Original Investigation | Geriatrics

Comparison of Palliative Care Delivery in the Last Year of Life Between Adults
With Terminal Noncancer Illness or Cancer
Kieran L. Quinn, MD, MSc; Pete Wegier, PhD; Therese A. Stukel, PhD; Anjie Huang, MSc; Chaim M. Bell, MD, PhD; Peter Tanuseputro, MD, MHSc

Abstract Key Points

Question How is palliative care being
IMPORTANCE Palliative care improves health outcomes, but studies of the differences in the
delivered to patients with noncancer
delivery of palliative care to patients with different types of serious illness are lacking.
illness (ie, chronic organ failure and
dementia), and is it being delivered
OBJECTIVE To examine the delivery of palliative care among adults in their last year of life who died
differently than for patients
of terminal noncancer illness compared with those who died of cancer.
with cancer?

DESIGN, SETTING, AND PARTICIPANTS This population-based cohort study used linked health Findings In this cohort study, among
administrative data of adults who received palliative care in their last year of life and died between 145 709 adults who died of cancer or
January 1, 2010, and December 31, 2017, in Ontario, Canada. terminal noncancer illness and received
palliative care in their last year of life,
EXPOSURES Cause of death (chronic organ failure, dementia, or cancer). palliative care was more likely to be
initiated earlier, initiated in the hospital
MAIN OUTCOMES AND MEASURES Components of palliative care delivery, including timing and setting, and delivered across multiple
location of initiation, model of care, physician mix, care settings, and location of death. care settings in patients with cancer
than in those with organ failure or
RESULTS A total of 145 709 adults received palliative care (median age, 78 years; interquartile dementia. Patients with cancer were
range, 67-86 years; 50.7% female); 21 054 died of chronic organ failure (4704 of heart failure, 5715 more likely to receive care using a
of chronic obstructive pulmonary disease, 3785 of end-stage kidney disease, 579 of cirrhosis, and consultative or specialist model instead
6271 of stroke), 14 033 died of dementia, and 110 622 died of cancer. Palliative care was initiated of a generalist model and received
earlier (>90 days before death) in patients with cancer (32 010 [28.9%]) than in those with organ palliative care more often from general
failure (3349 [15.9%]; absolute difference, 13.0%) or dementia (2148 [15.3%]; absolute difference, practitioners and physicians with
13.6%). A lower proportion of patients with cancer had palliative care initiated in the home (16 088 subspecialty training compared with
[14.5%]) compared with patients with chronic organ failure (6904 [32.8%]; absolute difference, patients with chronic organ failure or
−18.3%) or dementia (3922 [27.9%]; absolute difference, −13.4%). Patients with cancer received dementia.
palliative care across multiple care settings (92 107 [83.3%]) more often than patients with chronic
Meaning Differences in the delivery of
organ failure (12 061 [57.3%]; absolute difference, 26.0%) or dementia (7553 [53.8%]; absolute
palliative care across distinct types of
difference, 29.5%). Palliative care was more often delivered to patients with cancer (80 615 [72.9%])
serious illness have important
using a consultative or specialist instead of a generalist model compared with patients with chronic
implications for the organization and
organ failure (9114 [43.3%]; absolute difference, 29.6%) or dementia (5634 [40.1%]; absolute
scaled implementation of palliative care
difference, 32.8%). Patients with cancer (42 718 [38.6%]) received shared palliative care more often
programs, including enhancement of
from general practitioners and physicians with subspecialty training, compared with patients with
practitioner education and training and
chronic organ failure (3599 [17.1%]; absolute difference, 21.5%) or dementia (1989 [14.2%]; absolute
improvements in equitable access to
difference, 24.4%).
care across all settings.

CONCLUSIONS AND RELEVANCE In this cohort study, there were substantial patient- and
practitioner-level differences in the delivery of palliative care across distinct types of serious illness. + Supplemental content
These patient- and practitioner-level differences have important implications for the organization Author affiliations and article information are
and scaled implementation of palliative care programs, including enhancement of practitioner listed at the end of this article.

(continued)

Open Access. This is an open access article distributed under the terms of the CC-BY License.

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Abstract (continued)

education and training and improvements in equitable access to care across all settings.

JAMA Network Open. 2021;4(3):e210677.

