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Does access to end-of-life homecare nursing differ by province and community size?

: A
population-based cohort study of cancer decedents across Canada
Hsien Seowa,b,∗ , Anish Aroraa, Lisa Barberab,c, Kim McGraild, Beverley Lawsone, Fred Burgee,
Rinku Sutradharb,c
a McMaster University, Hamilton, ON, Canada b Institute for Clinical Evaluative Sciences, Toronto, ON, Canada c University of
Toronto, Toronto, ON, Canada d University of British Columbia, Vancouver, BC, Canada e Dalhousie University, Halifax, NS,
Canada
articleinfo
Article history: Received 28 March 2017 Received in revised form 27 November 2017 Accepted 30 November 2017
Keywords: Rural Palliative care End of life care Home care Nursing Community size
abstract
Background: Studies have demonstrated the strong association between increased end-of-life homecare nursing use and reduced
acute care utilization. However, little research has described the utilization patterns of end-of-life homecare nursing and how this
differs by region and community size. Methods: A retrospective population-based cohort study of cancer decedents from Ontario,
British Columbia, and Nova Scotia was conducted between 2004 and 2009. Provinces linked administrative databases which
provide data about homecare nursing use for the last 6 months of life for each can- cer decedent. Among weekly users of
homecare nursing in their last six months of life, we describe the proportion of patients receiving end-of-life homecare nursing by
province and community size. Results: Our cohort included 83,746 cancer decedents across 3 provinces. Patients receiving end-
of-life nursing among homecare nursing users increased from weeks −26 to −1 before death by: 78% to 93% in British Columbia,
40% to 81% in Ontario, and 52% to 91% in Nova Scotia. In all 3 provinces, the smallest community size had the lowest
proportion of patients using end-of-life nursing compared to the second largest community size, which had the highest
proportion. Conclusions: Differences in end-of-life homecare nursing use are much larger between provinces than between
community sizes.
© 2017 The Author(s). Published by Elsevier Ireland Ltd. This is an open access article under the CC BY-NC-ND license
(http://creativecommons.org/licenses/by-nc-nd/4.0/).
1. Introduction
Cancer patients comprise the majority users of end-of-life homecare services [1–3]. Homecare nursing, in particular, has
become an important service because the majority of end-of-life cancer patients state they prefer to die at home [4–6]. End-of-life
homecare nursing focuses on managing complex symptoms, such as pain, dyspnea, and delirium, which if left untreated can
cause patients to go to the ED and hospital [7]. Policymakers also sup- port end-of-life homecare because of its potential to avoid
high acute care costs at end of life. For instance, the last year of life costs 25% of the Medicare budget (over age 65) in the US
[8]. For cancer

Corresponding author at: Department of Oncology, McMaster University, 699 Concession St., 4th Fl, Rm 4-229, Hamilton,
ON, L8V 5C2, Canada.
E-mail address: seowh@mcmaster.ca (H. Seow).
patients, hospitalizations represent an estimated 70% of costs in the last year of life [9]. Indeed in most countries most cancer
patients die in hospitals [10–13]. This trend is especially true in rural com- munities, where access to homecare may be more
difficult [14–18]. Additionally, hospitalizations and Emergency Department (ED) vis- its near death and hospital deaths are well
accepted indicators of poor quality end-of-life care [19,20]. As a result, policymakers are focusing on improving access to end-
of-life homecare nursing.
International research, including systematic reviews, have shown that end-of-life homecare nursing services is strongly asso-
ciated with patients dying at home, fewer hospitalizations at the end of life, and fewer hospital deaths [21–25]. Canadian research
in cancer patients has corroborated these findings using stan- dard definitions across multiple jurisdictions: they demonstrated an
association between using more end-of-life homecare nursing with fewer hospital deaths, fewer hospitalizations and emergency
https://doi.org/10.1016/j.healthpol.2017.11.014 0168-8510/© 2017 The Author(s). Published by Elsevier Ireland Ltd. This is an
open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by- nc-nd/4.0/).
j our na l ho me pag e: www.elsevier.com/locate/healthpol
Health Policy 122 (2018) 134–139
Contents lists available at ScienceDirect

Health Policy
Fig. 1. Proportion of cancer patients receiving palliative homecare nursing of those receiving.
