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.

Helen Haskell: Where is the Patient Safety Movement Going?

Helen Haskell

Who in the patient safety movement does not know Helen Haskell? She has been an iconic trail blazer since an agonizing experience in which "we entered the hospital with two children and came out with one".

For many of us working on patient safety, back when we were first trying to make sense of our own loss, Helen was one of the first people we reached out to. She ushered us into a community of people who made us feel we were not alone.

What you may not know about Helen is that her training as an archeologist offers a unique lens through which to see the evolution of patient safety. This interview will cross-post this week  on the website of the annual Congress of the National Patient Safety Foundation (NPSF).

Helen Haskell

President, Mothers Against Medical Error

Years attended NPSF Congress: 7

Haskell.helen@gmail.com

www.advocatedirectory.org

Pat Mastors: What brought you to patient safety in the first place? Can you share one iconic personal moment of impact or motivation?

Helen Haskell: My life story really breaks along the lines of the new millennium.  Before the year 2000, I was an archaeologist and late-life graduate student working on a dissertation in West African prehistory. I had been in various parts of the world of archaeology for a long time. I had an undergraduate degree in Classics from Duke, an MA in Anthropology from Rice, and had worked in Rome, Israel, Africa, and the southeastern US.  I had taken several years off to be with my two children, high achievers of whom my husband and I were really very proud.  But in November of 2000 everything changed. We took our 15-year-old son to the hospital for an elective medical procedure to correct a congenital defect of the chest, pectus excavatum, a relatively common condition in which the breastbone does not grow straight. We thought it was a routine procedure, but things went wrong. We entered the hospital with two children and we came out with one. 

It was a searing, unspeakable experience.  Our son had slowly died from a severe medication reaction while his nurses and residents seemed unable even to respond to our pleas for help.  I was stunned at the disorganization we had witnessed and felt that my son’s death would be meaningless if we did not do all we could to change this situation. And that is really what has propelled me forward: the overwhelming need to find meaning in what would otherwise be the senseless loss of this child who we thought was going to be a rising star of the next generation.

I was fortunate enough, if you want to call it that, to be one of a group of patient safety advocates who came along at a moment that was ripe for reform. The Institute of Medicine report on medical error had just come out and while there was a good deal of resistance to the numbers it cited, there was also growing momentum for change. We were able to ride that wave and make the patient’s voice part of the process. There have been many moments that seemed iconic to me – moments when it felt as though we had tapped on a door that had been sealed shut for years only to watch in amazement as it slowly creaked open.  For me personally, some of those early moments happened when the medical interests in our state dropped their opposition and became supporters of our patient safety legislation; when the state endowed a chair of patient safety and named it for my son; and when our infection disclosure bill passed the legislature unanimously and we then watched similar legislation pass in state after state.  Nothing is necessarily permanent, but we felt, I think correctly, that successes like that meant that the patient safety movement was here to stay.

Pat Mastors: What is the most encouraging thing that’s happened in the past year in Patient Safety? The most concerning? 

Helen Haskell: The past couple of years have been very exciting.  In some ways it feels as though the field of patient safety has literally exploded. Many of the goals we have promoted for years suddenly seem to have become accepted – things like public reporting, infection surveillance, checklists, disclosure of adverse events, and even just the idea of coordinated effort to prevent hospital-acquired conditions.  Patient engagement is finally getting its due, although there is still a good deal of confusion as to how to go about it.  A great deal of this forward movement is due to the Accountable Care Act, which provides both the impetus and the funding for initiatives like PCORI and the Partnership for Patients.  But I think it is also true that we have finally reached a tipping point.  Patient safety is in the air.

My biggest concern is the ongoing problem of overtreatment. While overtreatment is beginning to be addressed in initiatives like safe birth programs, I worry that there is still too little momentum.  We live in a society that is steeped in the idea that medicine has a cure for everything and that incentivizes overuse by both patient and provider.  We can’t have safety until we have moderation, but I think we have a long way to go before the concept of moderation in medicine is considered a virtue.

Pat Mastors: What will you uniquely bring to the discussion at the Congress? 

Helen Haskell: I have always felt that having a background in the humanities and social sciences provides me with a different and useful perspective on medicine. As I think all patient advocates do, I always scan the horizon, trying to see how the pieces fit together, but at the same time my natural way of looking at things is through a deep historical lens. When we get discouraged, it is good to keep that in mind that change is always slow. Big reform movements like civil rights, women’s rights, and conservation were decades in the making, with many setbacks. I am not saying that slow is good, but I do think we need to view our cause as a social movement rather than the remodeling of an industry.  Medicine is more than just an industry, and patient safety involves large, comprehensive issues that reach far beyond safety into human rights, human dignity, and human kindness.

Pat Mastors: Where would you like to see more energy focused?  

Helen Haskell: In a word: transparency. The consumer movement has always focused on the idea of transparency, and for good reason. The immediate, practical reason is that transparency is something that outsiders can affect through the public process, without having to make unwelcome judgments about medical practice. But transparency also affects quality quite directly. The transparency we have now is really very rudimentary, but it has already had a big effect on practice.  It forces measurement, self-assessment, and accountability. It is the lever through which mountains can be moved. 

Helen Haskell is president of Mothers Against Medical Error, a member of the NPSF Board of Governors, and a director of Consumers Advancing Patient Safety, the Nursing Alliance for Quality Care, and the Institute for Healthcare Improvement.  She has collaborated with Consumers Union on patient safety issues, including hospital-acquired infection disclosure, since 2005. She has been working in patient safety since the medical error death of her son Lewis Blackman on November 6, 2000.