Corrected on April 2, 2021. doi:10.1001/jamanetworkopen.2021.0677

Introduction
Palliative care improves quality of life, reduces symptom burden and unwanted health care use, and
helps patients die in their preferred location.1-6 Palliative care is the active holistic care of people and
their families experiencing suffering because of serious illness, especially near the end of life. It
focuses on the prevention, early identification, assessment, and management of physical issues,
including pain and other distressing symptoms, psychological distress, spiritual distress, and social
needs.7 However, studies1,4,8-11 contrasting palliative care for patients with cancer and those with
terminal noncancer illness report disparities in access and differences in the magnitude of its
associated benefits.
A population-based study9 of 235 159 adults who died in Ontario, Canada, found that patients
dying of cancer were more likely to receive palliative care than patients dying of noncancer illness,
which included chronic organ failure and dementia. Relative to their death, patients with cancer were
more likely to receive palliative care earlier than patients with noncancer illness. Prior population-
based research5,12 demonstrated associated benefits of certain components of palliative care among
74 986 patients dying with heart failure (HF). Patients who received palliative care in the home from
specialist palliative care practitioners had increased odds of a home death, a place where most
patients prefer to die.
The focus of practitioners, decision makers, and health services researchers is shifting from an
examination of the efficacy of palliative care across distinct types of serious illness to an examination
of the successful design of palliative care programs to scale and implement them. Although prior
research13 has evaluated differences in certain components of palliative care delivery for specific
conditions (eg, HF), there is limited evidence investigating how the type of serious illness a patient
has is associated with gaps in the delivery of multiple key components of palliative care. The current
study is novel because it describes how multiple key elements of palliative care are being delivered
across distinct types of serious illness at a population level with an aim to identify these gaps. The
objective of this study was to describe the delivery of palliative care among adults in their last year of
life who died of terminal noncancer illness (ie, chronic organ failure and dementia) compared with
those who died of cancer.

Methods
Study Design, Setting, and Data Sources
We conducted a population-based cohort study in Ontario, Canada, using linked clinical and health
administrative databases. Ontario is Canada’s most populous province, with more than 10 million
adults. All residents of Ontario have access to hospital care and physicians’ services, and those 65
years or older are provided universal prescription drug insurance coverage. The administrative data
sets used in this study were linked using encoded identifiers at the patient level at ICES (formerly the
Institute of Clinical and Evaluative Sciences) (eAppendix 1 in the Supplement). ICES is an
independent, nonprofit research institute whose legal status under Ontario’s health information
privacy law allows it to collect and analyze health care and demographic data, without consent, for
health system evaluation and improvement. These deidentified and encoded data sets are routinely
used to conduct studies that involve palliative care.4,5,9,14-16 Ethics approval was obtained from Sinai

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Health System’s Research Ethics Board. This study followed the Reporting of Studies Conducted
Using Observational Routinely-Collected Health Data (RECORD) reporting guidelines.17

Study Cohort
Our cohort included all Ontario adults (ⱖ18 years of age) who died of cancer or common terminal
noncancer causes and received newly physician-delivered palliative care in their last year of life
between January 1, 2010, and December 31, 2017. We identified the delivery of palliative care based
on a set of unique physician claims fee codes (eAppendix 2 in the Supplement).4,5,9,15,16,18,19 These
codes were created to specifically indicate the delivery of palliative care and are related to therapies
not intended to be curative, such as symptom management or counseling. We excluded patients
who received 2 or more palliative care claims in the year before their last year of life that indicated
prior engagement with palliative care or received their first palliative care visit within 7 days of death
because their practitioners would not likely have time to organize the necessary supports for a home
death. We considered these people likely to be interested in engaging with palliative care in their
approach to care. This new-user design is used in pharmacoepidemiologic studies and minimizes bias
by restricting analysis to persons who are initiating treatment because these people are more likely
to be similar at baseline when outcome risks are likely to vary over the time someone has been
receiving treatment.20

Types of Serious Illness

The study index date was 365 days before the patient’s death. The primary exposure was the
patient’s type of serious illness, categorized according to the cause of death as cancer or noncancer
illness. We defined terminal noncancer illness as HF, chronic obstructive pulmonary disease (COPD),
end-stage kidney disease (ESKD), cirrhosis, stroke, and dementia because these diseases represent
the most common terminal noncancer conditions.1,4-6,16,21-23 For the purposes of the analyses, we
further divided types of serious illness into cancer, chronic organ failure (HF, COPD, ESKD, cirrhosis,
or stroke), and dementia because these conditions are recognized as having unique trajectories of
functional decline at the end of life that may influence a person’s palliative care needs.9,21-23 Cause of
death was determined according to the International Statisitcal Classification of Diseases and Related
Health Problems—Tenth Revision, Canada (ICD-10-CA) disease code on the patient’s death certificate.
After the identification of differences in the outcome of timing of palliative care initiation
according to illness type, we conducted a prespecified, exploratory, hypothesis-generating analysis
using the timing of palliative care relative to death as the exposure to measure the potential
association of timing with location of death. The timing of palliative care was categorized according
to commonly used periods in the published literature: 30 days or less, 31 to 90 days, and 91 days or
more before death.11,24-31 Currently, there are no established standards on when to initiate
palliative care.

