Sample Mortality Reports Issued by the State of Connecticut Department of Mental Retardation September 2002 March 2003 October 2003

Sample Mortality ReportsIssued by the

State of Connecticut

Department of Mental Retardation

September 2002March 2003

October 2003

Health and

Mortality

ANNUALREPORTIssued

NOVEMBER 2002

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.

For the Period July 1, 2001 to June 30, 2002

Overview of DMRMental 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.

Residential services for an

additional 773 people arefunded by other sources.

Less than half(38%) of the

people we serve

7,394live in

residential settings

DMR provides or fundsresidential supports for

6,621 people.

62% of the peoplewe serve

12,034live in their ownhomes or withfamily without

residential support

7,186 individuals livingat home without formal residential support

4,848 children living at home and receiving only Birth to Three services

THE PEOPLE SERVED BY DMR

Includes Birth to Three children.

as of 6/30/02

Mortality Trends

Type of Residential Support

At Time of Death

Mortality and Residence

During the 12 month time period between July 1, 2001and June 30, 2002 a total of 178 out of the 19,500 individuals served by DMR passed away. As can be

seen in the graph to the rightapproximately 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-termcare facility (e.g., nursing home), or other non-DMRsetting . 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.

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.

Health & Mortality Review ANNUAL REPORTSeptember 2002

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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).

This graph shows the number of 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 olderthan other people served by DMR,and, usually went to a nursing homebecause they needed skilled nursingcare. Their death rate is much higherthan for other people served by DMR.

Mortality Rate by Where People LiveNo. Deaths per 1000 People

FY 2002

4.4 4.48.7

15.2

29.7

104.0

0

20

40

60

80

100

120

Home SL CTH CLA Campus LTC

Residential Setting

No

. De

ath

s p

er

10

00

P

eo

ple

* 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.

Health & Mortality Review ANNUAL REPORTSeptember 2002Health & Mortality Review ANNUAL REPORTSeptember 2002

This graph compares the death rate (the number deaths

per 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.

Slight increases in the mortality rate occurred for persons living in Long-Term-Care facilities and their family homes

Gender and MortalityDuring 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.

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.

The two graphs to the right 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.

No. DeathsComparison: FY01 and FY02

182 178

FY01 FY02

Mortality Rate

No. Deaths per 1000Comparison: FY01 and FY02

12.64912.061

FY01 FY02

4.2 7.2 8.716.6

29.8

4.4 4.48.7

15.2

29.7

104.0100.2

0

20

40

60

80

100

120


No

. D

ea

ths

pe

r 1

00

0 P

eo

ple

FY01 FY02

Comparison of FY01 and FY02 Mortality Rate by Where People Live

GENDERNo.

DeathsPercent of

Deaths

Rate (No. Deaths

per 1000)

Men 92 52% 11.139

Women 86 48% 13.233

Total 178 100% 12.061

GENDER No. Deaths per 1000

FY 2002

11.13913.233

Men Women

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The relationship between age and mortality shows the expected trend, with the mortality rate increasing as people served by

DMR get older. As seen here, 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.

Age and Mortality

As can be seen in this graph 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.

Comparison of Average Age & Average Age at Death by Residential Setting

FY 2002

24

4542

45

51

64

32

48

39

5853

68

0

10

20

30

40

50

60

70

80

Home SL CTH CLA Campus LTCResidential Setting

Ag

e (

in Y

ea

rs)

Ave Age Ave Age at Death

Mortality Rate by Age RangeNo. Deaths per 1000 People Served

FY 2002

200.0

92.5

47.539.8

19.810.67.62.81.76.6

0

50

100

150

200

250

0-9 10-19 20-29 30-39 40-49 50-59 60-69 70-79 80-89 90+

AGE RANGEN

o.

Dea

ths

per

100

0

AGE RANGE (in years)

No. Deaths

Percent of Deaths

Death Rate/1000

0-9 9 5% 6.58910-19 4 2% 1.65220-29 7 4% 2.83430-39 20 11% 7.63940-49 28 16% 10.56650-59 35 20% 19.84160-69 33 19% 39.80770-79 21 12% 47.51180-89 16 9% 92.48690+ 5 3% 200.000Total 178 100% 12.061

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.

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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.

As can be seen in this graph, 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.

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.

