The Potential Impact of Ontario’s Hospices: An

Table of Contents

JULY 2011

The Potential Impact of Ontario’s Hospices: An Evaluability Study

Authors: J. Sussman H. Seow D. Bainbridge Supportive Cancer Care Research Unit Hospice Care in Ontario

Page 1

………………………………………………….

Table of Contents Introduction ………………………………………………………………….…..…….

3

What is palliative and end-of-life care and why is it important? .………………….. 5 State of end-of-life care in Canada …………………………………………………

7

State of end-of-life care in Ontario ……………………………………….…………

9

End-of-life care and place of death …………………………………………………

11

Hospice Care …………………………………………………….……………………

13

Hospice Care in Ontario …………………………………………………………..…

14

Profile of in-patient residential hospice care in Ontario ……………..……………

17

Impact of hospice care: International evidence …………………………...………

20

Secondary data availability and research feasibility …………………………...…

23

Community hospice case studies …………………………………………..………

25

Next steps ………………………………………………………………………..……

32

References ……………………………………………………………….……………

33

Hospice Care in Ontario

Page 2

Introduction About this Report

to get a sense of the empirical knowledge

In the fall of 2010, The Supportive Cancer

base on hospice care. We examined the

Care Research Unit (SCCRU) was

research literature on hospice care in

approached through the Applied Health

Canada and other countries for

Research Network Initiative (AHRNI) to

definitions and evidence of the impact of

address questions of interest generated within

this type of care.

the Health Program Policy & Standards Branch of the Ontario Ministry of Health and

Next, the Unit looked specifically at

Long-Term Care relating to hospice care in

hospice care in Ontario to describe the

the province.

facilities and services currently offered in the province. This description includes

Through a collaborative process, brokered by

Ontario-wide service data for the majority

the research branch, three areas of interest

of hospices currently in operation.

regarding the potential impact of hospice care were identified by the Ministry. Specifically,

Finally, to enable an in-depth

these areas were the impact of hospice care

examination of the role of hospice care in

on i) the experiences of clients and their

the community, we completed focused

families, ii) acute care service use, and iii)

case studies of two representative

health system cost savings.

Ontario hospices, one in Brantford and the other in Windsor chosen due to their scope and breadth of practice as well as the availability of operational data.

Approach The SCCRU undertook a number of activities to begin to address these areas of interest. As a first step, it was important


Page 3

Through this descriptive analysis we

provide further evidence to inform the

identified key operational parameters

MOHLTC with respect to policy around

including referral patterns, occupancy

hospice care at the end of life.

rates, admissions, length of stay, care delivered within hospice setting, and demographic variables of clients.

These representative programs have also collected information on their clients

This report provides an

measuring such things as satisfaction

overview of the findings

with service, symptom severity, and

from our review of the

functioning. These data will be included in the analysis of these case studies.

hospice literature and examination of the

End-of-Life (EOL) Data Source Scan In parallel with the previously described activities, the unit undertook an exploratory

provision of this care in Ontario.

analysis of the provincial datasets and hospice specific data to determine the feasibility of doing further impact research at the provincial level using existing datasets. This process has resulted in the development of an inventory of data sources available, including provincial administrative health care data and local patient specific information that can be linked.

This preliminary scan suggested that with data linkage it is possible to compare the health services utilization outcomes for end-of-life patients who did and did not use hospice care. The findings from such research would help


Page 4

What is palliative and end-of-life care and why is it important? The World Health Organization (WHO)

End-of-life (EOL) care usually refers to

defines palliative care as:

palliative care given during the last part of

“... an approach that improves the quality

a person’s life, once their rapid state of

of life of patients and their families facing the

decline becomes evident.3

problems associated with life-threatening illness, through the prevention and relief of

Principal considerations in the provision of

suffering by means of early identification and

care at the EOL stage are indicated in

impeccable assessment and treatment of pain

Figure 1 below:

and other problems, physical, psychosocial, and spiritual” (p. 14).1

focus on comfort, dignity, and quality of life

effective pain management and symptom control

whole person approach

open and sensitive communication

encompasses both the person and their family/friends

respect for patient autonomy

Figure 1. Principles of quality end-of-life care 2

Sources: Canadian Hospice Palliative Care Association (2005) and Watson et al (2005)


3

Page 5

EOL Care Needs

The majority of people require some

The needs of those nearing the end of a life-

extent of palliation and support in their

limiting illness are complex and variable.1;2 The

final stages of life, as only about 10% of

general objective of EOL care is to alleviate

deaths occur suddenly.13 Despite this

symptoms and support the patient and the

need, gaps in the availably and quality of

family through this time in a dignified manner.4;5

care at end-of-life are commonly reported

Health services shown to be important in

in the international literature.1;14;15

supporting individuals and their families at this phase include6;7: Pain and symptom management

Consequences of Unmet Need

Practical support (e.g., activities of daily

The consequences of poor access to

living)

appropriate services and alternative level

Care of medical problems

of care settings at end-of-life are that

Patient and family counseling and support

patients often have to resort to

groups

emergency and acute care to resolve

Physio and occupational therapy

crises such as unmanaged pain and

Complementary therapies (e.g., massage,

symptoms or family caregiver

hypnosis, spiritual healing, reflexology,

burnout.14;16;17 This constitutes less

aromatherapy)

effective and efficient use of health care

Respite care for informal caregivers

resources and results in poorer quality of death.

