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.

Thoughtfully, I was put in a quasi-isolation unit with two doors and negative air pressure. There was a consistent, very high level of focus on infection control throughout my stay. The next day, flushed with the news that no cancer had been found in any other lymph nodes, that there were clean, ample cuts around the tumors we knew about, and, best of all, that no follow-on chemo- or radiotherapy would be needed, I chatted away happily with two visitors for almost ninety minutes. I was repaid for this premature end-zone celebration with a siege of intense throat pain that lasted over a week. I was also repaid in a different way for the optimistic removal the next morning of the nasogastric tube installed during my surgery to feed and medicate me post-op. 

My surgeon, Alex Langerman, was generous with his time. We had four visits in the hospital that I could remember and one which I couldn’t. He responded thoughtfully and substantively to my questions and concerns but delegated the day-to-day management of my care to his senior and junior residents. The senior residents, who were present in the OR,  were as impressive as Alex was.

Some of the junior residents, however, literally phoned it in. On the second night, I woke up strangling on a large blood clot that had dislodged from the wound and blocked my airway. The anxious nurse in charge of my care paged the on-call resident who . . . didn’t answer the page in 90 minutes. Paged again, the resident scolded the nurse for bothering her and instructed the nurse to inform me that “breathing and swallowing problems were normal for this type of surgery” and refused to come in to the hospital to examine me.

At this point, I asked to speak to the resident on the phone, which prompted her to appear in my room thirty minutes later. She performed a perfunctory, fifteen-second examination, pressing down on my tongue with a depressor, but failing to examine my airway where a large piece of the clot was still lodged. Then she delivered a sour little lecture on how “breathing and swallowing problems were normal. etc.” and after documenting that she had showed up, ordered a swallowing study for the next day and vanished without taking any other action, not to be seen again. I eventually coughed up the rest of the clot myself and prayed it wouldn’t happen again. 

The failure of on-call residents to respond to pages from the nurses caring for me was repeated later in my stay. Despite this inconstant clinical back up, I received thoughtful and attentive nursing care throughout my stay. Sadly, the nurses seemed to spend twice as long typing into the numerous computers in the rooms and at the nursing station as they did actually caring for us.  

However, the inadequate pain control regimen vital to my regaining my ability to swallow exacted a huge price. Originally, my pain meds were to be delivered through the nasogastric tube that bypassed my new throat. When the tube was removed the day after surgery, no thought was given to rethinking my pain control. Though I had a mild patient-controlled anaesthesia through IV, I was expected to swallow my primary pain medication delivered in liquid form roughly every four hours. 

As you might expect given the large wound in my throat, swallowing was a nightmare, particularly since the liquid pain medications seemed to be suspended in alcohol. I could not swallow them sitting up in bed, so I made a medication station out of my window sill. Even if I diluted them with water or a suspension of edible fiber, it took almost twenty minutes to down each dose of pain meds. Every tiny swallow brought a sharp stab, a hop and a yelp, followed by a spasm of painful coughing. Several days of protest brought a new idea:  bitter ground up pain pills mixed with apple sauce! Chunks of pain medication and apple hung up in my throat, lodging on the wound. 

Then the hospital entered the fugue state otherwise known as the weekend. A hospital stay expected to be seventy-two hours had stretched to six days, during which I was unable to eat and barely able to swallow even water, let alone therapeutic food. I made an angry circuit of the massive, aircraft carrier sized hospital floor every few hours, pushing my IV stand alongside of me, weakening each day from the cumulative deficit of protein. 

 I lost more than seventeen pounds during my stay in the hospital, mostly muscle, from my inability to eat. This muscle loss contributed directly to the collapse of my left hip joint later in the spring by depriving a badly eroded arthritic joint of its supporting musculature. Escalating pain in both hips required two joint replacements in the ensuing eighteen months.   

Finally, on Sunday evening, Alex called for a pain consult, which came on Monday morning, from a brilliant young anesthesiologist named David Dickerson. The result was a nearly complete victory: a combination of an anesthetic patch, local anesthetic mouthwash for the throat, a medication intended to numb the small nerves, and a strong liquid systemic painkiller to be used as needed. I was discharged within 36 hrs. able to swallow protein drinks for sustenance. 

Unfortunately, within twenty-four hours, I was back in the University of Chicago ER for bleeding. I was readmitted for minor surgery to cauterize the wound in my throat, and also to remove fluid from one side of the neck. Finally, after recovering from the anesthesia, I was sent back to my physician’s house, which was my base camp during my Chicago stay. I flew home to Virginia two days later, on February 13. 

The saga wasn’t over. Karen, my wife, stayed with me the first four days. Despite her constant presence, neither my wife nor my guardian angel hosts in Hyde Park were given discharge instructions. Karen was barely acknowledged by any member of the care team during her four days in the hospital, despite her impending role as my caregiver. I received my discharge instructions in a haze of elation and pain meds,  and immediately tucked them away in my bag. When I arrived home in Charlottesville, exhausted from my eleven-day visit to Chicago, I showered and collapsed into my welcoming bed.

