Sample Mortality Reports
Issued by the
State of Connecticut
Department of Mental Retardation
September 2002
March 2003
October 2003
Health and
Mortality
This is the first of a series of semiannual reports on trends and
related information pertaining to the health and quality of care
received by individuals with mental retardation served by the
Connecticut State Department of Mental Retardation. Future
reports are scheduled for March and September of each year.
September reports will focus on an analysis of annual data, with
a special emphasis on mortality trends. March reports will focus
on any significant or special trends, new initiatives and
important news and information related to mortality and risk
reduction.
ANNUAL
REPORT
For the Period July 1, 2001 to June 30, 2002
Issued
NOVEMBER
2002
Overview
of
DMR
Mental retardation is a developmental disability that is present in about 1% of the Connecticut
population. In order for a person to be eligible for DMR services they must have significant deficits in
intellectual functioning and in adaptive behavior, both before the age of 18-yrs. DMR is also the lead
agency for the Birth to Three System in Connecticut. This system serves infants and toddlers
with developmental delays. Altogether, DMR assists almost 19,500 individuals and their
families, providing a broad array of services and supports.
THE PEOPLE
SERVED BY DMR
Includes Birth to Three children.
DMR provides or funds
residential supports for
6,621 people.
7,186 individuals living
at home without formal
residential support
62% of the people
we serve
Less than half
(38%) of the
people we serve
12,034
7,394
live in their own
homes or with
family without
residential support
live in
residential settings
Residential services for an
additional 773 people are
funded by other sources.
4,848 children living at
home and receiving only Birth
to Three services
as of 6/30/02
Health
&
Mortality Review ANNUAL REPORT
September 2002
Mortality Trends
An important component of the risk management systems present within DMR involve the analysis and
review of deaths to identify important patterns and trends that may help increase knowledge about risk
factors and provide information to guide system enhancements. Consequently, DMR collects information
on the death of all individuals served by the department. The following section provides a general
description of the results of this analysis for Fiscal Year 2002 (July 2001 through June 2002).
Mortality and Residence
Type of Residential Support
At Time of Death
During the 12 month time period between July 1, 2001
and June 30, 2002 a total of 178 out of the 19,500
individuals served by DMR passed away. As can be
Other
2%
in the graph to the right
seen
approximately half died while being served in a
residential setting operated, funded or licensed
by DMR (blue section). The other half were living at
home (family home or independently), in a long-term
care facility (e.g., nursing home), or other non-DMR
setting . This general pattern is consistent with that
observed last fiscal year, although there was a slight
reduction in the relative percentage of deaths that
occurred in CLAs, Supported Living and Long-Term
Care facilities.
LTC
28%
Campus
15%
The average Death Rate* is expressed as the no. of
deaths per 1000 people served. It compares the
number of deaths to the number of persons served in
each type of setting (no. deaths /population X1000),
and continues to show a predictable pattern: In
general, the higher need for specialized care, the
higher the average rate of death.
No. Deaths per 1000 People
FY 2002
No. Deaths per 1000
People
104.0
100
80
60
40
20
29.7
15.2
4.4
4.4
Home
SL
8.7
0
CTH
CLA
Campus
Residential Setting
SL
3%
CTH
3%
CLA
30%
This graph shows the number of
Mortality Rate by Where People Live
120
Home
19%
LTC
people who died for every
1000 people served in each
type of setting. The settings
to the left tend to provide less
comprehensive care and support than
the settings to the right. This often
reflects the level of disability and
specialized care needs of the people
who generally live in each type of
setting.
For example, persons living in LTC
(nursing homes) tend to be older
than other people served by DMR,
and, usually went to a nursing home
because they needed skilled nursing
care. Their death rate is much higher
than for other people served by DMR.
* In this report we use the term “average death rate” to reflect what is more commonly referred to as the “crude” death rate in mortality
and epidemiological research.
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Health
&
Mortality Review ANNUAL REPORT
September 2002
Mortality Rate
No. Deaths
Comparison: FY01 and FY02
The two graphs to the right
182
compare the number of deaths within
the population served by DMR and the
average death rate for fiscal years
2001 and 2002. As can be seen,
FY02 experienced a slight decrease in
both measures.
178
FY01
No. Deaths per 1000 People
100.2
104.0
100
60
29.8 29.7
16.6 15.2
4.4
7.2
4.4
8.7
FY01
FY02
death rate (the number deaths
1000 persons served) for fiscal year
2002 with that for last fiscal year
(FY2001) by type of residential setting.
Small differences can be seen, with the
rate decreasing for persons living in CLAs
(group homes) and in Campus settings
(STS and regional centers). The most
pronounced decrease occurred for
persons receiving Supported Living
services.
80
4.2
12.061
This graph compares the
120
40
12.649
FY02
Comparison of FY01 and FY02
Mortality Rate by Where People
per Live
20
No. Deaths per 1000
Comparison: FY01 and FY02
8.7
0
Home
SL
CTH
CLA
FY01
FY02
Campus
LTC
Slight increases in the mortality rate
occurred for persons living in Long-TermCare facilities and their family homes
Caution must be exercised in reviewing this data since the actual number of deaths in each of these settings
was relatively small. The differences across this time period are therefore most likely not statistically
significant.
Gender and Mortality
During Fiscal Year 2002 a little over half (52%) of the 178 individuals who passed away were men. However,
DMR serves more men than women. The No. Deaths per 1000 people served shows that women tend to have
a higher death rate. It is important to note, however, that the average age of women served by DMR is greater
than the age of men, with almost two times as many females over the age of 85-yrs than males. Thus, a higher
death rate for women would be expected since they are, as a group, older than the men served by the
department.
GENDER
GENDER
Men
Women
Total
No.
Deaths
92
Percent of
Deaths
Rate
(No. Deaths
per 1000)
52%
11.139
86
48%
13.233
178
100%
12.061
No. Deaths per 1000
FY 2002
13.233
11.139
Men
-3-
Women
Health
&
Mortality Review ANNUAL REPORT
September 2002
Mortality Rate by Age Range
Age and Mortality
The relationship between age and
mortality shows the expected
trend, with the mortality rate
increasing as people served by
No. Deaths per 1000 People Served
FY 2002
No. Deaths per 1000
250
here,
DMR get older. As seen
at around 70 -yrs of age there is a
dramatic rise in mortality,
again, in line with expectations
and the trends observed in
the general population.
200.0
200
150
92.5
100
39.8
50
6.6
1.7
2.8
7.6
0-9
10-19
20-29
30-39
10.6
19.8
40-49
50-59
47.5
0
60-69
70-79
80-89
90+
AGE RANGE
AGE RANGE
(in years)
0-9
10-19
20-29
30-39
40-49
50-59
60-69
70-79
80-89
90+
Total
No.
Deaths
9
4
7
20
28
35
33
21
16
5
178
Percent of
Deaths
5%
2%
4%
11%
16%
20%
19%
12%
9%
3%
100%
Individuals living at home (especially those
living with their family) are younger than the
other persons served by DMR. They also
have a much younger average age at
death. The oldest group served by DMR
are living in LTC facilities. They have the
highest average age at death.
Death
Rate/1000
6.589
1.652
2.834
7.639
10.566
19.841
39.807
47.511
92.486
200.000
12.061
Comparison of Average Age & Average
Age at Death by Residential Setting
FY 2002
this graph
80
68
70
64
58
60
Age (in Years)
As can be seen in
there is a relatively strong relationship
between the average age of the
population living in each type of
residential setting and their average
age at death. The largest difference
between the two variables exists in
CLAs, where the average age of death
is 13-yrs higher than the average age
of the population living in this type of
setting.
50
45
51
48
42
40
53
45
39
32
30
24
20
10
0
Home
SL
CTH
CLA Campus
Residential Setting
Ave Age
-4-
Ave Age at Death
LTC
Health
&
Mortality Review ANNUAL REPORT
September 2002
Level of Disability and Mortality
in this graph
As can be seen
,
the relationship between level of mental
retardation and mortality shows the
expected trend. Persons with the most
significant levels of mental retardation
(severe and profound) have a much
higher rate of mortality.