Ideally, these services are provided in the patient’s place of residence or a specialized facility, within the context of ongoing assessment and management of the multiple physical, psychosocial, and spiritual facets of need.8 The impetus for expanding community EOL care has been to improve the quality of death and reduce healthcare costs.9-12 These benefits are anticipated by avoiding higher cost and potentially inappropriate hospital-based care.


Page 6

State of end-of-life care in Canada EOL Care Global Ranking Canada ranked 9th among the 30 OECD nations (Convention on the Organisation for Economic Co-operation and Development) on the Quality of Death Index compiled by the Economist Intelligence Unit in 2010.18 This scoring factored in a number of different indicators including availability, access, affordability, and public awareness of end-of-life care. Canada’s rank drops to 20th among these

Table 1. Quality of Death Index: Canada Score/10

Rank/40

6.2

9

5.6

20

4.9

9

Cost of end-of-life care

4.2

27

Quality of end-of-life care

8.0

5

CANADA Overall score Basic end-of-life healthcare environment Availability of end-of-life care

countries in terms of basic end-of-life environment including relative healthcare spending and health care providers per capita.

Figure 2. Quality of Death Index Comparison

However, the quality of these services in Basic end-of-life healthcare environment

Canada ranks high among the compared

10

nations.

8

Canada Average Best

6

Table 1 displays Canada’s scores on four key indices of quality death. Figure 2 depicts

Availability of EOL care

4

Quality of EOL care

2

Canada’s scores relative to the average and best scores among the OECD countries.

Cost of EOL care

Source: Economist Intelligence Unit


18

Page 7

Uniformity of EOL Care across Canada

A recent comparative case study of EOL

Federal reports have demonstrated that while

programs in seven provinces concluded

pockets of excellence in EOL care exist across

that this care in Canada remains on the

the country, the level of service available varies

margins of the health care system.22 The

greatly depending on where people live.19-21

authors state that although a nationwide commitment to advancing EOL services

Adequate access to this care typically presents

exists, inadequate health service

the greatest challenge for those living in rural

structures and planning have impeded

areas. Provincial differences in EOL services

the growth of this care in Canada.

and management also exist, as shown in Table 2. This divergence in effective interventions

In Ontario, quality standards in EOL care

may result in unnecessary suffering and poor

are evident in some areas, although they

quality of life for those in the EOL stage, as has

vary greatly between and within

be previously reported.21

regions.16;23

Table 2. Presence of Quality Standards in Palliative Care across Canada Province /Territory

Wait time tracking

24/7 case management

24/7 nursing

Protocol for timely referrals

Policy for teambased care

Support for research

Interprofessional education X

Alberta

X

X

X

British Columbia

X

X

X

Manitoba

X

X

X

X

X

X

X

X

New Brunswick

X

Newfoundland & Labrador Northwest Territories

X X

X

X

X

X

X

Nova Scotia

X

Nunavut

X

Ontario

X

X X

Prince Edward Island Saskatchewan Yukon

X

X

X

X

X

X

X

X

X

X

X X

X

X

Source: Adapted from Collier, 2011 based on analysis by the Quality end-of-life Care Coalition of Canada


X 24;25

Page 8

State of end-of-life care in Ontario End-of-Life (EOL) Care Strategy

Overall, most of the EOL Care Strategy

In the fall of 2005, the Ontario’s Ministry of

funding was earmarked for home care,

Health and Long-Term Care announced the

including specialized nursing care

End-of-Life (EOL) Care Strategy, committing

provided at residential hospices through

$115.5 million over the next three years

the CCAC.

towards integrating and enhancing end-of-life services in the home and community in the

Smaller amounts were designated for

province.26

supporting volunteer home hospice visiting, community support service

The first year’s installment of $39 million was

agencies, and delivery system

designated to the following:

infrastructure (palliative care network

$27.1 million for end-of-life home care

development).

funding including residential hospice funding (through CCACs)

The main objectives of the EOL strategy

$6 million for volunteer home hospice

were to:

visiting and other community support

Shift care from acute settings to

service agencies

appropriate alternate settings of the

$5.9 million to support common practices

patient’s choice (e.g., home);

and infrastructure

Enhance client centered and interdisciplinary service capacity; and Improve access, coordination, and

$$ EOL infrastructure

consistency of services

$$ community support $$ EOL home care (inc hospice)


Page 9

Organization of EOL Care in Ontario 2003: Regional Case Studies

Impact of the EOL Care Strategy: One Year Later

A study by the SCCRU compared the palliative

An evaluation one year after the

care “systems” of four health regions in Ontario,

implementation of the EOL Care Strategy

16

prior to the EOL Care Strategy. This study

found a 20% increase in patients

found that these regions were in different

receiving EOL homecare from the

stages of service development.

previous year. Little increase was seen however, in per-patient use of nursing

At that time, little organization of palliative care

and personal support worker hours per

existed in some of the areas examined.

week.27

Specifically, inconsistencies were found between regions in the extent of:

Hospital admissions and emergency

EOL care planning,

department visits in the last weeks of life

Needs assessment,

following the strategy remained

24/7 palliative care team access,

unchanged. The authors of the evaluative

Standardized patient assessment, and

report explained that this acute care use

Specialized professional roles.

may not have been impacted by the strategy as there was no increase in the relative amount of homecare.