department (ED) visits at end of life, and including lower health system costs. [22,26–29]. However, this research neither
described utilization patterns of end-of-life homecare nursing to determine the proportion of end-of-life cancer patients accessing
the effica- cious service nor compared variation by province or rurality and community size. Community size is especially
important to exam- ine because research has identified challenges for rural patients to access to end-of-life care including distant
geography, limited workforce, educational deficits, and higher out-of-pocket costs [14–18]. One US study estimated that 62% to
92% of rural counties did not have access to community hospice providers [17].
Our study specifically examines the utilization patterns of end- of-life homecare nursing among cancer decedents in the three
Canadian provinces of Ontario (ON), British Columbia (BC) and Nova Scotia (NS), which collectively represent 55% of cancer
deaths nationally. We examine utilization patterns by province and by community size. We also compare differences in
provincial end- of-life homecare health policy. This study complements the robust body of knowledge about the effectiveness of
end-of-life home- care nursing to reduce hospital use by describing how many cancer patients are actually using end-of-life
homecare nursing services prior to death.
2. Methods
We conducted a retrospective cohort study of cancer patients who received homecare nursing in the Canadian provinces of
Ontario (ON), Nova Scotia (NS) and British Columbia (BC). Our inclusion criteria were adult decedents (19 years or older) who
had at least one record of homecare nursing following their can- cer diagnosis and within six months of their date of death during
the study period between April 1, 2004 and March 31, 2009. Due to a time lag in capturing cancer-confirmed cause of death in
cancer registries, this was the most recent data available at the time of study inception. To derive our cohort, we used a unique
encrypted patient identifier within each province to link with multiple administrative databases: cancer registry for can- cer type,
cancer diagnosis, and confirmed cause of death from cancer; provincial homecare database for homecare nursing use with
standard or end-of-life intent; Canadian Institute for Health Information’s Discharge Abstract Database for comorbidity; and the
provincial health insurance databases for demographics of age at death, sex, and postal code for both income quintile and
community size [30–33]. The community sizes represented in each province are defined by the Canadian Census Metropolitan
Area (CMA), from smallest to largest, as a community with a population of: <10 K; 10 K to <100 K; 100 K to <500 K; 500 K to
<1.5 M; and >1.5 M.
Homecare nursing intent is recorded in each provincial home- care database. Standard intent nursing is provided to patients
with
service goals ranging from providing “short-term care” with a pre- dictable recovery (e.g., wound care) to “preserving the client’s
level of function and autonomy” with a prognosis of very gradual decline (e.g., early onset of frailty) [34]. Whereas end-of-life
intent is pro- vided to patients classified as “not responsive to curative treatment and are dying, ẅ ith service goals being “to
alleviate distressing symptoms to achieve the best quality of life by providing complex support in the last stages of their
illness, ä nd a typical prognosis of an “expected death within 6 months.“34 At each week, the num- ber of patients receiving
standard or end-of-life homecare nursing was identified. Nursing visits were measured as time (hours/day) in ON and as nursing
visits received in BC and authorized in NS over a month. For each province, we calculated the proportion of patients specifically
receiving end-of-life homecare nursing among those who were receiving any homecare nursing at each week. We then described
the proportion of patients in each week receiving end-of-life homecare nursing between the different community sizes in each
province. We examined the statistical difference at three time points: 26, 13, and 1 week prior to death across all three provinces
and across the different community sizes within each province respectively. Statistical significance was defined as a p-value of
<0.05 using the Cochrane-Armitage test of significance.
Last, to support interpreting and contextualizing findings, we compared relevant homecare and end-of-life care health policies
in the three provinces by conducting a document review of publicly available documents. The study was approved by research
ethics boards at McMaster University (ON), Capital Health (NS), and BC Cancer Agency (BC).
