Empower Patients

Chief Cause of Patient Rights Violations: The Fragmentation of Health Care Delivery

What can we learn from the National Institute for Patient Rights survey of the top ten violations of patient rights? What's the take away?

We learned that, despite billions spent on advanced medical technologies such as drugs and devices, patients daily experience an erosion of their most fundamental rights. The rights of patient self-determination and informed consent seem to suffer most.

We also learned that, the number one cause of this gross and widespread violation of patient rights is fragmentation in healthcare delivery, or a lack of coordination among specialists in patient care.

Fragmentation leads to a breakdown in communication among specialists and between the "team" and patients/families, resulting in unnecessary conflict, patient rights violations, and, ultimately, medical error.

No one on the "team" seems willing to speak up on behalf of the whole patient, so patients and their families are left alone struggling to integrate their own care by piecing together bits of information from specialists in an attempt to get a complete picture of what's happening to their loved one.

So many people who took part in the survey complained about the inadequacy of multiple diagnoses coming from multiple providers. Without a single, complete diagnosis, respondents felt unable to make an informed choice about appropriate treatment options.

This is simply reprehensible from an ethical point of view!

What's the chief cause of this state for affairs? One word: economics.

In this country, we reimburse doctors based on the number of procedures they perform. Quite simply, doctors compete for finite reimbursement dollars. Specialists multiply on a particular case based on referral, and no one wants to interfere with the other's ability to make money.

However, even if we managed to some how eliminate the politics and economics from the delivery of care at the bedside, we would still be stuck with the consequences of component management, with a doctor for every organ.

Paradoxically, the widespread violation of patient rights in hospital-based care may be a direct consequence of the success of medicine, specifically of the application of science to medicine.

The scientific method lends itself to reductionism with researchers analyzing smaller and smaller parts. Likewise in the application of science to medicine, doctors become specialists, who confine their focus to individual organs; subspecialists focus even more narrowly on the parts of organs.

Under component management, doctors have become just so many research scientists.

Component management in turn lends itself to episodic intervention. The breakdown in communications due to a lack of coordination causes anger and frustration among patients and their families.

In addition, a failure to communicate causes unnecessary conflict. It also causes significant harm when patients suffer underuse, overuse, or misuse as a result of medical error.

It seems that, unless and until hospitals and their health care professionals adjust to the success of science in medicine, patients and their families are likely to continue to experience one or more of the top ten violations of patient rights.

The Violation of the Patient Right to Review Medical Records under HIPAA

Coming in at a close #10 in the National Institute for Patient Rights survey was the violation of the patient right to review their medical records and receive an accounting of disclosures regarding health information under HIPAA.

Many participants observed that they have moved frequently during their life times. Consequently, they have received medical care from various providers over time. Each provider keeps his or her records detailing visits and treatments. The same is true for hospitals, clinics, laboratories, pharmacies, and so on. One participant noted, “Like most people, I’ve moved around quite a bit. Over time, it’s easy to forget when you were treated, by whom and even for what!”

Respondents noted such problems as the wide variation among providers in the amount of time they retained records, paper records were misfiled or even destroyed, electronic records were lost, stolen, damaged or vulnerable to unauthorized access, and physicians sold their practices. Stated a respondent, “I was made to feel intimated in asking one of my doctors for a copy of my medical records. He acted like my medical record was his property and his only.”