Patient Characteristics
We measured demographic and clinical variables, including age, sex, socioeconomic status, rural
location of residence, comorbidities and chronic conditions,32 and hospital frailty risk score,33 using a
5-year look-back period. We also measured year of death, use of acute health care services in the 1
year before the study index date, and the timing of first palliative care consultation relative to death.

Outcomes
The primary outcome was the timing of palliative care initiation, which we categorized according to
commonly used time frames within the published literature (ⱕ30 days, 31-90 days, and >90 days
before death).11,24-31 The secondary outcomes were (1) location of initiation (clinic, home, hospital,
subacute care, or case management), (2) model of care (generalist, consultive, or specialist palliative
care [see below for description]), (3) physician mix (general practitioners and specialists), (4) care
setting (outpatient, home based, inpatient, multiple locations, and case management), (5) total

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number of palliative care visits before death, and (6) location of death, which included home
(including nursing homes and hospice), hospital (including intensive care unit), and other (eAppendix
3 in the Supplement). Deaths that occurred in 1 of Ontario’s estimated 4300 palliative care unit beds
were categorized as other because they cannot be distinguished from other subacute care beds, such
as those in a rehabilitation hospital, using administrative data.
Most palliative care is delivered by general practitioners in Ontario. We considered physicians to
be palliative care specialists if their annual billing was comprised of more than 10% of palliative care
fee codes, which is based on a previously validated method with a sensitivity of 76.0% and a
specificity of 97.8%.19 Formal palliative care in Ontario is predominantly provided by physicians,
nurse practitioners, registered nurses, social workers and personal support workers in hospitals,
outpatient clinics, and at home. Patients generally require a referral from a physician to access
specialized palliative care services but such services may be provided by nonpalliative care specialists
without a referral.
We measured the delivery of 4 models of physician palliative care delivery.5,34 These models are
derived using the proportion of palliative care fee codes claimed by physicians, which classifies them
as a palliative care specialist or palliative care generalist as described above. The 4 models of palliative
care were (1) no physician-based palliative care (0% of claims are palliative fee codes), (2) generalist
palliative care (care is provided from a primary care physician or medical or surgical specialist, such as
an oncologist or general surgeon, whose annual billing is composed of ⱕ10% of palliative care fee
codes), (3) consultative palliative care (care provided by both palliative care specialists and
generalists), and (4) specialist palliative care (a physician whose annual billing is composed of >10%
of palliative care fee codes).
The setting of palliative care was determined using physician claims, which included the
locations in which care was delivered. There were 5 possible settings where palliative services could
be delivered: (1) clinic, (2) home, (3) inpatient setting, (4) multiple locations, and (5) third-party case
management settings.

Statistical Analysis
Descriptive statistics were used to measure patient characteristics, the delivery of palliative care, and
locations of death. The association between type of serious illness (using cancer as the comparator)
and the timing of palliative care relative to death (using ⱕ30 days as the reference) and the timing of
palliative care (using ⱕ30 days as the comparator) and the location of death (using home as the
reference) were estimated using a multinomial logistic generalized estimating equation approach.
After the identification of differences in the outcome of timing of palliative care initiation according
to illness type, we conducted a prespecified, exploratory, hypothesis-generating analysis using the
timing of palliative care relative to death as the exposure to measure the potential association of the
timing with the location of death. We stratified location of death outcomes by type of serious illness
because we did not intend to directly compare the magnitude of the associations given that they are
confounded by indication. Models were adjusted for age, sex, comorbidities, rurality, neighborhood
income, hospital frailty risk score, and total number of hospitalizations in the 1 year before the study
index date. We did not account for clustering by physician or facility because most people receive
end-of-life care from many physicians in multiple care settings.
We used standardized differences to identify important differences for all secondary outcomes.
Standardized differences (also known as the Cohen effect size index) of 0.2, 0.5, and 0.8 can be used
to represent small, medium, and large effect sizes, respectively. An effect size index of 0.1 or less is
considered to indicate good balance among variables.35 All analyses were performed using SAS
statistical software, version 9.4 (SAS Institute Inc).

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Results
Baseline Characteristics
A total of 145 709 adults (median age, 78 years; interquartile range [IQR], 67-86 years; 50.7% female;
12.8% living in rural locations) received palliative care (Figure 1). The median hospital frailty risk score
was 4 (IQR, 1-10) (Table 1). Among them, 21 054 died of chronic organ failure (4704 died of HF, 5715
of COPD, 3785 of ESKD, 579 of cirrhosis, and 6271 of stroke), 14 033 died of dementia, and 110 622
died of cancer.

