Getting Patients Out of the Dark

07/18/2014 02:49 pm ET Updated Sep 17, 2014

I attended the 2014 Summer Institute for Informed Patient Choice: The Legal and Ethical Implications of Keeping Patients in the Dark, held in Hanover, N.H. June 25-27 as a partner of Cambridge Management Group, a health care-sector consultancy.

I learned a lot. Here are some notes from that meeting. I'll be posting more.

Some points discussed:

* Don't confuse mere disclosure to patients of treatment options with informed consent.
* There may be lawsuits coming soon for over-diagnosis.
* Advanced directives by patients and families are too often ignored.
* Physicians are too often disinclined to acknowledge uncertainty about outcomes to patients.
* Non-physician clinicians should be expected to take more of a role informing patients of their options, in a team-based approach. Spread the work. For that matter, nurses may often be better at getting informed consent than physicians.
* The end of the "medical cottage industry" and centralization by big hospital systems may make it easier to "order" doctors to fully inform patients, and families, so they can make often difficult health care choices.
* The American Board of Internal Medicine's Choosing Wisely campaign provides a partial template for how to talk with patients about choices.
* Beware of "routinization" and excessive standardization in "informed decision' discussions with patients. Every case is different.
* Intensity of treatments in geographical regions isn't associated with mortality rates. Patients should be told of this.
* It's time to start creating databases of patients' preferences so that treatments can be made more "patient-preference-sensitive." Make much more use of technology for collecting, reviewing and updating patient preferences.
* Patients, insurers or other payers should not be billed for services without documentary proof that the patient has been given all the options and expressed a treatment or non-treatment preference.
* Clearly reimburse clinicians for the extra time they spend informing patients of their options.
* Primary-care doctors should be the traffic managers of informed-consent efforts. Frequently a hospitalist takes over the job without knowing enough about the patient at issue. It's part of the disconnectiveness of modern health care.
* The health care sector must find new ways to approach informed consent mandates when the patient is mentally ill or cognitively impaired. This means new ways of talking with families about choices to be made on a patient's behalf and getting their assent.

Robert Whitcomb is a former editorial-page editor of The Providence Journal, former finance editor of the International Herald Tribune, a former editor at The Wall Street Journal and currently a Fellow at the Pell Center for International Relations and Public Policy.