Avoidable Acute Care Use A related analysis of Ontario vital statistics showed that of those who died of cancer

Similarly, the Strategy’s focus on increasing access to more EOL care

between 2002 and 2005, 84% visited the

services, but not on recruiting more home

emergency department (ED) in the last six

care providers to serve these patients,

months of life and almost half of this group in

may have restricted increases in services

the last two weeks of life.14

due to insufficient providers.

In many cases, this use of hospital services is

As part of the study, the impressions of

avoidable for issues that could be just as

EOL care administrators, coordinators,

adequately, if not better, managed in non-

and providers were obtained, many who

institutional settings with proper EOL care. 14

perceived that the strategy helped increase communication, collaboration, and constancy of EOL care.


Page 10

End-of-life care and place of death Place of Death Preference Higginson demonstrated in an international

Place of Death Linked to Quality of EOL Care

review on place of death preferences that over

Recent research shows that the care

50% of those with a life-limiting disease would

people receive is more important than the

prefer to die at home.28 When it is not possible

place.33 However, in Ontario and

to achieve this, death in an inpatient hospice is

elsewhere, the availability of high quality

often preferred by patients over that in a

EOL care varies greatly depending on

hospital setting.

the setting.34 Hospital regulations, privacy issues, providers lacking relevant

These findings are consistent with Ontario-

training, and a historically curative focus,

based research.29;30 Those preferring to receive

makes the delivery of effective in-hospital

EOL care in an institutional setting often do so

EOL care difficult.13;35;36

out of concern for overburdening their family As a result of less than optimal care,

and friends.31

patients in later stages of illness in

Enrollment in a hospice program has been found to be one of the main determinate factors in

hospital or nursing home settings commonly have significant unmet needs13;37, ultimately experiencing poor quality of death.16

meeting patients' stated

Furthermore, in-hospital medical care for

preferred place of death.32

a patient with advanced illness can be extremely expensive compared to that in other settings where the focus is less on

In contrast, most studies have found that

the treatment of disease.38

hospitalized patients are least likely to die at their location of choice.32


Page 11

Place of Death: A Canadian Perspective

Home Death: International Context

There is little Canadian data on location of

Higher rates of home death are typically

death outside of hospital. It is known that the

found in nations with developed EOL

rate of hospital deaths has declined gradually

care systems, such as the Netherlands,

from 77% of all deaths in the early 1990s to

Sweden, Italy, and Australia.42

67% nationally in 2007.39 Around a quarter of those deceased, died in their place of

Systematic reviews of the literature

residence.

examining predictive variables of place of death have found this to be dependent

Currently in Ontario about 62% of all deaths

on access to community health services,

occur in a hospital (2007 data, see Figure 3)39

particularly for home-care, among other

and 55% of cancer patients die in an acute care

less modifiable factors (intensity of

14

bed. In the United States only 37% of cancer

illness, personal preferences).33;43;44

patients die in an acute care hospital40 and this rate goes down to 10% for those under the care of a hospice program.41

Percent of all deaths occuring in-hospital

Figure 3. Hospital Deaths in Ontario 2001-2007 100.0

“Place of death may be considered a robust

90.0

indicator of how societies

80.0 70.0

broadly approach death

60.0

and dying and how they

50.0 40.0

have accordingly

30.0

organized their end-of-life

20.0 10.0

care”45, pg 2271

0.0

Year Source: Statistics Canada, 2011

39


Page 12

Hospice care What is Hospice Care?

There is growing evidence that hospice

Hospice care involves providing EOL care in

palliative care, compared to current

a setting where specialized physical,

standard care, results in better pain and

psychological, bereavement, and spiritual

symptom management, greater patient and

care is provided, tailored to the needs and

family caregiver satisfaction, and reduction

desires of the patient.

in the overall cost of care by shifting service away from acute care settings.7;11;46-48

This type of care can be provided in an inpatient setting such as a residential hospice, in an in-hospital dedicated palliative care unit, or in the patient’s residence. An in-patient residential hospice is a facility where end-of-life care is provided in a home-like environment for people who cannot be cared for at home. Outreach hospice services in the home, long-term care facility, or other residence include volunteer visiting, homecare, and professional outreach programs.

Day hospice programs and other group services are also offered, often at residential hospice facilities, providing supportive activities and respite for family caregivers.


