What Do Patients Really Want?

Don't get me wrong, it's huge to see patient safety evolving to be a front-burner issue. After beating the drum for years, The National Patient Safety Foundation (whose annual Congress convenes this week) and other groups are seeing progress, with meaningful use, electronic health records, Pay for Performance, and the patient-centered medical home. Medicare Innovation grants and the Partnership for Patients are chipping away at medical harm and 30-day re-admissions. Empowered patients are test-driving their choices and influence though open notes, shared decision-making, lobbying and partnering. The first strides toward transparency are being taken.

Ken Schwartz

But before we get too focused on metrics or dazzled by our success, here’s another litmus test with which to measure our progress: "What Would Ken Schwartz Think of That?"

Schwartz was a 40-year-old lawyer working in healthcare, married with a young son when he got devastating news: advanced lung cancer. It came from out of the blue: he’d smoked an occasional cigarette in college and law school, but he'd been living a smoke-free, healthy lifestyle since then.

When Schwartz wrote about his care in the Boston Globe, early on in the diagnosis and treatment process, it was about something much more elemental than technology or transparency:

…the nurse was cool and brusque, as if I were just another faceless patient. But once the interview began, and I told her that I had just learned that I probably had advanced lung cancer, she softened, took my hand, and asked how I was doing. We talked about my two-year-old son, Ben, and she mentioned that her nephew was named Ben. By the end of our conversation, she was wiping tears from her eyes and saying that while she normally was not on the surgical floor, she would come see me before the surgery. Sure enough, the following day, while I was waiting to be wheeled into surgery, she came by, held my hand, and, with moist eyes, wished me luck…

This small gesture was powerful; my apprehension gave way to a much-needed moment of calm. Looking back, I realize that in a high-volume setting, the high-pressure atmosphere tends to stifle a caregiver’s inherent compassion and humanity. But the briefest pause in the frenetic pace can bring out the best in a caregiver, and do much for a terrified patient…I cannot emphasize enough how meaningful it was to me when caregivers revealed something about themselves that made a personal connection to my plight. It made me feel much less lonely. The rulebooks, I’m sure, frown on such intimate engagement between caregiver and patient. But maybe it’s time to rewrite them.

Ken Schwartz died of lung cancer in 1995, less than a year after his diagnosis. But his legacy lives on in the foundation he started shortly before his death, the Schwartz Center for Compassionate Healthcare at Massachusetts General Hospital. Dedicated to strengthening the relationships between patients and caregivers, it also stands as a poignant testament to the power of the human touch, and human kindness, in affirming our basic humanity.

The Power of Touch

“The most important innovation in medicine to come in the next 10 years is the power of the human hand,” says physician and author, Abraham Verghese, in his TED Talk, A Doctor’s Touch. During this era of “patient-as-data-point”, Verghese believes in “the old-fashioned physical exam, the bedside chat, the power of informed observation”.

From TED.com:

Before he finished medical school, Abraham Verghese spent a year on the other end of the medical pecking order, as a hospital orderly. Moving unseen through the wards, he saw the patients with new eyes, as human beings rather than collections of illnesses. The experience has informed his work as a doctor -- and as a writer. "Imagining the Patient’s Experience" was the motto of the Center for Medical Humanities & Ethics, which he founded at the University of Texas San Antonio, where he brought a deep-seated empathy. He’s now a professor for the Theory and Practice of Medicine at Stanford, where his old-fashioned weekly rounds have inspired a new initiative, the Stanford 25, teaching 25 fundamental physical exam skills and their diagnostic benefits to interns. He says: “I still find the best way to understand a hospitalized patient is not by staring at the computer screen but by going to see the patient; it's only at the bedside that I can figure out what is important.”  

Here’s the catch-22: sitting at the bedside takes time…time that’s precious, and to be frank, un-billable. In the 18 minutes it would take just to watch Abraham Verghese’s TED talk, a physician could see two patients (and get paid for it). Nurses also are over-worked and time-deprived.

Ken Schwartz would probably nod his head. He was a lawyer, after all. He would get it: tough to make a business case for compassion. But imagine yourself tied to the bed by IV lines, staring at the ceiling tiles and wondering if you’ll live to see another day. 

