Palliative care costs in Canada: A descriptive comparison of studies of urban and rural patients near end of life

Abstract

Background:

Significant gaps in the evidence base on costs in rural communities in Canada and elsewhere are reported in the literature, particularly regarding costs to families. However, it remains unclear whether the costs related to all resources used by palliative care patients in rural areas differ to those resources used in urban areas.

Aim:

The study aimed to compare both the costs that occurred over 6 months of participation in a palliative care program and the sharing of these costs in rural areas compared with those in urban areas.

Design:

Data were drawn from two prior studies performed in Canada, employing a longitudinal, prospective design with repeated measures.

Setting/participants:

The urban sample consisted of 125 patients and 127 informal caregivers. The rural sample consisted of 80 patients and 84 informal caregivers. Most patients in both samples had advanced cancer.

Results:

The mean total cost per patient was CAD26,652 in urban areas, while it was CAD31,018 in rural areas. The family assumed 20.8% and 21.9% of costs in the rural and urban areas, respectively. The rural families faced more costs related to prescription medication, out-of-pocket costs, and transportation while the urban families faced more costs related to formal home care.

Conclusion:

Despite the fact that rural and urban families assumed a similar portion of costs, the distribution of these costs was somewhat different. Future studies would be needed to gain a better understanding of the dynamics of costs incurred by families taking care of a loved one at the end of life and the determinants of these costs in urban versus rural areas.

Keywords

Palliative care cost analysis financial burden informal care urban population rural population

What is already known about the topic?

Although most large urban centers have specialized palliative care delivered at home and in hospitals, such services are less developed in rural and semi-rural areas.

Significant gaps in the evidence base on costs in rural communities in Canada and elsewhere are reported in the literature, particularly regarding costs to families.

Because of limited access to health care services and other issues, end-of-life patients in rural areas may have different patterns of health care resource utilization than their urban counterparts, and rural families may experience different financial burdens.

It is unclear whether the costs incurred by rural palliative care patients and their family and the sharing of these costs differ from those observed in urban areas.

What this paper adds?

This study demonstrates that rural and urban families assume a similar portion of the overall costs, but the distribution of these costs is somewhat different.

Rural families face expenses particularly related to prescription medication, out-of-pocket costs, and transportation.

Urban families face expenses particularly related to private home care, followed by out-of-pocket costs, medical equipment/aids, and prescription medication.

Implications for practice, theory or policy

Such knowledge may help to inform policy makers in the areas of development or improvement of financial policies and programs to prevent pauperization among vulnerable families as a result of insufficient health care resources for dying people.

Introduction

In Canada, each province and territory must ensure that their health insurance programs meet the federal standards set out in the Canada Health Act, which ensures universally accessible and publicly funded health care services.¹ Palliative care falls within the scope of such health care services. Although most large urban centers have specialized palliative care delivered at home and in hospitals, such services are less developed in rural areas, due notably to a smaller patient population.

Rural individuals usually do not want to leave their homes or community during their final days of life,^2,3 nor do their families want them to be long distances away during this time.³ However, rural patients are less likely to die out of hospital than urban patients,^2,4 and among those who die in hospital, some die in hospitals situated outside of their region of residence.⁵ There are several major impediments to supporting home deaths in rural areas.⁶ The likelihood of receiving any palliative care at home is significantly lower for persons in rural areas than for those in urban areas.⁷ Rural residents are much more likely to receive non-professional home care services such as supportive care and meal preparation⁷ and tend to receive fewer home visits by family physicians during end of life than those living in an urban area.⁸ Long travel distances^9–14 and driving challenges^9,13 also contribute to the complexities of home visits by professionals in rural areas. Significant gaps in the delivery of health services to end-of-life patients in rural communities in Canada and elsewhere are reported in the literature. These gaps include a shortage of health care professionals^6,10,12–15 and limited access to 24-h/7-day health care services,^2,12,16–19 equipment,^10,12,14 medications,^10,12,15,18 respite and other support services for family caregivers,^17,20 and funding for services.^2,15

Rural residents have significantly lower physician consultation rates in their last year of life than their urban counterparts²¹ and are more likely to be hospitalized for conditions that could have been treated by primary care providers,^22–24 which might reflect the more limited access to primary care in rural areas as compared with urban areas.^25,26 Palliative care patients residing in a rural area, particularly women, those who are younger and those with a parent or a relative other than a spouse or child as their primary informal caregiver, are more likely to make emergency department visits to address their needs, and these visits often result in hospitalization.^2,27 The lack of 24-h palliative care coverage in rural areas often leads to reliance on hospital emergency room services at night when care is urgently needed.¹⁸

