Patient Protectors

When staffing shortages impact patient care, advocates look out for patients’ best interests, says former nurse and current patient advocate Teri Dreher.

Caregiving Magazine is committed to publishing a diversity of opinions. The opinions expressed in this guest essay are the author’s own.

A son in California called me last month to help his Chicago-area parents. Both in their 70s, they had recently been admitted to a Chicago-area hospital with Covid-19. The husband spent two days in the hospital, then was transferred to a skilled nursing facility that had deteriorated in quality over the past few years. He was desperate to get out.

Trouble was, his wife was still in the hospital, isolated, and suffering from Covid complications. She was losing weight rapidly and being forced to stay in bed due to low staffing at the hospital.

The nursing shortage in hospitals all over is severe, especially due to Covid. Many experienced nurses are retiring or leaving to take travel jobs where they can make significantly more than what hospitals pay their staff nurses. And who can blame them? Still, this worsens the problem for hospital administrations and patients alike, as my client will testify.

My frail client was frightened, anxious, and confused, feeling as if she was a prisoner at the mercy of nurses and aides. Call lights would go unanswered for 30 minutes or more. She was forced to stay in diapers and didn’t receive help with any basic personal hygiene, such as bathing or brushing her teeth for 10 days. Her anxiety level was rising, and sleep deprivation from the stress was making everything worse. She begged me not to report rude staff, fearing retribution as she was at their mercy for her basic needs.

The things I saw — including nurses chastising my patient for disturbing their coffee break — made my heart break for how hospital nursing has declined in quality over the past few years. We were ultimately able to get this dear couple transferred into a quality rehab facility, but it will take time for them to recover mentally and emotionally from the ordeal.

Two of the things that disturbed me the most about this particular scenario are things I have seen dozens of times: blatant violations of patients’ rights regarding access to records, and the failure of the staff to treat patients with dignity and respect.

In its own Bill of Patients Rights, the American Hospital Association goes to great lengths to state that patients have the right to review their medical records and to have those records explained. What the Bill of Rights does not contain, however, is any mention of the patient’s right to name a personal representative. The U.S. Department of Health and Human Services states that a legally designated patient representative “stands in the shoes” of the patient when the patient is unable to advocate for themselves, or by their choice on their behalf.

A personal representative can be named in two ways. Typically, an individual can give a spouse, family member or trusted associate power of attorney (POA) for healthcare, which is recognized under both federal and state statutes. The POA for healthcare comes into force when the patient is unable to make or communicate their preferences for care.

In Illinois, a form is available on the Department of Public Health website that lets a person name a personal representative pursuant to HIPAA (the Health Insurance Privacy and Portability Act). In other words, the patient may still be able to communicate, but they are designating an advocate.

When I showed up to visit my client and presented my HIPAA form, I was told that it is hospital policy to not allow visitors to the unit unless they are family and pre-approved. I explained, patiently, that not only was I a legally designated patient representative, I was also the backup POA for healthcare. I presented that documentation and asked to see my client’s records. After being stonewalled, I called the hospital administrator, who never answered.

Eventually the hospital chaplain came down, presumably to calm me down, and I explained that according to the federal 21st Century CURES Act, the patient is the true owner of their health information, wherever and however (paper or electronic) it happens to be stored. Access is to be without delay and without charge.

To violate the CURES Act opens hospitals up to fines and lawsuits, as the act is enforced by the HSS Office of Civil Rights.

In addition, my patient had a pre-existing diagnosis of anxiety, amplified due to the isolation and poor quality care she was receiving. In addition to the other patients’ rights laws, in May 2020, Governor Pritzker worked with the Illinois Department of Human Services to clarify that patients who are cognitively or emotionally impaired have the right to a support person, such as myself, during their time in the hospital.

Even after being allowed to see my client and present legal documentation, the nurses on the unit cited HIPAA when I asked for her lab reports, doctor’s progress notes, and medication list. The fact that hospital personnel do not seem to understand HIPAA is baffling.

HIPAA was implemented to protect private patient information from being shared with people who have no business knowing that information. It was never intended to prevent health-care providers from sharing information with a patient advocate or other personal representative in order to achieve a more coordinated, quality transition of care. A simple signed statement by the patient to release information is usually insufficient, but the form we use in Illinois via the Department of Public Health meets HIPAA requirements.

From my experience, one of the biggest causes of medical adverse outcomes is the lack of communication and information. I find that when I accompany a client to a hospital emergency room and present my client’s medical info, staff are generally grateful and appreciative as it makes their job easier and saves time and needless error.

Don’t get me wrong here. I don’t mean to be antagonistic toward hospital clinicians. My heart breaks for what nurses and physicians are going through these days, with the lingering pandemic, chronic understaffing, and often clueless hospital administrations. I tell everyone to be kind and patient with staff. It is not their fault; they are doing their best working in war zones these days.

I worked for 39 years in intensive care units. I left in 2011 because I could see some of the challenges patients were going to have and knew they would need help navigating the system.

But I am also outraged at the decline in care that so many patients share with me. I just want to see the day when hospital staff have adequate time and attention for each patient, respect patients’ rights, abide by the laws regarding medical records, and work with private advocates like me to help heal both the patient and a very broken system.

Teri Dreher, RN, is a former intensive care nurse with 39 years of experience. Founder of NShore Patient Advocates in Chicago, she currently serves as a patient advocate, and is author of Patient Advocacy Matters. Visit for more information.

1 Comment

  • […] or a very large practice, there’s no guarantee that doctors can give the information to patients in the order that they want. “These conversations are hard because there’s no way you can cover every possibility,” […]

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