Category Archives: Shared Decision Making

Singing On The Table: Be Activated in 2013 with a Non-Resolution

Opera Singer

An operatic tenor in action…

One of the intriguing things about angioplasty when it was first introduced, was that patients undergoing this profound, life-changing heart treatment remain awake throughout the procedure.

In the 1980’s my partner Burt Cohen, a filmmaker, began producing live televised training courses to teach cardiologists this new non-surgical way of treating heart disease. Procedures were broadcast from a hospital catheterization lab, and projected on giant screens set up in a conference center auditorium. The patients on the hospital cath lab table would look into the cameras and wave to the audience of physicians gathered in the auditorium, all of whom were waiting to see, in real time, how the procedure turned out.

One of the most memorable moments from that period was at a live teleconference broadcast to the US from Dr. Antonio Colombo’s cath lab in Italy. The screen filled with the face of a tenor from the Milan Opera who was lying on a cath table as he began singing O Sole Mio, reaching a crescendo as a buzzing catheter-based device in his heart began shaving plaque from his arteries.

The physician audience burst into applause, it seemed remarkable that a patient whose heart was being ‘operated on’ could be that alert, aware and energized.

So now when I think about the idea of the activated patient, that opera singer comes to mind.

Of course no one is 100% activated during a catheterization – you are sedated, and probably afraid, possibly even feeling fundamentally powerless.

But the evolution of less invasive, less traumatic techniques is part of a general trend toward improving the experience of medical care from the patient’s perspective. And a focus of 21st century healthcare will be on patients actively participating in their own individualized treatment, especially heart patients, who only 40 years ago were told to rest, avoid activity, and expect to deteriorate, and today are encouraged to exercise, self-manage and assume they can live a long, full, vigorous life.

We spent a long time choosing a name for this blog: the empowered patient, the informed patient, the educated patient, the engaged patient, we tossed around many of the trending terms that signal a more patient-centered attitude toward heart health.

But activated stuck because, like that tenor’s will to sing, it seems to capture a quality that belongs to the patient and comes from within – not something health professionals do to patients (educate, inform), or permit (empower, engage), but something patients summon up and create for themselves.

An activated patient is endeavoring to do whatever she or he has to do, to get what they know in their gut they need, in order to feel well and in control, hopeful and moving forward.

In the practical sense, an activated patient is an individual who has embraced the possibility of consciously acting in their own interest by equipping themselves with the information and skills they need to be an expert in their own care.

But while an activated patient is, by definition, self-directed, an activated patient can only prevail in a system that responds.

Activated patients not only need the motivation to be well, but a ton of information, skills, confidence, support, options and perseverance. That’s where educational projects like this one come in – hoping to help provide the coaching, the techniques, the libretto, the throat lozenges, the accompaniment, and the encouragement the singer needs to sing.

I’m not a fan of resolutions, because I’m not a fan of setting myself up for failure. But I am a fan of new beginnings, fresh opportunities and future plans. It would feel pretty good to me to be activated in my own life in the coming year. Most of us would benefit from taking an activated stance toward our bodies, our ailments, our daily routines, our work and our personal lives.

Whether it’s heart disease, or aging, or family issues, or career challenges, or finances, or any of a million obstacles, there are always pretty powerful forces at work promoting discouragement, disempowerment, inaction and anxiety. Activating doesn’t mean denying these realities, it means living in and with our lives as they are, assessing our options, and acting with commitment to our own best interest.

Activating entails trusting ourselves and seeking the help we need. I’m not the type of person who could sing opera with a catheter in my heart, but I sure like the idea of doing what defines you, no matter what.

Taking steps to get better, to feel stronger, to give ourselves breathing space, to engage deeply with life, and to enjoy as much as we can, could be posited as resolutions, or shoulds, or burdens we need to discipline ourselves to take on.

Or, we could think of becoming more activated as remaining awake, as allowing ourselves to be entitled to possibility, and to hope, to want more for ourselves, because it’s what we deserve.

Becoming activated is the opposite of easy or effortless, but it feels strong, it feels purposeful, it feels good and, it turns out, it’s better for our health and our hearts.

posted by Deborah Shaw, Angioplasty.Org Patient Education Editor

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Filed under Diagnosis & Imaging, Education, History, Patient Empowerment, Shared Decision Making, Treatments

Patient Representative to Vote on Practice Guidelines: One Small Step for a Patient, One Giant Leap for Patientkind?

Apollo 11 moon landing

Where no patient has gone before….