Delivery of Palliative Care

Palliative care was initiated earlier (>90 days before death) in patients with cancer (32 010 [28.9%])
than in those with organ failure (3349 [15.9%]; absolute difference, 13.0%; standardized difference,
0.3) or dementia (2148 [15.3%]; absolute difference, 13.6%; standardized difference, 0.3) (Table 2).
After adjustment, patients dying of chronic organ failure had lower odds of palliative care initiation
at 91 days or more (adjusted odds ratio [aOR], 0.48; 95% CI, 0.46-0.51) and between 31 and 90 days
(aOR, 0.77; 95% CI, 0.75-0.80) relative to initiation at 30 days or less before death compared with
patients with cancer. Patients dying of dementia had a lower odds of palliative care initiation at 91
days or more (aOR 0.42; 95% CI, 0.40-0.45) and between 31 and 90 days (aOR, 0.60; 95% CI, 0.57-
0.62) relative to initiation at 30 days or less before death compared with patients with cancer
(Table 3). Baseline characteristics of the cohort according to the timing of palliative care initiation are
presented in eTable 1 in the Supplement. A lower proportion of patients with cancer had palliative
care initiated in the home (16 088 [14.5%]) compared with patients with chronic organ failure (6904
[32.8%]; absolute difference, −18.3%; standardized difference, 0.4) or dementia (3922 [27.9%];
absolute difference, −13.4%; standardized difference, 0.3). Patients with cancer received palliative
care across multiple care settings (92 107 [83.3%]) more often than patients with chronic organ
failure (12 061 [57.3%]; absolute difference, 26.0%; standardized difference, 0.6) or dementia (7553
[53.8%]; absolute difference, 29.5%; standardized difference, 0.7). Overall, patients with cancer
received more palliative care visits (median, 11 visits; IQR, 5-21 visits) than patients with chronic organ
failure (median, 4 visits; IQR, 2-9 visits; standardized difference, 0.8) and dementia (median, 4 visits;
IQR, 2-9 visits; standardized difference, 0.8) from initiation to death (Table 2).
The models of generalist and specialist palliative care along with the physician mix also differed
between patients with distinct types of serious illness and are presented in Table 2 along with
standardized differences for each distinct model. Palliative care was more often delivered to patients
with cancer using a consultative or specialist (80 615 [72.9%]) instead of a generalist model
compared with patients with chronic organ failure (9114 [43.3%]; absolute difference, 29.6%) or

Figure 1. Flow Diagram for the Creation of the Study Sample

351 941 Adults died from HF, COPD, ESKD, stroke, dementia,
or cancer between January 1, 2010, and December 31, 2017

206 232 Excluded from the study

21 054 Died of chronic
organ failure
105 587 No palliative care before death
48 525 Received ≥2 palliative care claims in
the 1 y before the last year of life
44 164 First palliative care visit was within 7 d of death
6712 Not OHIP eligible during study period
694 Not an Ontario resident
All adults who died of heart failure (HF), chronic
550 Age <19 y
obstructive pulmonary disease (COPD), end-stage
kidney disease (ESKD), stroke, dementia, or cancer
145 709 Eligible adults were assessed for inclusion in the study. Patients who
received their first consultation with palliative care
within the last year of life at least 7 days before death
14 033 Died of dementia 110 622 Died of cancer were included. OHIP indicates Ontario Health
Insurance Plan.

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dementia (5634 [40.1%]; absolute difference, 32.8%). Patients with cancer (42 718 [38.6%])
received palliative care more often from both general practitioners and physicians with subspecialty
training compared with patients with chronic organ failure (3599 [17.1%]; absolute difference, 21.5%;
standardized difference, 0.5) or dementia (1989 [14.2%]; absolute difference, 24.4%; standardized
difference, 0.6) (Table 2). The delivery of palliative care across all patients in the cohort according to
the timing of initiation is presented in eTable 2 in the Supplement.

Location of Death
A higher proportion of patients with cancer (69 208 [62.6%]) died at home compared with patients
with chronic organ failure (11 232 [53.3%]), but the proportion was lower than for patients with
dementia (10 520 [75.0%]) (Figure 2). Differences were found in the magnitude of the association
between timing of palliative care and location of death when comparing the different types of serious
illness. After adjustment, no association was found with timing of first palliative care consultation
(>90 days compared with ⱕ30 days before death) and the odds of dying in the hospital vs home
(30.4% vs 22.7%; aOR, 0.98; 95% CI, 0.95-1.02) among patients with cancer. The timing of first

Table 1. Baseline Characteristics of Patients Who Received Palliative Care in the Last Year of Life in Ontario
Between 2010 and 2017 by Illness Type According to Their Cause of Deatha