Mortality Rate by Level of Disabilityfor Persons Served by DMR

FY 2002

19.95

26.04

8.518.789.23

0

5

10

15

20

25

30

No MR orND

Mild Moderate Severe Profound

Level of Mental Retardation

No

. D

eath

s p

er 1

000

Overall average rate = 12.209

Level of Disability and Mortality

DMR Mortality ReviewDMR 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:

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.

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%)

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 hematoma1 – adverse drug reaction 1 – stroke2 – pulmonary embolism (1 following surgery) 1 – pneumonia2 – 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 disease1 – stroke1 – adverse drug reaction1 – pulmonary embolism following orthopedic surgery1 – 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 (non-ambulatory) and 10 (24%) were not able to eat independently.


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• 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.

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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.

SUMMARYDeaths that Occurred and Were Reviewed

between 7/1/01 & 6/30/02


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Location at Time of Death

As can be seen in this graphover 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.

LEADING CAUSES OF DEATHA 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


LOCATION No. PercentHospital 51 41%Hospice Facility 2 2%SNF 15 12%Conv Home 1 1%DMR Campus 8 7%STS HCU 5 4%CLA 21 17%CTH 1 1%Sup Lvng 5 4%Family Home 1 1%Other Community 1 1%Hosp ER 12 10%Total 123 100%

Where People DiedFY 2002 Mortality Reviews

RANK Connecticut DMR

Connecticut U.S.

1 Heart Disease Heart Disease Heart Disease

2 Respiratory Disorders

Cancer Cancer

3 Nervous System Disorders

Respiratory Disorders

Cerebrovascular Diseases (incl Stroke)

4 Cancer Accidents Chronic Respiratory Diseases

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BENCHMARKSWhile 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 DMRThe 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 Research2. 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.


8.7

12.114.3 13.5

U.S

.P

op

ula

tio

n -

all

ages

Co

nn

ecti

cut

DM

R -

all

ages

Co

nn

ecti

cut

DM

R -

18+

Mas

sach

use

tts

DM

R -

18+

COMPARISON OF AVERAGE DEATH RATESGeneral U.S. Population v People Served

by the MA & CT Mental Retardation Agencies

Crude Death Rate = No. Deaths X 1000/Population + No. Deaths

Overall Death RateA 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.

Residential AnalysisA 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.

MA CDR 10.9 37.3 93.4 4.5 7.8 13.5

CT CRD 11.7 29.7 104.0 4.4 16.3 12.1

Comm Resid

DMR Campus

LTC Home Other Total

COMPARISON OF AVERAGE DEATH RATESConnecticut DMR v Massachusetts DMR

By Where People Live

Death rates in DMR would therefore appear to be very consistent with an available benchmark as reported in Massachusetts.

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RESEARCH & REPORTS OF INTERESTThis 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 MortalityThe 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 significant2. As expected, mortality is highly related to client age3. Women served by DMR are older than men, and hence have a higher mortality rate4. Increased levels of disability are inter-related and correlated with higher risk of mortality5. The strongest predictors of mortality are age, mobility status, and amount of supervision provided6. 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 Center860-418-6163 or [email protected]

California Study of National Mortality Review SystemsThe 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 OverviewCompleted: 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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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 UnitThe Connecticut DMR has a unique relationship with the State Police that includes the assignment of a seniorOfficer 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 OPAThe 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 FamiliesNew 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 ReportsThe 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 CenterMarcia Noll, Director, Health and Clinical Services


Health and

Mortality MID-YEARREPORTIssued

MARCH 2003

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.

For the Period July 1, 2001 to December 31, 2002

Overview of DMRThe 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.

Mortality TrendsNO. 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.

0

20

40

60

80

100

120

140

160

180

200

FY01 FY02 FY03

No

. Dea

ths

182 178

132*

66

*During the first 6 mo. of FY03 there were 66 deaths, pro-rated to 132 (full year) to allow comparisons to prior years.

Figure 2

No. Deaths by Fiscal YearFor Persons Served by

DMR

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.

Health & Mortality Review MID-YEAR REPORTMarch 2003

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* 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.

Mortality RateNo. Deaths per 1000

Figure 3

12.6512.06

9.04

FY01 FY02 Mid-YearFY03

FY03 data pro-rated for full year

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.

