If you are hospitalized for a cardiac condition, your experience matters to the staff. But if you’re hospitalized for a mental health condition – your experience doesn’t count at all.
This guest essay is drawn from a new series of blog posts from Mental Health America, a community-based nonprofit dedicated to addressing the needs of those living with mental illness. The introduction to the series can be found here.
If you have ever been in a general hospital, you have probably received a survey asking you about your experience. Hospitals are required to administer the Hospital Consumer Assessment of Healthcare Providers and Systems survey (HCAHPS) to anyone who spends at least one night in the hospital. The results of the survey determine a percentage of Medicare payments and are reported on the hospital compare website, so hospitals are very incentivized to score high on these surveys.
However, there are two groups of patients who are excluded from taking the HCAHPS survey – those who are dead, and those who have a primary behavioral health diagnosis.
Now, it is obvious why dead patients are exempt from taking the survey. But why are people who have panic attacks or attempt suicide completely excluded? The federal Agency of Healthcare Quality (AHRQ) developed the HCAHPS survey and all they were able to tell us was that it was not tested on people with mental health conditions, which just means that discrimination against people living with mental health conditions started when the survey was first piloted in 2003 and continues nearly two decades later.
The HCAHPS only applies to general hospitals. Specialized psychiatric hospitals are not required to do a patient experience survey for any patients and they are certainly not held accountable through payment or transparent reporting.
This means that if you are hospitalized for a cardiac condition or a stroke, your experience matters very much to the hospital staff treating you. But if you are hospitalized for a mental health condition, in a general or psychiatric hospital, your experience does not count. You don’t have to be familiar with the reams of literature and caselaw on horrific psychiatric hospital conditions to know that this is problematic and people with mental health conditions have suffered some of the worst experiences of any patient group.
When the National Alliance on Mental Illness (NAMI) sent out a survey on emergency room hospital care, over a thousand people responded, and two in five said their experience was bad or very bad with the majority of the rest saying it was both good and bad. NAMI and Mental Health America, where I work, have sent out alerts, and people with mental health conditions and their families have filed hundreds of comments over several years with the Centers of Medicare and Medicaid Services (CMS) and AHRQ asking them to fix this overt discrimination and remove the exclusion of people with mental health conditions, to no avail.
It is important to understand the questions asked by the HCAHPS. The survey asks questions in the following areas:
1) How often did nurses communicate well with patients?
2) How often did doctors communicate well with patients?
3) How often did patients receive help quickly from hospital staff?
4) How often did staff explain about medicines before giving them to patients?
5) How often were the patients’ rooms and bathrooms kept clean?
6) How often was the area around patients’ rooms kept quiet at night?
7) Were patients given information about what to do during their recovery at home?
8) How well did patients understand the type of care they would need after leaving the hospital?
9) How do patients rate the hospital?
10) Would patients recommend the hospital to friends and family?
We in the mental health advocacy community do not see anything in those questions that are inapplicable or problematic when asked of people with mental health conditions. The community has asked AHRQ and CMS to start asking these general questions of everyone and then continue testing to determine if additional questions or different methods of administering the survey would be helpful. This would allow cross-hospital comparisons between psychiatric and general hospitals for mental health care and comparisons between the experience of those with mental and physical health conditions in general hospitals.
One of the express goals of creating the HCAHPS was to allow objective and meaningful ways of comparing hospitals on items that are important to people. Data also could identify disparities in experiences by race, ethnicity, and other demographics.
I can hear the agencies, hospitals, and private equity firms that own hospitals saying, “It’s too complicated and needs additional study.” But changes can be made now with additional study coming later. This survey asks general questions about care that are applicable to everyone. Yet one group of people who are particularly vulnerable to bad experiences are excluded.
The federal government has complete authority to fix the problem and they have not done so. Indeed, there has been no evidence that AHRQ and CMS are coordinating and intend to fix the problem in a timely way. The last regulation issued on 2023 psychiatric hospital quality measures did not propose or change any of the reporting measures on patient experience despite acknowledging the many comments submitted by individuals and families and gave no information about when they would change them.
Hospital services are not the only services lacking patient experience data. For example, to date, the new 988 crisis call system lacks a systematic, transparent, patient experience measure that will be applied to all call centers and all parts of the crisis system. Patient experience should be at the foundation of all mental health care – inpatient and outpatient – and should be measured using standardized instruments by everyone delivering it. That includes hospitals, mental health centers, health centers, crisis call centers, mobile teams, and more.
If the Department of Health and Human Services (HHS) agencies required transparent patient experience measures for inpatient and outpatient behavioral health care and tied them to payment, we would see a radical change in the way care is delivered. Hospitals and other providers would be incentivized to learn from and implement quality improvement efforts based on the voices of people receiving services, to hire more people with lived experience as staff, and to change practices that currently dehumanize and traumatize people receiving mental health services.
This would begin to align market forces so people would have information to guide their choices and providers would be fiscally incentivized to improve quality. Linking patient experience to payment and facilitating transparent comparison of facilities is designing for success. Excluding people with mental health conditions from patient surveys or not asking about patient experience at all is designing to fail.
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