none of them has reached
emotional functioning [6]. Thus, people suffering from the technical robustness and legitimacy to support the
a disease with SHS can benefit from PC, which not only national health policy. This report is the result of the
contemplate therapies focused on managing the pathol- collaboration between the Ministry of Health of Chile

understand and manage ─ more efficiently ─ the distress-

ogy, but also those actions and research-oriented to (MoH) and the technical group of Health Technology
Assessment at Pontificia Universidad Católica de Chile,
ing clinical complications suffered by these patients [7]. to generate a validated methodology and a reliable esti-
Access to PC is an emerging challenge for global pub- mate of the demand for PC in Chile.
lic health. Patients with diseases that require end-of-life
PC experience a significant economic burden [8]. Several Methodology
studies have reported that the costs related to end-of-life To estimate the need for PC, we considered the aim of the
care represent around 25–30% of insurer medical expen- law project proposed by the Chilean Ministry of health,
ditures [9–11]. In addition, there is a relevant cost com- which is to provide PC coverage in the last year of life
ponent related to patient care that is incurred by society. through domiciliary care. Thus, a retrospective approach
[12–14]. Thus, access to PC in the coverage schemes was used based on annual death records. This approach
should be prioritized because the evidence supports that assumes that the number of people needing palliative
this health service alleviates the suffering of patients, care during the year represents those who finally died
families, and saves money for healthcare systems and during the same period. This approach is considered
society [15–17]. Moreover, annually more than 61 mil- adequate in those cases where palliative care services are
lion people worldwide experience about 6 billion days focused on providing end-of-life care [6, 28, 31], which is
of SHS that can be potentially alleviated with access to a precisely the purpose of the present study.
PC [18]. Regarding the need for PC, it is estimated that The estimation of the need for PC was carried out
by 2060, 47% of worldwide deaths will experience a high according to the following steps: (1) Identification of the
SHS burden, potentially requiring PC [19]. diseases susceptible to receiving non-oncological PC; (2)
Chile has made progress in providing access to PC Estimation of the annual deaths whose cause corresponds
since the implementation of the Explicit Health Guar- to the group of diseases identified; (3) Estimation of the
antees (GES) regime, which included access to a set of proportion of deceased patients for each disease that will
PC services for cancer patients [20]. Although this is an require palliative care; (4) Estimation of the number of
important achievement, there is still a need to promote patient-years based on the expected survival adjustment.
interdisciplinary management, provide continuous care
with good quality home assistance and extend its cover- Identification of diseases susceptible to receiving
age to non-oncologic diseases. [21]. non‑oncologic palliative care
According to the Global Atlas of Palliative Care report, There are several sources related to the identification
around 30% of the population requiring PC are patients of diseases susceptible to receiving PC. Three different
with malignant neoplasms [9]. In the Chilean settings, the approaches were considered to explore those variations
latter reveals a major gap in terms of access to PC, with for the identification of diseases susceptible to non-
a significant fraction of the target population (around oncologic PC. For the first approach, a group of diseases
70% of patients who experience SHS) excluded from the defined according to their ICD-10 category (Interna-
social security system. Regarding the distributional con- tional Classification of Diseases, 10th edition) were iden-
sequences of the lack of access, this is more detrimental tified based on the proposal of Murtagh et al.[28] and the
to patients with low socioeconomic status, since they Lancet Commission report [6], which included a larger
tend to have greater barriers to access to health care, and number of diseases. In addition, we validated this list
therefore, to PC [22]. In addition, the demand for non- with local clinical experts (a physician specializing in PC
oncological PC may be increasing by demographic and with more than ten years of clinical expertise, academic
epidemiological changes that result in a high incidence of training in this field and advisor experience to the Health
complications of chronic diseases. [9, 23, 24]. Ministry in PC policies), which led to the incorporation
However, in the context of a new palliative care law some additional codes. Oncologic pathologies were dis-
which was recently launched in Chile [25], PC services carded, but the code for specific neoplasms associated
will be expanded to patients with non-oncologic diseases. with HIV.
For this purpose, the local authority required a precise For the second approach, we restricted the set of dis-
estimate of the resources needed to provide them to eases identified in the first approach excluding those,
Armijo et al. BMC Palliative Care (2023) 22:5 Page 3 of 7