Although larger rural areas may have hospitals with basic services, people usually have to travel to urban areas for specialized care and treatments,^12,28,29 which is sometimes perceived as a barrier to benefitting from these services.³⁰ Rates of palliative radiotherapy consultation and treatment seem to decline with increased travel time.³¹ Hence, the greater distance from home to the hospital or specialized center may reduce the likelihood of admission to hospital.^32–34 However, when patients are admitted, the probability of being discharged declines with increasing distance to the hospital.^32,33 The need to travel may impose increased financial burdens on the patients and their families,^{28,29,35–37} including various traveling expenses^28,35,36 and loss of or reduction in income.^35,36,38

Because of limited access to health care services and other issues, end-of-life patients in rural areas may have different patterns of health care resource utilization, and their families may experience different financial burdens than their urban counterparts. However, it is unclear whether the costs incurred by rural palliative care patients and their families differ from those observed in urban areas, or whether there exist differences between these groups with regard to the sharing of these costs.

We carried out a study in urban regions of five Canadian provinces to evaluate all costs related to palliative care and how these costs were shared between the public health care system (PHCS), the family, and not-for-profit organizations (NFPO).³⁹ We replicated the same study concentrating on rural regions of four Canadian provinces.⁴⁰ This article compares the findings of the urban and rural studies in order to characterize cost differences in resources used by palliative care patients, the sharing of these costs, as well as the financial burden faced by families caring for palliative care patients. It should be noted that these studies were mainly descriptive and did not aim to investigate the determinants of costs.

Methods

Design, setting, and participants

The target population consisted of patients enrolled in a regional palliative care program and their main informal caregivers. Data on the urban sample were drawn from a study we performed in urban regions of five Canadian provinces, employing a longitudinal, prospective design with repeated measures.³⁹ Data on the rural sample were drawn from a replication of this study we conducted in rural regions of four Canadian provinces.⁴⁰ Rural areas were defined as geographic locations where access to secondary and tertiary health care services is complicated by distances from hospitals.⁴¹ For the purpose of this article, we selected participants from the provinces common to the two studies: Nova Scotia, Quebec, and Manitoba. Details regarding the recruitment process are provided in Dumont et al.³⁹ and Dumont et al.⁴⁰ Both studies were approved by the Laval University Research Ethics Committee (Quebec) and by each participating site’s ethics boards.

Data collection

Data were collected in 2005–2006 for the urban regions and in 2009–2011 for the rural regions. Interviews were conducted every 2 weeks until either the patient’s death or upon patient and/or informal caregiver decision to end their follow-up. A 6-month follow-up was initially planned with participants, but upon completion of the 6-month period, patients/caregivers were invited to pursue their participation. The questions targeted the goods and services used related to the patient’s condition, and identification of who paid which costs.

Costing

The costing process of goods and services is described in Dumont et al.⁴⁰ At the time of the urban study, the Alberta values were retained as standard costs because of their availability and their completeness. In order to be consistent and to allow comparisons between the two studies, the Alberta values were also used in the rural study even though there were no rural study sites in Alberta. Cost values from 2010 were used in determining standard costs, except for personal expenses, which were provided by participants and adjusted according to the consumer price index for 2010. The urban study costs were re-estimated using the same values from 2010. (For more details on individual resources costing, see Appendix 1.)

Statistical analyses of costs

For patients with a follow-up longer than 6 months, data from the 6 months prior to death or to the end of their participation in the study were retained as the study was interested in costs occurring near death. The mean total cost per patient over the 6-month period was estimated using Lin et al.’s⁴² non-parametric estimator method for each resource category and payer category. Statistical analyses were performed with SAS 9.2 (Cary, NC, USA) software. The bootstrapping technique was used to provide a 95% confidence interval of all the mean cost estimates. For more details on the statistical analyses, see Dumont et al.⁴⁰

Results

Study descriptive data and participant characteristics

The urban sample consisted of 125 patients and 127 informal caregivers. The rural sample consisted of 80 patients and 84 informal caregivers. Tables 1 and 2 compare the socio-demographic characteristics of rural and urban participants. Rural and urban patients differed significantly regarding their status on the Eastern Cooperative Oncology Group (ECOG) Performance Status scale⁴³ at the time of the first interview (p < 0.0001) and the total number of persons providing care and/or assistance to them (p = 0.0316). Rural and urban informal caregivers were significantly different regarding their gender (p = 0.0056) and age (p = 0.0244).

Table 1.

Socio-demographic characteristics of patients in rural and urban areas.