I awakened fifteen hours later with no feeling in the fingers of both hands. I also found nearly two-inch blisters on my heels from lying on my back for fifteen hours. Karen, a florist, was preoccupied by Valentine’s Day, her busiest day of the year, and my son, Trevor, who came to stay, was reluctant to disturb me. Six months later, I still had no feeling in the two outer fingers of my right hand, needless collateral damage from my treatment. I basically lost my ability to type. This avoidable complication was eventually addressed with a six-hour nerve grafting surgery at Washington University in St. Louis in October, 2015.

I’d been warned by several of my policy colleagues about selecting Medicare Advantage when I turned sixty-five. “Wait ‘till you get sick”, they sagely warned me.

In fact, my carrier, Humana, did not delay my course of therapy by five minutes, and rapidly approved my personal decision based on medical advice to seek cancer care from an NCI designated Comprehensive Cancer Center five hundred miles from home and “out of network” for my Virginia-based plan. 

Unfortunately, the MA approval process placed a huge clerical/administrative burden on my Charlottesville-based primary care physician Jeff Davis, whose long-suffering office staff was required to initiate requests for authorization for every single stage of the diagnosis and treatment, a process which consumed nearly two person days of administrative time. I did get regular check-ins from a Humana nurse for several weeks after the procedure and a big shipment of frozen meals.  

But otherwise, my Medicare Advantage plan added no value to my cancer care, and grossly underpaid the University of Chicago for my surgery. The hospital was paid $15 thousand under their Humana MA contract for my total care, not counting Alex’s surgical fee, for a complex surgery, an eight day hospital stay and an emergency readmission.

The surgical care I received at the U of C was a triumph, both thorough and definitive. It saved my life.  However, the follow up pain management and the discharge process and post-surgical recovery were disasters, both from a patient experience standpoint (fed back with verve on my HCAHPS survey!) and a cost standpoint.  

The diffusion of responsibility throughout the complex care episode, and consequent lack of ownership of my recovery, was the root cause of much of this gap. An additional learning for me:  much of the risk of any clinical intervention is borne by the family after the intervention is over. The failure to prepare my family for its role had direct consequences for me in future surgical episodes that would have been unnecessary a better scripted episode. 

A recent commenter on LinkedIn compared the “consumer” of healthcare to a person gorging on Baked Alaska in a restaurant where someone else picked up the bill. Given my own frightening experience with cancer, I found this characterization insulting and demeaning. I wasn’t “consuming” anything; I was drowning! My central challenge was finding someone I could trust to save my life. Would I have chosen someone I did not know or trust, but whose services were less costly, to rid me of my cancer? Not on your life. 

Economist Kenneth Arrow wrote sixty years ago that one thing that distinguishes medicine from other things our economy does is that illness is not only unpredictable, but also an “assault on one’s personal integrity”. Responding to that lethal uncertainty is the toughest job in our economy. I was and remain deeply grateful to my clinical team for saving my life.  

I am now nine years cancer free, and sobered by how fraught and complicated my care experience was. It is hard to describe how much fear and uncertainty I felt, even in my home institution, despite forty years of working experience in and around hospitals. When I hear marketing experts prattle on about the “consumer’s care journey”, it just makes me want to throw up.

Jeff Goldsmith is a veteran health care futurist, President of Health Futures Inc and regular THCB Contributor. This post comes from his personal substack

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.

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.

• Their pretty website says “24-hour caregiver staff for support when needed.” What we actually got was a call button system that often got no response; it failed entirely when the internet went down one night; the backup system was manual walkie-talkies that depended on someone being at the front desk, which was often not true; and a repeated call one day for help with a wheelchair transfer got no response. (Imagine if we had trusted the advertising and left Mom alone: she would have been alone in her room, unable to reach anyone.)
• Their required Uniform Disclosure Statement says a staff of 27 on the 7-3 shift. What we actually got was word from one agency worker that they only had two that day, another who said (while emptying the wastebasket) “We have to check on them every shift,” another who couldn’t respond for 90 minutes because she was the one serving dinner that night. And then we experienced one continuous period of 18½ hours with not a single check-in. From 7 pm to 1:30 the next day.
• The website brags about “Senior living technology to keep you safer.” That must be the Bluetooth wristband room key that kept failing: it’s the only way to get into the room. So every time they had to take it away to fix it, my sister couldn’t leave, because Mom wouldn’t be able to get herself to the door.

“Caregiver vacations,” huh?

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.

Indeed, this place’s respite care page describes it as “short term senior care for many situations such as caregiver vacations, temporary rehabilitation post-surgery, or trial stays for a prospective resident.”

What actually got: so many worries that my sister slept every night on an air mattress on the kitchen floor.

And just to rub some salt in it, when we demanded a refund, they said they wouldn’t charge for the days after we left (thanks!!). And then they had the gall to say they wouldn’t add an Overnight Guest charge for my sister – who stayed overnight because it wasn’t safe to leave!

