Chapter VI

POST-DEATH REVIEW

Background

• Because of the nature of mental retardation, DMR often serves people throughout their entire lifetimes.

_ During FYs 92-01, an average of 165 DMR clients died each year, for a total of 1,654 client deaths.

_ 388 (23 percent) of these deaths involved clients living in community living arrangements, for an average of 39 client deaths per year.

• DMR policy states the department "has a responsibility to the citizens it serves to ensure quality services including health care. One way to ensure quality is to receive timely notification of the death of every individual served by the department and to review the care provided for these individuals served prior to their deaths."
• The department has a number of policies, procedures, and practices in place to review the care of DMR clients who die. Some of these are required by statute, some have recently been required by a governor's executive order, while others have been put in place through department policy and procedure.
• The post-death steps include the following:

_ reporting all deaths of DMR clients to DMR regardless of residential setting;

_ determining whether the place of death needs to be secured and collection of all records that will be needed for a post-death review;

_ conducting a regional and state medical/health care review for certain deaths depending on the client;

_ reporting certain deaths to the Office of the Chief Medical Examiner;

_ encouraging family members to consent to autopsies in certain deaths;

_ conducting an immediate desk audit of all sudden/unexpected deaths to determine whether an abuse/neglect report should be made;

_ conducting a review by Fatality Review Board for Persons with Disabilities (this is separate from the Independent Mortality Review Board as discussed later in this chapter); and

_ conducting a root cause analysis for selected deaths by DMR upper-level management.

• Descriptions of these processes follow.

Executive Order 25

• Executive Order 25, put into effect February 2002, made several changes to the reporting and oversight procedures regarding deaths of DMR clients. (Appendix F provides a copy of the order.)

_ In general, the order requires DMR to report all deaths of its clients to the Office of Protection and Advocacy (OPA).

_ It replaces the previous Medical Quality Assurance Board with the Independent Mortality Review Board (IMRB), with similar functions as the MQAB, but with a revised membership. As described in Appendix F, the new board includes the additional membership of the state medical examiner, commissioner of public health, two members appointed by the OPA executive director, and a private provider representative jointly appointed by the DMR commissioner and OPA director to members from the previous MQAB (members may include designees).

_ Further, it requires the IMRB to submit annual reports to the governor and legislature outlining trends, analysis, and recommendations.

_ Finally, the order creates a Fatality Review Board for Persons with Disabilities appointed by the governor to investigate the circumstances surrounding untimely deaths warranting a full and independent investigation as determined by the OPA director.

• Executive Order 25 also made changes in other areas of DMR oversight, by increasing the frequency of unannounced visits to public and private facilities, and requiring providers to post their inspection reports either on the internet or within their facilities.

Post-Death Procedures

• Table VI-1 outlines the steps to be taken by DMR following all deaths of residential clients.

_ Every death is to be reported immediately to the individual's family, the DMR regional director (or designee), and the regional health services director.

_ A DMR case manager/other assigned staff is required to file a death report with the DMR central office, within one working day following the death.

_ For every death not under the statutory jurisdiction of the Office of Chief Medical Examiner (which is the majority of cases), DMR policy is to encourage an autopsy, except in certain specified circumstances.

_ Every death is reviewed by the appropriate regional mortality review committee, and may be reviewed by the Independent Mortality Review Committee if it meets certain criteria.

• Different steps are required if the death is considered sudden or unexpected, as opposed to expected.

_ DMR's current policy on sudden/unexpected deaths, first established in June 2001, and revised in March 2002, applies to all persons served in residential programs licensed, operated, or funded by DMR, and people who die while participating in a DMR operated or funded day program, or receiving respite services in a DMR owned or operated facility.

_ It does not apply to people living on their own, with their families, or who have individual support agreements.

Expected Death Defined

• A death is expected if a client has a terminal illness, dies of a condition related to a previous diagnosis, or has a "do not resuscitate" (DNR) order.

Sudden/Unexpected Death Defined

• A sudden or unexpected death is a death:

_ not expected or anticipated according to any previously known terminal medical diagnosis;

_ resulting from an accident (e.g., car accident, fall, choking), even if the person had a known terminal condition;

_ due to a suspected/alleged homicide or suicide; or

_ suspected/alleged to be due to abuse or neglect.

Sudden/Unexpected Death Process

• Sudden or unexpected deaths require immediate local or state police notification and investigation, unlike expected deaths.

_ The DMR Director of Investigations is to be contacted by the regional director/on-call manager if police fail to initiate or decline immediate investigation (a new March 2002/June 2001 feature).