Variable	Rural areas (N = 80)		Urban areas (N = 125)		p value
	n	(%)	n	(%)	p value
Site
Nova Scotia	48	58.5	50	40.0
Quebec	17	20.7	50	40.0
Manitoba	15	18.3	25	20.0
Age, mean (SD) (years)	67.9	(11.2)	66.3	(11.6)	0.3297
Gender
Male	48	60.0	59	47.2	0.0735
Female	32	40.0	66	52.8	0.0735
Diagnosis
Cancer	67	83.8	67	53.6
Other	13	16.3	7	5.6
Missing	–	–	51	40.8
Marital status
Married/common-law	56	70.1	84	67.7	0.7180
Widowed	14	17.5	18	14.5
Divorced/separated	6	7.6	13	10.5
Single	4	5.0	9	7.3
Living situation
With spouse only	49	61.3	64	51.2	0.3694
Alone	14	17.5	20	16.0
With others only	10	12.5	21	16.8
With spouse and others	7	8.8	19	15.2
Missing	–	–	1	0.8
Number of people providing care/assistance to the patient
1	51	63.8	60	48.0	0.0316^£
2	14	17.5	25	20.0
3	7	8.8	24	19.2
4	3	3.8	11	8.8
5	2	2.5	4	3.2
6	3	3.8	0	0.0
ECOG Performance Status^a
0	3	4.1	0	0.0	<0.0001^§
1	24	32.4	11	8.9
2	25	33.8	39	31.5
3	19	25.7	59	47.6
4	3	4.1	15	12.1
Missing	6	7.5	1	0.8

SD: standard deviation; ECOG: Eastern Cooperative Oncology Group.

At the time of the first interview.

p < 0.05; ^§p < 0.01.

Table 2.

Socio-demographic characteristics of informal caregivers in rural and urban areas.

Variable	Level	Rural areas (N = 84)		Urban areas (N = 127)		p value
		n	%	n	%	p value
Age	Mean (SD)	60.7	11.9	56.7	12.9	0.0244^£
Gender
Male		15	17.9	45	35.4	0.0056^§
Female		69	82.1	82	64.6	0.0056^§
Relationship to the patient
Spouse/partner		52	61.9	72	56.7	0.6022
Child		17	20.2	38	29.9
Sibling		7	8.3	7	5.5
Friend		5	6.0	5	3.9
Other		3	3.6	5	3.9
Living situation
Lives with the patient		60	71.4	93	73.2	0.7744
Does not live with the patient		24	28.6	34	26.8	0.7744
Work status
Retired		44	52.4	43	33.9	0.0853
Employed		20	23.8	46	36.2
Unemployed		8	9.5	6	4.7
Homemaker		5	6.0	6	4.7
Disabled/on leave		7	8.3	14	11.0
Other		0	0	1	0.8
Missing		0	0	11	8.7

SD: standard deviation.

p < 0.05; ^§p < 0.01.

The data included for analyses covered a median length of 101.0 days (Q1: 51; Q3: 179) for the urban sample and a median length of 163.5 days (Q1: 64; Q3: 182) for the rural sample. About 88.8% of the urban patients and 55.0% of the rural patients died during their participation in the study.

Outcome data

The overall mean total cost per patient for a 6-month participation in a palliative care program reached CAD26.652 ± 1.704 in urban regions, as compared to CAD31,018 ± 1159 (16.4% higher) in rural regions. Tables 3 and 4 depict the distribution of these costs by resource and payer categories.

Table 3.

Mean total cost per patient incurred by each part for each resource category^a in rural areas.

