Department of developmental services prepared by: center for developmental disabilities

2009 MORTALITY REPORT

COMMONWEALTH OF MASSACHUSETTS

EXECUTIVE OFFICE OF HEALTH & HUMAN SERVICES

DEPARTMENT OF DEVELOPMENTAL SERVICES

PREPARED BY:

CENTER FOR DEVELOPMENTAL DISABILITIES

EVALUATION AND RESEARCH (CDDER)

Prepared by:

Emily Lauer, MPH

Consultant Analyst

Center for Developmental Disabilities Evaluation and Research (CDDER)

Prepared with support from:

Steven Staugaitis, PhD

Assistant Professor

CDDER
Alexandra Bonardi, MHA OTL/R

Director

CDDER
Sharon Oxx, RN, CDDN

Director of Health Services

MA DDS
Gail Grossman

Assistant Commissioner for Quality Management

MA DDS

Center for Developmental Disabilities Evaluation and Research

University of Massachusetts Medical School

Eunice Kennedy Shriver Center

200 Trapelo Rd., Waltham, MA 02452

Tel. (781) 642-0283 Fax. (781) 642-0162

www.umassmed.edu/cdder/ cdder@umassmed.edu

The Commonwealth of Massachusetts

Executive Office of Health & Human Services

Department of Developmental Services

500 Harrison Avenue

Boston, MA 02118-2439

Dear Colleagues and Friends:

calendar year 2009. The report is compiled by the Center for Developmental Disabilities

Evaluation and Research (CDDER), of the University of Massachusetts Medical School.

The report analyzes information on all deaths occurring in calendar year 2009 for all

persons 18 years of age or older who have been determined to be eligible for DDS

supports. This is the eighth year in which DDS has commissioned an independent

review of all deaths.
The report is a significant component of the Department's quality management system

and reflects DDS's ongoing commitment to reviewing and learning from critical

information gathered regarding individuals within our system. DDS is committed to a

thoughtful and detailed review of deaths of individuals we support and the opportunity

such a review presents for organizational learning. Massachusetts is one of but a

handful of states that compiles mortality information. We are proud of the fact that data

from this report informs the Department's on-going service improvement efforts.
With the assistance of CDDER, DDS has made significant progress in improving our

standardized reporting systems, strengthening our clinical mortality review process and

improving the comparability of our data to state and national death statistics.
This report is reviewed by the Statewide Mortality Review Committee as well as our

Statewide and Regional Quality Councils to assist DDS in its ongoing commitment to

supporting the health and quality of life of the individuals we support. I remain

committed to the importance of this independent mortality report as a vital and critical

component of the Department's quality management and improvement system and an

important step in our shared organizational learning process.

Sincerely yours,

TABLE OF CONTENTS
Executive Summary iv

Introduction 1

Overview of Population Served by DDS 1

Mortality During 2009 5

Age 6

Gender 7

Age-adjusted Mortality Rates 12

Age-adjustment within the DDS Population 12

Trends Over Time 13

Causes of Death 15

Causes of Death for Specific Groups 20

Mortality Review Process and Committee 22

Investigations 23

Benchmarks 25

Place of Death 29

Hospice 31

Healthy People 2010 Objectives 36

Executive Summary

Annual mortality reports are part of the Massachusetts Department of Developmental Services’ (DDS), robust quality management and improvement system. The Department’s established process for mortality review and death reporting provide the data included in this report. Mortality findings are used to inform quality improvement efforts for supports provided by the Department. The report is written by the University of Massachusetts Medical School, E.K. Shriver Center, Center for Developmental Disabilities Evaluation and Research (CDDER), which has prepared annual reports on mortality within this population of Massachusetts citizens since the year 2000.

In the middle of calendar year 2009, the Massachusetts DDS served 33,895 individuals, 24,501 of whom were adults with intellectual disabilities over the age of 18 years. A net increase of about 1.9%, or 449 people, was seen in the mid-year adult consumer population from June 2008 to June 2009. Population changes demonstrate a pattern of continued aging in the DDS population.

