A Christmas Carol About Patient Consent Requirements

Cathy Betz
Written by Cathy Betz
on December 22, 2010

Charles Dickens’ A Christmas Carol is the story of sour and stingy Ebenezer Scrooge’s ideological, ethical, and emotional transformation after the supernatural visitations of his former business partner Jacob Marley and the Ghosts of Christmases Past, Present, and Yet to Come.

It’s the third spirit, the Ghost of Christmas Yet To Come, that interests me the most. The Ghost harrows Scrooge with dire visions of the future if he does not learn and act upon what he has witnessed. Scrooge’s own neglected and untended grave is revealed, prompting the miser to vow to change his ways in hopes of changing these “shadows of what may be.”

The same can be said about the notion floating around Washington to require patient consent as a condition for treatment, for payment of health care services, or for undertaking important operational activities. The “shadows of what may be” from this ill-advised idea are potentially dangerous to patients and to the health care system.

A “Scrooge” of an idea
Giving patients the responsibility to decide which portions of their medical records should be open to health care professionals is, at best, unreasonable, and, at worst, potentially deadly. It is highly unlikely that a patient without a medical background can make a sound decision on what information a physician might need to provide quality treatment. If a patient chooses to withhold information, and is subsequently negatively affected (i.e., experiences an adverse medical interaction or other complication), not only is the health of the patient compromised, but otherwise avoidable costs to the system are incurred.

Requiring providers to obtain consent for each use of patients’ information would seriously delay and disrupt the care of patients. Elderly patients would not be able to send a relative to a pharmacy to pick up a prescription without first going to the pharmacy to sign consent forms; pharmacies would not be able to fill prescriptions for patients phoned in by physicians; and emergency medical personnel could be forced to get consent forms signed before treating patients.

A consent requirement could also impact consumers’ relationships with their doctors, hospitals, insurers, and with the government. If patients do not fully trust the system, they may engage in what has been called “privacy protective” behaviors, the risks of which can be serious or even deadly. Such behaviors may include withholding information from a clinician; paying out-of-pocket for services that would otherwise be covered by their insurance; asking doctors to lie on official forms about their diagnosis; lying to providers; switching clinicians frequently to ensure that all of their information is not held in one place; and avoiding care altogether.

Bah Humbug
Good healthcare depends on good information. Putting the onus on the patient to consent to have her health information shared for treatment is impractical and potentially dangerous. And, if patients engage in privacy-protective behaviors, their care may suffer, clinicians’ ability to diagnose and treat a condition may be impaired, and research and public health goals may be undermined.

We need to preserve the vital flow of information that protects, extends and saves lives. Providers need to be able to trust that the data contained in their patient’s health record is accurate and complete. Similarly, patients need to be able to trust that they are receiving the right care at the right time.

The exclamation “Bah! Humbug!” entered the English language thanks to Dickens. It’s an apt response to efforts to require patient consent as a condition for treatment, for payment of health care services, or for undertaking important health care operational activities.


There have been made comments on this article

  1. John Barker on at

    This blog post makes immense sense. One question which remains for me is a result of Wikileaks. Many government diplomats engaged in highly confidential discussions with the assurance that their communications would be confidential. Many of those diplomats would not have shared confidential observations and comments without that confidentiality. How can we ensure the privacy of medical records? This assurance of privacy seems to me an essential component of getting agreement by patients to disclose medical facts to physicians with an expectation of privacy, just as diplomats will need to be “sold” a new expectation of privacy when communicating with US diplomats.

  2. Cathy Betz on at

    I agree, John. Despite the recent WikiLeaks drama, American consumers have demonstrated that they are willing to trust systems, including technology-based systems, if they believe that reasonable steps are taken to use their personal information judiciously and if the benefit to using such systems is clear. Clear examples exist in banking, in which Americans engage in online transactions, deposit and withdraw money from automated teller machines (ATMs), and allow their paychecks to be deposited directly into their accounts. Health care providers and other stakeholders must prove their worth by demonstrating utmost respect to privacy and security and by articulating the value proposition (i.e., the quality case for why patients benefit from having their medical information stored on an EHR). If they do, then privacy ceases to act as a barrier to adoption of EHRs and in fact enables it—because consumers trust it and look forward to a tangible benefit. The security of these systems becomes assumed and therefore a non-issue. Trust is key, like you said. I will continue this topic in my next post – stay tuned!

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