Policy Guidelines for Unexpected Deaths of Adults with Developmental Disabilities

Protocol

  1. Agency staff shall notify law enforcement as soon as possible upon a death of a consumer in a setting other than a hospital or licensed nursing facility. It may not be necessary if the consumer is receiving services through hospice care.
  2. The agency Fact-Finder shall be notified of the death within 24 hours
  3. .
  4. Agencies shall inform Maya Fairchild at (608) 242-6466, (the Abuse and Neglect Contact at Dane County Adult Community Services, Developmental Disabilities Unit) within 24 hours of any death, including unexpected deaths in a hospital or licensed nursing facility. A County Critical Incident Report (attached) must be filled out and submitted to her within 2 weeks. Maya Fairchild will notify the Department of Health Services Bureau of Long-Term Support of the death, (via phone call) and then mail the report to the Area Quality Project Specialist.

The Role of the Medical Examiner

Dr. Vincent Tranchida is the Medical Examiner (ME) for Dane County. The ME is appointed, not elected. His staff includes former Coroner and Deputy Coroners, now called the Director of Operations and Medicolegal Investigators (MLI). They do scene response and investigation. Dr. Tranchida does the majority of the autopsies for the county.

Each MLI does her/his own death investigations. They are trained to examine the consumer who has died, investigate the scene of death, review the records, and talk to staff and family. They decide what needs to happen after the death and may request an autopsy.

An MLI comes for an unexpected or unexplained death outside a medical facility. This could happen even if a consumer is under the care of Hospice. While a Hospice nurse can pronounce death, she/he would first evaluate the death, look at the remaining medications, check the deceased consumer for trauma or injuries, and review the existing record for documentation of prior injuries or trauma. If anything is amiss, the Hospice nurse must call an MLI.

If a death is suspicious, the police may become involved. The Medical Examiner’s Office and the police run simultaneous, independent death investigations. The ME is looking for the manner and cause of death, while the police are ruling out criminal activity.

What to do if someone dies in your care.

  • You may know for sure that a consumer has died if the body is cold and stiff in a warm environment.
  • If the death does not involve Hospice or is unexpected, call 911. EMTs or an MLI will be dispatched.
  • If the death is expected, call 911 and ask to have an MLI paged to return a phone call to you.

Once you are certain of a death, everything stops.

  • Do not move, rearrange, or clean the body. This is against the law.
  • If you are not sure if the consumer has died it is OK to turn the body over to check.
  • Do not clean or rearrange the environment. Leave medications and other things as they are.

Family member notification

  • Guardians and family must be notified as soon as possible. The consumer’s nurse or supported living program manager should notify the family.
  • When notifying guardians and family members, it may be helpful to explain the MLI process and that the scene is to be preserved, not altered due to the investigation.
  • While you are waiting for the EMTs or MLI to arrive, give yourself a moment to sit and gather yourself. You may feel that you in some way caused the death—that has seldom been the case.
  • As soon as the MLI arrives, tell him/her that your agency is contracted with Dane County Department of Human Services to provide support services to the consumer who has died. This is very important and will guide what the MLI does and how the death is investigated. All agency directors shall instruct their staff about this.
  • The MLI may check whether the protocols for the deceased person were followed, look at documentation, collect the medications, and call that person’s primary care provider. State statute dictates that the Medical Examiner can access all medical records of a deceased person.
  • You can expect that the MLI will collect unused prescription medications. The inventory and destruction of medications is part of the investigation and can give clues into the Cause and Manner of Death.
  • The MLI will ask you what lead up to the consumer’s current physical condition.
  • Please include any information you may have regarding recent falls or injuries.
  • If for some reason you have concerns about the way the person died, communicate this to the MLI or doctor right away.

Other death information

If a consumer has fallen and hit his/her head, you may see a lot of blood. The consumer may not have died due to loss of blood or a head injury.

Sudden Unexplained Death in Epilepsy (SUDEP) can sometimes be a cause of death. This could even occur in a consumer who has controlled seizures or who has never been known to have a seizure. The only way this can be ascertained is by the process of elimination. An autopsy can exclude other possible causes of death.

The majority of young people who die unexpectedly are autopsied unless there is a known condition.

The Medical Examiner takes into account the wishes of family members and religious beliefs but makes the final decision about the deceased person having an autopsy. This is true even if the person had a guardian and that person does not want an autopsy.

Sometimes the cause of death on a death certificate is listed as “mental retardation” because that condition has impacted or compromised other conditions.

Post-Death Debriefing

The county and state management team will convene a meeting with the key developmental disabilities agency staff members within a few weeks of an unexpected death of a consumer. The team’s debriefing will include: discussion of circumstances and events prior to death, review of any knowledge or insight learned from the experience, identification of possible trends and discussion of on-going resources and supports.

Staff who experience an individual’s death while they are working may experience trauma. The county encourages providers to develop procedures and protocols for supporting their staff through the grieving process and any trauma issues they may experience.

Grief Resources: