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Tag: Patient Experience

Patients are Not “Consumers”: My Cancer Story 

By JEFF GOLDSMITH

On Christmas Eve 2014, I received a present of some profoundly unwelcome news: a 64 slice CT scan confirming not only the presence of a malignant tumor in my neck, but also a fluid filled mass the size of a man’s finger in my chest cavity outside the lungs. Two days earlier, my ENT surgeon in Charlottesville, Paige Powers, had performed a fine needle aspiration of a suspicious almond-shaped enlarged lymph node, and the lab returned a verdict of “metastatic squamous cell carcinoma of the head and neck with an occult primary tumor”. 

I had worked in healthcare for nearly forty years when cancer struck, and considered myself an “expert” in how the health system worked. My experience fundamentally changed my view of how health care is delivered, from the patient’s point of view. Many have compared their fight against cancer as a “battle”. Mine didn’t feel like a battle so much as a chess match where the deadly opponent had begun playing many months before I was aware that he was my adversary. The remarkable image from Ingmar Bergman’s Seventh Seal sums up how this felt to me.

The CT scan was the second step in determining how many moves he had made, and in narrowing the uncertainty about my possible counter moves. The scan’s results were the darkest moment: if the mysterious fluid filled mass was the primary tumor, my options had already dangerously narrowed. Owing to holiday imaging schedules, it was not until New Years’ Eve, seven interminable days later, that a PET/CT scan dismissed the chest mass as a benign fluid-filled cyst. I would require an endoscopy to locate the still hidden primary tumor somewhere in my throat.  

I decided to seek a second opinion at my alma mater, the University of Chicago, where I did my doctoral work and subsequently worked in medical center administration.

The University of Chicago had a superb head and neck cancer team headed by Dr. Everett Vokes, Chair of Medicine, whose aggressive chemotherapy saved the life and career of Chicago’s brilliant young chef, Grant Achatz of Alinea, in 2007.

If surgery was not possible, Chicago’s cancer team had a rich and powerful repertoire of non-surgical therapies. I was very impressed both with their young team, and how collaborative their approach was to my problem. Vokes’ initial instinct that mine was a surgical case proved accurate.

The young ENT surgeon I saw there in an initial consultation, Dr. Alex Langerman performed a quick endoscopy and thought he spotted a potential primary tumor nestled up against my larynx. Alex asked me to come back for a full-blown exploration under general anaesthesia, which I did a week later. The possible threat to my voice, which could have ended my career, convinced me to return to Chicago for therapy. Alex’s endoscopy found a tumor the size of a chickpea at the base of my tongue. Surgery was scheduled a week later in the U of Chicago’s beautiful new hospital, the Center for Care and Discovery.

This surgery was performed on Feb 2, 2015, by a team of clinicians none of whom was over the age of forty. It was not minor surgery, requiring nearly six hours:  resections of both sides of my neck, including the dark almond and a host of neighboring lymph nodes. And then, there was robotic surgery that removed a nearly golf ball-sized piece of the base of my tongue and throat. The closure of this wound remodeled my throat.

I arrived in my hospital room late that day with the remarkable ability to converse in my normal voice.

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Paul Jaglowski, Feedtrail

Feedtrail is one of a new breed of customer experience companies. Most health care experiences are captured in paper surveys that end up in H-CAPS and Star ratings. These are very important for how providers and plans get paid but probably don’t actually reflect what happens very well and give very poor feedback to organizations and staff about what’s actually going on. They also don’t give a chance for patients to directly give positive feedback to staff who do a great job–which likely helps them feel good about their work. Feedtrail is working to fix all that. I got a full demo and explanation from founding CEO and chief strategy officer Paul Jaglowski–Matthew Holt

My family’s disastrous experience with a growth-driven long-term care company

by “E-PATIENT” DAVE DEBRONKART

Continuing THCB’s occasional series on actual experiences with the health care system. This is the secondin a short series about a patient and family experience from one of America’s leading ePatients.