Mortality Rate by Level of Disability
for Persons Served by DMR
FY 2002
30
26.04
No. Deaths per 1000
In addition to age and gender, the level
of mental retardation is another factor
that affects a person’s life expectancy.
Persons with more severe levels of
disability typically have many co-morbid
conditions (other medical diagnoses such
as epilepsy, cerebral palsy, etc.),
including mobility and eating
impairments. These disabilities have a
significant effect on morbidity (illness)
and mortality.
25
19.95
20
Overall average rate = 12.209
15
10
9.23
8.78
8.51
No MR or
ND
Mild
Moderate
5
0
Severe
Profound
Level of Mental Retardation
No MR or ND category Includes children receiving DMR services through the Birth-to-Three
system who are too young to test for mental retardation and adults for whom the DMR has
limited responsibility under the Federal Nursing Home Reform Act (OBRA 87) who do not
have mental retardation. It may include some DMR clients who were DMR clients prior to
Connecticut’s current statutory definition of mental retardation.
During FY 2002 (July 1, 2001 to June 30, 2002) 123 cases were formally reviewed by DMR Mortality
Review Committees. The information presented in the next section summarizes ONLY those deaths that
were reviewed and will therefore be different from the numbers discussed in the preceding section.
Information regarding FY02 reviews will be presented for ALL CASES REVIEWED and for only those
deaths that OCCURRED DURING FY02.
DMR Mortality Review
DMR policy establishes formal mechanisms for the careful review of consumer deaths by local regional
Mortality Review Committees and a central Medical Quality Assurance Board. This latter entity, modified by
the Governor’s Executive Order No. 25, is now called the Independent Mortality Review Board (IMRB) and
includes representation from a number of outside agencies as well as a consultant physician. During FY02 a
total of 123 cases were reviewed by these local committees and the central IMRB. Of these, 58 cases were
referred by local committees to the IMRB, and an additional 14 (11%) cases of the 65 closed at the local level
were reviewed centrally as a quality assurance audit.
Of the 123 cases that were reviewed, 41 represented deaths that occurred during FY02. Information
regarding these deaths is summarized separately below.
IMPORTANT FINDINGS From Mortality Reviews:
Community Hospice Support is routinely provided for persons served by DMR in all
types of residential settings, including regional centers and STS, CLAs, CTHs, and for individuals receiving
supported living services when death is anticipated, usually due to a terminal illness.
ALL CASES REVIEWED: Hospice support was provided in 24 of the 123 cases reviewed (20%)
FY02 DEATHS ONLY: Hospice support was provided for 14 of the 41 individuals who died (34%)
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Health
&
Mortality Review ANNUAL REPORT
September 2002
Autopsies are performed by the Office of the Chief Medical Examiner for those cases in which the
OCME accepts jurisdiction or by private hospitals when DMR requests and the family consents to the
autopsy.
ALL CASES REVIEWED: Of the 123 individuals reviewed, autopsies had been requested for 48
(or 39% of the sample), and consent was obtained and autopsies performed for 26 (21% of the sample).
The OCME accepted jurisdiction and performed autopsies for 15 of these cases, and private autopsies
were conducted for 11.
FY02 DEATHS ONLY: Of the 41 deaths that occurred during FY02, autopsies were requested for 22
(54%). A total of 8 autopsies were performed (20%), 5 of which were conducted by the OCME.
Special Note: A recent report by the Columbus Organization found that the average rate of autopsy for
persons served by those state MR/DD agencies they surveyed was 11.7%. This compares to the 20-21%
rate noted above for cases reviewed by mortality review committees in Connecticut during FY02.
Predictability.
ALL CASES REVIEWED: In 64% of the cases reviewed (n=79), the death was anticipated and related
to the diagnosis. In another 24% of the cases (n=29) the death was not anticipated, but was directly
related to the existing diagnosis. In 12 % (n=15) the death was not anticipated and not related to the
diagnosis, as follows:
1 – heart anomaly
2 – asphyxia (drowning)
3 – cardiovascular disease
1 – subdural hematoma
1 – adverse drug reaction
1 – stroke
2 – pulmonary embolism (1 following surgery) 1 – pneumonia
2 – inhalation of food
1 – cause undetermined by OCME
FY02 DEATHS ONLY: Of the 41 deaths reviewed that occurred in FY02, 56% (n=23) were anticipated
and related to the known diagnosis, 32% (n=13) were not anticipated but were related to the existing
diagnosis, and 12% (n=5) were not anticipated and not related to the diagnosis, as follows (also
included above):
1 – cardiovascular disease
1 – stroke
1 – adverse drug reaction
1 – pulmonary embolism following orthopedic surgery
1 – cause undetermined by OCME
DNR.
Do Not Resuscitate (DNR) orders are sometimes utilized when individuals reach the terminal
phase of an illness. DMR has an established policy that includes specific criteria that must be met along
with a review process for all DNR orders issued for persons served by the department.
ALL CASES REVIEWED: Of the 123 cases reviewed, 71 people (or 58%) had DNR orders, indicating
that their condition was terminal. Of these, 67 were formally reviewed by DMR. For the remaining four
individuals, DMR was not notified as required by policy, but in all cases the DNR was appropriate and
would have met established criteria. Of these four, two occurred at a LTC facility, one at an acute care
hospital , and the fourth at a Hospice facility. All facilities received additional training regarding required
notification to DMR.
FY02 DEATHS ONLY: Of the 41 deaths that occurred in FY02, 15 had DNR orders (37%). All met
DMR policy requirements (met criteria, and both notification and review took place as required).
Risk.
Mobility impairments and need for special assistance eating are two factors that place individuals
at significantly higher risk of death. The mortality review process therefore looks carefully at the presence
of these two personal characteristics.
ALL CASES REVIEWED: Of the 123 individuals reviewed, 54 – or 44% were non-ambulatory. 62, or
50%, were not able to eat independently.
FY02 DEATHS ONLY: Of the 41 FY02 deaths reviewed, 18 (44%) had mobility impairments (nonambulatory) and 10 (24%) were not able to eat independently.
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Health
&
Mortality Review ANNUAL REPORT
September 2002
SUMMARY
Context.
ALL DEATHS REVIEWED: The vast majority – over 90% - of
all deaths reviewed were classified as due to Natural Causes.
Six (6)deaths were associated with an Accident. Of these, 2
were related to choking, 2 were related to drowning, and 2
appear to be related to a fall. One case was a Homicide and
in one case the context was not able to be determined by the
OCME.
FY02 DEATHS ONLY: 39 deaths – or 95% - of the 41
reviewed were related to natural causes. 1 death was
accidental and 1 was not able to be determined by the OCME.
The accidental death was related to a fall.
Neglect.
ALL DEATHS REVIEWED: There were a total of 18
allegations of abuse or neglect that occurred within 6
months of death for the cases reviewed. Of these, 2 were
not substantiated, 8 are still under investigation, and 8
were substantiated. In 4 of these latter cases, the neglect
appeared to be related to the cause of death, as follows:
2 - asphyxia resulting from drowning (private CLAs)
1- anoxia, associated with nursing failure to properly
assess (LTC)
1 - anoxia resulting from choking on food (private day
program)
Enforcement action was taken in 3 of the 4 cases and
included: 2 dismissals from service by the provider with
arrest by police and 1 citation with monetary fine by DPH
(1). In the fourth case there were inconsistent findings
regarding the culpability of the involved staff member. In
all four instances family members were notified of findings.
FY02 DEATHS ONLY: Of the 41 deaths that occurred in
FY02 there were a total of 8 that included an allegation of
abuse or neglect within 6-months of death. Of these, 1
was not substantiated, 5 are still under investigation, and in
two cases the neglect was substantiated. In both of these
latter two cases it was not possible to determine if the
neglect was the direct cause of the deaths. Both cases
involved nursing personnel where enforcement action
included appropriate reporting to the Department of Public
Health and Nursing Board.
-7-
Deaths that Occurred
and Were Reviewed
between 7/1/01 & 6/30/02
• 34% of the people had
Hospice support.
• 20% had an Autopsy.
• 56% of the deaths were
Anticipated and related
to the existing diagnosis. In
12% the death was not
anticipated and not related to
the existing diagnosis.