Resource category	PHCS		Family		NFPO		Others		Total
	Mean ± SE (95% CI)	%	Mean ± SE (95% CI)	%	Mean ± SE (95% CI)	%	Mean ± SE (95% CI)	%	Mean ± SE (95% CI)	%
Expenditures
Inpatient hospital care	11,674 ± 1129 (9457–13,884)	48.4	0 ± 0 (0–0)	0.0	0 ± 0 (0–0)	0.0	0 ± 0 (0–0)	0.0	11,674 ± 1129 (9457–13,884)	37.6
Ambulatory care	2790 ± 214 (2371–3210)	11.6	9 ± 3 (3–15)	0.1	0 ± 0 (0–0)	0.0	3 ± 2 (0–6)	12.0	2801 ± 215 (2381–3223)	9.0
Home care	6067 ± 407 (5269–6865)	25.2	87 ± 14 (60–114)	1.4	6 ± 2 (2–10)	1.3	18 ± 4 (10–25)	72.0	6177 ± 408(5378–6976)	19.9
Long-term care	756 ± 23 (710–801)	3.1	26 ± 7 (14–39)	0.4	382 ± 6 (370–394)	84.0	0 ± 0 (0–0)	0.0	1164 ± 29 (1106–1221)	3.7
Transportation	390 ± 83 (227–552)	1.6	474 ± 45 (385–563)	7.4	0 ± 0 (0–0)	0.0	0 ± 0 (0–0)	0.0	863 ± 114 (639–1087)	2.8
Prescription medication	1212 ± 104 (1008–1415)	5.0	569 ± 72 (428–708)	8.8	4 ± 1 (2–6)	0.9	0 ± 0 (0–0)	0.0	1786 ± 145 (1500–2069)	5.8
Medical equipment/aids	1169 ± 56 (1060–1278)	4.9	167 ± 13 (142–192)	2.6	20 ± 1 (19–22)	4.4	4 ± 0 (3–5)	16.0	1360 ± 55 (1253–1467)	4.4
Out-of-pocket costs	43 ± 8 (26–59)	0.2	490 ± 35 (421–558)	7.6	43 ± 14 (16–71)	9.4	0 ± 0 (0–0)	0	576 ± 46 (485–667)	1.9
Total	24,099 ± 1081 (9457–13,884)	100	1821 ± 104 (1616–2026)	28.3	455 ± 13 (430–480)	100	24 ± 4 (17–32)	100.0	26,401 ± 1135 (24,173–28,622)	85.1
Informal care
Caregiving time	0 ± 0 (0–0)	0.0	4616 ± 168 (4286–4947)	71.7	0 ± 0 (0–0)	0.0	0 ± 0 (0–0)	0.0	4616 ± 168 (4286–4947)	14.9
Total	24,099 ± 1081 (9457–13,884)	100.0	6438 ± 233 (5981–6894)	100.0	455 ± 13 (430–480)	100.0	24 ± 4 (17–32)	100.0	31,018 ± 1159 (28,741–33,286)	100.0

PHCS: public health care system; NFPO: not-for-profit organizations; SE: standard error; CI: confidence interval.

All costs are expressed in Canadian dollars and have been rounded to the nearest number.

Table 4.

Mean total cost per patient incurred by each part for each resource category^a in urban areas.

Resource category	PHCS		Family		NFPO		Others
	Mean ± SE (95% CI)	%	Mean ± SE (95% CI)	%	Mean ± SE (95% CI)	%	Mean ± SE (95% CI)	%
Expenditures
Inpatient hospital care	9045 ± 611 (7848–10,243)	44.3	0 ± 0 (0–0)	0.0	0 ± 0 (0–0)	0.0	0 ± 0 (0–0)	0.0
Ambulatory care	1253 ± 173 (915–1591)	6.1	29 ± 12 (5–53)	0.5	1 ± 0 (0–2)	0.4	5 ± 2 (2–9)	3.8
Home care	7236 ± 657 (5949–8525)	35.5	481 ± 64 (357–606)	8.3	6 ± 4 (0–13)	2.1	49 ± 4 (42–56)	37.1
Long-term care	959 ± 113 (737–1180)	4.7	98 ± 9 (81–116)	1.7	0 ± 0 (0–0)	0.0	0 ± 0 (0–0)	0.0
Transportation	277 ± 42 (195–359)	1.4	121 ± 18 (86–156)	2.1	0 ± 0 (0–0)	0.0	0 ± 0 (0–0)	0.0
Prescription medication	1354 ± 175 (1011–1697)	6.6	133 ± 25 (83–183)	2.3	0 ± 0 (0–0)	0.0	0 ± 0 (0–0)	0.0
Medical equipment/aids	293 ± 46 (203–383)	1.4	187 ± 30 (129–246)	3.2	275 ± 19 (237–312)	97.5	77 ± 11 (56–99)	58.3
Out-of-pocket costs	0 ± 0 (0–0)	0.0	217 ± 35 (149–285)	3.7	0 ± 0 (0–0)	0.0	1 ± 1 (0–3)	0.8
Total	20416 ± 1211 (18,045–22,792)	100	1267 ± 112 (1048–1487)	21.8	281 ± 21 (239–323)	100	132 ± 13 (108–157)	100.0
Informal care
Caregiving time	0 ± 0 (0–0)	0.0	4559 ± 462 (3654–5466)	78.2	0 ± 0 (0–0)	0.0	0 ± 0 (0–0)	0.0
Total	20,416 ± 1211 (18,045–22,792)	100.0	5826 ± 552 (4746–6909)	100.0	281 ± 21 (239–323)	100.0	132 ± 13 (108–157)	100.0

PHCS: public health care system; NFPO: not-for-profit organizations; SE: standard error; CI: confidence interval.