I’ve been blogging recently about what happens in American healthcare when predatory investor-driven companies start moving into care industries because of, as Pro Publica puts it, “easy money and a lack of regulation.”  The first two posts were about recent articles in The New Yorker on companies that are more interested in sales and growth than caring.

My mother died in October. What we haven’t disclosed until now is that it happened in horror story #3: she passed after a single week of “respite care” provided by the local outlet of a growing chain of assisted living facilities.

Our mom, a 93 year old cardiac patient, had been in the hospital for ten days, and was discharged to go “home with assistance” because she was steadily improving. The respite facility’s director, an RN, evaluated Mom in the hospital, declared her appropriate for their respite care service, and took payment in full (in advance) for two weeks.

Mom’s primary caregivers were, as usual, the family’s daughters (my sisters), who had been with her throughout the hospitalization (and for countless hours every year). Mom and they discussed the discharge plans at length. Believing that a good respite care facility was an excellent bridge for continued progress between hospital and returning home, they purchased a two week stay after discharge. An important part of the decision was the website’s promise of “Strengthening during physical therapy.”

We soon found out that the facilities and understaffing were so precarious and stress-inducing, and so many things went wrong, that we didn’t dare leave her alone. To the contrary, after just one week, our mom said she was so stressed that she wanted to get out of there, and two days later she passed away.

Mom loved to sit in this gazebo, along a tributary of the Chesapeake. Photo by my sister.

Our complaint letter and management’s response

Much has been written in healthcare and other industries about how to document and report a service problem and how management should respond.

My sisters carefully composed a detailed seven page letter to management, listing everything that went wrong, from a wrong-height toilet seat, to a shower chair with missing handrail (perfect for assisted living, not!), to the Bluetooth room key that kept failing, to staff that couldn’t recognize the on/off switch on her oxygen, to stress-inducing fire alarms with nobody coming to help. That’s only a few items; their entire letter was published yesterday on The Health Care Blog (thank you THCB!).

And the facility’s response? After walking through the whole letter with my sisters on a call, their emailed bottom line was, verbatim:

“The services listed for respite program were available to your mother.”

Well, their marketing people need to talk to their facility managers.

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One family’s disastrous experience with a growth-driven long-term care company

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by “E-PATIENT” DAVE DEBRONKART

Continuing THCB’s occasional series on actual experiences with the health care system. This is the first in a short series about a patient and family experience from one of America’s leading ePatients.

I’ve been blogging recently about what happens in American healthcare when predatory investor-driven companies start moving into care industries because the money’s good and enforcement is lax. The first two posts were about recent articles in The New Yorker on companies that are more interested in sales and growth than caring. I now have permission to share the details of one family’s disastrous encounter with such a company’s “respite care” service.

The National Institute of Health says respite care “provides short term relief for primary caregivers.” It’s not medical care or memory care or assisted living; it’s not paid for by health insurance and it’s not regulated by the Federal government. It just replaces, for a while, the ordinary duties provided by family caregivers, so they can get a break.

The family’s mother was discharged from hospital to home. The primary caregivers were, as usual, the family’s daughters, who had been with their mother throughout the hospitalization. Believing that a good respite care facility was an excellent bridge for continued progress between hospital and returning home, they purchased a two week stay before taking their mother home.

It did not go well: ten days later their mother was dead.

The memorial tree planted by the family at their mother’s favorite park. Photo by Sarah.

The company’s website and lobby are gorgeous, of course. The reality was not. Media coverage talks about management’s desire to climb the rankings of biggest companies in the industry, as they acquire some facilities and build new ones. I believe the public needs to be alerted to such companies, in which management’s attention and achievements are much more on further growth than on delivering what they’ve already sold.