Page 13

Hospice care in Ontario History of Hospice Care

Hospice Care

The early period of hospice care in Ontario

The different types of hospice care

outside of hospital resembled specialized

settings in Ontario are illustrated in Figure

homecare, with the vast majority of these

4. As of 2011, the 22 adult residential

services being provided to EOL clients in

hospice facilities in Ontario collectively

their place of residence.27;49 In 1997, Ian

have 192 hospice beds. A map of the

Anderson House, Ontario’s first cancer

hospices is shown on the next page.

hospice was opened and as of 2005, there were six residential hospices for adults

These hospices are freestanding centres,

operating in the province.26

differentiated from palliative care units in long-term care homes or hospitals.

Following the end of the EOL Care Strategy

Services provided in a residential hospice

(and that funding earmarked for home care,

are governed by the Long-Term Care

at residential hospices) the Ministry

Homes Act50 and provided without cost to

continues to provide defined funding of

the resident or their families. Staffing in

approximately $580,000 annually for each

these facilities must include 24/7

approved residential hospice in the province

registered nursing coverage to receive direct funding for personnel from the MOHLTC.

Figure 4. Hospice Care Settings Acute Hospital Unit

Acute Palliative Care Unit

Long‐Term Care Home

Residential Hospice

Home/Community

Patients with acute symptoms requiring diagnostic tests and/or needing treatment (e.g., surgery, blood transfusions, IV medications, daily PT, etc.). Short stay average LOS 17 days – 40% less than 7 days

Patients with difficult symptoms requiring complex treatments (e.g., pain crisis requiring nerve block); complex psycho‐social needs of patient and/or family, or those who cannot be managed in acute hospital setting. Average LOS 9 days

Patients no longer able to live independently in their home environment with the extent of community care available. LOS is longer than in other settings.

Patients who usually have a prognosis of 3 months or less and who have chosen not to have active treatment. Average LOS 21 days

Home or unit residents. Services are provided in the home and community (e.g., community supports, hospice volunteers, nursing, PSW care, out‐patient clinics, and community physician /NP teams)

Source: Adapted from a model by the Erie St. Clair EOL Care Network & the Fraser Health Authority, BC.


Page 14

Residential In-patient

Hospices in Ontario

City

Beds

City

Beds

1. Algoma Residential Community Hospice

Sault Ste. Marie

10

13. Hospice Renfrew

Renfrew

6

2. Carpenter Hospice

Burlington

10

14. Hospice Simcoe

Barrie

10

3. Casey House Hospice Inc.†

Toronto

13

15. Hospice Wellington

Guelph

10

4. Dorothy Ley Hospice

Etobicoke

10

16. Ian Anderson House*

Oakville

6

Hamilton

10

17. Lisaard House

Cambridge

6

Hamilton

10

Sudbury

10

Mississauga (proposed)

10

Grimsby

6

8. Hill House Hospice

Richmond Hill

3

20. Perram House

Toronto

8

9. Hospice Caledon (Bethell House)

Bolton

10

21. Roger's House**

Ottawa

8

10. Hospice Cornwall

Cornwall

10

22. Sakura House

Woodstock

10

Brantford

6

Sarnia

10

5. Dr. Bob Kemp Centre for Hospice Palliative Care 6. Good Shepherd Centres - Emmanuel House 7. Heart House Hospice (Hospice of Peel)

11. Hospice Niagara

St. Catharines

10

12. Hospice of Windsor and Essex County Inc.

Windsor

8

18. Maison Vale Inco Hospice 19. McNally House Hospice

23. Stedman Community Hospice 24. St. Joseph's Hospice

Hospice of Windsor and Essex County, Stedman Community Hospice, and St. Joseph's Hospice all have team outreach programs * Cancer specific focus † AIDS specific focus ** Child hospice


Page 15

Funding Hospice Care Residential and outreach in-home hospice funding is administered by local Community Care Access Centres (CCAC), with the hospice having the option of receiving this funding directly and employing support staff or having the CCAC provide these services. In either case, the hospice is responsible for other

Hospice outpatient and inpatient EOL care in Ontario is provided by specialized

operating costs (e.g. administration, meals, and

health care personnel and

maintenance) and capital expenses, achieved

over 13,000 trained

through fundraising activities.

volunteers across the The CCAC supplies other health services to the

province.26

hospice aside from nursing and personal support including drug benefits, medical supplies, and access to equipment and therapies (physiotherapy, social work, speech The volunteers in the visiting program

language pathology) as needed.

are trained to Hospice Association of Since 2006, Infrastructure Ontario has provided access to subsidized financing for capital investments to assist residential hospice

Ontario (HAO) standards to provide non-professional services to those with life-limiting illness in their place of residence. These services include

development.

emotional, practical, social and spiritual support to people as well as support and respite to family caregivers.

EOL Outreach Teams and Volunteer Visiting There are also about 80 non-residential independent hospice programs in Ontario, including patient volunteer visiting services and three home hospice outreach programs.


Page 16

Profile of in-patient residential hospice care in Ontario As of June 2009, almost 3000 patients died in

Of the 3700 referrals made

an in-patient hospice annually in Ontario, with

to these hospices, about

an average stay of 18 days.51 There are approximately 90,000 deaths in the Province

54% of patients are

each year.39

admitted and 19% die The majority of Ontario’s residential

waiting for admission.

hospices submit data annually to the

(see Figure 5).