All costs are expressed in Canadian dollars and have been rounded to the nearest number.

The mean total cost per patient attributable to inpatient hospital care was 29.1% higher in rural regions than in urban regions. Over the course of the study, about 47% and 55% of patients were hospitalized in urban and rural areas, respectively. Urban patients had a total number of days spent in hospital averaging 8.40 (standard deviation (SD) = 0.53), while rural patients had a total number of days spent in hospital averaging 10.94 (SD = 1.03). Costs related to medical equipment and aids were 63.3% higher in rural regions. Those related to prescription medication were higher by 20.1% in rural regions. Home care costs were 25.8% higher in urban areas, while caregiving time costs in both rural and urban areas were similar.

Main results

The PHCS assumed 76.6% and 77.7% of the mean total cost per patient in the urban and rural areas, respectively. Most of the PHCS costs were attributable to inpatient hospital care. A greater portion of the PHCS costs was attributable to home care in urban areas as compared to rural areas (35.5% vs 25.2%), while a greater portion of PHCS costs was attributable to ambulatory care (mainly in emergency rooms) in rural areas as compared to urban areas (11.6% vs 6.1%).

The family paid 20.8% and 21.9% of costs in the rural and urban areas, respectively. The most important family cost component was caregiving time in both rural and urban areas. When excluding caregiving time costs, rural families faced expenses that were 43.7% higher than those of urban families. Most of the family expenses in the rural areas were attributable to prescription medication (31.2%), out-of-pocket costs (26.9%), and transportation (26.0%), while in the urban areas, family expenses were mostly attributable to private home care (38.0%), followed by out-of-pocket costs (17.1%), medical equipment/aids (14.8%), and prescription medication (10.5%).

Some informal caregivers absorbed indirect costs related to work absences. In urban and rural areas, respectively, the working informal caregivers missed an average of 32.35 (SD = 5.98) and 41.42 h (SD = 9.58) from work in order to carry out their caregiving responsibilities, which represents a difference of 21.9%. This difference was significant (p < 0.0001).

Discussion

The mean total cost per patient participating in a palliative care program over a 6-month period was 16.4% higher in rural areas as compared to urban areas, and the cost difference was greater for the PHCS than for the family. The portion of costs assumed by the PHCS and the family was similar among the urban and rural areas, but the distribution of these costs was somewhat different.

A greater percentage of the PHCS costs was attributable to inpatient hospital care in rural areas as compared to urban areas. This is consistent with the literature indicating that rural patients are more likely to be hospitalized at the end of life than their urban counterparts.^5,44 Ambulatory care accounted for a greater portion of the PHCS costs in rural areas as compared to urban areas. This is consistent with findings of a Canadian study revealing that a greater proportion of rural residents report receiving care in emergency departments or outpatient clinics, which may reflect differences in the organization or the provision of health services, as well as disparities in the availability of health care resources as compared to urban areas.⁴⁵ Home care costs accounted for a lower portion of costs in the rural sample as compared to the urban sample. This is consistent with findings of a study by Goodridge et al.⁷ revealing that patients living in rural/remote areas are less likely than those living in urban areas to receive any home palliative care. This difference may be attributable to more limited access to palliative care at home in rural areas as compared to urban areas.⁷

Surprisingly, the costs related to informal caregiving time were similar between rural and urban areas. This differs from findings from prior studies indicating that rural residents are more likely to rely on informal supports, while those in more urban areas tend to have more supports available to them and/or use more formal support services.^46,47 It is possible, however, that some potential confounding variables such as age and gender of the informal caregivers, as well as the number of informal caregivers, may have affected these results.

Rural families absorbed more indirect costs related to work absences. They also faced more costs related to prescription medication, transportation, and out-of-pocket expenses than urban families. The financial burden sustained by families that was associated with expenses otherwise covered in hospital is identified as a major barrier in maintaining palliative care patients at home within rural areas.^2,20 As well, for some families, the costs and time commitments of commuting to urban areas for specialized palliative care can create an insurmountable barrier due to the financial burden alone.⁴⁸ Because of these issues, rural patients may not access all of their required end-of-life care services³⁶ and attain the level of care and services dispensed in urban areas.⁴⁹ Other studies have also identified financial constraints as factors that may interfere with seeking care⁵⁰ and affect treatment choices.¹⁸ Older rural patients with advanced cancer perceive their lack of access to specialized care services as resulting in limited choices with regard to their location of care/death.¹⁶ As well, although a home death is often the preferred option, when individuals live long distances from specialized health care providers⁵¹ and when the additional supports necessary to enable death at home are unavailable,¹⁸ an institutional death in hospital may be accepted and expected.