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Patient Worries as a Central Feature of their Health Care Experiences

By JOHN JAMES, ROBERT R. SCULLY, CASEY QUINLAN, BILL ADAMS, HELEN HASKELL, and POPPY ARFORD

Political forces trying to shape and reshape American healthcare without hearing the voice of patients provided the rationale for this work. Our experiences as patients, caregivers, and users of media sources cause us to worry. The Patient Council of the Right Care Alliance developed 6 questions to form a national survey of Americans to guide policy makers. The questions and our rationale were as follows:

1) Finding a doctor I can trust. Trust in our doctors is not as high as it once was. There are stories of serious patient abuse that appear in the media; two of the more notorious examples include a neurosurgeon harming many patients before being stopped and an oncologist who was deliberately misdiagnosing cancer to sell chemotherapy. Patients perceive this as the reluctance of the physician community to effectively ‘police their own.’

2) I will be misdiagnosed. Misdiagnosis happens far too often at all levels of healthcare. The problem is so common that the National Academy of Medicine turned its attention to the problem and published Improving Diagnosis in Health Care in 2015. The solution to the misdiagnosis problem is complex and has yet to arrive at the clinician-patient interface.

3) I will get an infection while receiving treatment. Healthcare-associated infections have dropped somewhat in the past decade, yet there are still about 720,000 infections and 75,000 deaths per year from healthcare-associated infections. Many of these are becoming nearly impossible to effectively treat. The improper use of ordinary antibiotics continues to be a problem in clinical settings.

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Bridget Duffy: Improving the patient experience

By MATTHEW HOLT

Bridget Duffy, the CMO of communications tech company Vocera & head of its Experience Innovation Network, is a national leader in the patient experience movement. And we all agree there are lots of improvements needed in the experience for both patients and front line clinicians. Anyone following the story about the death of my friend Jess Jacobs last year knows that there are problems a plenty in how patients are treated (pun intended). Bridget talked with me at HIMSS17 about how well we’ve done and how far we have to go.

The Top Five Recommendations For Improving the Patient Experience

By KATHLEEN MERKLEY and ANNE MARIE-BERKMORE

Healthcare organizations are working diligently to improve patient satisfaction and the patient experience of care. After all, patient experience of care is a critical quality domain used to evaluate hospital performance under the 2016 CMS Hospital Value-Based Purchasing (VBP) Program (accounts for 25 percent of a hospital’s VBP score)—and comes with the potential for a penalty or bonus.

Patient experience of care is also one of three essential dimensions of the industry-guiding IHI Triple Aim (a framework for optimizing health system performance):

  1. Improving the patient experience of care.
  2. Improving the health of populations.
  3. Reducing the per capita cost of healthcare.

Improving the patient experience can seem like a moving target influenced by a variety of factors. For one, despite the fact that healthcare organizations have been talking about and focusing on patient experience and patient satisfaction for a long time, universally accepted definitions don’t exist. For example, patient satisfaction survey vendors use contrasting language, leading to varying patient interpretations. The industry also lacks conclusive research that proves the connections between patient satisfaction and outcomes. And with so many resources focused on improving patient satisfaction, it’s no surprise healthcare leaders want to understand the connection.

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The Hospital That Shall Remain Nameless

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By LISA SUENNEN

flying cadeuciiLet me start this story by telling you the end: I am just fine. For those of you who like me, there is nothing to worry about and all is well. For those of you who don’t like me, sorry to disappoint you, but you’re stuck with me for a while.

I’m telling you these things—news to make you happy or disappointed, depending on your point of view about me—because this story is about my recent trip to the hospital, an unexpected journey that I wasn’t sure I was going to talk about publicly.

First of all, I didn’t want people calling and fretting and thinking I was suddenly in need of hushed whispers and pats on the head and casseroles. Second of all, I didn’t want people thinking they were finally rid of me and gladly so.   But mostly I wasn’t sure I was going to tell this story because I just didn’t want to make a big deal about it. But in the end, I couldn’t help myself. I decided I learned so much on my little stint on the other side of the healthcare desk that I felt I had to share.

It started as a bit of tachycardia, sadly brought on not by a George Clooney sighting, but rather by some anomaly of life which will likely never be known. As my heart started to race faster and faster over a series of hours, and when it became clear that I couldn’t count as high as my pulse was going, I called 911.
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