Respiratory therapist Colleen Murphy Allen posted this online (I’m using it with her permission): 

What makes a difference to the wounded and sick? Yes, good medicine is amazing science and phenomenal minds working hard to cure. However, let us not forget the small things: a warm smile, an ice chip, a warm blanket, a cool washcloth. A pillow flipped to the other side and a boost in bed. Holding a fragile hand while sitting by the bed of the dying in the deep recess of night. Jumping up onto a bed to do CPR…Staying alive, staying alive…Chapstick and a damp mouth swab. A patient comforted, a smile, a deep breath and heartbeat from someone resuscitated. This was a bit of my job over the last few days. We all do this. Every one of us. And this is not even in our job description. 

Maybe the incentives and payment widgets that shape and constrain a clinician’s time—and muddy the imperatives for “high-touch” care-- need some doctoring of their own. Perhaps along with our agendas, laptops and business cards, we can carry this question into every aspect of our patient safety work this year: 

"What Would Ken Think"?

Some of this post is excerpted from Pat Mastors' forthcoming book Design to Survive: 9 Ways an IKEA Approach Can Fix Health Care & Save Lives.

2013 Resolutions for Hospitals: “Let’s Go, People!”

US Surgeon General Regina Benjamin, MD

 The end of the year is jammed with big medical conferences, aimed at improving healthcare quality. In Baltimore last month, I and a small tribe of patient advocates were thrilled to join CMS (the Center for Medicare and Medicaid Services), the Partnership for Patients, several other sponsors and nearly 1,300 “thought leaders in American health care quality” for QualityNet 2012.

So what were the opportunities/marching orders we came up with for 2013?

1)    Patients can help fix health care. Use them.

2)    Hospital C-suite types are still worried disclosing medical harm to patients will lead to lawsuits. Please get over it. It just isn’t so.

3)    Many hospitals (you know who you are) aren’t trying hard enough to reach performance goals (PfP goals are to reduce hospital readmissions by 20 % and healthcare-acquired conditions by 40 % by the end of 2013). You need to step up. If you can’t do it, one patient advocate has a simple solution for you. (It’s at the end of this post).

Sitting in the audience, I loved much of what I heard. There was Jessie Gruman, a multiple cancer survivor, offering her take on the big buzz-phrase in health care: “patient engagement”. As she rightly points out, the millions of dollars invested in her various treatments are dependent on HER engaging to find the right doctors, choose the best treatments, manage surgeries, drug treatment and care delivery. Never mind the medical, lifestyle, emotional and spiritual gauntlet she has to manage in between. In the absence of electronic health records (still not ready for prime time in many respects), the smooth operation and integration of one’s care REQUIRES the patient to engage. In other words, patient engagement isn’t a pleasing option, like sour cream with your baked potato. Without patient engagement, the potato doesn’t get cooked.

Few people have earned their stripes on this topic as much as Gruman. Founder and President of the non-profit Center for Advancing Health, she’s beat back five life-threatening illnesses, including stomach cancer diagnosed just two years ago.

Three of her most Tweet-worthy points:

1. “We (patients) know mostly nothing about health care. We don't want to know. We approach on a need-to-know basis.” (Gruman has 11 physicians she has to see twice a year, so she needs to know a lot). Not one physician, she says, has ever communicated with another. “This is not a good idea.”
   2. Despite all the hoopla over IT, “there is no ‘killer app’ that will make us [patients] engage”.
   3. “Engagement is not compliance". (Love that one.)

Virna Elly then told us what it was like to have lived with type 1 diabetes and chronic kidney disease for most of her life, and a successful kidney-pancreas transplant eleven years ago. “I was a Medicare and Medicaid beneficiary by age 32.” Her plea: “We need more than a line at the end of a conversation or pamphlet telling us to ‘ask questions’. We need time to process and absorb, then ask questions. Why don’t you ever ask ‘what do you think of the information we gave you’? Why don’t you follow up? You need to meet patients at their level, how they need [information], when they need it.”

Poised and articulate, business suits mostly covering their accumulated battle scars, these were just a couple of the well-chosen patient presenters whose presence, learnings and good sense  were warmly received by a receptive audience. By all means, let’s work on developing this partnership in 2013.