The publicly funded Canadian health care system ensures universal access to necessary medical and hospital care and the Canada Health Act identifies accessibility as one of its five fundamental principles. Therefore, financial means should not be a condition for accessing necessary medical and hospital care.⁴⁵ Patients, particularly the elderly, usually greatly value being able to access local care as much as possible.^38,52 On the other hand, most patients accept that some degree of traveling is an inevitable part of rural life.⁵² The feasibility of providing specialist care in rural communities is also questionable due to limited time and resources, as well as the challenges related to maintaining expertise where patient numbers are small.⁵³ Primary care professionals are seen as having a key role in delivering palliative care in rural areas,⁵⁴ as well as in supporting families providing care for rural palliative care patients.¹⁹ The support from generalist care providers through after hours telephone support is an example of initiatives that have proven to be efficient and effective in avoiding hospitalization and emergency department visits.⁵⁵ Moreover, access to specialist multidisciplinary palliative care consultation by videoconferencing has the potential of reducing travel time and expenses for rural cancer patients and their families.⁵⁶

Given that rural areas have their own specific needs, caution is advised in applying urban models of palliative care to rural settings.^3,14,45 Instead, palliative care approaches need to be tailored to individual rural communities by being responsive to their unique strengths and challenges.^14,18

Limitations

Because of the descriptive nature of the study design and the use of a non-parametric estimator method to calculate mean costs, it was not possible to evaluate the effect of potential confounding variables that could explain some differences in the study results observed between the two groups. In particular, rural and urban patients differed significantly regarding their status on the ECOG Performance Status scale at the time of the first interview, and a greater number of urban patients had two or more informal caregivers. Rural caregivers were older than their urban counterparts, and more rural caregivers were female. Further studies are needed to explore the effect of such variables on costs occurred by urban and rural palliative care patients and their families.

Patients in the urban and rural studies were recruited in different settings, by different research assistants, which may have had an impact on the selection of participants. As well, urban patients tended to participate in the palliative care program for a shorter period of time than rural patients and were recruited closer to the time of their death. Lin et al.’s method made it possible to attenuate the effect of this discrepancy by giving more weight to data gathered near the end of the follow-up for patients who did not die during the study period and therefore that are closer to their subsequent time of death. However, the cost estimations obtained using such a method may be slightly different from reality.

Another limitation of this study includes the years separating the urban and rural studies. Shifts in policy or social programs and health care system coverage may have occurred over time. As well, even if the response rate in both areas (36% and 35%, urban and rural, respectively) appears relatively good for studies among palliative care patients, this low level of response rate constitutes a methodological limit. Moreover, the study did not take into account provincial or regional differences in policy or social programs, which may affect the generalizability of the findings. Only adult patients enrolled in palliative care programs, who are mainly cancer patients, were targeted. Finally, a study of actual costs may not reveal all needs, leading to an underestimation of costs.

Conclusion

Despite the fact that rural and urban families assumed a similar portion of the overall costs, the distribution of these costs was somewhat different. Rural families faced more costs related to prescription medication, out-of-pocket expenses, and transportation while urban families faced more costs related to formal home care. The amount of informal caregiving time was similar among rural and urban families. Future studies would be needed to gain a better understanding of the dynamics of costs incurred by families providing care for a loved one at the end of life, as well as the determinants of these costs in urban versus rural areas. Other studies might also explore unmet needs of rural palliative care patients and their informal caregivers in order to compare their situation to that experienced by their urban counterparts. These future studies could also examine the potentially differing needs of urban and rural palliative care patients. Further research might also investigate best-practice methods of hospice and palliative care service delivery (e.g. shared care) in rural areas.

Footnotes

Declaration of conflicting interests

The authors declare that they have no conflicts of interest.

Funding

Results presented in this article were drawn from two studies funded by the Canadian Institutes for Health Research (grant nos 123695, 178960).

References

Romanow

. Building on values: the future of health care in Canada. Final Report. Sakastoon, SK, Canada: Commission on the Future of Health Care in Canada, November 2002.

Government of Nova Scotia. A rural palliative home care model: the development and evaluation of an integrated palliative care program in Nova Scotia and Prince Edward Island: A Federal Health Transition Fund Project Report. Truro, NS, Canada: Communications Nova Scotia, March 2001.

Wilson

Justice

Sheps

. Planning and providing end-of-life care in rural areas. J Rural Health 2006; 22(2): 174–181.