A total of 421 deaths occurred for active DDS service recipients in 2009, resulting in a crude adult mortality rate of 17.2 individuals per thousand. The average age at death of adults in the DDS population during 2009 was 58.7 years. The median age at death, or the middle age if all deaths were ranked by age, of adults in the DDS population during 2008 was 58.3 years. Mortality statistics in 2009 do not show a significant change in the rate of death for the population from 2008.

Patterns of mortality in the DDS population are influenced by a number of important factors.

• Gender: In recent years, the adult mortality rate for females has increased while the rate for males has slightly decreased. In 2009, more deaths occurred for females than for males, which is not typical of past years. Comparison of age-adjusted rates shows that the higher mortality rate for females is due to factors other than the age distribution of the population.

• Age: Mortality rates show a proportional relationship with advancing age – the youngest age groups have the lowest rates of death and the mortality rate increases with age. The average age of death was significantly lower than past years at 58.7 years. This appears due in part to a lower rate of death in the oldest age groups in 2009, compared to previous years.

• Residential Setting: There are substantial differences in mortality between residential settings. Mortality rates are lowest in people living at home or with family. People living in this setting tend to be younger than other residential settings, and also have the lowest average age at death. Mortality rates are highest for people living in nursing homes due to advanced age and/or health conditions. The relationship between type of residence and mortality are consistent with expectations and with trends present in other state intellectual disability systems.

• Heart disease was the leading cause of death in 2009

• Alzheimer’s disease was the second leading cause of death with 15.2% of deaths. In recent years, the proportion of deaths due to Alzheimer’s disease has increased. In 2009, this cause was responsible for more deaths than in any previous year since 2000 (the first year of this report). The increasing impact of Alzheimer’s disease on mortality is a trend that is mirrored in both the Massachusetts and U.S. adult populations.

• Cancer, the third-ranked cause of death, accounted for 13.3% of deaths, and had an adult cause-specific mortality rate of 2.3 per thousand.

• Aspiration pneumonia was the fourth leading cause of death with 7.6% of deaths and an adult mortality rate of 1.3 per thousand. This rate is lower than mortality rates seen in 2007 and 2008.

• The 2009 rate of death from Influenza and Pneumonia was similar to the 2008 rate; both years experienced rates of flu infections at an epidemic levels. Deaths from influenza infections appeared to be particularly higher than normal in young adults residing in their own home independently or with family. Prevention efforts, such as annual flu vaccination, may help reduce the instances of mortality in this subpopulation.

• The rate of death from septicemia continued to drop from previous years to 1.1 per thousand in 2009, making it the fifth leading cause of death.

• The crude adult rate of death from stroke dropped from 0.7 per thousand in 2008 to 0.2 per thousand in 2009. This is the lowest adult mortality rate due to stroke seen since 2000 (the first year of this annual report).

Other Key Findings in 2009:

• Hospice use in the population served by DDS (39% in 2009) consistently increased since 2007 (29%) and rapidly approached the rate of utilization in the general population. Consistent with previous years, a higher percentage of hospice users in the DDS population died in their own home than in the general population.

• In 2009, 25 investigations of abuse or neglect were completed. Three of the investigations were substantiated.

• Similar to previous years, the five year average for crude adult mortality rates for individuals served by the Massachusetts DDS meet many of the CDC’s Healthy People 2010 targets for all-age mortality rates.

o The 5-year average adult crude mortality rate for female breast cancer continues to be within 25% of the HP2010 targeted mortality rate for all ages. The average mortality rate from colorectal cancer exceeds the HP2010 goal, and mortality rates from both causes are above state and national rates. In both of these types of cancer, early detection can improve survival rates; supporting ongoing efforts to advocate for mammography and colorectal cancer screening in this population.

o The five year average crude mortality rate for unintentional injuries has risen slightly, due to more aspiration and choking deaths. However, the five year average for mortality due to falls has continued to decline

o In 2009 the rate of death from stroke dropped substantially, bringing the 5-year average within 25% of the HP 2010 goal. Chronic Obstructive Pulmonary Disease (COPD) rates continue to be higher than goal and a substantial source of mortality.

o The rate of deaths from unintentional injuries in 2009 was below the state and national rates. However, the 5-year average is higher than state and national rates, and exceeds the HP2010 goal.

