The Daily Rise: Friday, April 1

Patients First Philosophy

Earlier this month, we profiled Patients First, “a blog about self-determination, freedom and a libertarian-objectivist perspective of medicine,” which is published by Dr. Rafael Fonseca. Today, we share a recent post on “the moral trap of withholding or delaying needed treatments.”

We’d encourage you to read the entire piece, but we’d remiss if we didn’t spotlight Fonseca’s patient first philosophy.

“At my institution the principle of ‘the needs of the patient comes first’ is paramount,” Fonseca writes. “We all live by it and make our daily decisions based on this mission. If individuals include policy aspirations in the decisions regarding treatment we do not have the need of the patient first.”

“You can agree or disagree with co-payments, you can agree or disagree with the various treatment options in the elderly, but you express those in professional circles, in think tanks, in publications, in social media. But you cannot be a good patient advocate and make clinical decisions based on those beliefs. It is simply and purely anti-ethical. It is treason to the profession!”

Must Read Story of the Day

Dr. Dhruv Khullar, a resident physician at Massachusetts General Hospital and Harvard Medical School, has a novel idea: Let Patients Read Their Medical Records.

“When I interview patients, I often find their medical charts are littered with inaccuracies,” Dr. Khullar writes at the New York Times. “It’s one reason ‘read it in my chart’ isn’t a good way for patients to communicate health information — or for doctors to learn it.”

The anecdotal evidence is alarming:

“I noticed you’re scheduled for surgery next week,” I say to one patient.

“I had that surgery three months ago,” he responds.

“So you don’t have diabetes?” I ask another, perplexed. I see “diabetes” clearly indicated in her chart.

“No! Why does everyone keep asking me that?” she exclaims, exasperated.

These mistakes can have devastating effects for patients. Providers have an obligation to ensure that the information in a patient’s file is accurate and up-to-date. But, this problem won’t be solved until patients take charge of the issue. We’re entitled to our medical records under the Health Insurance Portability and Accountability Act. Patients need to make use of the law.

“Doctors may be motivated to write more thoughtful and accurate notes if they know their patients will be reading them,” Dr. Khullar suggests, “patients who frequently access their medical records may be more motivated to take control of their health — and in a better position to correct outdated or erroneous information.”

Let Patients Decide

Meryl Lin McKean, a reporter with Kansas City’s Fox affiliate, covers new research that suggests “patients with terminal cancer live longer with home care than hospital care.”

A new study published in the journal Cancer examined 2,000 terminally-ill patients finding that “those who’d been given days or weeks lived between four and seven days longer on average with home care compared to hospital care.”

“Researchers found cancer patients who’d been given just days or weeks lived longer with home-based care than those with the same prognosis who were in hospital-based care,” McKean reports. “It may be reassuring to patients and families who are concerned that the quality of home care will be inferior.”

Whether a patient chooses to remain in a hospital or return home — should ultimately be a decision left to each individual patient to decide. We need a health care system that allows patients to make the decision that is right for them without subtle influences or financial pressures. In many states, insurance companies restrict treatments — making IV treatments cheaper than oral medications. That undermines patients who choose to receive home care.

Beware Charity Scams

The Associated Press’ Travis Loller offers the public a helpful reminder: beware charity scams.

In Tennessee, two “sham” organizations masquerading as cancer charities have agreed to pay a $75.8 million settlement and dissolve the organizations. The scam artists allegedly spent money intended for cancer patients on excessive salaries and luxury travel.

Despite the eye-popping judgment, the public is unlikely to receive most of the money because scam artists James T. Reynolds Sr. “went on a spending spree after he was first advised of the complaint.”

According to court documents, “Not only did he sell his house in the fall of 2014, in the months since he has run up tens of thousands of dollars of credit card debt and spent almost all his available cash. He has been on multiple cruises and traveled nationally and internationally, always paying the way for himself and companions. Cash withdrawals from his checking accounts and credit card purchases since January 2015 have exceeded $101,000, not including payments for rent, utilities, insurance, automobiles, boats, or tithes to religious institutions.”

Before you donate, be sure to check out the charities financials at GuideStar.org or other reputable non-profit watchdogs.

Speaking of charitable transparency, Patients Rising was formed as a 501c3 in September of 2015 and we are awaiting our determination letter before actively soliciting donations from the public.  However, you can see a complete list of our Partners & Supporters and our first 990 for 2015 will soon be available on our website.

You’ll receive updates about new resources, patient stories and insights, advocacy work, and alerts about patient-support events.