Hospice Association of Ontario (see note below for those excluded).

Referral and subsequent activities (% of referrals)

Figure 5. Patient referral/admission to in-patient hospices in Ontario, 2010*

3707

applications/referrals

2148 (57.9%)

assessments conducted

deaths prior to admission

705 (19.0%)

2002 (54.0%)

admissions

0

500

1000

1500

2000

2500

3000

3500

4000

Number of patients

Source: Hospice Association of Ontario * Note: these data were compiled from all adult hospices except Casey House (AIDS) hospice, Dorothy Ley Hospice, Emmanuel House, Ian Anderson House, McNally House Hospice, Perram House, and Hospice Simcoe


Page 17

Where do Patients Admitted To Residential Hospice Come From? Figure 6 presents residential hospice

What are the Characteristics of Patients Admitted to Residential Hospice?

admissions by sources, including home,

The majority of patients admitted to

hospital beds, emergency department beds and

residential hospice have a cancer

long-term care facilities. Almost half of patients

diagnosis (see Table 3). While most are

admitted to residential hospice come directly

elderly, one third are 65 years and

from their homes.

younger. Nearly all patients admitted to hospice die there.

Figure 6. Admission sources to in-patient hospice placements in Ontario, 2010 (N=1912) hospital ER bed 4.9%

other (e.g., LTC) 3.4%

hospital inpatient bed 39.2%

home 52.5%

Table 3. Characteristics of patients admitted to adult in-patient hospices Characteristic Age range at time of admission (N=2185) 0 to 17 18 to 65 over 65 Diagnosis at time of admission (N=2124) Cancer Non-cancer Separations (N=1714) Discharged Died

Number

%

5 719 1461

0.2% 32.9% 66.9%

1899 225

89.4% 10.6%

56 1658

3.3% 96.7%

Source: Hospice Association of Ontario


Page 18

How Long do Patients Stay in Residential Hospice?

What is the Cost of Residential Hospice?

The average length of stay (LOS) in 2010

The estimate CCAC cost (2008) for

according to different admission sources

service to residential adult hospices is

to the residential hospices, including

$2086 per patient or $116 per patient

home, hospital beds, emergency

day.51 Provincial average total daily cost

department beds and long-term care

for a hospice bed has been estimated at

facilities is presented in Figure 7. The

$439.52

average LOS for all referral sources was 24 days.

In comparison, alternate-level-of-care (ALC) hospital beds cost approximately

Patients coming from “other” referrals such

$850 per day in the province.52 ALC beds

as long-term care tend to have shorter stays

are occupied by patients no longer in

in hospice, but these individuals account for

need of acute services but waiting to be

only a small percentage of total admissions.

discharged to a more appropriate setting. In Ontario, 7% of hospitalizations are ALC related, accounting for about 14% of total hospital days.53 This represents inefficient use of hospital resources.

Figure 7. Average LOS of admitted patients to residential hospices in Ontario, 2010

Admission source

Other source (eg LTC)

15.8

Hospital ER beds

3707

19.6

Inpatient hospital beds

24.6

Home

21.9

All sources

24.1

0

5

10

15

20

25

30

Mean number of days Source: Hospice Association of Ontario


Page 19

Impact of hospice care: International evidence Receiving community homecare services in the

Outcomes among the reviewed studies

last six months of life has been shown to

included:

significantly reduce the odds of dying in an

patient satisfaction,

acute care setting.14 Integrated community-

survival,

based programs in North America, Europe, and

emergency department use,

Australia have been found to reduce

hospitalization,

hospitalizations for older people with complex

place of death, and

health care needs, with reductions as high as

cost of care

28%.

54

Most of the programs evaluated were There is however, a lack of empirical evidence

based in the patient’s home and/or in a

as to whether expansion of residential hospice

nursing home. Only two studies were

services provides greater quality of death,

found that assessed the impact of a

patient satisfaction, and cost savings and

dedicated residential hospice.

whether it decreases emergency department use and hospitalization for end-of-life patients, particularly in a Canadian context.

Overall, the review

Effectiveness of Hospice Care: A Systematic Review

concluded that hospice care

A recently published review by Candy and

reduces hospital health care

colleagues examining hospice care support

use and increases patient

found 18 comparative evaluations, mostly from

and caregiver satisfaction

the United States.55

compared to standard care.55


Page 20

The review by Candy also found

The other residential hospice study, by

evidence that “in-home” and day hospice

Masuda and colleagues in Japan, was

services support and sustain patients’

also retrospective.57 This study compared

care, enabling them to remain in their

medical treatments given within 48 hours

place of residence.

55

prior to death. They found that hospice patients were significantly more likely to

The authors of the review noted the

receive treatment with opioids, to have a

methodological limitations of both the

urethral catheter and oral medicine and

quantitative and qualitative literature that

less likely to undergo oxygen inhalation,

their search revealed. This highlights the

total parenteral nutrition, and other

need for additional high quality research

intravenous drips. These medical

on the effectiveness of hospice care.

responses are likely reflective of the differences between caring and curative

Studies Examining Residential Hospice Outcomes

directives between the two care settings.

