I’m sharing some thoughts after listening to an NPR Morning Edition story from Maxwell David Howard on HIPAA protects patient privacy, but some say it shuts out caregivers. This was an excellent story with good research, and I’m grateful that it was shared.
For context, I have an adult son with mental illness who is homeless, so much of the report resonated with me. It’s worth noting that my son is not a reliable source of information for his own medical history.
Here are a few observations:
- Hospital Facilities don’t share information in local networks
In four months, my son used emergency room visits that resulted in referrals to mental health hospitals.- None of the receiving hospitals had access to any continuity of care for my son. They didn’t know what medication had been used in prior visits.
- They didn’t know if he had any medications in his system before treating him, and
- They didn’t inquire to see if he had any history of hospitalization in the the local area so that they could coordinate services.
- Case Workers and Care Givers have the same problem of zero notification
If my son is receiving treatment elsewhere and/or has a case worker assigned, that person is typically not aware of any out-of-network activity. That means that hospitalizations for medical or mental treatment are unknown. It also means that violations, arrests, jailing, or court appointments are “unknowns” with particular impact to the protected individual, who is neither represented, cared for, or defended at critical times. - Hospitals use the “we can neither confirm nor deny” about patient admittance
This is particularly aggravating. When I know that my son is admitted, I typically cannot see or speak to him because they won’t do so without a prior authorization from my son. I have called simply to provide them information, or to ask them to query my son for his approval. However they don’t want to even relay a message to the staff or to my son because that would be stating he was a patient. I typically have to say something along the line of “I know he’s there and I know you can’t confirm or deny that. What I’m asking you to do is take my message, and if you can route it to him, or to his treatment team, to do so. I don’t need you to respond one way or another, but I’m requesting you to take an action that will benefit a patient in your facility without acknowledgement otherwise“ - I obtained legal guardianship of my son, and it’s still difficult to talk with care providers
One of the main reasons that I sought limited guardianship was so that I could communicate with health providers, and assist in coordinating care. This does not mean I am notified at any time when he is admitted for treatment, so there is still a discovery process. Often times there is a delay while I provide paperwork/evidence of the guardianship, and I still receive pushback about what I can and cannot do based on interpretations of the limited guardianship. - Status of a Protected Individual should be a flag for hospitals to seek Care Coordination
I don’t want there to be a “list” of protected individuals, and this scares me. I really don’t like that, at all… but there can be processes in place for treatment providers to create routine prompts with patients to determine if there is someone they should be talking to. This is complicated but needs to be discussed further.
There needs to be some separation about communication with caregivers, coordination of care, and decision-making ability on behalf of a protected individual. I am aware that this makes things more complicated, generally – and I’m also aware that risk-averse companies seek to protect themselves from possible violations of HIPAA law when processing privacy-related information. But the HIPAA laws are actually making treatment worse in some cases, and that needs to be addressed.