Tim McDonald of UIC talks "transparency"

Disclosure and Transparency are here to stay. Embrace it! We (patient advocates and providers) had a bunch of workshops during our three days in Baltimore. In the first few minutes, we’d brainstorm topics, after which we’d break into small “table discussions”. People could vote with their feet, joining the group and topic of their choice. At our standing-room-only table, a lively exchange on “patient engagement” proved how much work there is to do. A hospital CEO (by all accounts a very intelligent and well-meaning CEO) posed her concern: her hospital’s risk assessor continues to insist transparency and disclosure (coming clean to patients/family when a medical mistake is made) increases the risk of a lawsuit. NO NO NO!  This is a gross fallacy, perhaps perpetrated by the “ACME Risk Analyst Association” (I made it up, but you know what I mean) for their own (guess why) purposes.

The plea I’ve heard from patients echoes the findings of a bunch of studies: Often, all an injured patient and family may really want is to know what happened and why, perhaps an apology, and to receive a reasonable monetary award (see story on the Malizzo family, below). In an effort to achieve that, dozens of states have passed what are called “I’m Sorry” laws. They allow a physician to discuss openly an adverse outcome with a patient and express empathy. The University of Michigan Health System pioneered this approach back in 2001. When medical harm happens (and it does, everywhere), they investigate, notify patients, and offer compensation when employees are found at fault. The health system says it’s had fewer lawsuits, lower liability costs and faster resolution of medical-error cases since the policy was implemented.

Yay! Results! Some HENS (Hospital Engagement Networks, contracted to deliver on PfP results) and hospitals presented data that show they are doing good work, able to put aside conflicting agendas to work together and deliver results that save lives. How great is that? We applaud the hard work it takes and celebrate this success. Not just for the lives saved, but because it proves it can be done.

There was much celebration of successfully instituting “hard stops” to early elective deliveries (EEDs, in the medical acronym lexicon). A good thing indeed, but described in some circles as “low-hanging fruit”. (No disrespect, but simply ending elective deliveries prior to 39 weeks’ gestation doesn't require as much teamwork, nuance or organizational culture change as, say, making sure patients leave the hospital prepared and equipped to manage their care post-discharge.)

Fact is, as some grumble, some hospitals are resisting the PfP objectives. They have no results to show. They haven’t joined the “patient engagement” bandwagon, either too frozen, too uncertain, or worse, too arrogant to dig in and do the work. Heck, they’re hoping the bandwagon will go the way of the stage coach: a product of its time, but merely a transient chapter in history. (And what, exactly, happens when the PfP contract expires at the end of 2013? No one is sure.)

Barb & Bob Malizzo at QualityNet2012

Bob and Barb Malizzo of Hobart, Indiana, whose presentation ended the conference, have a few words in response to this attitude. Their moral authority comes at a terrible price. Their 39-year-old daughter Michelle, mother of two little children, had entered the hospital in 2008 for a routine liver stent replacement and suffered brain damage from an anesthesia overdose. She was put on life support, and died nine days later. In the wake of this devastating event, the hospital’s chief quality officer, Tim McDonald, did the best he could do. He told the Malizzos he’d find out what happened, did so, disclosed it to them, apologized, changed hospital policy around quality control during anesthesia, and worked to make them whole again. Today, the Malizzos are part of the hospital’s quality improvement efforts. They not only weigh in on cases at the same hospital where their daughter died, but travel to conferences with McDonald and present “the layman’s perspective”.

I sat with Bob and Barb at the end of day two of the conference. They are a warm, sincere and engaging couple, though their grief over losing their daughter is never more than a word or gesture away. “What did you think?” Bob asked me of the last two days’ events. “Well”, I began, “it’s great that the patient perspective is such a big part of this.” Bob looked pointedly at me. “What about the hospitals that aren’t stepping up?” he said. “For every one that’s working on getting better, a bunch of ‘em are dragging their feet.”

I looked at him. “You have a point.” It was clear he had something in mind. “You’ve been a business owner,” I said. “You’ve even been mayor of your city. What would you do?”

He leaned in. “When people don’t perform, when they don’t do the job they’ve been hired to do, there’s only one way to go.” He beckoned me closer. “You fire their ass.”

Ah yes, there's that. 

Is this little-mentioned option really an option? Do you want the board of your hospital considering such decisive measures? If so, maybe you should let them know.

Or-- what are your best ideas to achieve the PfP goals within the next twelve—now eleven-plus-- months?

Because the clock, as they say, is ticking.