o While still below the HP 2010 targets, diabetes-related deaths saw an increasing trend from 2004 to 2008, but dropped in 2009 in the adults served by the MA DDS.
2009 Mortality Report

INTRODUCTION

This report presents population and mortality information about adults (18 years old and older) eligible for services from the Massachusetts Department of Developmental Services (DDS) during the period between January 1 and December 31 of 2009. The mortality information in this report includes all adults who were eligible and active service recipients (“consumers”) in the Meditech Consumer System during this period and who died during the 2009 calendar year.
The Massachusetts DDS utilizes a formal process for reviewing and reporting instances of mortality. This process, instituted in 1999, is an integral component of the Department’s robust quality management and improvement system. Through this process, DDS reviews the causes and circumstances of the deaths of people it supports, and uses the findings to inform quality improvement efforts of the Department. As part of this effort, the University of Massachusetts Medical School, E.K. Shriver Center, Center for Developmental Disabilities Evaluation and Research (CDDER) has prepared annual reports on mortality of this population of Massachusetts citizens since the year 2000. In order to prepare each annual report, CDDER compiles mortality information from DDS records as well as other external sources and performs mortality and population analyses contained in this report.

DDS Clinical Mortality Review

• Are at least 18 years of age;

• Receive a minimum of 15 hours of residential support that is provided, funded, arranged or certified by DDS;

• Died in a day support program funded or certified by DDS;

• Died in a day habilitation program; or

• Died during transportation funded or arranged by DDS.

Because the population served by DDS fluctuates over the course of the calendar year, a snapshot of the population at a single point in time is used to estimate the calendar year population. Since the population served by DDS tends to increase as the year progresses, the mid-year population (June 2009) is used to model the average population across the entire year.

Age Characteristics

The age distribution for the DDS population is presented in Figure 1 by 10 year age groups. The populations in the age groups between 18 and 54 years are of similar size, each with between 4,500 – 5,000 people. Over the age of 54, the numbers of people in each age band decreases with increasing age. Compared to the Massachusetts general population, the MA DDS population of adults is younger with a smaller proportion of the population over the age of 65 years.

Table 1 and Figure 2 present the change in the DDS population between calendar years 2008 and 2009. The gross population change shown in Table 1 by age group reflects changes resulting from new consumers entering the DDS system, consumers aging into the next age group, consumers relocating out of the state, and consumers that have died. Small gross increases of between 1% and 9% are seen in most non-elderly age groups except for the 25-34 year old group, which had a 2% decline. The elderly age groups had gross increases of 15-26%. While the elderly age groups are the smallest and these changes represent a small change in the number of people, these changes demonstrate a pattern of continued aging in the DDS population.

The gender distribution in the 2009 adult DDS population is similar to 2008 and previous years for most age groups. As Figure 3 shows below, the proportion of men and women served by DDS varies with age. Younger age groups have a larger proportion of men. The shift in gender distributions in the elderly population is similar to reports from other states and that seen in the general population.

Residential Setting Characteristics

Adults receiving services from DDS reside in a variety of different settings. Many individuals live independently in their own homes or with their family, while others receive residential supports directly from DDS or from another state agency. In this report, the residential settings are grouped into six categories. The percent of people served by DDS living in each residential category is presented in Figure 4.

Just over half of the adults served by DDS reside in their own home, which includes people living independently or with their family. Residential programs operated, licensed/certified or funded by DDS are shown in the sections shaded in solid grey in Figure 4. About 38% of adults served by DDS live in community residential programs, and less than 4% live in DDS facilities. The number of people living in DDS facilities continues to decline annually largely due to DDS’s efforts to plan transitions to community settings for these residents.

About 7% of adults served by DDS reside either in programs that are funded privately or by other agencies, represented by the “Non-DDS” category in Figure 4, or in nursing homes. In 2009, the proportion of the population living in Non-DDS settings increased from 4.4% of the population in 2008 to 5.3% of the population in 2009.

About 0.2% of individuals live out of the state of Massachusetts (not shown in Figure 4). These people are class members in the Ricci V. Okin (1972) lawsuit living outside of the state of Massachusetts. Class members include anyone who was part of the original Class Identification List as of April 30, 1993, or who lived at a state facility for more than 30 consecutive days or for more than 60 days during any twelve-month period after this date. Class members are eligible for DDS services on a lifetime basis as described in their Individual Support Plan (ISP). Therefore, individuals in this group are active service recipients and are counted within the adult DDS population.