Burge

Lawson

Johnston

. Where a cancer patient dies: the effect of rural residency. J Rural Health 2005; 21(3): 233–238.

Menec

Nowicki

St John

. In-region versus out-of-region hospitalizations at the end of life among older rural residents: the relationship between personal and system-related factors. J Gerontol A Biol Sci Med Sci 2011; 66(12): 1328–1335.

Goodridge

Duggleby

. Using a quality framework to assess rural palliative care. J Palliat Care 2010; 26(3): 141–150.

Goodridge

Lawson

Rennie

. Rural/urban differences in health care utilization and place of death for persons with respiratory illness in the last year of life. Rural Remote Health 2010; 10(2): 1349.

Burge

Lawson

Johnston

. Home visits by family physicians during the end-of-life: does patient income or residence play a role? BMC Palliat Care 2005; 4(1): 1.

Waldrop

Kirkendall

. Rural-urban differences in end-of-life care: implications for practice. Soc Work Health Care 2010; 49(3): 263–289.

10.

Kaasalainen

Brazil

Wilson

. Palliative care nursing in rural and urban community settings: a comparative analysis. Int J Palliat Nurs 2011; 17(7): 344–352.

11.

Wilkes

Beale

. Palliative care at home: stress for nurses in urban and rural New South Wales, Australia. Int J Nurs Pract 2001; 7(5): 306–313.

12.

Hansen

Cartwright

Craig

. End-of-life care for rural-dwelling older adults and their primary family caregivers. Res Gerontol Nurs 2012; 5(1): 6–15.

13.

Casey

Moscovice

Virnig

. Providing hospice care in rural areas: challenges and strategies. Am J Hosp Palliat Care 2005; 22(5): 363–368.

14.

Downing

Jack

. End-of-life care in rural areas: what is different? Curr Opin Support Palliat Care 2012; 6(3): 391–397.

15.

MacLean

Kelley

. Palliative care in rural Canada. Rural Soc Work 2001; 6(3): 63–73.

16.

Duggleby

Penz

Leipert

. “I am part of the community but …” The changing context of rural living for persons with advanced cancer and their families. Rural Remote Health 2011; 11(3): 1733.

17.

Kelley

Sellick

Linkewich

. Rural nonphysician providers’ perspectives on palliative care services in northwestern Ontario, Canada. J Rural Health 2003; 19(1): 55–62.

18.

Robinson

Pesut

Bottorff

. Issues in rural palliative care: views from the countryside. J Rural Health 2010; 26(1): 78–84.

19.

Wilkes

White

. The family and nurse in partnership: providing day-to-day care for rural cancer patients. Aust J Rural Health 2005; 13: 121–126.

20.

Aoun

Kristjanson

. The social impact of caring for terminally ill people: sustaining the well-being of carers in rural Australia. In: 8th national rural health conference, Alice Springs, NT, Australia, 10–13 March 2005.

21.

McAuley

Spector

Van Nostrand

. Formal home care utilization patterns by rural-urban community residence. J Gerontol B Psychol Sci Soc Sci 2009; 64(2): 258–268.

22.

Laditka

Probst

. Health care access in rural areas: evidence that hospitalization for ambulatory care-sensitive conditions in the United States may increase with the level of rurality. Health Place 2009; 15(3): 731–740.

23.

Ansari

Laditka

. Access to health care and hospitalization for ambulatory care sensitive conditions. Med Care Res Rev 2006; 63(6): 719–741.

24.

Chen

Zhang

Sun

. The magnitude, variation, and determinants of rural hospital resource utilization associated with hospitalizations due to ambulatory care sensitive conditions. J Public Health Manag Pract 2009; 15(3): 216–222.

25.

Cloutier-Fisher

Penning

Zheng

. The devil is in the details: trends in avoidable hospitalization rates by geography in British Columbia, 1990–2000. BMC Health Serv Res 2006; 6: 104.

26.

Menec

Nowicki

Kalischuk

. Transfers to acute care hospitals at the end of life: do rural/remote regions differ from urban regions? Rural Remote Health 2010; 10(1): 1281.

27.

Lawson

Burge

McIntyre

. Palliative care patients in the emergency department. J Palliat Care 2008; 24(4): 247–255.

28.

Health Canada. Rural health in rural hands (Report). Ottawa, ON, Canada: Health Canada, 2003.

29.

Mungall

. Trend towards centralisation of hospital services, and its effect on access to care for rural and remote communities in the UK. Rural Remote Health 2005; 5(2): 390.

30.

Goins

Williams

Carter

. Perceived barriers to health care access among rural older adults: a qualitative study. J Rural Health 2005; 21(3): 206–213.

