Fatality Review Board Report
2008 - 2010
Fatality Review Board for Persons with Disabilities
The Fatality Review Board for Persons with Disabilities (FRB) was established by Executive Order in 2001. It is supported by the Office of Protection and Advocacy for Persons with Disabilities (OPA) and operates independently of the Department of Developmental Services (DDS) mortality review structure. The FRB tracks all reported DDS client deaths and pursues preliminary inquiries as well as a limited number of independent investigations into the circumstances surrounding certain selected deaths.
Fatality Review Board Members
The Executive Director of OPA chairs the FRB. The FRB currently has four other members drawn from medical, law enforcement and human service professions and appointed by the Governor. These individuals are:
Lieutenant David Rice, Commanding Officer, Division of Scientific Services, State of Connecticut Department of Public Safety, serving on the FRB as the designated law enforcement professional with a background in forensic investigations;
Supervising State’s Attorney John DeMattia, representing the Chief State’s Attorney;
Patricia Mansfield, R.N, Executive Director, United Cerebral Palsy (UCP) of Eastern CT, a professional in the field of intellectual disability;
Gerard Kerins, M.D., Chief of Geriatrics, Hospital of Saint Raphael.
Mortality Statistics (July 1, 2008 - June 30, 2010)
Between July 1, 2008 and June 30, 2010, three-hundred-sixty-seven (367) deaths were reported to OPA by DDS. According to the information received from DDS, two-hundred-twenty-nine (229) or 62% of the people who died had “Do Not Resuscitate” (DNR) Orders, and seventy-one (71) or 19% received hospice services. Autopsies were performed in thirty (30) or 8% of all cases. One-hundred-sixty-five (165) or 45% of those who died were women, two-hundred-two (202) or 55% were men.
These figures are generally consistent with mortality reports from recent years. Of note, however, is the percentage increase in the number of DNR Orders for the last two reporting periods. During the 2003 to 2005 reporting period, DNR Orders were instituted in 36% of all deaths. During the 2005 to 2006 reporting period, this figure was 46%. During the 2006 to 2008 reporting period, DNR Orders were instituted in 60% of all deaths. During the current reporting period, the percentage of DNR Orders is similar to 2006 to 2008 reporting period at 62%.
Age and Mortality
As may be expected, the largest number of deaths occurred in the over-60 age group, with 167 (45.5%) deaths reported. 78 (21%) occurred in the 51 to 60 age group; 51 (14%) in the 41 to 50 age group; 20 (5%) in the 31 to 40 age group; 29 (8%) in the 21 to 30 age group; 18 (5%) in the 11 to 20 age group; and 4 (1%) in the age group birth-to-10.
Residence at Time of Death
114 (31%) of the individuals were living in community living arrangements (often referred to as “group homes”) at the time of their deaths; 108 (29%) of the individuals were living in nursing homes ; 58 (16%) at home with their families; 39 (11%) at Southbury Training School (STS); 12 (3%) in State operated regional centers; ; 11 (3%) in their own homes with minimal support (case management services only); 7 (2%) were receiving individual supports in their own homes (previously referred to as supported living arrangements); 7 (2%) in licensed community training homes; 7 (2%) in hospital settings, such as the Hospital for Special Care; 1 in a residential care home (board and care home); 1 in a correctional facility; 1 in a foster home; and 1 while staying with a respite provider.
Where are People Dying?
The residence of a person at the time of his or her death is not necessarily the location that person died. For example, a person may have lived in a community living arrangement prior to his or her death, but may have actually died in a hospital. In fact, 194 (53%) of the deaths reported occurred in hospitals. 64 (17%) in nursing homes; 27 (7%) in community living arrangements; 21 (6%) in hospital emergency departments; 18 (5%) at STS; 17 (5%) in family homes; 11 (3%) in hospice facilities; 6 (2%) in their own homes receiving minimal supports; 3 (1%) in their own homes receiving individual supports; 2 each in State-operated regional centers, and licensed community training homes; 1 in a correctional facility and 1 in the community with no supports.
Causes of Death
Cardiac arrest, cardiopulmonary arrest, cardiovascular disease and congestive heart failure accounted for a total of 112 (30.5%) of all deaths during this reporting period. Other causes of death listed in rank order include: 65 (18%) attributed to pneumonia; 49 (13%) to respiratory arrest or disease; 26 (7%) to cancer; 24 (6.5%) to sepsis; 21 (6%) to a cerebral hemorrhage, embolism or stroke; 13 (3.5%) to Alzheimer’s dementia; 11 (3%) to renal failure; 6 (2%) each to seizure disorder and surgical complications; 5 (1%) to accidental trauma; 4 each to internal hemorrhage and metabolic disorder; 3 to bowel obstruction; 2 each to fire/burns, infectious disease and terminal illness process; and 1 each to acute illness, drug overdose, pancreatitis and suicide.
Three (3) deaths were recorded as having “unknown cause”; four (4) were recorded as “other”; and one (1) was recorded as “undetermined.”