• 37% had a DNR order. All
met DMR criteria.
• 44% of the people could
Not Walk (i.e., were
non-ambulatory).
• 24% could Not Eat
without assistance.
• 95% of all the deaths
reviewed were due to
Natural causes.
• 1 death was classified as
Accidental.
• 2 cases involved Neglect
that was substantiated. In
both cases it was not
possible to determine if the
neglect was related to the
cause of death.
Health
&
Mortality Review ANNUAL REPORT
September 2002
Location at Time of Death
in this graph
As can be seen
over 60% of the individuals reviewed by the mortality review
committee in FY02 passed away outside of a DMR - operated or
funded residential setting. Most died in the hospital or long term
care facility. The table below shows both the number of individuals
who died by location as well as the relative percentage by location.
LOCATION
No.
Percent
Hospital
Hospice Facility
SNF
Conv Home
DMR Campus
STS HCU
CLA
CTH
Sup Lvng
Family Home
Other Community
Hosp ER
Total
51
2
15
1
8
5
21
1
5
1
1
12
123
41%
2%
12%
1%
7%
4%
17%
1%
4%
1%
1%
10%
100%
Other
64%
DMR
Setting
36%
Where People Died
FY 2002 Mortality Reviews
LEADING CAUSES OF
DEATH
A review of data from Connecticut and two other New
England states suggests that the leading causes of death for
people with mental retardation are somewhat different than for the general population. Heart disease is the
no. 1 cause of death – for all groups. However, unlike the general population, deaths due to respiratory
conditions are the second leading cause of death for individuals served by DMR. This is expected due
to the high percentage of deaths for persons with severe and profound mental retardation and the high
incidence of co-morbid conditions in that group, including conditions such as cerebral palsy, dysphagia,
gastro-esophageal disorders, all of which carry a heightened risk of aspiration pneumonia. It should be noted
that increasing age is an important factor that increases risk for aspiration pneumonia as documented in the
National Vital Statistics Report published by the CDC.1 This report states that a major cause of death
“concentrated among the elderly, is a pneumonia resulting from aspirating materials into the lungs.”
Diseases of the nervous system are the third leading cause of death for DMR consumers.
These include Alzheimer’s Disease – which has a very high incidence in people with Down Syndrome - and
Seizure Disorders, again a condition that has a much higher incidence in people with mental retardation.
Interestingly, deaths due to accidents are much lower for people with mental retardation than for
the general U.S. or Connecticut population. Deaths due to injuries or accidents are the 5th leading cause of
death in the general population , but are only the 8th highest cause of death for people reviewed by DMR’s
mortality review committees.
Leading Causes of Death
RANK
1
2
3
4
Connecticut
DMR
Connecticut
U.S.
Heart Disease
Heart Disease
Heart Disease
Respiratory
Disorders
Cancer
Cancer
Nervous System
Disorders
Respiratory
Disorders
Cerebrovascular
Diseases (incl Stroke)
Cancer
Accidents
Chronic Respiratory
Diseases
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Health
&
Mortality Review ANNUAL REPORT
September 2002
BENCHMARKS
While there is a dearth of objective information regarding mortality in persons with mental retardation being
served by state agencies from across the country, this section will provide comparative analysis when
appropriate benchmarks do become available.
Massachusetts DMR
The Massachusetts Department of Mental Retardation has recently enhanced and expanded its mortality reporting
requirements and has issued an annual report. This 2000 Mortality Report was prepared by the University of
Massachusetts Medical School/Shriver, Center for Developmental Disabilities Evaluation and Research 2. The
report covers the calendar year January 1 through December 31, 2000. Mortality statistics pertaining to persons
18-years and older served by DMR were analyzed according to a number of variables not dissimilar from many of
those contained in the first part of this report. Consequently, it is possible to use some of the Massachusetts data
for comparative purposes. It should be noted that the Massachusetts DMR system, although larger, is very similar
to Connecticut’s (e.g., population served, type of services and supports, organization). However, there are
differences in reporting requirements, age limits, and and categorization of service types. It is therefore important
that readers exercise caution when reviewing comparative information.
Overall Death Rate
COMPARISON OF AVERAGE DEATH RATES
A comparison of the overall death rate for persons
served by the Connecticut DMR with similar rates for the
general population in the U.S. and the DMR population
in Massachusetts are presented in this graph.
The overall Connecticut DMR death rate of 12.1 deaths
per thousand people is higher than the rate of 8.7 deaths
per thousand people in the general population, as would
be expected due to the many health and functional
complications associated with disability and mental
retardation. A comparison of the Connecticut DMR with
Massachusetts DMR shows a slightly higher death rate
in Connecticut for the adult population (people older than
18-yrs of age.) of 0.8 deaths per thousand people
served. This difference does not appear to be significant
and may be a reflection of the aforementioned
differences in the populations being served.
14.3
13.5
Connecticut
DMR - 18+
Massachusetts
DMR - 18+
General U.S. Population v People Served
by the MA & CT Mental Retardation Agencies
12.1
Connecticut
DMR - all
ages
U.S.
Population all ages
8.7
Crude Death Rate = No. Deaths X 1000/Population + No. Deaths
COMPARISON OF AVERAGE DEATH RATES
Connecticut DMR v Massachusetts DMR
By Where People Live
Residential Analysis
A comparison of average death rates
by where people live is presented
here.
The general pattern for
rates by type of setting is quite
similar across the two states, with the
exception of the “Other” category.
This is most likely a reflection of
differences in the populations
included in this cluster.
Comm
Resid
DMR
Campus
MA CDR
10.9
CT CRD
11.7
LTC
Home
Other
Total
37.3
93.4
29.7
104.0
4.5
7.8
13.5
4.4
16.3
12.1
-9-
Death rates in DMR would
therefore appear to be very
consistent with an
available benchmark as
reported in Massachusetts.
Health
&
Mortality Review ANNUAL REPORT
September 2002
RESEARCH & REPORTS OF
INTEREST
This section will report on selected research, reviews, and other information from Connecticut and around the
country that is related to mortality and health care in mental retardation and developmental disabilities systems.
Connecticut DMR Independent Study on Mortality
The Connecticut DMR retained the services of two outside consultants to conduct a comprehensive analysis of
mortality and basic demographic trends from 1997 to 2002 within the population of individuals served by DMR. The
study was designed to provide:
• Descriptive Overview of People Served by DMR
• Predictive Mortality Analysis
• Cross-sectional Analysis of People Served
• Longitudinal Analysis (Changes over Time)
Using sophisticated statistical procedures the study authors found that:
1. Changes in mortality rates over time are not significant
2. As expected, mortality is highly related to client age
3. Women served by DMR are older than men, and hence have a higher mortality rate
4. Increased levels of disability are inter-related and correlated with higher risk of mortality
5. The strongest predictors of mortality are age, mobility status, and amount of supervision provided
6. The “aging in place” phenomenon is leading to increased risk of mortality since individuals served by
DMR are becoming older and more disabled over time.
Copies of the report3 and a graphical summary can be obtained by contacting:
DMR Strategic Leadership Center
860-418-6163 or steven.staugaitis@po.state.ct.us
California Study of National Mortality Review Systems
The Columbus Organization conducted a survey of national mortality review practices in MR/DD systems for the
California DDS4. Survey findings indicate that:
• The majority of states require reporting of deaths for persons served by state DD agencies at both the
local and statewide level.
• In most instances the determination to perform an autopsy is based upon the unique circumstances of
each case, with an average of 11.7% of all cases having an autopsy.
• About half of the states use a set of standardized criteria to review deaths.
• The majority of states have established databases to track mortality information.
The Columbus report was published in May of 2002. Copies can be obtained by contacting Columbus at
800-229-5116.
References
1 Minino, M.P.H., Arialdi, M. and Smith, Ed., S.B., CDC National Vital Statistics Reports National Vital Statistics System,
Deaths: Preliminary Data for 2000, Volume 49, Number 12, October 9, 2001.
2 2000 Mortality Report: A Report on DMR Deaths January 1 – December 31, 2000. Prepared for the Massachusetts
Department of Mental Retardation by the Center for Developmental Disabilities Evaluation and Research at the
University of Massachusetts Medical School/Shriver. March 4, 2002.