3. Results
3.1. Cohort demographics
83,746 cancer decedents met the inclusion criteria in our multi- province cohort study from 2004 to 2009: 58,787 were from
ON, 19,706 from BC, and 5253 from NS (Table 1). Greater than half (56%) of decedents were older than 70. The most common
site of diagnosis was lung cancer (26%), with colorectal cancer being the second most prevalent (14%). 17% of patients had one
or more comorbidities beyond cancer. ON was the only province with patients residing in all five community sizes, BC had four,
and NS had three. All patients included in this study had at least one homecare visit in the last 6 months of life, and among those,
end-of-life homecare nursing was ever delivered to 68% of decedents in ON, 89% in BC, and 86% in NS.
3.2. End-of-life homecare provision by week across provinces
Among those patients receiving any homecare nursing at any given week, the proportion using end-of-life homecare nursing
increased from weeks −26 to −1 by: 78% to 93% in BC, 40% to 81% in
H. Seow et al. / Health Policy 122 (2018) 134–139 135
136 H. Seow et al. / Health Policy 122 (2018) 134–139
Fig. 2. Proportion of cancer patients receiving palliative homecare nursing of those receiving any homecare in each week closer
to death in each community size. A) British Columbia, B) Ontario, C) Nova Scotia.
ON, and 52% to 91% in NS (Fig. 1). The weekly proportion is not equal to the overall proportion served. For instance, while ON
provided end-of-life homecare nursing to 39,685 patients (68% of homecare nursing patients) at some point in their final six
months of life, in the final week before death, only 29,881 of those patients used home- care, of which 81% were getting end-of-
life homecare nursing. ON has the greatest absolute number of patients receiving homecare nursing. However for any given
week, BC has the highest propor- tion of patients receiving end-of-life homecare nursing, while ON has the least.
3.3. End-of-life homecare provision across community sizes
Generally in all three provinces, the smallest community size (<10,000) had the lowest proportion of patients receiving end-
of-life homecare nursing at each week closer to death (Fig. 2). Conversely, the second largest community size within each
province had the highest proportion of patients receiving end-of-life home- care nursing at any given week before death.
Over time, in BC and NS the differences in proportion by com- munity size appear to narrow closer to death, whereas in ON
the differences only narrow in the final few weeks. Statistical tests showed that in ON, the proportion of patients receiving end-
of-life homecare nursing was statistically significant between the differ- ent community sizes (smallest to largest) in weeks −26
(p < 0.001), −13 (p < 0.001), and −1 (p < 0.001). In BC, the same significant trend was found, except in week −1. In NS, no
significance was found by community size across time periods.
3.4. Comparison of health policies
Public expenditures on homecare vary by approximately 3.5% to 5% of the provincial budget. However, homecare nurses are
financed and organized differently. In BC, public employees provide the administration, and all homecare nursing is delivered by
public employees (case manager and homecare nurses work for the same government agency). In Nova Scotia, public employees
provide the administration, and both public and private employees provide
H. Seow et al. / Health Policy 122 (2018) 134–139 137
Table 1 Demographics of cohort in three provinces.
British Columbia n (%) Ontario n (%) Nova Scotia n (%)
Total cohort 19,706 (100) 58,787 (100) 5253 (100) Age 19–29 years 69 (0) 262 (0) 19 (0) 30–39 years 211 (1) 777 (1) 45 (1) 40–
49 years 982 (5) 3264 (6) 252 (5) 50–59 years 2881 (15) 8721 (15) 682 (13) 60–69 years 4580 (23) 13,854 (24) 1274 (24) 70–79
years 5984 (30) 18,082 (31) 1555 (30) 80–89 years 4301 (22) 12,179 (21) 1162 (22) >=90 years 698 (4) 1648 (3) 264 (5) Sex
Female 9358 (48) 28,143 (48) 2407 (46) Male 10,348 (53) 30,644 (52) 2846 (54) Community Size <10,000 1982 (10) 8986 (15)
2491 (47)
10,000–99,999 4490 (23) 6819 (12) 681 (13) 100,000–499,999 3842 (20) 16,335 (28) 2493 (47) 500,000–1,499,999 N/A 7950
(14) N/A >1,500,000 9392 (48) 18,697 (32) N/A Cancer Type Breast 1518 (8) 5192 (9) 370 (7)
Colorectal 2563 (13) 8380 (14) 735 (14) Lung 5152 (26) 14,634 (25) 1429 (27) Gastrointestinal (not colorectal) 2256 (11) 6254
(11) 544 (10) Other 8217 (42) 24,327 (41) 2175 (42) Charlson Comorbidity Score 0 7966 (40) 25,593 (44) 2414 (46)
≥1 2838 (14) 10,668 (18) 939 (18) Missing* 8902 (45) 22,526 (38) 1900 (36) Palliative care nursing ever delivered Yes 17,565
(89) 39,685 (68) 4495 (86)
*Missing = no non-cancer hospitalizations in the prior year, and thus no data to determine Charlson score.