On Tuesday the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines announced that, for the first time, it will include a patient representative as a full voting member of the Guidelines Task Force. Angioplasty.Org reached out to authors of this recommendation to learn more about the new role of patient representative.

When I’ve observed the huge annual interventional cardiology conferences it always amazes me how invisible the patients are. Thousands of doctors gather to listen to hundreds of hours of scientific presentations, symposia and live demonstrations, all discussing ways to improve patient care and treatment outcomes. But no one hears a peep from patients. No one suggests, “How about we ask patients what they think of this new procedure/device/protocol? I wonder how this approach feels to patients; are we addressing the care issues that most affect the patients’ experience?”

In 2006 when the FDA held controversial hearings on stent safety, our editor and a patient from this site were the sole speakers addressing the issue from the patient’s perspective.

So, it’s good anytime one hears doctors talking about the importance of actively soliciting first-person patient perspective, and not just patient perspective as seen from the doctor’s perspective….

As Deepak L. Bhatt, MD, Professor of Medicine at Harvard Medical School and a co-author of the recommendation, told us:

Deepak L. Bhaat, MD

Deepak L. Bhatt, MD

“The ACC and AHA have taken the important step of trying to involve patients in the guideline development process. Doctors realize that the patient perspective is critical and decisions about the value of data cannot be made in a vacuum as professional guidelines are developed. This is particularly true when weighing issues of quality of life or a risk/benefit ratio that may vary depending on the invasiveness of a procedure (medications vs. angioplasty/stenting vs. surgery, for example). Who better to provide this perspective than an actual patient?”

For three decades the American College of Cardiology Foundation and the American Heart Association have established task forces of leading physicians to review evidence, interpret emerging data and publish clinical practice guidelines advising cardiologists in the treatment of heart disease.

This week the organizations announced changes to the methodology for creating these guidelines. The change at the top of the list: inclusion of at least one patient representative as a full voting member in the guidelines task force and on one of the writing committees.

“…the Task Force will invite patient representatives (defined as patients and former patients, patient advocates, or patient/consumer organization representatives) to participate as a member of the Task Force and a GWC [Guidelines Writing Committee] Methods to identify, select, train, and manage RWI [Relationship With Industry] and intellectual perspectives of patient representatives are proposed. Patient representatives will participate in topic selection, patient choices, values, preferences, and shared decision making.

“….Patient representatives could include patients, former patients, members of patients’ families, caregivers, and laypeople with ‘health literacy,’ including scientists, statisticians, engineers, and science writers.”

Ralph G. Brindis, MD, past president of the ACC and member of the ACCF/AHA Workgroup, explained to Angioplasty.Org his perspective on these new changes:

Ralph G. Brindis, MD

Ralph G. Brindis, MD

“This new methodology document sets the stage for the inclusion, selection, and the training proposed for a patient/consumer advocate for our guidelines going forward.  There is full consensus that the perspective of a patient/consumer advocate will enrich the guideline process– particularly in the era of shared decision making along with emphasis on ‘Patient-Centered Care.’

“We at ACC/AHA are quite excited about this addition, and view that it will have substantial positive impact in the guideline writing process.”

The report looks at questions of selection, training and role of the patient representative.  In the multi-step selection process, representatives will be nominated and reviewed by Consumers Union and other leading advocacy groups.

It’s a lot to expect one or two people to represent patients to the entire cardiology community. No matter how carefully the selection process takes bias into consideration, it will be one person’s viewpoint entering the room. Plus, the nature of the nomination and selection process appears to ensure that whomever is included will be an active, articulate, credentialed individual with previous experience in advocacy and/or health science.

I hope that more than one person is invited, and that whomever is selected to participate in developing treatment guidelines will establish an open line of communication with the public, perhaps via the internet, and solicit input from patients and caregivers. Many of the most insightful comments we receive in our community forums are from people who are not advocates or spokespersons, but individuals telling their personal stories.

It will be easy for a patient representative on a professional writing committee to get swept up in the jargon of “patient participation methodologies” and “engagement processes” in an inevitable professionalization of the advocacy role.

I urge our new patient representative to bring to bear personal narratives and insights of a broad spectrum of regular patients, to stay connected to the individuals who are on the cath lab tables, and to bring the voices of as many patients as possible into those well-appointed conference rooms, in an effort to inform the process of making heart disease decision-making and care more inclusive and responsive to the human experience of coping with illness.

posted by Deborah Shaw, Angioplasty.Org Patient Education Editor

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Filed under News, Physician Organizations, Shared Decision Making, Treatment Guidelines