Hospice care in Ontario - Palliative Care Innovation

Transcription

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
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%
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
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
Page 22
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
catchment area
number of beds
Supportive
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.
Page 25
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.
hospital
inpatient
bed
39.3%
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.
Page 26
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
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%
hospital
inpatient
bed
25.0%
residential
hospice
39.0%
Page 28
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.
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).
hospital
inpatient
bed
23.5%
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.
residential
hospice
15.6%
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%
hospital
inpatient
bed
30.3%
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/
Page 38

Hospice care in Ontario - Palliative Care Innovation

Transcription

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