according to expert judgment, who have a low probabil- derivation was obtained from Jordan et al. [34]. This
ity of utilization of PC for end-of-life care. They included study reported an average oncologic PC LOS of 28 days
HIV-related infectious diseases, acute life-threatening and 24.27 days for non-oncologic PC LOS. Consequently,
diseases such as acute myocardial infarction, pulmonary 13.3% of reduction was calculated and applied to Chil-
embolism, acute pericarditis, acute myocarditis, acute ean data regarding the average oncologic PC. In addi-
renal failure, or infectious diseases of the respiratory sys- tion, there is an average of 180 days of survival for cancer
tem. The main assumption is that the patient suffering patients who receive PC in Chile [35]. Thus, the expected
any of these conditions as the cause of death and diag- average non-oncologic average PC LOS were 156 days.
nosed close to the date of death, would not have been a This approach assumes that the hazard of death between
candidate for PC before that date. Finally, for the third day one and the day end of the month is constant. This
approach, we used the group of pathologies proposed value provides information for forecasting deaths and
by Murtagh et al. [28]. The groups of pathologies to be can be applied to allocating resources to palliative care.
considered for each approach, together with the ICD-10
codes, are presented in Table 1. Results
Table 2 presents the total deaths and the population that
Estimate of annual deaths will effectively require PC according to the diseases sus-
Data on the number and causes of death were obtained ceptible to receiving non-oncologic PC for each one of
from the Department of Health Statistics and Informa- the proposed approaches over the years 2018–2020. An
tion of the MoH which is publicly available [33]. This average variation (considering estimates i, ii, and iii) of
provides cause of death data for each fatality in Chile 0.85% is observed between the periods 2018–2019; and
and other demographic details. These data were filtered an average decrease of 7.26% between the periods 2019–
according to the cause of death for 2018–2020 and by 2020. It should be noted, that for approaches (i) and (iii),
month. about 55% of the registered deaths would require PC,
whereas, for the approach (ii), the proportion is about
Estimate the proportion of deceased patients for each 61%.
disease receiving palliative care Regarding the expected PC LOS for non-oncologic
To estimate the proportion of deceased patients receiving diseases, Table 3 reports the total PC LOS expected by
PC for each disease, we used the weights developed by the three estimates. It is shown a minimum of 526,149
the Lancet Commission [6]. Briefly, the expert’s commis- days and a maximum of 4,001,950 days. Moreover, it is
sion developed a multiplier that informs the proportion expected between 1,442 and 10,964 patient-years when
of people from each health condition experiencing SHS standardization is applied.
[6] and hence who required PC. For those pathologies
not considered by the Lancet Commission, similarities Discussion
were discussed with clinical experts to match each code The present study estimated the expected number of
in order to provide an equal proportion of palliative care patients who need PC in one year in Chile, evaluating dif-
needs [6]. Supplementary Table 1 reports the proportion ferent scenarios. Estimates range from 12,825 to 10,839
of patients who will require PC for each pathology. We patient-years, with a minor variation between 2018 and
applied this approach to all scenarios, including the one 2019 of 0.85% on average, and a more significant decrease
that considers the set of pathologies reported by Murtagh in 2020 (7.26%). The variation in the need for PC in
et al. the 2020 period could be explained by the fact that the
groups of diseases considered in our estimate could be an
Estimation of the number of patient‑years based aggravating factor for the mortality of COVID-19 [36],
on the expected survival adjustment with this disease being the main cause of death.
The purpose of the present study was to estimate the This is the first estimate of the need for PC for non-
demand expressed as the number of patient-years. This oncology patients in Chile and South America. However,
estimate is equivalent to the expected number of patients other studies have reported some estimates worldwide
who will require PC for a whole year. Standardization is [19] [7], England [1, 37], Scotland [38], Australia [29],
needed because not all patients who die in a year require Germany [30], Italy [39], and Malaysia [31]. Nevertheless,
the same amount of PC time. While some will require a different estimates used alternative methodologies and
few days, others will require full-year support. a different health conditions. In this context, alternative
To estimate the average non-oncologic PC length of approaches like the one reported in this manuscript may
stay (LOS), similar derivation between oncologic and add value because it proposes a new set of conditions
non-oncologic average PC LOS were assumed. This
Table 1 Health conditions are included in the estimate of the population requiring palliative care
The proposed list of diseases CD-10 Code Health condition