• The environment, documents, and records associated with a sudden or unexpected death are immediately secured and a preliminary review is conducted, as determined by the regional director (a new March 2002/June 2001 feature), and in conjunction with any police investigation.
• The commissioner and regional director decide if a safety assessment is necessary to ensure health and safety of other individuals at the place of death. The safety assessment gauges the safety of other DMR clients and staff at the location of the death. Results are immediately/directly communicated to the regional director who informs the commissioner (a new March 2002/June 2001 feature).
• The Office of Chief Medical Examiner (OCME) is notified by the regional health service director/designee to determine if the death requires a statutorily mandated investigation and possible autopsy. If OCME determines the death does not require such investigation, it will decline jurisdiction (described below).
• Upon OCME declining jurisdiction, the regional health service director is to pursue consent for autopsy from the client's next-of-kin or person who assumes custody of the body for burial.
• One of the two DMR nurse investigators is immediately notified of the death by DMR central office personnel (a new March 2002 feature). The nurse investigator conducts a medical desk review to determine if there is a need for further review or investigation, by talking to appropriate parties and reviewing preliminary documents.

_ If no further review is needed, the case will be referred to the regular mortality review process.

• If further review is needed, the nurse investigator will obtain additional records for examination. Based on this review, if:

_ abuse/neglect is suspected, the case will be referred to the abuse/neglect system for investigation;

_ system deficiencies are identified or suspected, the case will be referred for an expedited mortality review; or

_ no issues are raised, the case will be referred for a regular mortality review.

Cause of Death Investigations and Autopsies

• Regarding decisions about autopsies for its clients, DMR is not the sole decision-maker. State laws related to the Office of Chief Medical Examiner dictate when it must take jurisdiction, and then potentially conduct an autopsy as part of a death cause investigation. (Appendix G summarizes the general OCME process). In cases where OCME does not take jurisdiction, the family of the deceased makes the decision of whether to have an autopsy done.

DMR Policy

• By DMR policy, each regional health service director or designee is required to contact the OCME in all sudden/ unexpected deaths of residential clients occurring in that region.
• A specific form with all pertinent client/death information must be completed prior to telephoning OCME by whoever calls, to document what information was given. Included in the information must be the circumstances of the death (e.g., where the person was found, anything unusual), because this is in part what OCME bases its decision to take the case. The relevant DMR regional health service director must receive a copy of the form by the next working day following contact with state medical examiner's office. If jurisdiction is declined by OCME, DMR procedures for requesting an autopsy from a hospital pathology department are followed, as described below.
• DMR policy strongly encourages autopsies in the following situations:

_ sudden and/or unexpected death;

_ unexplained or unwitnessed deaths;

_ death involving an earlier accident or trauma;

_ death involving questionable contributing factors;

_ death not due to previously diagnosed condition or disease; or

_ if a case involves abuse or neglect allegation, even if the case meets DMR criteria not requiring autopsy, as outlined below.

• By DMR policy, the Office of the Chief Medical Examiner is to be notified of all DMR client deaths involving the situations above.
• DMR policy does not require an autopsy if the individual:

_ received regular medical supervision and had a previously diagnosed terminal illness (e.g. metastic cancer), progressive condition (e.g. congestive heart failure, renal or liver failure), degenerative process, or serious medical condition whereby death is normally expected and diagnosis has been well documented.

• A request for an autopsy is made - whenever possible - by a person who has had a pre-existing relationship with client's family. Consent is obtained from client's next-of-kin as defined in statute, or other person specified by state law.
• Documentation of efforts to obtain consent is to be entered into the client's DMR master file.

Payment for Autopsy

• Payment for autopsies is not available from Medicare, Medicaid, or Social Security. Autopsies may cost up from $2,000 -$3000. Thus, the following sources must be sought for payment:

_ the deceased client's medical insurance plan;

_ the hospital pathology department where the client died or routinely received medical care and an autopsy is performed for clinical or medical interest purposes;

_ the person giving consent for the autopsy (the person assuming custody of the deceased client's remains is also responsible for burial costs);

_ DMR, under the following circumstances:

· payment authorization was obtained from the Regional Director/designee prior to request for, and performance of, the autopsy or

· autopsy request was made by DMR designee based on guidelines described above; and

_ OCME, if that office accepts jurisdiction of the case and performs the autopsy.

• Autopsy results are to be sent to the regional health service director in the region where the client resided. The appropriate regional director must notify client's next-of-kin and review results with family members, if requested. A copy of the notification letter becomes part of client's mortality review file, as discussed below.

Mortality Review Policy and Process

Policy

• In 1988, DMR issued its first policy on mortality review. When first established, the deaths of all clients for whom DMR had direct or oversight responsibility for medical care were to be subject to mortality review "as a means of monitoring and evaluating the quality of health care provided to the deceased client and to improve ongoing health care delivery for clients." The regional mortality review committees and the statewide medical quality assurance board were both to review events and medical care preceding a client's death.
• DMR issued a revamped mortality reporting and review policy and procedures on March 2002. While the policy statement is quite similar to the original 1988 one, the 2002 policy seems to broaden the scope of the review. Mortality review is "one means of monitoring and evaluating the quality of health care and overall care provided to individuals served by the department. Mortality reviews shall also include a review of the quality of life issues and mission principles such as dignity and respect."