The two residential in-patient hospice

Other Examinations of Hospice Care: USA National Hospice and Palliative Care Organization

specific studies both used patients receiving usual hospital care as the comparison

Much of the research examining hospice

group.56;57

care has been done in affiliation with the Addington-Hall and O’Callaghan in the UK

National Hospice and Palliative Care

did a retrospective survey of bereaved

Organization (NHPCO) in the United

relatives’ perspectives on the quality of care

States; where these services are largely

the decedent had received.56 These authors

covered by the Medicare Hospice

found significant improvements in the

Benefit.17;41

hospice group on a number of measures; many demonstrative of patient-centred care.

The NHPCO benefit was initiated across the USA in 1982 to cover medical and

Respondents in the hospice arm were more

end-of-life care services for terminally ill

likely to report that adequate information,

beneficiaries.17;58 Since this time, there

nursing care, and pain management had

has been a dramatic increase in use of

been received and higher satisfaction with

these services with coverage in 2009 of

the quality of nursing and physician care.

42% of all deaths.41


Page 21

Just under half of the 5000 hospice

Furthermore, it was estimated that use of

programs in the USA are run by for-profit

this program for a longer period of time

organizations, a major difference from

would result in cost savings in 70% of

the Canadian health care milieu.

41

cases.

USA hospice programs tend to be home

A study of terminally ill patients with

(69%) or nursing home based rather than

dementia in the US reported that daily

being contained within a residential

costs for hospital care were six times

hospice (21%). This also contrasts with

higher than hospice home care, although

the current status of hospice care in

it was noted that the latter may result in

Ontario.

higher support costs incurred by the patient and their family.38

Evidence of Effectiveness of NHPCO Based Hospice Care

Another study that examined a large

Although the settings of care are not

matched sample of decedents who had

entirely equivalent between Ontario and

been terminally ill found that the average

USA hospice care, research findings

survival was 29 days longer for hospice

demonstrating that these hospice

patients than for non-hospice patients.60

programs save money for the US Medicare system and improves the quality care to patients with life-limiting

Earlier appropriate access

illness58;59 may have applicability across

to hospice services has

settings.

been proposed to lead to better symptom control and

One study found that

more practical management

hospice reduced Medicare

of the patient’s condition,

costs by an average of

avoiding costly and

$2,309 per patient.59

aggressive curative attempts that only prolong suffering.11;61-63 Hospice Care in Ontario

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Secondary data availability and research feasibility Our examination of existing data relating

Figure 8 shows the data variables

to hospice care in Ontario revealed

available by level from each source: local

variables that can be organized into

data from the individual hospice,

System Structure (material and human

province-wide data from the Ontario

resources), Processes of Care (activities

Hospice Association, and hospitalization

and transactions), and Patient Outcome

data from the Discharge Abstract

levels.

Database maintained by the Canadian Institute for Health Information (CIHI).

Figure 8. Hospice related data available from various data sources: Structure and process levels Program Type

Data sources Variables

number, FT, and professions of staff catchment area Inpatient hospice number, FT, and professions of staff catchment area number of beds Supportive number, FT, and professions of staff programs programs offered Hospice outreach mean number on waiting list total number of referrals number from each referral source type mean duration of service total/average number of visits by service type total/average number of visits by provider type patient characteristics (age, diagnosis, sex) place of visit Inpatient hospice mean number on waiting list total number of referrals number from each referral source type total number assessed for entry total number admitted patient characteristics (age, diagnosis) mean duration of stay mean duration of stay by referral source type occupancy rate Supportive number of sessions offered by type programs number of attendees *Data includes 15 of 21 relevant hospices (not child or AIDs specific) Process

Structure

Hospice outreach


Individual Hospice X X X X X X X X X X X X X X X X X X X X X X X X X X

Ontario Hospice Association*

CIHI Hospital Administration Data

X

X X X X X X X X

Page 23

Figure 8 cont. Hospice related data available from various data sources: Outcomes level Program Type

Data sources

Individual Hospice

Variables

Outcomes

Hospice outreach and Inpatient hospice

Supportive programs

% died in residential hospice % discharged from residential hospice total number died on waiting list family satisfaction with hospice care emergency department use place of death (hospital) hospital admission “appropriate” hospital admission (Hospice Outreach) Palliative Performance Scale (PPS) score Edmonton Symptom Assessment System (ESAS) score Impact of music and art therapy

X X X X

Ontario Hospice Association* X X X†

CIHI Hospital Administration Data

X X X X X X X

*Data includes 15 of 21 relevant hospices (not child or AIDs specific) †In-patient hospice only

The Ontario Hospice Association (OHA)

This preliminary scan demonstrates that

dataset includes many of the variables at

with this data linkage it is possible to

the individual residential hospice level,

compare the health services utilization

but with province-wide scope.

outcomes for end-of-life patients who did and did not use hospice care.

Linkage is possible between local and OHA data sources and the CIHI hospital dataset to track emergency department use, hospital admission, and hospital place of death, for those using the hospice programs. The CIHI Ontario data can be accessed and linked through arrangement with the Institute for Clinical Evaluative Sciences ICES.