(i) The list of diseases proposed by Murtagh et al., considering B20-B24, F01-F04, G10, G12, G20-G26, G30, G35-G37, G90.3, Diseases caused by Human Immunodeficiency Virus (HIV), Organic
the groups of diseases analyzed by the Lancet Commission. I00-I52, I60-I69, J06, J09, J10-J18, J20 -J22, J40-J47, J60-J65, J96, mental disorders, including symptomatic disorders, Extrapy-
K70-K77, N17-N19, N28, R54, M00-M97 ramidal and other movement disorders, other degenerative CNS
Armijo et al. BMC Palliative Care

disorders. Demyelinating CNS conditions; cerebral palsy and other

paralytic syndromes, Acute rheumatic fever, chronic rheumatic
heart disease, Hypertensive diseases, Ischemic heart disease, Pul-
monary heart disease and diseases of the pulmonary circulation,
Other forms of heart disease, Cerebrovascular diseases, Chronic
lung disease, lung disease due to external agents, interstitial lung
(2023) 22:5

disease, other diseases of the respiratory system, Other diseases

of the respiratory system, Liver disease, Lung failure, Lung disease
due to external agents, Interstitial lung disease, other diseases
of the respiratory system, liver disease, renal failure, senility, and
musculoskeletal disease.
(ii) The list of diseases proposed by Murtagh et al. contrasted B21, F01-F04, G10, G12, G20-G26, G30, G35-G37, G90.3, I00-I52 The following diseases were excluded: Infectious and parasitic
with the groups of diseases analyzed by the Lancet Commission (except I21, I24, I26, I30, I40), I60-I69, J40-J47, J60-J65, J96, K70- diseases resulting from Human Immunodeficiency Virus (HIV),
(restricted). K77, N18-N19, N28, R54, M00-M97 Other specified diseases resulting from Human Immunodeficiency
Virus (HIV), Other conditions resulting from Human Immuno-
deficiency Virus, Unspecified diseases resulting from Human
Immunodeficiency Virus (HIV), Acute myocardial infarction, Other
acute ischemic heart disease, Pulmonary embolism, Acute pericar-
ditis, Acute myocarditis, Acute upper respiratory infections from
multiple sites, and Unspecified sites, Influenza due to identified
zoonotic or pandemic influenza viruses, Influenza due to identi-
fied seasonal influenza viruses, Influenza, unidentified virus, Viral
pneumonia, not elsewhere classified, Pneumonia due to Strepto-
coccus pneumonia, Pneumonia due to Haemophilus influenzae,
Bacterial pneumonia, not elsewhere classified, Pneumonia due to
other infectious organisms not elsewhere classified, Pneumonia
in diseases classified elsewhere, Pneumonia, organism unspeci-
fied Acute bronchitis, Acute bronchiolitis, Acute lower respiratory
infection unspecified.
(iii) Diseases included in Murtagh et al. B20-B24, F01, F03, G10, G12.2, G20, G23.1, G30, G35, G90.3, I00- Diseases caused by Human Immunodeficiency Virus (HIV), Organic
I52, I60-I69, J06-J18, J20-J22, J40-J47, J96, K70-K77, N17, N18, N28, mental disorders, Demyelinating diseases of the central nervous
R54. system, Parkinson’s disease, Huntington’s disease, Multisystem
degeneration, Acute rheumatic fever, chronic rheumatic heart
disease, Hypertensive diseases, Ischemic heart disease, Pulmo-
nary heart disease and diseases of the pulmonary circulation,
Cerebrovascular diseases, Acute upper respiratory tract infections,
Influenza and Pneumonia, Liver diseases, Renal failure, Senility.
Page 4 of 7
Armijo et al. BMC Palliative Care (2023) 22:5 Page 5 of 7

Table 2 Annual decreases and estimated population requiring palliative care for the years 2018, 2019, and 2020
2018 2019 2020

Approach Decedents PC Decedents PC Decedents PC Average PC

Estimate (i) 47,323 26,073 48,610 26,525 44,555 24,352 25,650
Estimate (ii) 36,022 22,110 35,953 21,831 34,267 21,095 21,679
Estimate (iii) 46,410 25,501 47,713 25,959 43,742 23,838 25,099
PC Palliative care. Estimate (i): Group of diseases proposed by Murtagh et al. and considering the groups of diseases analysed by the Lancet Commission. Estimate (ii):
Estimate (i) restricted. Estimate (iii): Group of diseases proposed by Murtagh et al.