3 Gruman, C. & Fenster, J. A Report to the Department of Mental Retardation: 1996 through 2002 Data Overview
Completed: April 2002.
4 The Columbus Organization. Mortality Review Survey: Survey of the States. Submitted to the California Department of
Developmental Services. May, 2002.
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Health
&
Mortality Review ANNUAL REPORT
September 2002
ENHANCEMENTS:
Executive Order No. 25
A number of important enhancements to the risk management and mortality review systems in DMR are being
implemented in response to Governor Rowland’s Executive Order No. 25. All of these changes are designed
to improve communication with families, assure that a rigorous and objective evaluation and review of
circumstances surrounding untimely deaths takes place,and to make sure that the review process is
independent and free from the potential for conflict of interest.
Some of these enhancements include:
Stronger Role for Investigations Unit
The Connecticut DMR has a unique relationship with the State Police that includes the assignment of a senior
Officer to oversee and manage the Investigations Unit. Two trained clinical nurse investigators have joined
the unit’s staff and are conducting preliminary screening on all deaths that occur in DMR operated or funded
settings to immediately assess the need for a complete A/N investigation. In addition, a Special Investigative
Assistant has been appointed to oversee and monitor investigations conducted within the private sector.
New Independent Mortality Review Board
The Medical Quality Assurance Board has been transformed into a new Independent Mortality Review Board
that increases outside representation. The Chairperson was appointed by the Commissioner of DMR, in
consultation with the Director of the Office of Protection and Advocacy (OPA). The independent medical
professional (physician)and an independent representative from a private sector agency were jointly appointed
by the DMR Commissioner and OPA Director. In addition, OPA now has two members. The new IMRB began
meeting in March, 2002.
Increased Communication with OPA
The department is notifying the Executive Director of the Office of Protection and Advocacy of all deaths that
occur for persons served by DMR. The Director may request an expedited review by the IMRB, or, may direct
that an abuse/neglect investigation be initiated for any case.
Consistent Notification of Families
New policies and procedures have been implemented to assure that families and guardians are consistently
notified of all deaths and the results of investigations and mortality reviews. Families are provided with an
opportunity to meet with DMR personnel to review all findings.
Posting of Licensing Inspection Reports
The department is now requiring visible notice to consumers, families and guardians that the results of DMR
licensing inspections are available for review. In addition, DMR is posting summary reports of inspections on
the DMR website in order to make access to the information much easier and more widely available to the
public. Results of licensing inspections can be viewed at www.dmr.state.ct.us/license.htm.
The Next Health and Mortality Review UPDATE
Will be issued in March of 2003.
For more information or to contact DMR please visit us at
www.dmr.state.ct.us
Prepared by:
Steven Staugaitis, Director, Strategic Leadership Center
Marcia Noll, Director, Health and Clinical Services
-11 -
Health and
Mortality
This is the second of a series of semiannual reports on
trends and related information pertaining to the health and
quality of care received by individuals with mental
retardation served by the Connecticut State Department
of Mental Retardation. Reports are scheduled for March
and September of each year. The September Annual
Report includes a more comprehensive analysis of annual
data, with a special emphasis on mortality trends. The
Mid-year March report is intended to provide an update on
activities and any new initiatives related to mortality and
risk reduction.
MID-YEAR
REPORT
For the Period July 1, 2001 to December 31, 2002
Issued
MARCH 2003
Overview
of
DMR
The Connecticut Department of Mental Retardation (DMR) provides a broad range of
services and support to Connecticut citizens with mental retardation and, through the
Birth to Three System, to infants and toddlers with developmental delays and their
families.. As of December 31, 2002, DMR was providing supports to a total of
19,670 individuals, including 14,728 active “clients” of the department and about
5,000 participants in Birth to Three.
Approximately half of those individuals who receive support from DMR (not including
Birth to Three) live at home, most with their families. The remaining half receive
residential living services and supports. The full array of supports and services
available to persons with mental retardation are provided directly by DMR (public
services), through contracts with over 150 private provider agencies, or are managed
by the individual, often with the assistance of their family using funds provided by DMR.
The careful evaluation of the health and safety of individuals served by DMR is an
ongoing and important responsibility of the department. This report represents an effort
to share important trends and selected initiatives associated with reducing risk for
mortality in the people supported by DMR.
Figure 2
Mortality Trends
No. Deaths by Fiscal Year
For Persons Served by DMR
NO. DEATHS.
200
182
180
178
160
132*
140
No. Deaths
During the first half of
fiscal year 2003 (July 1st through December
31st of 2002) a total of 66 people died who
were served or supported by the Department
of Mental Retardation. Pro-rating this number
to a full fiscal year results in a projection of
132 total deaths for the year. As illustrated in
Figure 2, this suggests a potential for fewer
deaths this year than observed in the
previous two fiscal years.
120
100
80
66
60
40
20
0
FY01
FY02
FY03
*During the first 6 mo. of FY03 there were 66 deaths, pro-rated to 132 (full
year) to allow comparisons to prior years.
Health
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March 2003
Mortality Review MID-YEAR REPORT
Figure 3
DEATH RATE.
The average Death
Rate* is expressed as the no. of deaths per
1000 people served. It compares the number
of deaths to the number of persons served in
each type of setting. Figure 3 compares this
rate from FY01 through the first half of FY03.
As can be seen, the average rate may be
decreasing. However, before finalizing any
conclusions it will be necessary to review
data from the full fiscal year since there is a
possibility seasonal variations in mortality
may be influencing findings.
Mortality Rate
No. Deaths per 1000
12.65
12.06
9.04
FY01
FY02
FY03 data pro-rated for full year
Mid-Year
FY03
RESIDENTIAL SERVICE.
Table 1 below provides a summary of the no.of
deaths by where people lived during the first half of FY03. Also included in the table are
the crude death rate and the rate per 1000 people served. Figure 4 (next page)
displays some of this data in graphical form. In general, lower rates are observed for
persons living in the less intensely supervised settings, with the highest rates occurring
for Campus settings (Regional Centers and STS) and Long Term Care. These latter two
categories of residence provide support to persons with the most complex and significant
needs, and thus represent settings with an expected higher risk of mortality.
Table 1
Mid-Year FY2003 (July to December)
Death Rate (per 1000) by Where People Lived
Res Category
Home
SL
CTH
CLA
Campus
LTC
Other
Total
No. Deaths
8
8
1
16
10
22
1
66
Pro-rated to Full Population as of
Year (X2)
Dec 31
Total Pop
Crude Rate No./1000
16
7846
7862
0.002
2.04
16
1328
1344
0.012
11.90
2
463
465
0.004
4.30
32
3429
3461
0.009
9.25
20
880
900
0.022
22.22
44
421
465
0.095
94.62
2
106
108
0.019
18.52
132
14473
14605
0.009
9.04
* In this report we use the term “average death rate” to reflect what is more commonly referred to as the “crude” death rate in mortality
and epidemiological research. It is computed as follows: Total no. deaths/(population + no. deaths) X1000.
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Health
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March 2003
Mortality Review MID-YEAR REPORT
Figure 4
Mortality Rate by Where People Live
FY 2003 (Pro-rated)
94.62
No. Deaths per 1000
100
80
60
40
22.22
11.90
20
2.04
18.52
9.25
4.30
9.04
l
To
ta
th
er
O
LT
C
s
C
am
pu
C
LA
C
TH
H
om
e
SL
0
Figure 5 illustrates similar data across three time periods. Pro-rated for FY03, data
show a decrease in all settings except for Supported Living. Caution should be
exercised however, in reviewing the projected increase in deaths in SL, since there
are still only a relatively small number of deaths (i.e., from July to December there
were a total of 8 deaths, pro-rated to 16 for a full year). Nonetheless, the potential
presence of a trend toward increasing mortality in Supported Living will require
ongoing analysis and review.