Process

• There are two separate levels of mortality review at DMR:

_ all DMR client deaths are reviewed by one of five regional mortality review committees operating out of each region, depending on where the client lived. (Southbury Training School has its own committee); and

_ some of these deaths are subsequently reviewed by the statewide Independent Mortality Review Board, if certain criteria are met, as described below.

Regional Mortality Review Committee

• The regional mortality review committee examines the client's overall care, quality of life issues, and health care preceding the death.
• Mortality review committees are appointed by regional directors.
• At minimum, the regional committee includes:

_ the regional health service director (who chairs committee);

_ a director or supervisor of case management for the region;

_ the region's quality improvement director;

_ a registered nurse who is not a DMR employee; and

_ a client advocate who is not a DMR employee.

• The mortality review process is designed to identify issues or concerns that may have compromised a client's medical, health, or overall care. The reviews are also intended to develop corrective actions, where appropriate, and reduce future risk.
• Case managers are responsible for pulling together the necessary/required documentation "in a timely fashion" for the committees to conduct their reviews. Typically, a registered nurse at the regional level coordinates the review for the committee, including making the necessary contacts, ensuring the mortality review packet is complete and distributed to members, and providing any necessary follow-up on part of the committee. The information for review typically includes staff logs, nurses notes, medical information, and case manager notes.
• Upon discussing the details of a client's death, the regional committee is required to detail its findings, recommendations, or actions on a specified DMR form, including whether:

_ medical and personal care was timely and appropriate;

_ medical specialists were used appropriately; and

_ any systemic issues exist from the case.

• The regional health services director is required to notify the client's next-of-kin and/or legal guardian upon completion of the committee's review and discuss the committee's findings/recommendations if requested.
• The form is to be sent to the Independent Mortality Review Board (IMRB) within 90 days of the death (the regional chairperson is required to notify the IMRB chairperson and explain why any report cannot be made within the 90-day timeframe.) The report is to include:

_ supporting documentation (e.g. death certificate, autopsy report); and

_ documentation showing whether committee closed the case the regional level or if review by the IMRB is required.

• When a DMR client residing out of state dies, his or her service shall request the state where the client died conduct an investigation and submit its findings to the IMRB. If no investigation is conducted, the IMRB may provide for an independent investigation.

Independent Mortality Review Board (State)

• The state-level Independent Mortality Review Board (IMRB) exists to provide an independent review of a DMR client's death by qualified professionals unrelated to the client's DMR service region. (The IMRB was formerly the Medical Quality Assurance Board. Its composition and role were changed with Executive Order 25.)
• A case is automatically referred to the IMRB from a regional committee if:

_ the case involved an allegation of abuse or neglect;

_ the OCME accepted jurisdiction;

_ an autopsy was performed;

_ the client's death was sudden or unexpected;

_ the death was unexpected and unrelated to a previously diagnosed medical condition;

_ the findings/recommendations of the regional mortality review committee were significant and may have statewide significance; or

_ the regional committee is "unsure" of whether to refer the case to IMRB.

• Board members are appointed by the DMR commissioner and include the following members or their designees:

_ DMR Director of Health and Clinical Services;

_ DMR Director of Quality Assurance;

_ DMR Director of Investigations;

_ State Medical Examiner;

_ A medical doctor appointed jointly by the commissioner and the OPA executive director;

_ Commissioner of Public Health;

_ two individuals appointed by the OPA executive director; and

_ a private provider jointly appointed by the commissioner and OPA director.

• The following non-voting staff may provide assistance and support to the board, as necessary:

_ a regional health services director;

_ a regional case management director/supervisor;

_ the Southbury Training School medical director; and

_ the central office Special Protections Coordinator.

• The main functions of the board are to:

_ ensure local mortality reviews fully evaluate heath care, overall care, and quality of life issues, and make recommendations and identify corrective actions as appropriate;

_ recommend an independent investigation of any death;

_ review findings/recommendations of abuse or neglect allegations relevant to the individual's care and make additional recommendations, as needed;

_ identify incidents requiring a more comprehensive review using "root cause analysis" (described below) and review any resulting findings/recommendations;

_ identify specific regional issues needing additional attention and make recommendations;

_ identify systemic issues requiring statewide actions;

_ refer issues or concerns to other state agencies for investigation (e.g., DPH for investigation of medical practitioners and facilities licensed by DPH, including hospitals and nursing homes);

_ send findings and recommendations to the appropriate regional health services director who is responsible for notifying families/guardians of the IMRB review and sharing the results if requested; and

_ recommend issues for policy, procedure, directive, or advisory development and implementation.