Mid-Year FY2003 (July to December)Death Rate (per 1000) by Where People Lived

Res Category No. DeathsPro-rated to Full

Year (X2)Population as of

Dec 31 Total Pop Crude Rate No./1000Home 8 16 7846 7862 0.002 2.04SL 8 16 1328 1344 0.012 11.90CTH 1 2 463 465 0.004 4.30CLA 16 32 3429 3461 0.009 9.25Campus 10 20 880 900 0.022 22.22LTC 22 44 421 465 0.095 94.62Other 1 2 106 108 0.019 18.52Total 66 132 14473 14605 0.009 9.04

Table 1

2.0411.90

4.30 9.25

22.22

94.62

18.529.04

0

20

40

60

80

100

Home SL

CTHCLA

Campus

LTC

Other

Total

No

. D

eath

s p

er 1

000

Mortality Rate by Where People LiveFY 2003 (Pro-rated)

Figure 4


Comparison of Mortality Rate Trends by Where People Live

FY01 - FY02 - FY03 (pro-rated)

Figure 5

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.

0

20

40

60

80

100

120

No

. D

ea

ths

pe

r 1

00

0 P

eo

ple

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


-3-


DMR Mortality ReviewsDMR 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.

• 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

IMRB Membership

-4-

Current Status and Activities 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 ReviewsActivities 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.

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 & AdvocacyCooperation 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 ScreeningDuring 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


-5-


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.

Percentage of Persons with Risks Identified Through Screening by Type of Residential Support

78%

60%

44%

3%10%

29%

100%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Campus DMRCLA

PrivCLA

DMR SL Priv SL CTH Hab Nur

Pe

rce

nt

wit

h I

de

nti

fie

d R

isk

s

Average

Cmpltd Risks42%

Cmpltd No

Risk58%

Safety Screening Results March 2003

Figure 6 Figure 7

-6-

DMR Database Changes: Functional Profile ScreenIn 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.

Data represents distribution of the 88% of individuals noted above who have had an initial safety screen completed.


IMRB Future InitiativesThe 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 CenterMarcia Noll, Director, Health and Clinical Services

-7-

DMR Traditional

6095

Self DirectedRes Support

561

Other Residential

779

ResidSupport

7435

Home/Ind 7232

Birth-3, 5989

THE PEOPLE

SERVED BY DMRFY 03

Health and

Mortality ANNUALREPORT

OCTOBER 2003

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.

For the Period July 1, 2002 to June 30, 2003

Overview of DMRMental 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.

as of June 30, 2003

Over 7,000 individualslive at home, eitherindependently or with their families.

About 6,000 infantsand toddlers receiveearly intervention supportthrough DMR’s Birth to Three System.

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.

Figure 1

SECTION IMortality Trends

Figure 2Type of Residential

SupportAt Time of Death

Mortality and ResidenceDuring the 12 month time period between July 1, 2001and 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 non-DMR 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.

-2-

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 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.

1 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).

Mortality Rate by Where People LiveNo. Deaths per 1000 People

FY 2003

4.17.6

4.3

12.3

22.6

30.2

100.8

0

20

40

60

80

100

120

Home SL CTH CLA STS RC LTC

Residential Setting

No

. De

ath

s p

er

10

00

Pe

op

le

Figure 3

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.

Health & Mortality Review ANNUAL REPORTOctober 2003

Other2%LTC

30%

Home20%

RC5%

STS9%

CLA27%

SL6%

CTH1%


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.

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 MortalityAs 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.

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.

-3-

No. DeathsComparison: FY01- FY02 - FY03

182 178

160

FY01 FY02 FY03

Mortality RateNo. Deaths per 1000

Comparison: FY01- FY02 - FY03

12.6512.06

10.79

FY01 FY02 FY03

Figure 4

Figure 5

Figure 6

GENDER No. Deaths per 1000

FY 2003

11.5389.836

Men Women

GENDERNo.

DeathsPercent of

Deaths

Rate (No. Deaths

per 1000)

Men 96 60% 11.538

Women 64 40% 9.836

Total 160 100% 10.791

Table 1FY03 Mortality Rate by Gender

Figure 7

0

20

40

60

80

100

120

No

. D

ea

ths

pe

r 1

00

0 P

eo

ple

FY01 FY02 FY03

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


Mortality Rate by Where People Live3 Year Trend

Mortality Rate by Age RangeNo. Deaths per 1000 People Served

FY 2003

166.7

81.9

41.734.8

18.67.46.05.1

1.26.4

0

20

40

60

80

100

120

140

160

180

200

0-9 10-19 20-29 30-39 40-49 50-59 60-69 70-79 80-89 90+

AGE RANGE

No

. D

eath

s p

er 1

000

Mortality Rate by Age Range Comparison of FY02 and FY03

0

20

40

60

80

100

120

140

160

180

200

No

. De

ath

s p

er

10

00

FY02 6.589 1.652 2.834 7.639 10.566 19.84139.807 47.511 92.486 200.00

FY03 6.395 1.211 5.100 5.981 7.394 18.63034.843 41.667 81.871 166.66

0-9 10-19 20-29 30-39 40-49 50-59 60-69 70-79 80-89 90+

Only age range w ith an

increase in mortality rate

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.