Page 24

Community hospice case studies We completed focused case studies of

Staff

two representative Ontario hospices, one

3 palliative care physicians

in Brantford and the other in Windsor.

1 Hospice Palliative Care Nurse

These hospice programs were chosen

Specialist

because of their scope and breadth of

Community Nurses and Personal

practice as well as the availability of

Support Workers provided

operational data.

through CCAC Supportive Care Coordinator/Chaplain

CASE STUDY 1

Volunteer Coordinator

Stedman Community Hospice

Day Program Coordinator

Catchment area

Residential Care Coordinator

Brant Region including the City of

100 active volunteers (1100+

Brantford and Six Nations Reserve (in

hrs/month)

LHIN 4) Program descriptions Program overview

Day Wellness Programming

•

Community Support Group

Wellness sessions are run twice per

Programs

week for four hours. Provides an

Hospice Residential Home (In-

opportunity for individuals living with a life

patient) Care Program (6 beds) –

limiting illness to socialize, obtain

began in March 2006

information relating to their condition, and

Outreach Supportive Care Team –

share feelings, facilitated by hospice staff

began in December 2007

and 8 to 10 volunteers. These sessions

•

•

also provide respite for family caregivers. There were 2823 participants between June 2005 and Dec 2009.


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Grief Bereavement/Spiritual Support Programming

Stedman Hospice Service Statistics

Compassionate listening and support for

Residential Care Program: The average

those anticipating the loss of their life or

length of stay is 13 days for patients

grieving the loss of a loved one.

admitted (2009/10) and the occupancy rate is 90%. In 2009, there were 217

EOL Residential Care Program

referrals and 117 admissions. The places

This in-patient care includes 24/7

where patients were admitted from are

specialized nursing and personal support

displayed in Figure 9.

worker coverage in a residential setting. Patients are admitted from home and from hospital. Figure 9. Referral sources to residential care at Stedman hospice, 2009 (N=117)

Outreach Supportive Care Team The outreach team consists of two palliative care physicians, a palliative

hospital ER bed other 6.8% 2.6%

care nurse specialist (APN), and a supportive care/bereavement advisor, who visit patients in their place of residence.


home 51.3%

Team members assess the needs of the patient and their caregiver and provide pain and symptom management, as well as emotional, spiritual, and bereavement support, as required. The team works in

Source: Stedman Community Hospice

partnership will CCAC palliative care nurse case managers.


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Outreach Team: In mid 2010, there were

Deceased patients received the outreach

156 patients/families on case load with

service an average of 79 days. Figure 11

about 30 new cases per month. Between

shows the number of home visits and

150 and 200 home visits are made each

consultations made by the different EOL

month by doctors or nurses, about one

outreach team members. Consultations

third of these visits are after hours.

include those made with patient and their

Referral sources to the outreach program

families, as well as, with other health

are shown in Figure 10.

care providers such as family physicians and CCAC case managers.

Figure 10. Referral sources to outreach team at Stedman hospice, 2010 (N=156)

Most of the patients (91%) receiving the

Self 0.6% Hospital 1.3%

Other 1.3%

outreach service had a diagnosis of

Relative 2.6%

cancer. The average Palliative

Cancer Center 5.1%

Performance Scale (PPS) score of patients in this program was 50 (out of 100) implying considerable assistance

CCAC 58.3%

required.

Physician 30.8%

Outreach team member

Figure 11. Stedman EOL outreach team visits and consultations, Apr 1 2009 – Dec 31 2009 MD HV

424

Nurse specialist HV

428

3707 6787

MD or Nurse consult

464

Supportive care coordinator HV

1106

Supportive care coordinator consult 1

10

100

1000

10000

Number of home visits (HV) or consults Source: Stedman Community Hospice


Page 27

Almost half of the patients (44%) had an

Most (70%) wanted to remain in their

ESAS score of 5 or greater for pain at

home. The remainder largely wished to

initial assessment. Within 72 hours,

die at a residential hospice.

levels of pain had been reduced in 91% of these cases.

Of the 100 patients using the outreach service in 2010 which died, the home

Patients of the outreach hospice service

death rate was 34%. A slightly greater

were asked their preferred place of

number were transferred to the

death, upon initial assessment (see

residential hospice, where they died (see

Figure 12).

Figure 13).

Figure 12. Preferred place of death for patients in Stedman outreach program, 2010 (N=141) hospital LTC inpatient 0.7% bed 4.3%

home 70.2%

residential hospice 24.8%

Figure 13. Place of death for patients in Stedman outreach program, 2010 (N=100) LTC 2.0% home 34.0%



Source: Stedman Community Hospice


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CASE STUDY 2

Pain & Symptom Management Clinic

The Hospice of Windsor and Essex County

This clinic offers pain and symptom

Catchment area

ambulatory patients. Services include

Region of Essex including the City of

Integrative Medicine Program, Radiant

Windsor (in LHIN 1).