Figure 5
Comparison of Mortality Rate Trends by Where
People Live
No. Deaths per 1000 People
120
FY01 - FY02 - FY03 (pro-rated)
100
80
60
40
20
0
Home
SL
CTH
CLA
Campus
LTC
FY01
4.24
7.17
8.65
16.58
29.82
100.21
FY02
4.42
4.44
8.70
15.20
29.67
104.03
Mid-Year FY03
2.04
11.90
4.30
9.25
22.22
94.62
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March 2003
Mortality Review MID-YEAR REPORT
DMR Mortality Reviews
DMR policy establishes formal mechanisms for the careful review of consumer deaths
by local Regional Mortality Review Committees and a central Independent Mortality
Review Board (IMRB). The Regional Committees reviewed a total of 74 cases during
the first half of FY03. Of these, 30 cases were referred to the central IMRB. In addition
to these 30 cases, the IMRB reviewed 7 of the remaining 44 cases that had been
closed at the regional level as part of its quality assurance process. Thus, the central
IMRB formally reviewed a total of 37 cases across two meetings during the first half of
the fiscal year.
Membership on the central IMRB includes six
(6) Representatives from outside of DMR and
three (3) DMR representatives. In addition,
staffing and Technical assistance is provided to
the board by a Regional Health Services Director,
Case Management Supervisor, the Medical Director
at Southbury Training School, the Special Protections
Coordinator, and an Administrative Assistant.
Current Status and
Activities
IMRB Membership
• Community Physician (1)
• OPA (2) [1 staff & 1 parent]
• Private Provider (1)
• Public Health (1)
• OCME (1)
• DMR (3)
• Dir Health/Clinical
Services
• Dir Quality Assurance
• Dir Investigations
Policies, procedures and quality enhancement practices initiated or enhanced during
FY’02 provide a foundation of quality oversight, monitoring, and improvement in the
areas of mortality review and health promotion. Implementation of procedures such as
the Sudden Death Protocol and regional checklists ensure timely and appropriate
responses including notification of all appropriate parties. Quality audits have shown
full compliance with policy. Regional mortality reviews may sometimes, however, be
delayed when required documents are not immediately available within policy time
frames (e.g., hospital reports, autopsy reports).
Nurse Investigator Reviews
Activities by the two nurse investigator positions within the Division of Investigations has
continued to improve the department’s health and mortality oversight. During the first
half of FY’03, the nurse investigators (NIs) completed an initial review of all deaths.
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March 2003
Mortality Review MID-YEAR REPORT
Full reviews were conducted for 30 cases, three (3) of which were referred for
abuse/neglect investigations. Two of those have been referred to DPH and one
investigation is being conducted by DMR. The Nurse Investigators screen all deaths and
only those cases that meet selected criteria are identified as not requiring a full review.
These criteria include factors such as the individual:
• lived in his/her own or family home with minimal oversight by the department
• lived in a nursing home (case deferred to review by the mortality review system
as appropriate)
• had a well documented terminal condition with no indication of quality of care
issues.
Coordination with Office of Protection & Advocacy
Cooperation and communication between DMR and the Office of Protection and
Advocacy (OPA) has been strengthened with the implementation of Memos of
Understanding between the two departments. In accordance with these agreements,
the DMR provides OPA with information on all deaths, the results of nurse investigator
reviews, all IMRB records as requested, and any additional information relating to
mortality review as may be needed. The DMR Director of Health and Clinical Services
represents the Commissioner on the OPA Fatality Review Board (FRB) that was
established by Executive Order #25. During the first half of the FY’03, the Commissioner
referred two cases for possible review by the FRB. One case involved a young man who
died while incarcerated in a Department of Corrections facility while awaiting trial. The
second case involved a man who died while in a nursing home for short-term admission,
during which many care concerns and care coordination issues were identified in the
DMR mortality review process. Both cases are currently under review by the FRB.
Individual Safety Screening
During the fall of FY’03, the department implemented a procedure to screen individuals to
determine the need for more formalized and comprehensive risk assessments. Three
individual characteristics had been identified to be associated with increased risk for
mortality through a comprehensive statistical study, mortality review committee findings,
and root cause analysis: (1) severe limitations in mobility, (2) severe seizure
disorders, and (3) complications of swallowing and maladaptive eating behaviors.
The department has issued a formal procedure mandating that case managers complete
or assure the completion of a simple safety screening for all individuals receiving
residential and/or adult day supports operated, licensed or funded by DMR. The
screening is to be completed on an annual basis or at any time one of the risk factors is
identified. Results from the screening are entered into the department’s mainframe
database for individual tracking and aggregate analysis. This process is designed to
assure that persons, agencies and support teams who plan for and support individuals
served by DMR take necessary steps to implement prevention strategies associated with
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Health
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March 2003
Mortality Review MID-YEAR REPORT
identified risks in these three areas. The screening is not considered a formal clinical
assessment, but rather is designed to trigger such assessments for those persons
identified as having a potential for high risk.
The Individual Safety Screening procedure represents a relatively new initiative within the
department. Consequently, formal analysis of its effectiveness has not yet been
determined. A review of data to date does however demonstrate excellent progress
toward assuring all appropriate individuals receive the screening. As of March, 2003, 88%
of all required safety screenings had been completed (n = 5,374). Results show that about
42% of the screenings identified the presence of potential risk factors that require a more
comprehensive assessment. Individuals living in campus settings (STS and Regional
Centers) and habilitative nurseries had the highest percentage of identified risk. Persons
living in Supported Living had the lowest percentage. These summary findings are
illustrated in Figures 6 and 7 below.
Figure 6
Figure 7
Percentage of Persons with Risks Identified Through
Screening by Type of Residential Support
Safety Screening Results
March 2003
100%
Percent with Identified Risks
100%
90%
80%
78%
70%
Cmpltd
Risks
42%
60%
60%
Average
50%
44%
40%
29%
30%
20%
Cmpltd
No
Risk
58%
10%
10%
3%
0%
Campus
DMR
CLA
Priv
CLA
DMR SL Priv SL
CTH
Hab Nur
Data represents distribution of the 88% of individuals noted
above who have had an initial safety screen completed.
DMR Database Changes: Functional Profile Screen
In October 2002, the department implemented a series of changes to the mainframe
database (CAMRIS) that revised data input requirements regarding individual functional
abilities in areas such as eating, ambulation, communication, activity of daily
living, vision and hearing. Changes in the database now enable case managers to
document individual support needs for behavior, nursing and supervision. The
database also includes documentation re: safety screening results and completion of
further assessments, if needed. This information is to be updated annually or more
frequently as necessary based on changes in individual functional abilities.
It is anticipated that full implementation of both the risk screening and function profile
data will assist the department in ensuring appropriate supports for individuals as well
as providing essential information for planning and implementing system-wide risk
prevention initiatives.
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Health
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March 2003
Mortality Review MID-YEAR REPORT
IMRB Future Initiatives
The department has asked the IMRB to review issues associated with and provide
recommendations on:
1. The development of criteria to help identify cases the Commissioner should
consider referring to the OPA Fatality Review Board.
2. Assisting DMR in developing criteria for broader implementation of the
department’s Root Cause Analysis procedure.
3. Revisions to improve the Annual and Mid-year Health and Mortality Review
Report, including both content and presentation of the often complex
information contained in these report.
The next Health and Mortality Review will
be a full ANNUAL REPORT and is
scheduled for publication at the end of
September, 2003.
For more information
please visit DMR at
www.dmr.state.ct.us
Prepared by:
Steven Staugaitis, Director, Strategic Leadership Center
Marcia Noll, Director, Health and Clinical Services
-7-
Health and
Mortality
This is the second of a series of annual reports on trends and
related information pertaining to the health and quality of care
received by individuals with mental retardation served by the
Connecticut State Department of Mental Retardation. Reports
are scheduled for publication in the fall of each year and focus
on an analysis of annual data, with a special emphasis on
mortality trends and any significant or new initiatives pertaining
to the management of consumer risk.
ANNUAL
REPORT
For the Period July 1, 2002 to June 30, 2003
OCTOBER 2003
Overview of DMR
Mental retardation is a developmental disability that is present in about 1% of the Connecticut
population. In order for a person to be eligible for DMR services they must have significant deficits in
intellectual functioning and in adaptive behavior, both before the age of 18-yrs. As of June 30, 2003,
14,667 individuals with mental retardation were being supported by the department. DMR is also the
lead agency for the Birth to Three System in Connecticut. This system serves infants and toddlers
with developmental delays. Altogether, DMR assists over 20,000 individuals and their families,
providing a broad array of services and supports.