Age and Mortality


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.

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.

Figure 8

Figure 9

After age 70-yrs, the death rateincreases dramatically – in linewith overall population trends.

Comparison of Ave Age of Population and Average Age at Death by Residence

FY03

20

30

40

50

60

70

80

Ag

e in

Ye

ars

Ave Age 23 39 43 45 45 57 65

Ave Age at Death 29 47 57 48 56 68 71

Home RC CTH SL CLA STS LTC

+6

+8

+14

+3

+11

+11+6

-4-

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

-5-

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).

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.

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.

Level of Disability and Mortality

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:

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.

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.


Mortality Rate by Level of Disabilityfor Persons Served by DMR

FY 2003

12.66

25.21

8.20 8.69 7.69

0

5

10

15

20

25

30

No MR orND

Mild Moderate Severe Profound

Level of Mental Retardation

No

. Dea

ths

per

100

0

Overall average rate = 10.80

Figure 11

SECTION IIDMR Mortality Review

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 – Septicemia1 – 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.

-6-


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.

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.

• 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).

• 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.

-7-

SUMMARY OF FINDINGS

for deaths that were reviewed in FY03


Manner of Death No. Percent

Natural 132 97.8% Accident 1 0.7% Homocide 0 0% Suicide 0 0% Undertermined 2 1.5% Total 135 100.0%

Table 2FY03 Manner of Death

-8-

Location at Time of DeathAs 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.

SECTION IIILeading Causes of Death

Figure 12

Where People DiedFY 2003 Mortality Reviews


Other68%

DMR Setting

32%

LOCATION No. PercentHospital 46 34%Hospital ER 12 9%Hospice Facility 2 1%Nursing Home 30 22%Family Home 1 1%Other Community 1 1%Subtotal Non-DMR 92 68%DMR Campus 15 11%STS HCU 1 1%CLA 21 16%CTH 1 1%Sup Lvng 5 4%Subtotal DMR 43 32%Total 135 100%

Table 3LOCATION AT TIME 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.

Table 4

Leading Causes of DeathRANK Connecticut

DMRCalendar Year 2002

ConnecticutCalendar Year 1998

(most recent available)

U.S.Calendar Year 2001

1 Heart DiseaseCancer

Heart Disease Heart Disease

2 Respiratory Disorders

Cancer Cancer

3 Nervous System Disorders

Respiratory Disorders

Cerebrovascular Diseases (incl Stroke)

4 Renal Failure Accidents Chronic Respiratory Diseases


-9-

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 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 IVEnhancements:Individual Safety ScreeningDuring 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 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).


42%

27%

13%

29%

0%

10%

20%

30%

40%

50%

At Least OneRisk

Mobility Risk Seizure Risk Eating Risk

Safety ScreeningsPercent of Screenings by Type of Risk

FY 2003

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

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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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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

Report prepared by:Steven Staugaitis, Ph.D. and Marcia Noll, M.S.N., with the assistance of Tim Deschenes-Desmond and Ivette DeJesusOctober 3, 2004


END OF REPORT

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.

FY03 Safety ScreeningsPercent with One or More Risk Factors

by Type of Residential Support

74%

85%

100%

47%

30%

8%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

STS RC HabNurs

CLA CTH SL

FY03 Safety ScreeningsPercent with Mobility Riskby Type of Residential Support

43%

61%

100%

31%

15%

5%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

STS RC HabNurs

CLA CTH SL

FY03 Safety ScreeningsPercent with Seizure Riskby Type of Residential Support

25%

38%

0%

13%7%

3%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

STS RC HabNurs

CLA CTH SL

FY03 Safety ScreeningsPercent with Eating Riskby Type of Residential Support

62%

78% 76%

30%

16%

2%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

STS RC HabNurs

CLA CTH SL

Documents

Sample Mortality Reports Issued by the State of Connecticut Department of Mental Retardation September 2002 March 2003 October 2003