Cause of death Standardized difference

Chronic organ Chronic organ
failureb Dementia Cancer failure vs Dementia vs
Characteristic (n = 21 054) (n = 14 033) (n = 110 622) cancer cancer
Age, median (IQR), y 85 (78-90) 88 (83-92) 74 (65-83) 0.89 1.47
Female sex 11 495 (54.6) 8993 (64.1) 53 341 (48.2) 0.13 0.32
Rural residence 2372 (11.3) 1048 (7.5) 15 176 (13.7) 0.07 0.20
Income quintile
1 5173 (24.6) 3350 (23.9) 24 274 (21.9) 0.06 0.05
2 4554 (21.6) 3017 (21.5) 23 809 (21.5) 0 0
3 4061 (19.3) 2671 (19.0) 21 612 (19.5) 0.01 0.01
4 3635 (17.3) 2456 (17.5) 20 653 (18.7) 0.04 0.03
5 3550 (16.9) 2487 (17.7) 19 989 (18.1) 0.03 0.01
Missing 81 (0.4) 52 (0.4) 285 (0.3) 0.02 0.02
Hospital frailty risk score
Mean (SD) 11.5 (8.9) 14.3 (9.8) 5.0 (6.0) 0.85 1.14
Median (IQR) 10 (5-17) 13 (7-20) 3 (0-7) 0.92 1.17
Chronic conditions
Arrhythmia 7803 (37.1) 2782 (19.8) 15 107 (13.7) 0.56 0.17
Metastatic cancer 767 (3.6) 127 (0.9) 51 621 (46.7) 1.14 1.27
COPD 7122 (33.8) 1200 (8.6) 13 541 (12.2) 0.53 0.12
Congestive heart 8204 (39.0) 1884 (13.4) 8876 (8.0) 0.78 0.18
failure
Coronary artery 5299 (25.2) 1717 (12.2) 12 974 (11.7) 0.35 0.02
disease
Dementia 3786 (18.0) 8137 (58.0) 4834 (4.4) 0.44 1.42
Diabetes 6290 (29.9) 1922 (13.7) 24 560 (22.2) 0.26 0.13
Hypertension 18 434 (87.6) 11 593 (82.6) 75 771 (68.5) 0.47 0.33
Kidney disease 4545 (21.6) 1110 (7.9) 5967 (5.4) 0.49 0.10 Abbreviations: COPD, chronic obstructive pulmonary
Rheumatoid arthritis 812 (3.9) 403 (2.9) 2841 (2.6) 0.07 0.02 disease; IQR, interquartile range.
Stroke 5285 (25.1) 1514 (10.8) 6227 (5.6) 0.56 0.19 a
Data are presented as number (percentage) of
Prior health care use,c patients unless otherwise indicated.
median (IQR) b
Chronic organ failure included heart failure, COPD,
No. of unique 18 (11-25) 16 (10-22) 11 (0-19) 0.61 0.53
end-stage kidney disease, cirrhosis, and stroke.
prescription
medications c
Prior health care use in the 12 months before the last
Emergency 2 (1-4) 1 (0-3) 2 (1-3) 0.09 0.38 6 months of life.
department visitsd d
Emergency department visits not resulting in
Hospitalizations 1 (1-2) 1 (0-1) 1 (0-2) 0.21 0.34
hospital admission.

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palliative care consultation (>90 days compared with ⱕ30 days before death) was associated with
higher odds of dying in the hospital for patients with chronic organ failure (34.8% vs 20.9%; aOR,
1.29; 95% CI, 1.18-1.42) and dementia (13.8% vs 9.3%; aOR, 1.28; 95% CI, 1.10-1.48) (Figure 2; eTable 3
in the Supplement).

Table 2. Delivery of Physician-Based Palliative Care and Location of Death for Patients Who Received Palliative
Care in the Last Year of Life Who Died of Cancer and Noncancer Illness (Chronic Organ Failure or Dementia)
in Ontario Between 2010 and 2017 by Cause of Deatha

Cause of death Standardized difference

Chronic organ Chronic organ
failureb Dementia Cancer failure vs Dementia vs
Variable (n = 21 054) (n = 14 033) (n = 110 622) cancer cancer
Timing of palliative care
initiation relative to death, d
>90 3349 (15.9) 2148 (15.3) 32 010 (28.9) 0.3 0.3
31-90 8543 (40.6) 5102 (36.4) 43 679 (39.5) 0.0 0.1
≤30 9162 (43.5) 6783 (48.3) 34 915 (31.6) 0.3 0.4
Location of first palliative
care visit
Clinic 7751 (36.8) 4313 (30.7) 44 756 (40.5) 0.1 0.2
Home 6904 (32.8) 3922 (27.9) 16 088 (14.5) 0.4 0.3
Hospital 2728 (13.0) 1348 (9.6) 16 942 (15.3) 0.1 0.2
Subacute care 204 (1.0) 198 (1.4) 736 (0.7) 0.0 0.1
Case management 3467 (16.5) 4252 (30.3) 32 087 (29.0) 0.3 0.0
Model of palliative carec
Generalist 11 940 (56.7) 8399 (59.9) 30 007 (27.1) 0.6 0.7
Consultative 5185 (24.6) 3043 (21.7) 50 985 (46.1) 0.5 0.5
Specialist 3929 (18.7) 2591 (18.5) 29 630 (26.8) 0.2 0.2 Abbreviation: IQR, interquartile range.
a
Palliative care physician mix Data are presented as number (percentage) of
General practitioners only 15 751 (74.8) 11 256 (80.2) 59 704 (54.0) 0.5 0.6 patients unless otherwise indicated.
b
General practitioner and 3599 (17.1) 1989 (14.2) 42 718 (38.6) 0.5 0.6 Chronic organ failure included heart failure, chronic
subspecialists obstructive pulmonary disease, end-stage kidney
Subspecialists only 1704 (8.1) 788 (5.6) 8200 (7.4) 0.0 0.1 disease, cirrhosis, and stroke.
Care setting c
The 3 models of palliative care were (1) generalist
Outpatient 3397 (16.1) 1800 (12.8) 7685 (6.9) 0.3 0.2 palliative care (eg, from a primary care physician or
Home based 3643 (17.3) 1862 (13.3) 3747 (3.4) 0.5 0.4 medical specialists, such as internists and
Inpatient 538 (2.6) 339 (2.4) 1672 (1.5) 0.1 0.1 oncologists), (2) consultation palliative care (ie, care
from both palliative care specialists and generalists),
Multiple locations 12 061 (57.3) 7553 (53.8) 92 107 (83.3) 0.6 0.7
and (3) specialist palliative care.19
Case managementd 1415 (6.7) 2479 (17.7) 5411 (4.9) 0.1 0.4 d
Case management typically includes telephone
No. of palliative care visits, 4 (2-9) 4 (2-9) 11 (5-21) 0.8 0.8
median (IQR) support, weekly case management, and outpatient
Location of deathe case conference.
e
Home 11 232 (53.3) 10 520 (75.0) 69 208 (62.6) 0.2 0.3 Location of death included home (including nursing
homes and hospice), hospital (including intensive
Hospital 6438 (30.6) 1976 (14.1) 30 130 (27.2) 0.1 0.3
care unit), and other (eAppendix 2 in the
Other 3384 (16.1) 1537 (11.0) 11 284 (10.2) 0.2 0.0
Supplement).

Table 3. Association of Illness Type and Timing of Palliative Care Initiation Among Patients in the Last Year
of Life Who Died of Cancer and Terminal Noncancer Illness (Chronic Organ Failure or Dementia) in Ontario
Between 2010 and 2017

Cause of death, OR (95% CI)

Timing of palliative care
initiation relative to death Chronic organ failure vs cancer Dementia vs cancer
>90 d vs ≤30 d
Unadjusted 0.40 (0.38-0.42) 0.35 (0.33-0.36)
Adjusteda 0.48 (0.46-0.51) 0.42 (0.40-0.45) Abbreviation: OR, odds ratio.
a
>90 d vs 31-90 d Models were adjusted for age, sex, comorbidities,
Unadjusted 0.75 (0.72-0.77) 0.60 (0.58-0.63) rurality, neighborhood income, hospital frailty risk
score, and total number of hospitalizations in the 1
Adjusteda 0.77 (0.75-0.80) 0.60 (0.57-0.62)
year before the study index date.

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 JAMA Network Open | Geriatrics Comparison of Palliative Care Between Adults With Terminal Noncancer Illness or Cancer