Figure 1
THE PEOPLE
SERVED BY DMR
FY 03
Over 7,000 individuals
live at home, either
independently or
with their
Home/Ind
families.
Self Directed
Res Support
561
7232
Resid
Support
7435
DMR
Traditional
6095
Other
Residential
779
Birth-3,
5989
About 6,000 infants
and toddlers receive
early intervention support
through DMR’s Birth to Three
System.
as of June 30, 2003
Approximately 1/3 of the people
served by DMR receive a
funded residential support.
Over 560 are managing these
supports themselves, often with
the assistance of their families.
The majority of residential
supports (over 6,000 people),
however, are more traditional in
nature, and include services
provided in supported living,
community living arrangements
(group homes), community
training homes and campus
programs operated at regional
centers and Southbury Training
School. About 780 people are
supported by other state or local
government entities, including
residential service in LTC
facilities, DMHAS, and
residential schools.
Health
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October 2003
Mortality Review ANNUAL REPORT
SECTION I
Mortality Trends
An important component of the risk management systems present within DMR involves the analysis and review of
deaths to identify important patterns and trends that may help increase knowledge about risk factors and provide
information to guide system enhancements. Consequently, DMR continues to collect information pertaining to the
death of all individuals who are active clients of the department (n= 14,667). The following section provides a
general description of the results of this analysis for Fiscal Year 2003 (July 2002 through June 2003).
Figure 2
Mortality and Residence
During the 12 month time period between July 1, 2001
and June 30, 2002 a total of 160 out of the 14,667
individuals served by DMR passed away. As can be seen
in Figure 2 (to the right) approximately half died while
being served in a residential setting operated, funded or
licensed by DMR (blue section of the pie). The other half
were living at home (family home or independently), in a
long-term care facility (e.g., nursing home), or other nonDMR operated or funded setting . This general pattern is
consistent with that observed last fiscal year, although
there was a slight reduction in the relative percentage of
deaths that occurred in CLAs, Community Training
Homes and Long-Term Care facilities. The percentage of
deaths that occurred in Supported Living experienced a
slight increase.
The average Death Rate1 is expressed as the number of
deaths per 1000 people served. It compares the number
of deaths to the number of persons served in each type of
setting (no. deaths /population X1000), and continues to
show a predictable pattern: In general, the higher need
for specialized care, the higher the average rate of death.
Figure 3
Mortality Rate by Where People Live
No. Deaths per 1000 People
FY 2003
No. Deaths per 1000 People
120
100.8
100
80
60
40
30.2
22.6
20
4.1
7.6
12.3
4.3
0
Home
SL
CTH
CLA
STS
RC
LTC
Residential Setting
Type of Residential Support
At Time of Death
RC
5%
Other
2%
LTC
30%
STS
9%
Home
20%
CLA
27%
SL
6%
CTH
1%
LTC = Long Term Care,, RC = regional center, STS = Southbury Training
School, CLA = community living arrangement (group home), CTH = community
training home, SL = supported living, Home = live independently or with family.
Figure 3 (graph on the left) shows the
number of people who died for every
1000 people served in each type of
residential setting. In a very general
sense, the settings to the left tend to
provide less comprehensive care and
support than the settings to the right,
often a reflection of the level of
specialized care needed by the people
who live in each type of setting.
For example, persons living in Long Term
Care (LTC) (nursing homes) tend to be
older than other people served by DMR.
They, along with those in regional centers
and at Southbury Training School tend to
have more significant disabilities and
health care needs - all three of these
settings have 24-hr nursing staff
available. The death rate (100.80) for
persons served by DMR who live in LTC
is however, substantially lower than the
rate for all persons served in LTC (289.9),
per data obtained from the Connecticut
Office of Policy and Management.
In this report we use the term “average death rate” to reflect what is more commonly referred to as the “crude” death rate in mortality and
epidemiological research. It is computed by dividing the no. of deaths by the EOY population + no. deaths and multiplying by 1000 to generate a rate
(no. per thousand).
1
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Mortality Review ANNUAL REPORT
Figure 5
Mortality Rate
Figure 4
No. Deaths
Figures 4 and 5 (two graphs to
the right) compare the number
of deaths within the population
served by DMR and the
average death rate for the
most recent three (3) fiscal
years. As can be seen, FY03
experienced a decrease in both
measures, continuing the trend
observed last year.
No. Deaths per 1000
Comparison: FY01- FY02 - FY03
12.65
182
178
10.79
FY02
FY03
Mortality Rate by Where People Live
3 Year Trend
120
100
80
60
40
20
Home
SL
CTH
CLA
Campus
LTC
FY01
4.244
7.168
8.651
16.579
29.819
100.209
FY02
4.416
4.444
8.696
15.199
29.670
104.034
FY03
4.096
7.639
4.320
12.293
24.887
100.840
FY01
FY02
FY01
FY02
FY03
Figure 6 (graph to the left) compares the
death rate (the number deaths per 1000
persons served) for the past three (3) fiscal
years by type of residential setting.
Figure 6
No. Deaths per 1000 People
12.06
160
FY01
0
Comparison: FY01- FY02 - FY03
FY03
Small differences can be seen, with the rate
decreasing in FY03 for most settings,
particularly in community training homes,
campus settings (regional centers and
STS), and in community living
arrangements. On the other hand, the
opposite trend was observed for persons
receiving supported living services, where
the death rate increased to a level slightly
higher than that in FY01, reversing the
decline noted in FY02.
Caution must be exercised in reviewing this
data since the actual number of deaths in
each of these settings was relatively small.
The differences across these time periods
are therefore most likely not statistically
significant.
Gender and Mortality
As can be seen in Table 1 and Figure 7 below, during Fiscal Year 2003 men experienced a higher death rate
than women, representing 60% of all deaths. This is opposite the gender relationship observed in FY02, and
is surprising given the fact that almost 2X as many women as men served by DMR are over the age of 85-yrs,
and therefore at substantially higher risk of mortality.
Figure 7
GENDER
Table 1
No. Deaths per 1000
FY03 Mortality Rate by Gender
GENDER
Men
Women
Total
No.
Deaths
Rate
Percent of (No. Deaths
Deaths
per 1000)
96
60%
11.538
64
40%
9.836
160
100%
10.791
FY 2003
11.538
9.836
Men
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Women
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October 2003
Mortality Review ANNUAL REPORT
Figure 8
Age and Mortality
No. Deaths per 1000 People Served
FY 2003
200
180
166.7
160
No. Deaths per 1000
The relationship between age and
mortality shows the expected trend, with
the mortality rate increasing as people
served by DMR get older. As seen in
Figure 8 (to the right) at around 70-yrs
of age there is a dramatic rise in
mortality, again, in line with expectations
and the trends observed in the general
population.
Mortality Rate by Age Range
140
After age 70-yrs, the death rate
increases dramatically – in line
with overall population trends.
120
100
81.9
80
41.7
60
34.8
40
6.4
20
1.2
6.0
5.1
7.4
18.6
0
0-9
Figure 9
10-19 20-29 30-39 40-49 50-59 60-69 70-79 80-89
90+
AGE RANGE
Mortality Rate by Age Range
Comparison of FY02 and FY03
200
180
Figure 9 (to the left) compares the age trends
for FY03 (line) with those observed in FY02
(bar). As can be seen, the death rate decreased
for all age groups except young adults, where a
slight increase is seen.
No. Deaths per 1000
160
140
120
100
80
60
Only age range w ith an
40
increase in mortality rate
It should be noted that individuals living at home
(especially those living with their family) are
generally younger than the other persons
served by DMR. The oldest group served by
DMR are living in LTC facilities. As expected,
they experience the highest death rate.