• The department's policy is to have the board send its reviews/ recommendations to the DMR commissioner within 30 days upon completion of the review, for the commissioner's approval or disapproval.
• Beginning early 2002, the IMRB is required to submit reports to the governor and legislature's public health committee identifying trends, results of analyses, and recommendations for system enhancements. The reports are to be submitted at least annually.
• The board is to meet at least quarterly to review cases.
• In addition to the cases sent to the board from regional mortality review committees, it must review at least 10 percent of cases closed at the regional level/STS. The board is to document such reviews.
• When either the IMRB or DMR commissioner determines corrective actions are required, the regional (or STS) director or the executive director of the affected private provider is responsible for developing a plan to implement those actions in a timely fashion. The plan may include, but is not limited to, the following:

_ professional education;

_ increased resources;

_ facility and equipment improvements;

_ new or revised policies or procedures;

_ corrective actions specific to the event, facility, or program; or

_ staff training or retraining.

• The board is to review implementation of all corrective plans or follow-up on recommendations put forth by the board, including results of any investigation done by other departments and/or agencies. The board is to document its review and any subsequent actions.
• The board is to provide feedback to regional mortality review committees regarding outcomes of its recommendations or corrective action plans.
• All IMRB and regional mortality review committee reports are confidential under state law. Any request for release of a report(s) must first be reviewed by the department's commissioner, health and clinical services director, and legal and government affairs director.
• The department's health and clinical services director is required to collect and analyze mortality statistics in each region and the Southbury Training School. Such information, in conjunction with the mortality reviews, may be reviewed by the IMRB to provide the basis for further quality assurance initiatives.

Fatality Review Board

• Executive Order 25 established a Fatality Review Board for Persons with Disabilities (FRBPD) in addition to the IMRB. The board is to investigate the circumstances surrounding untimely deaths that the OPA believes warrant a full and independent investigation.
• The OPA executive director can refer a particular case to the FRBPD before the IMRB completes its review to facilitate a timely investigation.
• The FRBPD is chaired by the OPA executive director, and includes the following members appointed by the governor:

_ one law enforcement professional with a background in forensic investigations;

_ one mental retardation professional;

_ the Chief State's Attorney or his designee;

_ two medical professionals; and

_ the DMR commissioner/designee serves as a non-voting liaison to the board.

• As of May 2002, OPA and DMR entered into an "information sharing" Memorandum of Understanding (MOU). The MOU outlines the following five areas the two agencies have agreed upon regarding the sharing of information surrounding untimely deaths of DMR clients.

_ DMR must make all documents collected, obtained, or maintained by the department in connection its mortality review process available for inspection and, upon request, copies must be provided to OPA for the purposes and activities of the fatality review board.

_ All DMR client records and any records obtained/maintained by the department for administering or monitoring the quality of DMR/contracted services provided by DMR/contractors, must be available to OPA for the purposes of the FRBPD.

_ DMR will cooperate with any investigation conducted by the fatality review board, including access to records and other information in accordance with state and federal law.

_ OPA and the fatality review board agree to maintain and provide access to records obtained for the purposes of the fatality review board in accordance with applicable state and federal laws.

_ OPA and the fatality review board agree to share findings made and records obtained by the board with the IMRB, consistent with the purposes and activities of the IMRB.

• As of November 2002, the fatality review board is compiling information for 121 DMR deaths referred to OPA since January 2002. A summary report will be developed by OPA and presented to the fatality review board at its November 2002 meeting. OPA has also received two death cases from DMR for the fatality review board to begin preliminary investigations regarding the deaths.

Root Cause Analysis

• In mid-2001, DMR initiated a practice called "root cause analysis." Root cause analysis is used in special circumstances for the purpose of "eliminating or reducing risk of future unusual incidents that could result in the untimely death or serious injury to a DMR client." It is a formal analytic process designed to help identify underlying factors that have contributed to or have directly caused a major adverse event or systems failure. The goal of root cause analysis is a full and complete discovery of the factors surrounding an untimely death or serious injury. The process is conducted by the DMR central office.
• Root cause analysis follows a prescribed process and is always conducted by a team of individuals familiar with the incident under review, departmental policy, and program requirements, and the root cause analysis process itself. The results are typically used to guide and direct changes to processes, the environment, and human behavior with the goal of preventing or reducing future adverse events.
• OPA also receives a copy of the root cause analysis report and DMR implementation plan within 30 days of the DMR executive management team review.
• A written summary of the report must be posted on the DMR website for a minimum of 90 days.
• The root cause analysis process is not designed to replace traditional review and investigation procedures or existing mortality review processes. Any formal reports resulting for the root cause analysis process will protect the privacy rights of individuals and will not disclose client, family, guardian, or staff names, or any other identifying information.
• DMR has conducted four root cause analyses of deaths to date.