The most fundamental goals of Harm Reduction and Buprenorphine Programs are to keep people alive and safe. Despite the best efforts of a very dedicated SUD workforce, over 107,000 people died of overdose deaths in 2023. Behind every overdose death is a family or friends in mourning. Often, they are left with questions and are searching for answers. As harm reduction professionals, we want to assist grieving families in finding the answers they need, but we must maintain the privacy of those we have served. It is a painful and confusing moment when a professional says to the family of an overdose victim, “I can’t speak to you because of HIPAA.” This is of no comfort to a family dealing with loss.
Having dealt with the families of overdose victims and seeing the hurt and anger at an inability to share information, the following steps were developed to help connect a family with the information they may need to understand what has happened and to find closure.
Begin with, “I am so sorry for your loss.” This may seem obvious, but anxiety and fear of saying the wrong thing often keep people from acknowledging the very painful reality.
Ask the family (or other person you may be speaking with) what they may know about your connection to the client. It is NOT a HIPAA violation to repeat what the person is already aware of. For example, if a family member says, “I know Joey went to your program,” you would not be disclosing anything the person was not aware of. As long as you don’t confirm or deny that the person was in your program, you are not committing a HIPAA violation.
If the person you are speaking with is unaware of why their family member was coming (perhaps they did not know of a substance or mental health problem), inquire about how they came to know about your program (was there an appointment in the phone of the deceased? A bill from your program? Someone told them they saw the person at your program?). Partial information leads to unresolved questions on the part of the family. While you cannot confirm or deny the person’s participation in treatment, it is NOT a HIPAA violation to share publicly available information, such as what your program’s mission is. This may help the person “connect the dots” as to what has happened. Our goal is to diminish distress on the part of those we serve and lead people to helpful information without disclosing specific health information, which is NOT a HIPAA violation.
It is always ok to share publicly available information, including the goals of your program or practice, even if the person was unaware of why “Joey” was coming to you. This is not a HIPAA violation because what programs and clinicians do is available to the public and is NOT protected health information.
Try to ascertain what the family already knows. In a recent conversation with the daughter of a client who was found deceased a few days earlier, the daughter stated, “I know he was on ‘films” (she was referring to the buprenorphine strips she found at her father’s house). When asked what “films” were, she didn’t know. The nurse she was talking to in the program asked her what was written on the package. She read, “b-u-p-r-e-n-o-r-p-h-i-n-e.” Now that it was clear that she knew he was on this medication, staff could explain what it was.
When asked a specific question about their family member’s adherence to their treatment, it is acceptable to answer the question in the form of standard operating procedure. For example, a family dealing with anger at the death of their son angrily asked our program if he had been attending sessions. He had not, but, as is standard operating procedure in a low threshold buprenorphine program, he was in regular phone contact with the staff. This would be an appropriate time to let the family know that there are HIPAA limits to what can be shared. However, it would be appropriate to say, “As a low threshold program, we are in regular contact with ALL our clients. If your son was in our program, then we would have had regular contact with him, even if he could not make it to the site.” In this particularly sad scenario, the family remained angry that the program had not drug-tested him. A meeting was set up with the compliance officer (who is also a lawyer), who explained the protocols of a low threshold program. They were assured that all protocols were followed.
In summary:
- Express sympathy about the loss
- Assess how much the family/contact person knows about your program, their loved one’s connection to your program, and how much they were told.
- You can tailor your explanation of how your program works to their specific questions by citing the relevant protocols. Without sharing the person’s specific health information, you can share that you and/or your program did everything that could be done.
It is important to remember that we serve not only our clients but their families and their communities. We must preserve our clients’ privacy, even after death, but we must also help those who loved them find closure.
Elaine M. Edelman, PhD, LCSW, CASAC-Adv., is a Professor of Practice in the Department of Sociology, Anthropology, and Social Work at Kansas State University.
Christopher Ste. Marie, JD, serves as the Associate Vice President of Compliance at Community Health Action of Staten Island (CHASI). For more information, email Elaine at eleh@verizon.net.
References
https://www.hhs.gov/hipaa/for-professionals/privacy/guidance/health-information-of-deceased-individuals/index.html, accessed 5/15/24
https://www.samhsa.gov/find-help/harm-reduction, accessed 5/15/24