Discussion
This cohort study of 145 709 adults who died of cancer or noncancer illness and received palliative
care in their last year of life found important differences in the delivery of palliative care across
different types of serious illness for patients with cancer compared with those with chronic organ
failure or dementia. In general, patients dying of cancer were younger, had a lower burden of medical
comorbidity, and had lower prior health care use compared with patients dying of terminal
noncancer illness. Palliative care was also initiated earlier and in the hospital or clinic setting for
patients with cancer. For patients with cancer, palliative care was more often delivered by palliative
care specialists across multiple locations. More patients with cancer also received palliative care from
both general practitioners and physicians with subspecialty training compared with patients with
chronic organ failure and dementia. These findings identify patient-level disparities in access to
palliative care, which may be associated with the presence of established palliative care programs in
cancer centers to provide multidimensional care for patients with cancer. These findings also suggest
practitioner-level deficiencies in palliative care for patients with terminal noncancer illness that may
be associated with differences in specialist self-rated knowledge of end-of-life care or recognition of
their patient’s palliative needs and subsequent referral during their illness.36-42
The association between timing and location of death should be considered as exploratory,
hypothesis-generating findings and interpreted with caution because of the risk of confounding by
indication. A higher proportion of patients with chronic organ failure and dementia had palliative care
initiated 30 days or less before death. This late initiation of palliative care in a population of patients
with high medical complexity may limit sufficient time to build a trusting relationship with their
palliative care practitioners and clarify their goals of care and preferences for location of death.4,43
Still, the fact that more patients with terminal noncancer illness died in the hospital despite having
had palliative care initiated at home raises interesting questions that require further exploration
because home palliative care is strongly associated with a home death.5,15 The fact that a much larger
proportion of patients with cancer received palliative care in multiple settings (which includes home)
may simply reflect differences in where patients are identified as having palliative care needs.
Alternatively, this finding may be influenced by the availability and needs of family caregivers,
especially for persons with dementia.
Our findings are supported by prior research5,11 demonstrating differences in the associated
benefits of palliative care across types of serious illness. A population-based cohort study11 of
230 921 adults who died in Ontario found differences in the magnitude of association between the
early initiation of palliative care (ⱖ60 days before death) and health care use at the end of life across
types of serious illness compared with late initiation (<60 days before death). In that study,11 early

Figure 2. Location of Death Among Patients Receiving Palliative Care in the Last Year of Life in Ontario Between
2010 and 2017 According to Illness Type and Timing of Palliative Care Initiation

100
Patients dying in the hospital and at home, %

Dying at home Dying in the hospital

80

60

40

20

0
≤30 31-90 >90 ≤30 31-90 >90 ≤30 31-90 >90
Chronic organ failure Dementia Cancer
Timing of palliative care initiation by disease type, d

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 JAMA Network Open | Geriatrics Comparison of Palliative Care Between Adults With Terminal Noncancer Illness or Cancer

palliative care was associated with more than 2-fold higher odds of acute health care use at the end
of life in patients dying of chronic organ failure and 1.5-fold odds in patients dying of dementia
compared with acute health care use in patients dying of cancer. Prior research5 also examined
differences in the associated benefits of different elements of palliative care delivery among 74 986
patients dying of HF. A subgroup analysis of the 35 292 patients who received palliative care found
a strong association between palliative care initiated in the home, palliative care delivered across
multiple settings, and models of care that involve specialist palliative care practitioners and a home
death.5 The current study identified disparities among these components of delivery across different
types of serious illness. Future work is required to measure the association of these differences with
important outcomes and to identify differences in preferences for specific types of treatments
between patients with different types of serious illness. Given that there are twice as many patients
with noncancer illness and palliative care needs than there are with cancer, it is clear that there are
not enough palliative care specialists to meet current or future demand.44 Health care systems
should begin to focus on building capacity to integrate palliative care across all health care settings
and levels (primary to tertiary care) throughout an illness, according to the patient’s needs. This work
will require a commitment to delivering palliative care by all health care professionals with basic
palliative care training, reserving specialist palliative care using multidisciplinary teams for referral of
complex cases.7

Limitations
This study has limitations. First, individual palliative care needs or specific palliative therapies were
not measured among patients in the cohort. Patients with terminal noncancer illness frequently have
a higher burden of palliative care needs associated with higher health care use, worse functional
impairments, and higher levels of anxiety and depression compared with patients with cancer.45-47
In addition, patients with specific terminal noncancer illnesses, such as HF, ESKD, and cirrhosis, likely
have differences in other care needs, such as ongoing dialysis, that occur during an exacerbation of
their underlying disease. Second, this study described multiple differences in the components of
palliative care as delivered by both generalist and specialist palliative care physicians. A stratified
analysis of care delivery across illness trajectories comparing delivery by generalist and specialist
palliative care practitioners would help identify further gaps in access to specialized palliative care
and its associated benefits.1,5,6,13,48 However, a description of the real-world delivery of palliative care
is important to identify gaps in care and likely strengthens the generalizability of the study to care
provided in other similar health care systems. Third, the study did not measure delivery of palliative
care by health care practitioners other than physicians, which may include nurse practitioners or
social workers.49,50 Still, capturing the delivery of palliative care using physician fee codes in
administrative data is a strength of the study given that care classification has been less successful in
health systems without universal coverage.51 The prescription of medication (such as opioids,
diuretics, and antipsychotics) may be an effective alternative or complementary approach to
measuring the delivery of palliative care, including the timing of its initiation, beyond physician
claims. Further work is required to address challenges associated with identifying the indication,
dispensing, and continuous use of medications used with palliative intent. Fourth, the possibility that
physicians were delivering palliative care and not using specific palliative care physician fee codes
would serve to underestimate the magnitude of our findings. In Ontario, physicians are directed to
use these codes for seriously ill patients who wish to forgo aggressive treatment of their underlying
disease, with a focus on maintaining comfort. In practice, many physicians use the consensus
definition from the International Association for Hospice and Palliative Care to determine if they are
delivering palliative care.7 Fifth, the study intentionally used information on a patient’s death
certificate to define the cohort to maximize specificity because of the concern that other approaches
may introduce too much heterogeneity and other sources of bias.4

