Edmonton Regional Palliative Care Program: impact on patterns of

Edmonton Regional Palliative Care

Program: impact on patterns

of terminal cancer care

Eduardo Bruera, MD; Catherine M. Neumann, MSc;

Bruno Gagnon, MD; Carleen Brenneis, RN, MHSA;

Patricia Kneisler, ISP; Pat Selmser, RN, BScN; John Hanson, MSc

Abstract

THE EDMONTON R

EGIONAL PALLIATIVE CARE PROGRAM was established in July 1995 to

measure the access of patients with terminal cancer to palliative care services, de-

crease the number of cancer-related deaths in acute care facilities and increase the

participation of family physicians in the care of terminally ill patients. In this retro-

spective study the authors compared the pattern of care and site of deaths before

establishment of the program (1992/93) and during its second year of operation

(1996/97). Significantly more cancer-related deaths occurred in acute care facilities

in 1992/93 than in 1996/97 (86% [1119/1304] v. 49% [633/1279]) (p ≤ 0.001).

The number of inpatient days decreased, from 24 566 in 1992/93 to 6960 in

1996/97. More cancer patients saw a palliative care consult team in 1996/97 than

in 1992/93 (82% v. 22%). The shift from deaths in acute care facilities to palliative

hospices suggests that the establishment of an integrated palliative care program

has increased access of patients with terminal cancer to palliative care.

n Edmonton and other Canadian cities the limited integration of community-

based physicians and nurses, continuing care facilities, acute care hospitals, can-

cer centres and palliative care specialists has become a major obstacle to pa-

tients seeking access to palliative care in the most suitable setting. Most cancer

patients die in acute care facilities after medium to long-term stays.

1–3

The resulting

increased cost and inappropriate care occurs because staff in these institutions are

not trained in the management of the physical and psychosocial complications of

terminal cancer.

4–11

One of the perceived reasons why patients die in acute care fa-

cilities in Edmonton is the limited involvement of family physicians in their care. In

the Edmonton region in 1992/93, only 25% of family physicians had hospital ad-

mitting privileges, whereas more than 80% of cancer-related deaths occurred in

these institutions after an average stay of about 1 month. Therefore, most of these

admissions took place under the care of a specialist.

The Edmonton Regional Palliative Care Program was established in July 1995

to increase the access of patients with terminal cancer to palliative care services, de-

crease the number of cancer-related deaths in acute care facilities, increase the par-

ticipation of family physicians in the care of terminally ill patients, and provide

these physicians with adequate support.

We compared the patterns of utilization of health care services and access to pal-

liative care by patients before the establishment of the program (1992/93) and dur-

ing its second year of operation (1996/97).

The Edmonton Regional Palliative Care Program

The program consists of previously existing and newly established or upgraded

elements (Fig. 1). Previously existing elements include a 14-bed tertiary palliative

care unit and a weekly tertiary multidisciplinary palliative care clinic in the local

cancer centre. These 2 components were maintained at the same level of funding.

Five new elements were added to the program. A palliative hospice (palliative

Education

Éducation

From the Edmonton Regional

Palliative Care Program,

Division of Palliative Care

Medicine, and Cross Cancer

Institute, University of

Alberta, Edmonton, Alta.

Dr. Bruera is currently with

the Department of Symptom

Control and Palliative Care,

University of Texas MD

Anderson Cancer Center,

Houston, Tex.

This article has been peer reviewed.

CMAJ 1999;161:290-3

290 JAMC • 10 AOÛT 1999; 161 (3)

Edmonton Regional Palliative Care Program

CMAJ • AUG. 10, 1999; 161 (3) 291

continuing care unit) was set up in 3 continuing care hospi-

tals, providing a total of 56 beds. Four full-time salaried

teams, consisting of a consultant palliative care physician

and nurse, provide consultations for palliative care patients

at home, in the 3 hospices, in the region’s 3 community

hospitals and in the continuing care facilities. Funding to

the Regional Home Care Program was increased for the

delivery of 24-hour palliative care at home. Another team

(consultant palliative care physician and nurse) was added

to the existing team to serve patients in the region’s 2 ter-

tiary care hospitals. Finally, a registry of family physicians

willing to deliver palliative care to new patients was begun

and widely publicized among the city’s family physicians. In

addition, an increased fee for the delivery of palliative care

at home or in hospice was established for family physicians.