31.

Lavergne

Johnston

Gao

. Variation in the use of palliative radiotherapy at end of life: examining demographic, clinical, health service, and geographic factors in a population-based study. Palliat Med 2011; 25(2): 101–110.

32.

Goodman

Fisher

Stukel

. The distance to community medical care and the likelihood of hospitalization: is closer always better? Am J Public Health 1997; 87(7): 1144–1150.

33.

Baird

Flynn

Baxter

. Travel time and cancer care: an example of the inverse care law? Rural Remote Health 2008; 8(4): 1003.

34.

Lin

Allan

Penning

. Examining distance effects on hospitalizations using GIS: a study of three health regions in British Columbia, Canada. Environ Plann 2002; 34A(11): 2037–2053.

35.

Pesut

Robinson

Bottorff

. On the road again: patient perspectives on commuting for palliative care. Palliat Support Care 2010; 8(2): 187–195.

36.

Wilson

Thomas

Kovacs Burns

. Canadian rural-urban differences in end-of-life care setting transitions. Glob J Health Sci 2012; 4(5): 1–13.

37.

McGrath

Seguerra

. The patient transit assistance scheme: a consumer’s perspective. Aust J Rural Health 2000; 8(4): 232–238.

38.

Smith

Campbell

. Provision of oncology services in remote rural areas: a Scottish perspective. Eur J Cancer Care 2004; 13(2): 185–192.

39.

Dumont

Jacobs

Fassbender

. Costs associated with resource utilization during the palliative phase of care: a Canadian perspective. Palliat Med 2009; 23(8): 708–717.

40.

Dumont

Jacobs

Turcotte

. Distribution and sharing of palliative care costs in rural areas of Canada. J Palliat Care 2014; 30(2): 90–98.

41.

Hughes

Ingleton

Noble

. Providing cancer and palliative care in rural areas: a review of patient and carer needs. J Palliat Care 2004; 20(1): 44–49.

42.

Lin

Feuer

Etzioni

. Estimating medical costs from incomplete follow-up data. Biometrics 1997; 53(2): 419–434.

43.

Oken

Creech

Tormey

. Toxicity and response criteria of the Eastern Cooperative Oncology Group. Am J Clin Oncol 1982; 5(6): 649–655.

44.

Rosenwax

McNamara

Murray

. Hospital and emergency department use in the last year of life: a baseline for future modifications to end-of-life care. Med J Aust 2011; 194(11): 570–573.

45.

Pong

DesMeules

Heng

. Patterns of health services utilization in rural Canada. Chronic Dis Inj Can 2011; 31(1): 1–36.

46.

Goins

Spencer

Byrd

. Research on rural caregiving: a literature review. J Appl Gerontol 2009; 28(2): 139–170.

47.

McCracken

Tsetso

Jean

. Seniors in rural and remote Canada: position paper. Ottawa, ON, Canada: Canadian Rural Partnership, Advisory Committee on Rural Issues, April 2005.

48.

Castleden

Crooks

Schuurman

. “It’s not necessarily the distance on the map …”: using place as an analytic tool to elucidate geographic issues central to rural palliative care. Health Place 2010; 16(2): 284–290.

49.

President’s Cancer Panel. Voices of a broken system: real people, real problems. Bethesda, MD: National Cancer Institute, September 2001.

50.

Harju

Wuensch

Kuhl

. Comparison of rural and urban residents’ implicit and explicit attitudes related to seeking medical care. J Rural Health 2006; 22(4): 359–363.

51.

Pesut

Beswick

Robinson

. Philosophizing social justice in rural palliative care: Hayek’s moral stone? Nurs Philos 2012; 13(1): 46–55.

52.

Bain

Campbell

Ritchie

. Striking the right balance in colorectal cancer care—a qualitative study of rural and urban patients. Fam Pract 2002; 19(4): 369–374.

53.

Stevenson

Campbell

Kiehlmann

. Providing cancer services to remote and rural areas: consensus study. Br J Cancer 2003; 89(5): 821–827.

54.

Evans

Stone

Elwyn

. Organizing palliative care for rural populations: a systematic review of the evidence. Fam Pract 2003; 20(3): 304–310.

55.

Phillips

Davidson

Newton

. Supporting patients and their caregivers after-hours at the end of life: the role of telephone support. J Pain Symptom Manage 2008; 36(1): 11–21.

56.

Watanabe

Fairchild

Pituskin

. Improving access to specialist multidisciplinary palliative care consultation for rural cancer patients by videoconferencing: report of a pilot project. Support Care Cancer 2013; 21(4): 1201–1207.