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 JAMA Network Open | Geriatrics Comparison of Palliative Care Between Adults With Terminal Noncancer Illness or Cancer

Conclusions
There are substantial patient- and practitioner-level differences in the delivery of palliative care
across distinct types of serious illness. These patient- and practitioner-level differences have
important implications for the organization and scaled implementation of palliative care programs,
including enhancement of practitioner education and training and improvements in equitable access
to care across all settings.

ARTICLE INFORMATION
Accepted for Publication: January 14, 2021.
Published: March 4, 2021. doi:10.1001/jamanetworkopen.2021.0677
Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2021 Quinn KL
et al. JAMA Network Open.
Correction: This article was corrected on April 2, 2021, to amend Dr Wegier’s name and affilations.
Corresponding Author: Kieran L. Quinn, MD, MSc, Department of Medicine, Sinai Health System, 60 Murray St,
Second Floor, Room 404, Toronto, Ontario, Canada M5T 3L9 (kieran.quinn@sinaihealth.ca).
Author Affiliations: Department of Medicine, University of Toronto, Toronto, Ontario, Canada (Quinn, Bell); ICES,
Toronto and Ottawa, Ontario, Canada (Quinn, Stukel, Huang, Bell, Tanuseputro); Institute of Health Policy,
Management, and Evaluation, University of Toronto, Toronto, Ontario, Canada (Quinn, Wegier, Stukel, Bell);
Department of Medicine, Sinai Health System, Toronto, Ontario, Canada (Quinn, Bell); Humber River Hospital,
Toronto, Ontario, Canada (Wegier); Department of Family and Community Medicine, University of Toronto,
Toronto, Ontario, Canada (Wegier); Bruyère Research Institute, Ottawa, Ontario, Canada (Tanuseputro);
Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada (Tanuseputro); Interdepartmental
Division of Palliative Care, Sinai Health System, Toronto, Ontario, Canada (Tanuseputro); Temmy Latner Centre for
Palliative Care, Toronto, Ontario, Canada (Tanuseputro).
Author Contributions: Drs Quinn and Tanuseputro had full access to all the data in the study and take
responsibility for the integrity of the data and the accuracy of the data analysis.
Concept and design: Quinn, Stukel, Bell, Tanuseputro.
Acquisition, analysis, or interpretation of data: Quinn, Wegier, Huang, Bell, Tanuseputro.
Drafting of the manuscript: Quinn.
Critical revision of the manuscript for important intellectual content: All authors.
Statistical analysis: Quinn, Wegier, Stukel, Huang.
Obtained funding: Tanuseputro.
Administrative, technical, or material support: Bell.
Supervision: Quinn, Stukel, Bell, Tanuseputro.
Conflict of Interest Disclosures: None reported.
Funding/Support: This study was supported by ICES, which is funded by an annual grant from the Ontario
Ministry of Health and Long-Term Care (MOHLTC). The analysis was supported by research grant PJT-153251 from
the Canadian Institutes of Health Research (Dr Tanuseputro).
Role of the Funder/Sponsor: The funding sources had no role in the design and conduct of the study; collection,
management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and
decision to submit the manuscript for publication.
Disclaimer: The opinions, results, and conclusions reported in this article are those of the authors and are
independent from the funding sources. No endorsement by ICES or the Ontario MOHLTC is intended or should be
inferred. Parts of this material are based on data and information compiled and provided by the Canadian Institute
for Health Information (CIHI). However, the analyses, conclusions, opinions, and statements expressed herein are
those of the authors and not necessarily those of the CIHI.
Additional Information: IMS Brogan Inc allowed use of its Drug Information Database.

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SUPPLEMENT.
eAppendix 1. Description of Datasets
eAppendix 2. Physician Claims Fee Codes Used to Identify Delivery of Palliative Care
eAppendix 3. Determining Location of Death
eTable 1. Baseline Characteristics of Study Cohort by Cause of Death
eTable 2. Delivery of Palliative Care to Patients in the Last Year of Life by Timing of Palliative Care Initiation
eTable 3. Association of Timing of Palliative Care With Death in Hospital (Versus Home)

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