Symptom assessment tools were developed, including

the Edmonton Symptom Assessment System,

the Mini

Mental State Questionnaire,

the CAGE questionnaire,

the Edmonton Functional Assessment Test

and the Ed-

monton Staging System for cancer pain.

17,18

These tools, as

well as a unified system for recording medical history and

medication, were used to ensure simple transfer of patients

among the various care settings. In addition, a common

protocol was used in all settings for the management of

various physical and psychosocial symptoms.

All physicians licensed in the region were notified by mail

about the program and the procedure for consultations, a

monthly update on the management of specific symptoms

was mailed with a reminder about the consultation proce-

dure, and a description of the program was presented during

medical rounds at the cancer centre and all family medicine

programs and was posted on the University of Alberta’s

family medicine home page (www.palliative.org).

Impact on cancer care and mortality patterns

A total of 1304 patients died of cancer in the Edmonton

region in 1992/93 and 1279 in 1996/97 (Table 1). The

number and location of cancer-related deaths in acute care

facilities (tertiary care hospitals, community hospitals and

Fig. 1: Model for the Edmonton Regional Palliative Care Program, established in July 1995.

Continuing care centre§ 53 63

Home 126

Other 6

*Data are from the Alberta Cancer Registry, except for palliative hospice data, which come from the Edmonton Regional Palliative Care Program Registry.

The Alberta Cancer Registry data are provisional because some deaths may have been registered in subsequent years.

†From χ

analysis.

‡Includes acute care hospitals, the local cancer centre and the tertiary palliative care unit.

§Includes continuing care facilities, nursing homes and auxiliary hospita

ls.

Year; no. (and %) of cancer-related deaths

227

Location

1992/93

n = 1304

(0.5)

(10)

(4)

Acute care facility‡ 1119 (86)

Palliative hospice 0

152

378

633

1993/94

n = 1281

(0.3)

(12)

(5)

1062

Table 1: Distribution of cancer-related deaths by location in the Edmonton region from 1992/93 (before

establishment of the Edmonton Regional Palliative Care Program in 1995) to 1996/97 (the program’s second year

of operation)*

(83)

1996/97

n = 1279

96 143

259

1994/95

n = 1240

(1)

(21)

(8)

877 (71)

279

5 (0.2)

(18)

1995/96

n = 1342

(0.4)

(21)

(11)

671

(18)

(50)

244

(3)

(30)

(49)

0.48

< 0.001

0.10

< 0.001

p value†

the cancer centre), palliative hospices, continuing facilities

(including regular continuing care facilities, auxiliary hospi-

tals and nursing homes) and at home are summarized in

Table 1. There was a significant shift in location from acute

care facilities to continuing care facilities and home over

that period. Post hoc comparisons showed that, between

1992/93 and 1994/95, there was a small decrease in the

number of deaths in acute care hospitals accompanied by an

increase in deaths at home (p < 0.001, χ

analysis).

The number of deaths and lengths of stay in acute care

hospitals and the cancer centre decreased significantly be-

tween 1992/93 and 1996/97 (Table 2). They did not change

over time in the tertiary palliative care unit.

In 1992/93, 22% of cancer patients (290/1341) had con-

sulted a palliative care team, as compared with 84%

(1110/1326) in 1996/97 (p < 0.001). In 1996/97, 372 physicians

consulted the program for joint care of specific patients. Of

these, 287 (77%) were family physicians, representing 35% of

the 816 family physicians registered in the Edmonton region.

A subset of 268 consecutive patients with terminal can-

cer who were discharged from the cancer centre were asked

whether they wanted to remain under the care of their fam-

ily physician or wished to change, or whether they had no

designated family physician. Most (240 [89%]) wanted to

remain under the care of their family physician. The re-

maining 28 expressed a need for a new family physician; in

all cases, an alternative physician was identified within 24

hours from the list of 150 family physicians who were will-

ing to take charge of new patients.