The leading causes of death recorded by the FRB during the reporting period are generally consistent with mortality experience from previous years. Statistics made available in DDS’s most recent Mortality Annual Report (dated February 2007) indicate that in both Connecticut and Massachusetts, the leading causes of death for persons with intellectual disability for the years 2002, 2003 and 2004 were heart disease, respiratory disease (including aspiration pneumonia), cancer and sepsis.
Cases Reviewed by the FRB
FRB staff receive, review and log into a database reports of all deaths known to DDS. Reports of deaths occurring under unusual circumstances, those of unknown cause or those suggesting possible deficiencies in care and treatment are identified for further in-depth review and/or preliminary investigation. In cases requiring in-depth review, Board staff obtains pertinent records, including autopsy reports, medical and other clinical records, police and ambulance reports and investigations completed by other agencies. FRB staff also contact family members, agency staff, medical professionals and others having knowledge of the person’s history and/or the circumstances surrounding the person’s death. Investigative activities may also include site visits and consultations with Board members and other experts. Information concerning these cases is prepared for the Board to review. The Board then makes recommendations for further review, investigation or action in each case, or, if warranted, makes recommendations to DDS and other agencies. FRB staff also work jointly with OPA/AID investigators in the investigation of those deaths where abuse or neglect are suspected to have played a role. The Board monitors the progress of all such investigations.
During the time period between July 1, 2008 and June 30, 2010, one-hundred-twenty-six (124), or 34% of all reported deaths, were subject to in-depth discussion, monitoring, investigation and/or review.
Allegations of Abuse/Neglect
Although the FRB is authorized to pursue full, independent investigations, Connecticut legislative changes in 2004 directly charged OPA with responsibility for conducting investigations into most deaths of adults with intellectual disability when abuse or neglect is suspected of having played a role. OPA’s Abuse Investigation Division (OPA/AID) conducts primary investigations into most of these deaths, although due to the location or other circumstances surrounding a particular death, other regulatory or law enforcement agencies, such as the Department of Public Health (DPH), the Department of Children and Families (DCF), and various law enforcement agencies may have primary jurisdiction. Consistent with its established practice, the FRB monitors the status of those investigations and reviews the resulting reports. When the FRB determines that circumstances warrant doing so, it conducts more extensive reviews of investigations initiated by other entities into such allegations.
Of the 367 cases reviewed by the FRB, only thirty-one (31), or 8 %, were considered to involve allegations of abuse or neglect. Of these thirty-one (31) deaths, fifteen (15) were directly investigated by OPA. Ten (10) cases were referred to the Department of Public Health (DPH) due to concerns about the performance of licensed health care facilities and/or individual providers; three (3) cases were investigated both by OPA and DPH; and in one (1) case, OPA monitored an investigation conducted by a private provider.
Of the fifteen (15) completed cases, neglect was substantiated by the OPA and/or DPH in eleven (11) cases. Two (2) cases resulted in no substantiation of abuse or neglect; and, after a preliminary investigation, two (2) cases were determined not to fall within the purview of the OPA/AID.
In 2008, the FRB initiated a review of a sample of deaths of DDS clients occurring in nursing homes over a five-year period between January 1, 2002 and December 31, 2007. The primary purpose of this inquiry was to examine variables which might influence nursing home placement and the length of nursing home stay.
In September 2010, the results of the Board’s inquiry, A Pilot Study Analyzing Mortality of Adults with Developmental Disabilities Residing in Nursing Homes in Connecticut, were published in the Journal of Policy and Practice in Intellectual Disabilities. The following findings were of significant note:
any individuals were admitted to nursing homes at an earlier age than for the nondisabled general population.
people with intellectual disabilities stayed in nursing homes longer, and died later than the general population of non-disabled individuals admitted to nursing homes.
About half the sample received case management on at least an annual basis; a third had no documented case management.
Lack of appropriate alternate residential settings, lack of support services for families, and lack of case management resources for adults with intellectual disabilities residing in nursing homes in Connecticut were all apparent from the findings.
The authors concluded that better standards of care and medical practices must be developed, more effective administrative and support services must be coordinated, and ultimately, family supports must be increased in order to prevent non-medical need admissions to nursing homes.
In 2009, the Connecticut General Assembly passed legislation, which requires that the Department of Mental Health and Addiction Services (DMHAS) report all deaths of persons living in DMHAS-operated facilities to OPA for review. Between June 2009 and September 30, 2010, eleven (11) deaths have been reported and nine (9) have been reviewed.
As a result of its investigations, reports and recommendations, the FRB continues to bring issues to the attention of DDS and other state departments, in an effort to effect positive systems changes, which will benefit individuals who need and receive DDS support services.
The FRB’s interests in the coming year continue to include people with disabilities who are aging, particularly as this relates to developing community-based alternatives to placement in long-term care facilities; improving the ability of the service system to secure the cooperation of people who are reluctant to seek out or accept services of healthcare providers and/or who manifest fear of medical examinations and other healthcare interventions; and developing more information regarding what continues to appear to be an increasing utilization of “Do Not Resuscitate” (DNR) Orders.