20
0
0-9
10-19 20-29 30-39 40-49 50-59 60-69 70-79 80-89
90+
FY02 6.589 1.652 2.834 7.639 10.566 19.841 39.807 47.511 92.486 200.00
FY03 6.395 1.211 5.100 5.981 7.394 18.630 34.843 41.667 81.871 166.66
80
+11
70
Age in Years
As can be seen in Figure 10 (to the
right) there is a relatively strong
relationship between the average age of
the population living in each type of
residential setting and their average age
at death. The largest difference between
the two variables exists in community
training homes (+14) and both CLAs and
STS (+11) where the average age of
death is more than 10-yrs higher than the
average age of the population living in
those settings. The difference between
overall average age and the average age
at death is the smallest for persons in
supported living (+3), consistent with
findings last fiscal year.
Figure 10
Comparison of Ave Age of Population
and Average Age at Death by Residence
FY03
+14
60
+11
+3
+8
50
+6
40
+6
30
20
Home
RC
CTH
SL
CLA
STS
LTC
Ave Age
23
39
43
45
45
57
65
Ave Age at Death
29
47
57
48
56
68
71
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Level of Disability and Mortality
As can be seen in Figure 11 (to the
right), the relationship between level of
mental retardation and mortality shows
the same trend as observed in FY02.
Persons with the most significant levels
of mental retardation (severe and
profound) have a much higher rate of
mortality. This trend is in line with
expectations.
Figure 11
Mortality Rate by Level of Disability
for Persons Served by DMR
FY 2003
30
25.21
No. Deaths per 1000
In addition to age and gender, level of
mental retardation is another factor that
affects life expectancy. Persons with
more severe levels of disability typically
have many co-morbid conditions (other
medical diagnoses such as epilepsy,
cerebral palsy, etc.), including mobility
and eating impairments – two important
risk factors. These factors tend to have a
significant effect on morbidity (illness)
and mortality (risk of death).
25
20
15
Overall average rate = 10.80
10
8.20
8.69
No MR or
ND
Mild
12.66
7.69
5
0
Moderate
Severe
Profound
Level of Mental Retardation
No MR (not mentally retarded) or ND (not determined) category Includes children receiving DMR services
through the Birth-to-Three system who are too young to test for mental retardation and adults for whom the DMR
has limited responsibility under the Federal Nursing Home Reform Act (OBRA 87) who do not have mental
retardation. It may include some DMR clients who were DMR clients prior to Connecticut’s current statutory
definition of mental retardation.
SECTION II
DMR Mortality Review
IMPORTANT NOTE: During FY 2003 (July 1, 2002 to June 30, 2003) 135 cases were formally
reviewed by DMR Mortality Review Committees. The information presented in the next section summarizes
ONLY those deaths that were reviewed and will therefore be different from the numbers discussed in the
preceding section.
DMR policy establishes formal mechanisms for the careful review of consumer deaths by local regional
Mortality Review Committees and a central Independent Mortality Review Board – the IMRB. This latter entity,
includes representation from a number of outside agencies as well as a consultant physician. During FY03 a
total of 135 cases were reviewed by the central IMRB and/or these local committees. A total of 53 cases were
referred by local committees to the IMRB, and an additional 13 cases of the 82 closed at the local level were
reviewed centrally by the IMRB as a quality assurance audit.
IMPORTANT FINDINGS From Mortality Reviews:
Community Hospice Support is routinely provided for persons served by DMR in all
types of residential settings, including regional centers (RC), Southbury Training School (STS), community
living arrangements (CLA) , community training homes (CTH), and for individuals receiving supported living
services when death is anticipated, usually due to a terminal illness.
During this review period, hospice support was provided in 48 of the 135 cases reviewed (36%), an
increase over the 20% rate noted last year.
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Autopsies are performed by the Office of the Chief Medical Examiner for those cases in which the
OCME accepts jurisdiction or by private hospitals when DMR requests and the family consents to the
autopsy.
Of the 135 individuals reviewed, autopsies had been requested for 39 (or 29% of the sample). Consent
was obtained and autopsies performed for 28, or 21% of the 135 cases reviewed.
The OCME accepted jurisdiction and performed autopsies for 12 of these cases (9% of the 135), and
private autopsies were conducted for 16 individuals (12% of the cases reviewed).
The autopsy rate for Connecticut DMR – 21% - significantly exceeds the average rate of 11.7% reported
last year by the Columbus Organization following a survey of selected MR/DD state agencies across the
country. It is also consistent with the DMR rate observed in FY02.
Predictability.
In 71% of the cases reviewed (n=96), the death was anticipated and related to previously diagnosed
conditions. In another 23% of the cases (n=31) the individual’s death was not anticipated, but was directly
related to the existing diagnosis. In 6 % (n=8) the death was not anticipated and not related to previously
known or existing diseases or conditions. Causes for these latter eight (8) cases were as follows:
1 – Heart Attack (miocardial infarction – MI)
1 – Coronary Artery Disease (CAD)
1 – Pulmonary Embolism
1 – Respiratory Failure (complication of colonoscopy)
1 – Septicemia
1 – Blunt Trauma (hit by car)
2 – Cause Undetermined by Autopsy
DNR.
Do Not Resuscitate (DNR) orders are sometimes utilized when individuals are terminally ill
(e.g., end stage cancer) or are in the final stages of an irreversible or incurable condition such as
Alzheimer’s Disease. DMR has an established policy that includes specific criteria that must be met along
with a special review process for all DNR orders issued for persons who are placed and treated under the
direction of the Commissioner.
Of the 135 cases reviewed in FY03, 85 people (or 63%) had DNR orders. Of these, 94% (80) were formally
reviewed by DMR and met the established criteria. In the remaining five cases (6%), the individuals lived in
a Long-term Care facility and DMR was not notified prior to the implementation of the orders. All facilities
that did not comply with DMR policy received additional training regarding requirements for notification and
review by DMR.
Risk.
Mobility impairments and need for special assistance when eating are two factors that place
individuals at significantly higher risk of morbidity and mortality. The mortality review process therefore
looks carefully at the presence of these two functional abilities.
Of the 135 individuals reviewed, 65 – or 48% were non-ambulatory. Sixty-three (63), or 47%, were not
able to eat independently. Further analysis indicates that 70 individuals (52%) had one of these risk
factors and 60 (44%) had both present. Thus, the majority of individuals who died and were reviewed by
mortality review committees had one or more of the identified risk factors present at the time of death.
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Context: Manner of Death.
According to Connecticut State law, the Office of the Chief
Medical Examiner (OCME) determines the cause of death and
the manner of death: natural, accident, suicide, homicide or
undetermined.
For those deaths in which the OCME does not assume
jurisdiction, pronouncement is made by a private physician
using a different form. In all such cases the manner of death
must be classified as natural, as any other manner of death
must be determined by the OCME according to state statute.
Of the 135 cases reviewed during FY03, 133, or 98% were
classified as due to Natural Causes. One individual died as
the result of a car accident (hit by car while crossing street). In
two cases the OCME was unable to determine both the cause
and manner of death.
Table 2
FY03 Manner of Death
Manner of Death
Natural
Accident
Homocide
Suicide
Undertermined
Total
No.
Percent
132
1
0
0
2
135
97.8%
0.7%
0%
0%
1.5%
100.0%
SUMMARY OF
FINDINGS
for deaths that were
reviewed in FY03
• 36% of the people had
Hospice support.
• 21% had an Autopsy.
• 6% of the deaths were
Not Anticipated and
not related to the existing
diagnosis.
• 63% had a DNR order. All
but 5 met DMR criteria.
• 48% of the people could
Not Walk (i.e., were
non-ambulatory).
Neglect.
There were a total of 14 allegations of abuse or neglect that
occurred within 6 months of death for the cases reviewed. Of
these, 7 were not substantiated and 3 are still under
investigation. In 4 cases neglect was substantiated.
Circumstances regarding these latter 4 cases were as follows:
2 cases involved the care provided in LTC facilities.
1 case involved a delay by a day program in sending a
person home when ill.
1 case involved inaccurate information provided to an
acute care facility.
In the latter two cases the neglect was not associated with the
individuals’ death. Corrective actions were taken. In the
former two cases (LTC) the Department of Public Health (DPH)
was notified and conducted reviews that resulted in citations
and fines for the two facilities.
The 3 cases still under investigation – following referral to DPH
- involve concerns about care provided in two (2) LTC facilities
and one (1) acute care facility.