Touch, and Therapeutic Touch. However,

assessment, tracking, and relief for

the majority of pain and symptom Program overview

management services offered by the

•

Community Support Group

hospice are provided in-home through

Programs

the community outreach team.

•

•

Hospice Residential Home (Inpatient) Program (8 beds) – began

Hospice Residential Home

in 2007

The residential hospice offers in-patient

Community Outreach Team –

-hour

began in 1979

nursing care and support. Specially trained patient care volunteers assist with

Staff

the provision of supportive care. Patients

45 employees total (not including

are admitted from home and from

volunteers) – see program descriptions.

hospital.

Program descriptions

Community Outreach Team

Support Groups

The outreach team consists of five

A number of different support groups

nurses, three social workers and 1.5 full-

meet at the hospice which include a foci

time position physicians who visit

on Lifestyle Changes, Living through

patients and their families in their place of

Grief, Coping with Depression and

residence. Team members provide

Anxiety at end-of-life, and a Wellness

symptom management, counseling, and

Drop-in.

education.

Healing & Wellness Programs

The team works in partnership will CCAC

There are 19 different wellness programs

palliative care nurse case managers.

operated at the hospice including Tai Chi,

Volunteers also provide respite care and

Yoga, Relaxation and Visualization, and

transportation to patients, as well as

Creative Art. Hospice Care in Ontario

Page 29

long-term follow-up. A spiritual care team

The average length of stay for patients

is also involved. Referrals are made to

admitted was 18 days (monthly range

community outreach from time of

from 6 to 45 days). Their average

diagnosis to bereavement.

Palliative Performance Scale (PPS) score was 35 (out of 100) implying total care required.

Windsor Hospice Service Statistics Residential Care Program: In 2010, 283

Figure 14. Referral sources to Windsor hospice residential care, 2010 (N=136)

referrals were made to the residential hospice. Of the 136 patients admitted,

nursing home LTC 4.4% 1.5%

nearly all were cancer patients (see Table 4).


The average wait to be admitted to the hospice from referral was 3.5 days.

home 70.6%

Throughout the year, 41 died while on the waiting list for admission. Most patients were transferred to the hospice directly from their home (see Figure 14)

Table 4. Admissions, deaths, and discharges to Windsor hospice, 2010

Admissions Cancer Non-cancer Deaths Cancer Non-cancer Discharges

Total

Male

Female

City

County

130 6

59 3

71 3

101 5

29 1

126 4

56 2

70 2

95 4

31 0

5

2

3

3

2

Source: The Hospice of Windsor and Essex County


Page 30

The monthly occupancy of the hospice, Figure 16. Place of death for patients in Windsor outreach program, 2009 (N=608)

on average, is 87.3%. 129 patients died at the hospice in 2010 and 5 were

other 1.8%

discharged, mostly to their home.


The total annual hours of volunteer services at the hospice has increase

palliative care unit 18.1%

steadily since inception, with 12750 hours recorded in 2010, 3657 of these hours contributed towards patient care.

home 33.6%


nursing home 0.7%

Outreach Team: Most patients are referred to the hospice outreach team from the CCAC, a physician, or the regional cancer centre (see Figure 15).

Patients in the community receive the outreach service an average of 90 days. Figure 16 illustrates that about a third of Figure 15. Referral sources to outreach team at Windsor hospice, 2009 (N=1090)

these patients die at home and half of that at the residential hospice.

friend 0.8%

hospice 1.3%

com. RN 2.5% hospital 3.4%

other 3.9%

self 9.6%

CCAC 29.0%

relative 13.3% physician 21.7%

cancer center 14.5%

Source: The Hospice of Windsor and Essex County


Page 31

Conclusions

International research suggests that,

the province occur in a residential

compared to end-of-life (EOL) care in

hospice.

acute hospital settings, community hospice services lead to higher

The case studies of the two example

quality care and reduced health care

hospice in-patient and outreach

system costs.

programs (Stedman Community Hospice and Hospice of Windsor and

Receiving hospice services has been

Essex County) demonstrate

found to be one of the main

variations in service development, but

determinate factors in EOL patients'

are similar in desired endpoints;

having their stated preferred place of

namely, contributing to the provision

death met. Nonetheless, gaps still

of appropriate services in appropriate

remain in the empirical literature as to

settings of care.

the effectiveness of hospice programs, particularly in a Canadian

Further research is needed to

context.

empirically assess the effectiveness of hospice services in Ontario. Our

Residential and outreach hospice

preliminary examination determined

care in Ontario is a relatively new

that sufficient provincial and local

option for EOL patients and is

level data exist to conduct an impact

developing gradually. With the

analysis to examine outcomes of

expansion of residential hospice

hospice care on both i) patient and

capacity in the past decade, currently

family EOL experiences, and ii) the

about 4% of all deaths in

health system in Ontario.


Page 32

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Supportive Cancer Care Research Unit Juravinski Cancer Centre 699 Concession St. Rm 4-204 Hamilton, ON L8V 5C2 PH: (905) 387-9711 ex. 64501 FAX: (905) 575-6308 http://fhs.mcmaster.ca/slru/sccru/


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The Potential Impact of Ontario’s Hospices: An

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