[UPDATE: It was brought to our attention that a bill was filed earlier this year by state Rep. Carolyn Dykema of Holliston that would require that physicians, nurses, dentists, and other healthcare professionals receive training in treating persons with intellectual and developmental disabilities.
The bill (H. 1932) would also require the state to promulgate regulations to reduce disparities and discrimination in medical care provided to developmentally disabled persons. The bill was referred last January to the Public Health Committee, which included the measure in a list of bills that were given a public hearing earlier today (Tuesday).]
A report provided to us by the state Department of Public Health exonerates Lowell General Hospital in the case of an an intellectually disabled man who died of an apparent heart attack in 2012 after having been sent home twice by the hospital without any significant treatment.
The DPH report confirms that the 51-year-old patient was discharged twice from the hospital in two days, and was pronounced dead after he was brought back to the hospital for the third time.
Despite the exoneration, the report appears to leave many questions about this case unanswered — particularly whether the man, whose identity is being withheld, may have received inadequate care because hospital staff was not properly trained in dealing with developmentally disabled people.
We obtained the latest version of the report after filing two appeals to the state public records supervisor. The DPH first denied our request for the report entirely, citing the deceased man’s privacy; but the department later provided an initial version of the report after the records supervisor ordered it to do so in April. That initial version was so heavily redacted, however, that it was virtually unreadable.
In a ruling on September 21, the public records supervisor ordered the DPH to produce a less redacted version of the report. We have received that version, which is more readable than the first version the department provided. Still, every reference in the latest version to the resident’s physical condition when he was brought on the two occasions to the hospital emergency room remains redacted.
The report concludes that an allegation made by an unidentified person — that the hospital was “ill-equipped” to treat an intellectually disabled individual — was not valid. In fact, the term for the man’s disability is redacted in the report, but we are assuming the allegation against the hospital was in reference to the fact that the man was intellectually disabled.
The report concludes that “appropriate care was rendered” and that discharge plans were appropriate and communicated to a staff member of the patient’s group home. There are no recommendations in the report.
The report states that the investigation of the incident was done over a two-day period in March 2012. The investigator or investigators interviewed the unnamed complainant, three nurses, three emergency department physicians, the hospital’s vice president of patient care, and the director of risk management. In addition, the DPH reviewed the resident’s medical records, hospital procedures, the emergency department physician schedule, and the hospital’s personnel and credentials files.
While it may appear at first glance that the DPH investigation was exhaustive, we think a case can be made that the review was really somewhat cursory. It’s hard for us to accept that the hospital did everything right in this case and that no recommendations regarding hospital policies or procedures were warranted, given that the man was not treated by the hospital in any significant way, and the outcome was his death.
To be fair, the report does state that a survey of the hospital was conducted under the authorization of the federal Centers for Medicare and Medicaid Services, and that no deficiencies were found. The report doesn’t indicate when the survey was done. We assume that this was a separate licensure survey that the DPH periodically conducts of all hospitals in the state.
In this case, the man’s day program and group home staff were concerned enough on three separate occasions that they called 911 and had the man sent to the hospital emergency room. According to the DPH report, the emergency room staff did perform diagnostic testing and took the patient’s vital signs during the visits. During the second visit, a nurse also called the group home to ask for more information. All references to the results of the diagnostic tests and all references to the man’s vital signs are redacted in the report.
One troubling issue noted in the report is that it appears that a physician examined the patient when he was brought to the emergency room for the first time. But it appears that the man was discharged after the second visit to the hospital by a nurse. There is no indication that he was examined by a physician during the second visit.
We think the report failed to substantively examine the specific allegation that was made in this case. This may reflect the fact that neither the health care nor oversight systems in Massachusetts or around the country seem to be very concerned about an apparent lack of adequate medical care provided to people with disabilities.
For instance it doesn’t appear that there are any federal regulations that specifically address the treatment of people with intellectual or other disabilities in acute care hospitals. We couldn’t find any references to disabled patients in federal or state regulations governing licensure of acute care hospitals.
In its report on this case, the DPH cited three federal regulations governing hospital care, none of which appears to address the issue of patients with disabilities. The federal regulations cited in the report require hospitals to have an “organized medical staff”; state that the patient has a right to receive care in a “safe setting”; and state that emergency department policies and procedures are “a continuing responsibility of the medical staff.” (42 CFR 482)
It’s not clear whether Lowell General Hospital has any policies for treating people with developmental disabilities. Based on studies we have reviewed, the lack of such policies and procedures is a serious problem in hospitals in this and other countries.
One study by BMC Health Services Research concluded that people with intellectual disabilities “are at risk of poor hospital experiences and outcomes.” That study, which involved a review of papers written on the subject, noted that hospital patients with intellectual disabilities had a higher percentage of avoidable deaths than non-disabled patients due to misdiagnoses of their conditions (37 percent versus 13 percent).
A second study done for a group of disability advocates in California found that the inability to communicate their symptoms was a key reason that people with intellectual disabilities receive poorer treatment in hospitals than do non-disabled people. The study noted that those individuals are “commonly unable to identify pain, describe symptoms of illness, or articulate indicators of discomfort to physicians.”
It seems likely that the resident in the Lowell General Hospital case was nonverbal, although a statement in the report that appears to imply that the patient was nonverbal was partially redacted.
The California study, which was based on interviews with providers and advocates, added that in a “typical example,” one nonprofit executive reported that the provider had sent one of their group home clients to a hospital and the hospital sent him back home. A couple of days later, the executive stated, “we found out he has a broken leg.”
In a report on health care for people with disabilities, the National Council on Disability stated that most medical schools do not include “disability competency” as a core curriculum requirement, and disability competency isn’t generally required in obtaining a medical or professional healthcare license.
The NCD report added that in a survey of Connecticut physicians, 91 percent said they had received no training in intellectual and developmental disabilities. The report also stated that health care providers frequently conduct examinations or diagnostic tests while disabled patients are seated in their wheelchairs, which can generate inaccurate test results or “conceal physical evidence required for appropriate diagnosis and treatment.”
Finally, the NCD study stated that:
For many people with disabilities, poor communication with providers and limited time for office visits reduces the quality of care they receive and may impede diagnosis of new health conditions and prolong or leave untreated chronic health problems. (my emphasis)
We are not saying any of the issues raised in these studies was necessarily a reason or cause of the former resident’s death in the Lowell General Hospital case. But given that the DPH report doesn’t appear to address those issues in any way, we think that question remains unanswered.