Informed Decisions: how advocates can help

Did you ever turn to "Dr Google" for help with a medical decision, only to walk away 30 minutes later, still confused? Ever ask a doctor, "what would you do if it was your wife?"

What are we looking for & how come it's so hard to find?

The science of decision-making has been academically exploding in recent years. Applying those findings to our pursuit of essential wellbeing has proven very interesting and resulted in interesting presentations at conferences like MedicineX and TEDMED.

The physician's strength lies in science. But objectives facts -- and even the experiences of others whom we trust --  are not enough for us to make the best decisions about our care.

I tell patients that there is important knowledge beyond the reach of Google: inside themselves. Without a grasp of one's own psyche, how can we make truly informed choices? 


Values Concordance

We exist in context: our values, preferences and risk tolerance plus social and environmental factors get factored into the very best choices, the ones with what the Informed Medical Decision Foundation calls "Values Concordance," when the care and the patient's values are in harmony.

But what if the patient has no access to her inner life?

Mental illness disturbs our knowledge of self dramatically. A patient with an anxiety disorder will have difficulty accepting risk; a patient with major depression may have difficulty making any decision at all.

Patients with mental illness who have no trusted advocate are vulnerable. The physician with a hammer, seeing her problem as a nail may prescribe and encourage vigorous pounding without taking into account the very serious comorbidity that is impairing the patient's ability to make an informed choice.

Think about white coat syndrome: as you sit in a backless gown in the exam room your blood pressure begins to rise. Do you fear bad news? Is this setting triggering bad memories? Even if you know yourself to be quite rational and of sound mind, your decisions may be affected by your rising anxiety.

Patient empowerment includes agency, certainly, but also appropriate help. I'm proud to provide as much help as I can to patients, no matter what renders them vulnerable at any given moment.

 

A problem shared is a problem halved

Problem solving is a big part of patient navigation. I practice my problem-solving skills on myself.

I’m a bit surprised that I’m keeping pace with a 9-to-5 as well as I am, given the type of boundary-less worklife I had previously. Each workday ends with preparation for the morning. Each morning starts with a modest amount of caffeine and half a vitamin pill. Yep, somewhere along the way I realized that those megavitamins I had rejected because they gave me gas or worse could be cut and served in halves. Duh!

I am often humbled when a solution reveals itself simply by changing my perspective of the problem. It's neither black nor white; the answer is not "all or nothing."

Patients can find themselves backed into what feels like a corner, e.g., “I need this surgery but I can’t handle this surgery.” What is the middle road? Do you need this surgery now? Do you need this surgery? Is it truly the surgery or the recovery that’s creating a problem? If it’s the recovery (usually) how might we support your best recovery?

Catastrophizing is the enemy of problem solving. Instead of conflating the issues, let’s break it down: what do you need on surgery day? How about post-op day two?

If your doctor’s office hasn’t explained to the level of detail you seek, remember there are many patients who have walked in your shoes before whose tips come from practical experience.

For example: Google “recover from knee replacement” and you get 426,000 results in .26 seconds. Sources range from websites of major medical centers to videos created by patients.

Lorraine Yapps Cohen, advocating for her husband several years ago, was full of tips for communicating with healthcare providers. Wikihow includes illustrations. A 60-year-old school teacher’s video provides motivation for the work of physical therapy.

Online forums can be a source of support, information, and collective knowledge and experience. “The constant outpouring of sympathy and support that we observed in interactions among community members surpassed anything a patient might conceivably expect to receive at a doctor’s office.” (Hoch D, Ferguson T (2005) What I've Learned from E-Patients. PLoS Med 2(8): e206. doi:10.1371/journal.pmed.0020206)

As a navigator I coach patients to give up thought patterns that are keeping them stuck, such as attachment to being “right.” My goal is to help them acknowledge that fear sometimes clouds our thinking and pride shouldn’t interfere with asking for help.

Where that help originates is limited only by our imagination.

Hi ho, hi ho - to ASCO I will go!

Bring on the patient advocacy quarry; I’m ready to break rocks!

Thanks to a generous scholarship from the Conquer Cancer Foundation of the American Society of Clinical Oncology* I will be attending ASCO 2013 as a patient advocate.

I’ve wanted to go to ASCO ever since I first learned about it. That’s a long time. I’m almost 9 years NED. My diagnosis came concurrently with a big boost to my medical communications career, and that's when I learned about ASCO. I followed the presentations from halfway across the country and wondered what it felt like to be among such a large group of the most respected cancer care providers in the world. Soon I'll know.

To my fallen comrades (Nick, Lori) and to those who are ailing (Mila, MG, Lenore) I pledge to do you right. I’ll take notes! I’ll tweet! Above all I’ll try to keep my eyes and ears and mind open.

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I had a different type of “ears open” experience last week at work. Taking advantage of a slowish Friday, I called in as the Patient-Centered Outcomes Research Institute’s (PCORI) Advisory Panel on Patient Engagement convened in DC. I listened to the 21 strangers introduce themselves to the public and one another.

What struck me in those introductions was the fuzziness of boundaries. Everybody on the panel pretty much presented their personal stories: sick children and personal suffering (Lyme disease, Parkinson’s, medical errors) alongside their professional identities (nurse, pharma researcher, attorney, minister).

It's a recognition that all of those experiences will help inform the plan  they create for change. Their charge, according to the Affordable Care Act, is

...to assist patients, clinicians, purchasers, and policymakers in making informed health decisions by advancing the quality and relevance of evidence concerning the manner in which diseases, disorders, and other health conditions can effectively and appropriately be prevented, diagnosed, treated, monitored, and managed… 

The PCORI patient engagement framework, as presented Friday, April 19, offers guidance but is short on specifics. I listened as the panelists thoughtfully began to consider next steps -- but I was distracted. My coworker in the next cube was embroiled in yet another conversation with her health plan or provider or pharmacist, advocating for her daughter’s needs. From her sarcasm I got a sense of how frustrated she must be. And she's an advanced practice nurse!

Clearly, those healthcare reform rocks aren't gonna break themselves: we've got work to do! 

*Supported by

• Millennium: The Takeda Oncology Company 
• Susan G. Komen for the Cure® – Breast Cancer Patient Advocates 
• Teva Oncology
•  Tracey W. Niederhuber Fund for Breast Cancer Patient Education