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Perspective: Do you have real rights? Not when seeking health care

Perspective: Do you have real rights? Not when seeking health care

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Many Americans have suffered and died because of a broken health care delivery system. Until genuine rights are extended to all patients, such tragedies will continue.

For many of us, the struggle is personal. One of us lost a 19-year-old son due to lack of certain patient rights — specifically the right to evidence-based medicine and the right to a complete discharge plan from his hospital. His cardiologists failed to replace potassium as required by an evidence-based guideline for patients with low serum potassium and cardiac arrhythmias. He had collapsed while running, and his cardiologists knew he should not return to running. However, they failed to communicate to him, through a complete discharge plan, not to resume running for fear of sudden cardiac death. The only warning he was given was to not drive for 24 hours. Having mistakenly received a “clean bill of health” during his follow-up visit five days later, he returned to running and died while running two weeks later. If this young man had been granted his genuine rights as a patient, he would be alive today.

Recent studies have shown that the loss of American lives from harm during hospitalization runs into the hundreds of thousands each year. Medical errors are the third-leading cause of death. Most of these adverse events will be preventable when a clear set of rights is established, known by patients and providers, and enforced by federal authorities. Preventing these adverse events is not a matter of “cracking down” on malpractice or punishing honest mistakes, but about restoring mutual trust and respect between doctors and patients. Too often, patients are told what to do without having a true discussion with their clinician about the decision, or even realizing that they have a choice in the matter.

Lack of informed consent for heart patients is one example. Patients have the right to an equal say in their health care decisions, with all the necessary information available to them. We need to open up honest decision-making conversations between doctors and patients by establishing these rights as a routine and sacred aspect of medical care.

The Centers for Medicare and Medicaid Services (CMS) has outlined patient rights that hospitals must legally uphold in order to receive payment for Medicare beneficiaries. However, these rights are not enough to guarantee shared-decision making. They don’t include the right to evidence-based care and to view decision aids designed to inform patients of their choices, the right to know if a drug or device is used off-label (not approved by the Food and Drug Administration, and therefore more dangerous), the right to know specifically who will administer and supervise any invasive procedure, the right to be offered access to medical records and make entries, the right to refuse or stop care at any point, the right to a complete discharge plan, and the right to fully participate in root-cause analysis when a patient is harmed.

Since January of this year, we have attempted to persuade officials at the CMS to upgrade their patient rights to include those detailed above. Despite support from many physicians, nurses, and patient advocates, CMS officials have refused to consider our request — even though we have supported each right with studies showing the value of each right in terms of safer care or a reduction in the cost of care. For example, it is well known that following medical guidelines leads to safer, more affordable care in patients with low back pain. Patients who participate in shared decision making are happier with their care, and this often leads to less invasive and less expensive care, for example, in patients considering joint replacement.

CMS has declared a goal of “strengthening beneficiary engagement to help transform our health care system into one that delivers better care, smarter spending, healthier people, and puts individuals at the center.” We believe it’s time that CMS follows through with their promise of patient-centered care by implementing and enforcing meaningful patient rights. The time for transparency and shared-decision making is now.

Both authors are members of Right Care Alliance, a grassroots movement of clinicians, patients and community members seeking to make health care institutions more accountable to their communities and patients.

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