COFAR blog

The Department of Public Health has completed an investigation of the case of a developmentally disabled man who died en route to Lowell General Hospital in February 2012 after having been turned away from the hospital twice without any significant treatment.

We may never know, however, what the result of the investigation is.  The Department, citing the deceased man’s privacy rights, won’t release the report.

We are appealing this denial to the state’s Public Records Division, arguing that the potential public interest in knowing what happened in this case outweighs the privacy rights of a deceased individual.  Our view is that the real potential wrong to this person was done when he was denied treatment by the hospital.  The public, we think, deserves to know what happened here and so do persons with developmental disabilities and their families and guardians.

This case suggests possible inadequate training of health care personnel in the treatment of developmentally disabled persons, which is an issue of concern to advocates for the disabled and to many policymakers.

The National Council on Disability, with which we have had our disagreements, maintains that:

The absence of professional training…for health care practitioners is one of the most significant barriers preventing people with disabilities from receiving appropriate and effective health care.

The man was a former resident of the Fernald Developmental Center.  He had been living in a group home in Chelmsford and was attending a day program in Lowell on the morning of February 6, 2012, when the staff at the day program made the first call to 911 to take him to the hospital.  He had reportedly been having difficulty breathing and was sweating profusely. The hospital released the man shortly after his arrival, however, and sent him back to his group home, according to sources.

By about 8 a.m. the following morning,  the man was slumped over in his wheelchair and sweating heavily, a source said.  A group home staff member called 911 shortly afterward.

A Disabled Persons Protection Commission (DPPC) complaint form stated that the man was observed at the hospital on the morning of February 7 to be sweating profusely, but his vital signs were good when he arrived.  According to the complaint form, the man was sent home with a prescription (the name of which was redacted).  According to sources, this was the second time he had been sent away by the hospital.

The DPPC complaint form stated that shortly after arriving back at the group home, the man began to vomit and then lost consciousness, and that the staff began mouth-to-mouth CPR until paramedics arrived.  The group home received a call from the hospital later that afternoon that the man had died.

Because the man’s death appeared to have been connected with his treatment or lack of treatment by the hospital, the DPPC referred the case to the Department of Public Health for investigation.

Did the apparent failure of Lowell General Hospital to properly diagnose this man’s illness and provide him with adequate treatment result from a lack of training in disability issues?  Did the Public Health Department consider that question in their investigation of this case?  Unless the Department releases its report, we will never know the answers to those questions.

While the Public Health Department’s position is that a state law [(M.G.L. c. 66A, s. 2(k)] prohibits them from releasing medical information about an individual, even if that person is deceased, we are not in agreement with their interpretation.

First, there do not appear to be consistent policies among state agencies in releasing investigative reports on deaths of developmentally disabled persons.  The Disabled Persons Protection Commission (DPPC) has released a number of these reports to us after redacting what they considered to be identifying information.

Secondly, while we have blogged about this case, we have never used the name of the individual involved or tried to publicly identify him.  A Department of Public Health attorney wrote to us, though, that even if we did not use the individual’s name in a blog post about the investigative report, “it is possible for someone to utilize the information that is available (age and date of death) and potentially come up with the patient’s name.”   While that is possible, we do not understand why anyone would do that in this case.  It seems farfetched.

Third, even if it were true that someone might reveal the identity of the individual involved, there appears to be case law that limits privacy rights of deceased individuals.  A Hofstra Law Review article notes that “while postmortem medical confidentiality exists, it is much narrower than the privacy protections guaranteed to the living.”  In Massachusetts, case law involving privacy rights after death does not appear to have been settled.  (See Ajemian v. Yahoo!, Inc.)

Finally, the privacy statute cited by the Public Health Department [(M.G.L. c. 66A, s. 2(k)] states only that the Department must:

maintain procedures to ensure that no personal data are made available in response to a demand for data made by means of compulsory legal process, unless the data subject has been notified of such demand in reasonable time that he may seek to have the process quashed.

This seems to imply that the person involved has to be living. And, as attorney Steve Sheehy notes in a comment to this post below, at most this statute would require notice to the deceased person’s executor or representative.

Prior to filing our appeal, I asked the Public Health Department attorney whether it might be possible to provide us with a copy of the investigative report with explicit personal data or medical information redacted.  As I noted, our interest is whether the Department has investigated or commented on the hospital’s procedures for training staff to treat persons with developmental disabilities.

To the extent that the Department’s report addresses hospital policies and procedures in this case, it would probably not be necessarily for us to know specific medical details about this individual.  To date, I have not received an answer from the Department to my query.

Unfortunately, this is not an isolated case of apparent institutional secrecy.  When it comes to deciding whether to make public reports of potential mismanagement by human services or health care facilities, the natural instinct of public managers and administrators seems to be to keep it all secret and cite privacy rights as the reason.  That has certainly been the practice at the DPPC, but at least, as noted, the DPPC has released redacted reports.

We hope the Public Records Division, which is part of the office of Secretary of the Commonwealth Bill Galvin, will make the right decision and order the Public Health Department to make known the results of its investigation of this troubling Lowell General Hospital case.