homecare nursing. In Ontario, public employees provide single- entry coordinating services, but all homecare nursing is
contracted to the private sector (i.e. a managed competition model, whereby publicly-funded homecare services are purchased
through a formal competitive contract process).
In all three provinces, access to 100% coverage for palliative care drugs in the respective provincial formularies is available to
sup- port people to be cared for in their homes. However, the providers who can assess eligibility and length of coverage differs
(Table 2). For example, in BC any nurse practitioner (public employee) or physician can assess a patient’s eligibility for
palliative care and apply for the patient to register for the British Columbia Palliative Care Benefits Program [35]. If accepted, a
patient can receive pallia- tive care drugs (e.g. analgesics or laxatives), medical supplies, and equipment for free and for as long
as they require palliative care. Whereas in ON, a select list of physicians who are registered as palliative care providers by the
Ontario Medical Association (i.e. providers who sign up and meet certain criteria, such as more than 50 palliative care visits per
year) can easily prescribe special- ized palliative care drugs (e.g. methadone) via the Palliative Care Facilitated Access Program
[36]. However, the drugs are free for a maximum of six months. Other ON physicians not on the list can also prescribe these most
of these drugs, but for the drugs to be cov- ered for free, they need to complete additional paperwork via the Exceptional Access
Program to demonstrate need on a case-by-case basis [36].
4. Discussion
Our 5 year multi-province cohort study of cancer decedents indicates that there is a sizeable difference in the proportion of
patients receiving end-of-life homecare nursing among three Cana- dian provinces: ON, BC, and NS. In any given week during
the last six months of life, BC had the highest proportion of patients receiving end-of-life homecare nursing among all homecare
users, whereas ON had the lowest proportion of patients using end-of-life home- care nursing. Generally in each province, the
smallest community size had the lowest proportions of end-of-life homecare nursing use. To our knowledge, this is the first study
to look at access to
end-of-life homecare by community sizes across multiple jurisdic- tions.
Across all three provinces, the smallest community size gen- erally had the lowest proportion of patients receiving end-of-life
homecare at any given week before death. This finding could be explained by the many studies that identified challenges with
palliative care access in rural areas, such as: long geographic dis- tances, shortage of homecare providers, and lack of skilled
workers [14–18]. Given our large sample size, we believe that the absolute trend of lower proportions of patients using end-of-
life home- care nursing in the smallest community sizes are relevant to other countries. In a Canadian study of multiple health
regions in four provinces, it examined cancer end-of-life quality indicators includ- ing “received end-of-life homecare nursing in
the last six months of life (Y/N)” [37]. It found similar results to our study: BC consistently had higher proportions of patients
receiving end-of-life homecare nursing than ON, which had the lowest. However it also found that after controlling for age, sex,
and population size, many smaller regions performed just as well as larger regions in reaching bench- mark rates. That the
differences between provinces are of a much larger absolute magnitude than the differences by community size suggests a
potentially greater role of policy on improving equitable access to end-of-life homecare nursing.
Indeed provincial policies vary. The bureaucracy surrounding different combinations of public and private homecare
employees may affect access, particularly ease of assessment, authorization, and delivery. For instance, ON is the only province
where case man- agement is done by public employees and homecare services are contracted out to private providers, potentially
making early identi- fication of end-of-life patients more difficult. As well, that BC’s drug benefit program is easier to apply to
and does not have a time limit might incentivize providers to identify patients as needing pallia- tive care earlier. Note, BC also
spends less on the provincial budget than ON, but provides end-of-life homecare to more patients and earlier.