Table 3 Expected non-oncologic palliative care length of stay The results obtained allow us to identify the first chal-
and patient years lenges of implementing PC at the primary health care
Approach PC ­LOSa Patient ­yearsa PC ­LOSb Patient ­yearsb level. This is of utmost importance as primary health care
has an essential role to play in the fight against health
Estimate (i) 622,526 1,706 4,001,950 10,964 inequities. Integrating non-oncological PC into primary
Estimate (ii) 526,149 1,442 3,382,389 9,267 health care could help to reduce these inequalities, some-
Estimate (iii) 609,153 1,669 3,915,982 10,729 thing that specialist palliative care teams have not been
a
Jordan et al. non-oncologic PC LOS was used for the estimation. bnon- able to achieve [40].
oncologic PC LOS was estimate assuming same derivation between oncologic Our estimates have some limitations, the data are col-
and non-oncologic LOS of Jordan et al., and then applied to available Chilean
data lected according to death registries, which may be under-
reported. This may occur with diseases such as dementia
or Parkinson’s disease, which lack of registry may impact
that achieved consensus and legitimacy to support the
underestimating the need for PC [28, 41–43]. Also, as
demand estimates.
our estimate is based on the diagnosis of the first cause
Some of the differences between our approach and
of death, the need for PC may be underestimated because
others refer to the consideration of oncologic diseases.
of comorbidities that could increase its demand [19, 44,
As mentioned above, in Chile PC for cancer is provided
45]. Furthermore, although we used the weights validated
through a different coverage scheme (20). Regarding
by both the Lancet Commission expert panel and our
non-oncologic PC, through the weights revealed by the
experts (for those conditions not included in the Lancet
Lancet Commission, which inform the fraction of indi-
Commission), they are not precise estimates and should
viduals who will require PC by illness, based on SHS,
be validated in future research [19]. Additionally, our
our approach could be considered more refined in terms
non-oncologic PC LOS estimation lacks local reliable
of demand estimation [6, 9]. Most studies assumed that
data. The assumptions made may not reflect the average
all patients who will die from PC-susceptible disease
non-oncologic PC LOS despite the discussion with clini-
will receive such care, because this does not hold for all
cal expert. Therefore, new registers are needed in order
patients, an overestimation of the actual demand will
to make more accurate estimate.
occur [27, 28, 37].
Other methods of estimating PC demand have been
Although Etkind et al. attempt to address this issue by
reported [6, 32, 46, 47]. The Lancet Commission devel-
introducing pain prevalence in their estimates, the results
ops a robust estimate based on the deceased considering
of the present work can be understood as more accurate
that population in their last year of life, and of the non-
because the use of the SHS encompasses the require-
deceased, considering PC requirements before the last
ment for PC in more dimensions than pain, and because
year of life [6, 9]. To undertake the above approximation,
we considered a more individualized PC requirement
prevalence data are required for all disease groups con-
weight. In contrast, Etkind et al. considered an expected
sidered in the methodology, which is a major challenge
pain prevalence by disease groups (organ failure, demen-
for future research. In addition, given that the estimate
tia, and others) that might ignore within-group heteroge-
of the present study is within the context of a future law
neity [1].
on non-oncological PCs, this estimate is plausible since
Our estimation also considered the PC LOS needed.
the law considers, in the first place, PCs in the last six
This information is relevant as it allows us to make a
months of life.
more precise estimate of the expected annual demand.
Estimating the demand for PC is a key resource for
Thus, the range of total expected PC LOS was estimated
the planning of health policies that take care of the
between 1,442 and 10,964 patient year depending on the
lack of access to PC. Coverage of diseases requiring
set of assumptions made.
PC care needs to increase over time, as health policies
Armijo et al. BMC Palliative Care (2023) 22:5 Page 6 of 7

for non-oncological PC provision have the potential to Competing interests

The authors declare that they have no competing interests for this study.
alleviate the suffering of a large proportion of patients
and their families. It is hoped that this estimate will
allow accounting for the relevance of addressing this Received: 12 May 2022 Accepted: 16 December 2022
public health problem to organize patient-centred PC
provision, improve coordination of healthcare, and thus
strengthen the public health system by ensuring equity
in access to PC. References
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