It is important to note that in no instance
was the substantiated neglect the direct
cause of death.
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• 47% could Not Eat
without assistance.
• 98% of all the deaths
reviewed were due to
Natural causes.
• 1 death was classified as
Accidental.
• 4 cases involved
substantiated Neglect
within 6-mo. of the death.
In NO case, however, was
the cause of death directly
related to the neglect.
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Location at Time of Death
As can be seen Figure 12 (pie chart below), almost 70% of all deaths reviewed by mortality review
committees during FY03 occurred outside of a DMR-operated, licensed or funded residential setting, an
increase in the proportion of persons dying outside of a DMR-setting compared to FY02. Table 3 below
shows both the number of individuals who died and the percentage by location. As can be seen, more than
half of all the deaths that were reviewed took place in a hospital, emergency room or nursing home.
Table 3
LOCATION AT TIME OF DEATH
LOCATION
No.
Percent
Hospital
Hospital ER
Hospice Facility
Nursing Home
Family Home
Other Community
Subtotal Non-DMR
DMR Campus
STS HCU
CLA
CTH
Sup Lvng
Subtotal DMR
Total
46
12
2
30
1
1
92
15
1
21
1
5
43
135
Figure 12
Where People Died
FY 2003 Mortality Reviews
34%
9%
1%
22%
1%
1%
68%
11%
1%
16%
1%
4%
32%
100%
DMR
Setting
32%
Other
68%
SECTION III
Leading Causes of Death
IMPORTANT NOTE: Seasonal variations in mortality require consistency when conducting
comparative analyses and therefore the following data regarding the Leading Causes of Death for persons
served by DMR will be provided based on a Calendar Year (2002) basis. This will allow more direct
comparison to Connecticut and national mortality benchmarks developed for the general population.
A review of Connecticut DMR data for Calendar Year 2002 shows that for the first time, Cancer became
equal to Heart Disease (in both number and relative percent) as the leading cause of death. More
specifically, during 2002:
22%
of deaths were due to
Heart Disease
22%
of deaths were due to
Cancer
19%
of deaths were due to
Pneumonia/Lung Diseases
including
3% due to aspiration pneumonia
14%
of deaths were due to
Nervous System Diseases
including
Alzheimer’s (7%), Anoxia (3%),Epilepsy (2%), and Parkinson’s (1%)
5%
of deaths were due to
Renal Failure
4%
of deaths were due to
Digestive System Diseases
For the remaining 14% of deaths there were a variety of causes including septicemia, diabetes insipidus,
and congenital anomalies (heart), none of which individually exceeded more than 1-2% of the deaths
reviewed during 2002.
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Table 4 (below) compares the leading causes of death for individuals served by DMR during
Calendar Year 2002 with two benchmarks for the general population. As can be seen, heart
disease is the no. 1 cause of death for all three reference groups. However, the ranking for cancer
increased from the 4th leading cause to a tie for 1st in the DMR population, whereas it represents
the second leading cause of death within the general population.
As with other data presented in this report, caution must be exercised in reviewing this information
due to the relatively small number of deaths. Differences that occur from year to year are therefore
not likely to be statistically significant.
Table 4
Leading Causes of Death
RANK
Connecticut
DMR
Calendar Year 2002
1
2
3
4
Connecticut
U.S.
Calendar Year 1998
(most recent available)
Calendar Year 2001
Heart Disease
Cancer
Heart Disease
Heart Disease
Respiratory
Disorders
Cancer
Cancer
Nervous System
Disorders
Respiratory
Disorders
Cerebrovascular
Diseases (incl Stroke)
Renal Failure
Accidents
Chronic Respiratory
Diseases
Table 4 also demonstrates the increased role played by respiratory disorders and nervous system
disorders as leading causes of death in persons with mental retardation when compared to the
general population, most likely influenced by the risk factors discussed earlier in this report (i.e.,
high presence of mobility and eating impairments and severe seizure disorders) as well as the
increased risk for Alzheimer’s Disease in persons with Down Syndrome.
Interestingly, the role of accidents would appear to play less of a role as a cause of death in
persons served by DMR than for the general population living in Connecticut.
SECTION IV
Enhancements:
Individual Safety Screening
During the fall of FY’03, the department implemented a procedure to screen individuals to determine
the need for more formalized and comprehensive risk assessments. Three individual characteristics
had been identified to be associated with increased risk for mortality through a comprehensive
statistical study, mortality review committee findings, and root cause analysis: (1) severe limitations
in mobility, (2) severe seizure disorders, and (3) complications of swallowing and maladaptive
eating behaviors.
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The department issued a formal procedure mandating that case managers complete or assure the
completion of a simple safety screening for all individuals in licensed or certified settings. The screening is
to be completed on an annual basis or at any time one of the risk factors is identified. Results from the
screening are entered into the department’s mainframe database for individual tracking and aggregate
analysis. This process is designed to assure that persons, agencies and support teams who plan for and
support individuals served by DMR take necessary steps to implement prevention strategies associated with
identified risks in these three areas. The screening is not considered a formal clinical assessment, but
rather is designed to trigger such assessments for those persons identified as having a potential for high
risk.
The Individual Safety Screening procedure represents a relatively new initiative within the department.
Consequently, formal analysis of its effectiveness has not yet been determined. However, a review of data
to date does however demonstrate excellent progress toward assuring all appropriate individuals receive the
screening. As of June 30, 2003, 93% of all required safety screenings had been correctly completed (n =
5,661).
Results of the process to date suggest that almost 2,400 individuals, or over 40% of those who have
been screened, have at least one of the three identified risk factors, a rather sizeable portion of the
residential population served by DMR
As can be seen in Figure 13 (below), almost 30% present with a risk associated with eating and about
27% have risks associated with impaired mobility. In addition, a little over 10% have risks related to a
serious seizure disorder.
Figures 14-17 (next page) illustrate the proportion2 of individuals with identified risks by type of
residential setting they live in. As can be seen, persons in habilitative nurseries and regional centers
appear to have the greatest presence of individual risk factors, followed closely by Southbury Training
School. The lowest presence is, as would be expected, within supported living.
Figure 13
Safety Screenings
Percent of Screenings by Type of Risk
FY 2003
50%
42%
40%
30%
29%
27%
20%
13%
10%
0%
At Least One Mobility Risk Seizure Risk Eating Risk
Risk
2 Percentages
were developed by dividing the number of persons with a risk factor by the total number of persons correctly screened for each of
the residential types.
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FY03 Safety Screenings
Percent with One or More Risk Factors
FY03 Safety Screenings
Percent with Mobility Risk
by Type of Residential Support
by Type of Residential Support
100%
100%
100%
100%
85%
90%
80%
90%
74%
80%
70%
70%
60%
60%
47%
50%
40%
50%
43%
40%
30%
30%
31%
30%
20%
15%
20%
8%
10%
5%
10%
0%
0%
STS
RC
Hab CLA
Nurs
CTH
SL
STS
RC
Hab
Nurs
CLA
CTH
FY03 Safety Screenings
Percent with Seizure Risk
FY03 Safety Screenings
Percent with Eating Risk
by Type of Residential Support
by Type of Residential Support
100%
100%
90%
90%
80%
80%
70%
70%
60%
60%
50%
78%
SL
76%
62%
50%
38%
40%
30%
61%
40%
25%
30%
30%
13%
20%
7%
10%
0%
16%
20%
3%
10%
0%
2%
0%
STS
RC
Hab
Nurs
CLA
CTH
SL
STS
RC
Hab
Nurs
CLA
CTH
SL
The relatively high proportion of individuals residing at STS and within regional centers, habilitative nurseries
and community living arrangements who possess one or more of these identified risk factors would appear
to support the need for continued screening and safety assessment as part of the annual individual planning
process for this population.
END OF REPORT
Report prepared by:
Steven Staugaitis, Ph.D. and Marcia Noll, M.S.N., with the assistance of Tim Deschenes-Desmond and Ivette DeJesus
October 3, 2004
The Next Annual Health and Mortality Report will be issued in
October of 2004.
For more information please visit the DMR website at www.dmr.state.ct.us
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