Our study is limited by examining only cancer patients, though they comprise the majority of users of end-of-life homecare
ser- vices. In this study we are unable to describe quality of care and to account for patient preferences, such as refusal, caregiver
sup-
138 H. Seow et al. / Health Policy 122 (2018) 134–139
Table 2 Comparison of End-of-Life Homecare Policy.
Demographics Homecare Delivery and Financing Palliative Care Drug Policy
British Columbia • Total Pop: 4,455,207 • Public employees manage home. • Name: British Columbia Palliative Care
Drug Plan
• Death/Yr: 31,214 • Public employees deliver all homecare
nursing services
• Effective 2006
• Cancer deaths/Yr: 9400 • 3.5% of provincial budget is spent on
home and community care.
• Who can refer: Any physician or nurse practitioner
• Cancer deaths receiving any homecare in last 6 mo.: 49%
• Coverage for 100% of palliative care drugs, medical supplies, and equipment.
• Cancer deaths receiving end-of-life homecare in last 6 mo.: 89%
• Lasts for as long as person requires palliative care
Ontario • Total Pop: 13,069,182 • Public employees provide case
management and assessment services.
• Name: Facilitated Access to Palliative Care Drugs Mechanism
• Death/Yr: 92,152 • Private service provider organizations are
contracted to deliver home care services.
• Effective 2007
• Cancer deaths/Yr: 27,900 • 4.5% of provincial budget is spent on
home and community care.
• Who can refer: Only physicians registered to participate in the program (i.e. physicians who are specially trained in palliative
care) or a one-off request by any physician.
• Cancer deaths receiving any homecare in last 6 mo.: 48%
• Coverage for 100% of palliative care drugs
• Cancer deaths receiving end-of-life homecare in last 6 mo.: 68%
• Lasts six months
Nova Scotia • Total Pop: 938,183 • Public employees manage homecare. • Name: Palliative Home Care Drug
Coverage Program:
• Death/Yr: 8596 • Both public and private employees
provide homecare nursing services
• Effective 2012, haphazardly available before then
• Cancer deaths/Yr: 2700 • 5% of provincial budget is spent on home
and community care.
• Who can refer: Local palliative care specialist team member
• Cancer deaths receiving any homecare in last 6 mo.: 59%
• Coverage for 100% of palliative care drugs
• Cancer deaths receiving end-of-life homecare in last 6 mo.: 86%
• Lasts six months
port or private services obtained. Finally, this study focused on access to end-of-life homecare nursing because of prior research
demonstrating its benefits. Other published research describing the characteristics of those who received standard homecare or no
homecare at all show that these patients are more likely to have a non-cancer diagnosis, have haematological cancer, or have less
than six months survival after cancer diagnosis [38,39].
5. Conclusion
Our study examined end-of-life homecare nursing provision in multiple provinces across Canada. Results show that
differences in the proportion of patients using end-of-life homecare nurs- ing are much larger between provinces than between
community sizes. This suggests that higher-level regional policies and structure are more influential on end-of-life care delivery
than are intra- province differences by community size. In future research, there is great potential for jurisdictions to learn from
one another, both in understanding how health care structure may affect care, and in addressing the capacity of communities of
different size to provide high-quality end of life care.
Funding
This study was funded by the Canadian Cancer Society Research Institute (grant number 700689) and also supported by the
Cana- dian Partnership Against Cancer’s Applied Research in Cancer Control (grant number 019789). The study used databases
main- tained by the Institute for Clinical Evaluative Sciences, which receives funding from the ON Ministry of Health and Long
Term Care. The British Columbia Cancer Agency and the BC Ministry of Health approved access to and use of the data
facilitated by Popu-
lation Data BC for this study. Portions of the data used in this report were made available by the NS Department of Health and
Wellness and the Population Health Research Unit (now known as Health Data NS) of Dalhousie University. The opinions,
results, and con- clusions reported in this paper are those of the authors and are independent from the funding and data providing
sources.
Acknowledgments
The authors would like to acknowledge the following people for their feedback during the preparation of this manuscript: Erin
O’Leary, Ying Liu, Konrad Fassbender, and Reka Petaky.
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