(See Appendix B for a more detailed description of the categories of residential settings).
MORTALITY DURING 2009

This section contains information on the deaths of individuals who were 18 years of age or older at the time of death and who were eligible for DDS services and supports during calendar year 2009. Appendix A describes the methodology used to collect and analyze the information and data contained in this section.

A total of 421 deaths occurred for active DDS service recipients in 2009, resulting in a crude adult mortality rate of 17.2 individuals per thousand. DDS received death reports for 415 decedents for calendar year 2009. A validation exercise was conducted between the electronic DDS mortality reports filed for 2009, consumers listed in the agency’s Meditech Consumer System, and the Social Security Death Index. Six additional decedents were confirmed to be DDS consumers for whom a DDS death report had not yet been filed, bringing the total number of deaths to 421. To date, two of the DDS death reports have now been completed for these consumers.

The average age at death of adults in the DDS population during 2009 was 58.7 years. The median age at death, or the middle age if all deaths were ranked by age, of adults in the DDS population during 2009 was 58.3 years. Mortality statistics in 2009 do not show a significant change in the rate of death for the population from 2008 .

Age

Mortality statistics for the adult population by age group are presented in Table 2. The table includes the number of individuals who died, the relative percentage of 2009 deaths, and the crude mortality rate. The use of a mortality rate (deaths per thousand individuals) controls for differences in the population size between age groups, and allows for age groups of different size to be compared to each other.

The relationship between age and rate of death for adults served by DDS is displayed in Figure 5. The line in Figure 5 is used to illustrate the increase of mortality rate with age. In the elderly age groups (age 65+) mortality rates are the highest, showing sharp increases compared to younger age groups. These higher rates reflect the expected increase in risk of mortality for adults of advanced age.

Gender

Gender proportions vary with age in the population served by DDS, and a complex relationship exists between gender and mortality.

Figure 6 shows the crude adult mortality rate for each gender over the past 9 years. In recent years, the adult mortality rate for females has increased, while the rate for males has slightly decreased. In 2009, more deaths occurred for females in 2009 than for males, which is not typical of past years. Because there are substantially more males served by DDS, initial expectations may be to have more deaths in males than females. However, females served by DDS may experience certain factors that put them at a higher risk for mortality than males such as more people in older age groups, or more people with serious health conditions.

Because the age distribution within each gender differs, age-adjusted adult mortality rates are presented in Figure 7. These adjusted rates allow for comparison of the mortality rates across genders as if both genders had the same age distribution. Because age is such a strong risk factor for mortality, this allows us to examine differences due to factors other than age. From 2002 – 2009, the adjusted mortality rate for females has generally been lower than that of males. In 2009, the adjusted mortality rate for females is greater at 19.9 per thousand than for males at 16.7 per thousand. This comparison of adjusted rates shows that the higher mortality rate for females due to factors other than the age distribution of the population.
Residence

Adults eligible for DDS services live in one of six general types of residential settings: their own home independently or with family; community settings operated, funded or certified by DDS; residential programs that are not part of the DDS system; facilities operated by DDS; and nursing homes or other long-term care settings. In addition, a small proportion of the population (0.2%) is made up of Ricci class members residing outside of the Commonwealth of Massachusetts. (For more information on the residential distribution in this population, see ‘Residential Setting Characteristics”, above.) Specific definitions, including residential codes, are contained in Appendix B. Mortality statistics for these residential categories are displayed in Table 4.

Age and Residence

The average age at death varies across residential settings. Generally, the average age at death for each residential setting is reflective of the relative age and the health status of the population that reside in each setting. Historically, in the DDS population, the rate of death is higher in residential settings that have a higher average age at death, an expected finding since age is highly correlated with risk of mortality. Mortality statistics in 2009 continued to follow this pattern with the exception of the ‘non-DDS’ supported setting which is small and subject to annual fluctuation.

The relationship between type of residence and mortality are consistent with expectations and with trends present in other state intellectual disability systems. This is because the average population age and health tends to vary by type of residential setting.