Interpretation

We found a significant shift in deaths from hospital to

palliative hospice and home care settings since the intro-

duction of the Edmonton Regional Palliative Care Pro-

gram as well as a significant decrease in average length of

stay in both acute care facilities and the cancer centre. Al-

though we reported only patients’ last stay in these facilities

before death, it is unlikely that a decrease in this time (in

our experience, the longest stay) after the inception of the

program would be offset by an increase in the duration of

earlier stays. It is our impression that increased access to

palliative care and improved planning of care have resulted

in a decrease in total inpatient bed use. However, our pa-

tient data systems were not able to test this hypothesis, and

further studies are required to measure the overall utiliza-

tion of acute care beds.

There was a significant discrepancy in the number of can-

cer-related deaths reported by the Alberta Cancer Registry

and the Capital Health Authority for both 1992/93 and

1996/97. According to the latter, the total number of deaths

in acute care hospitals was 955 in 1992/93 and 498 in 1996/97

(Table 2), as compared with 1119 and 633, respectively, re-

ported by the Alberta Cancer Registry (Table 1). This dis-

crepancy is probably due in large part to different definitions

of cause of death. However, data from both sources confirm a

large and significant shift in the number of deaths from acute

care facilities to palliative hospices and home.

The main uncertainty regarding this program was the

level of interest on the part of family physicians and their

willingness to cooperate with the program’s consultants.

We found that 287 (35%) of the family physicians in the

Edmonton region consulted the program regarding their

own patients during 1996/97, and more than 550 have con-

sulted the program since July 1995. Family physician in-

volvement in palliative care is likely higher than reported

here because some physicians may be delivering care to

their patients without consulting the program. These find-

ings suggest that palliative care programs in which primary

care is delivered by palliative care specialists may not be

necessary as long as adequate reimbursement, education,

consultant support and access to beds are available to fam-

ily physicians.

The main disadvantage of programs in which primary

care is delivered by full-time palliative care specialists is

that they do not promote education on palliative care deliv-

ery among family physicians, thereby fostering dependency

and reducing the likelihood that family physicians will ap-

ply this knowledge earlier in the course of illness or to pa-

tients with diseases other than cancer. In addition, these

programs make it necessary for patients and their families

to establish a new relationship with a different treating

physician, and they may delay and decrease the rate of re-

ferrals by primary practitioners or specialists who want to

remain the treating physician.

On the other hand, the main limitation of a palliative

care program in which primary care is delivered by fami-

ly physicians is the limited exposure of family physicians

to palliative care patients: during 1996/97, 1279 cancer-

related deaths occurred in the Edmonton region, where

there are 816 registered family physicians. However, our

program deals with this potential problem by providing

physician–nurse consult teams to assist family physicians

throughout the patient’s illness.

For the current analysis, we were unable to compare

data on symptom control in 1996/97 and 1992/93 because

most of the deaths in 1992/93 occurred in acute care facili-

Bruera et al

292 JAMC • 10 AOÛT 1999; 161 (3)

No. of patient-days

Cancer centre†

No. (and %) of deaths 130

Mean length of stay

(and SD), d

Total number of patient-days

Variable 1992/93

1 958

(21)

Acute care hospitals*

(10)

22 608

No. (and %) of deaths 825

(16)

(63)

Mean length of stay

(and SD), d

1996/97

875

(10)

(7)

6 085

403

Table 2: Number of cancer-related deaths and length of last hospital

stay before death in 1992/93 and 1996/97

(7)

(32)

0.02

< 0.005

p value

< 0.001

Note: SD = standard deviation, NA = not applicable.

*Source: Evaluation, Information and Research, Capital Health Authority, Edmonton.

†Source: Health Records, Cross Cancer Institute, Edmonton.

ties, where physical and psychosocial distress are not rou-

tinely measured. However, there is strong evidence that the

delivery of palliative care to patients in hospital by oncolo-

gists and specialists is frequently inappropriate.

4,5,11,21–24

The

shift of patients from acute care facilities to palliative hos-

pices and home under the program most likely improved

comfort for patients and their families.

Further studies should assess symptom control as well as

patient and family satisfaction. Future research should also

address cost of care. Because inpatient services are the most

expensive mode of care for terminally ill patients,

it is

likely that programs such as ours will result in cost savings.

Competing interests: None declared.

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Reprint requests to: Dr. Eduardo Bruera, Director, Palliative Care

Program, Grey Nuns Community Hospital and Health Centre,

1100 Youville Dr. W, Edmonton AB T6L 5X8

Edmonton Regional Palliative Care Program

CMAJ • AUG. 10, 1999; 161 (3) 293