Yes, they advertise “caregiver vacation,” then considered charging us for not leaving Mom alone overnight when that became obviously unsafe.

The company’s true focus: grow the business

I learned a lot from googling the company: all their 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.

• Six days after Mom passed, they announced that two more locations will open in 2023. Way to go, guys – scale up that success! “Senior living is an important investment focus,” said the private equity real estate guy.
• Their Twitter feed doesn’t talk about caring; they mainly chat now and then with an investor they admire.
• In their first 20 years they grew slowly to 11 locations. Then new management took over, and they’ve since grown 64% in the past three years (up to 18 now), with more on the way.
• Every industry has problems these days with staffing and budgets, but in May this company found budget to hire a new VP of Acquisitions and Spending.

People like this make me puke, from the RN director who said our mom would do fine there, to the operations manager who responded to our detailed horror story with a flat “The services listed were available” and “we won’t charge you an overnight guest fee,” to the executive leadership who think it’s all fine and they should grow some more.

Mind you, we are a savvy and empowered family of smart shoppers. If this happened to us and our mother, how will your family do when you need such services?

Mom’s tree

We are left with the memorial tree we had planted in her name at Quiet Waters, the lovely park on South River, near her home in Annapolis. (See photo at top.) It’s a southern magnolia, the aptly named Magnolia grandiflora for its big fragrant flowers. Her neighbors had one she liked to look at from her patio. Now there’s a young southern magnolia with her name on it, near the gazebo where she loved to sit in her later years. (Photo, right)

Have you experienced similar shortfalls?

I’m sure most people’s experience with long-term care (assisted living, respite care, etc) has been good. But this has been horrifying for us, as our actual lived experience was so different from the lovely tour and pretty website, and I can’t imagine we’re the only ones.

Is this a wider problem than we imagined? Have you had anything similar happen to you? Respond in comments, please.

Dave deBronkart is a patient activist, speaker and author. This is from his blog Democratizing Healthcare

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 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.

Here is the letter to the facility, written by the caregiving daughters “Alice” and “Sarah,” with day-by-day details of the constant failures caused by understaffing, disorganization and mismanagement. (All names have been changed, and the letter has been lightly edited for clarity and length.)

Mind you, this isn’t a skilled nursing facility or even assisted living; it’s just respite care. Read this and weep.

It is with heavy hearts and deep sorrow that we inform you of our mother Angela’s death 48 hours after leaving your facility.

As our family actively grieves her death and mourns our tremendous loss, we are reaching out to communicate several serious complaints about the poor service we received while she was in your respite care program from Tuesday, ________, 2022, until a week later, Tuesday, ________, 2022. This was a week short of the two weeks we contracted and paid for in advance. Out of great concern for her safety and well-being while in your facility’s care, we made the difficult decision to move her home and hired another agency to provide appropriate care at home. Our concerns are listed below, in chronological order.

Our purpose at this juncture is two-fold:

• We are firmly seeking a full refund due to breach of contract for services not provided as promised.
• A documented plan of action by you to address our concerns (see multiple suggestions at the end of this letter) so that no other family should ever endure the unnecessary stress and duress we did while our mother was placed in your trusted respite care program.

According to the NIH National Institute on Aging, Respite Care “provides short term relief for primary caregivers.” Sadly, our experience of respite care at your facility was the polar opposite.

Your website clearly states what we should have reasonably expected: “expert therapists” and “all the comforts of home.” But recent online reviews of your facility show more complaints like ours. After our alarming experience, it is clear that action needs to be taken beyond the polite and empty corporate responses to those online comments from your Regional Director of Operations.

Summary of Events:

Before coming to you, Angela was hospitalized for 13 days. Physical Therapy (PT) and Occupational Therapy (OT) evaluations at the hospital recommended discharge from hospital “to home with assistance.” She was not judged to even need rehab; she was ready to return home with assistance.

Based on these recommendations, as a family, we conducted an assessment of all options for consideration, researching several local options. After researching your website and touring your facility we were confident that your respite care would be a good interim program for her to receive the care she needed, such as PT 3x/week (as advertised) to regain strength and function, building on the progress she made while hospitalized, and provide relief for us, her primary caregivers at home and during the hospitalization. 

The day before discharge from hospital, your RN Executive Director came to do a routine assessment. She rated Angela a Level II client. As a Level II client, she needed accessibility assistance because in the event of an emergency, such as a fire or alarm (during which the elevator is not accessible), she would be trapped with no ability to safely exit the building – as we were to discover a week later. (Your director questioned her own facility’s paperwork, asking, “She’s on the 2^nd floor? Don’t we have something on the 1^st floor for her?”)

Tuesday – Day 1: arrival at your facility by ambulance from hospital approx. 2pm

There was a lovely sign at the front desk welcoming Angela, but her room was not fully prepared. Appliances were new and still had tape on the doors, the TV was not connected, the air purifier was unplugged (dangerous, since COVID-19, RSV, and flu have been placing our elderly and most vulnerable at risk), and the wristband Bluetooth key was not functioning. We had told you 24 hours earlier that we were moving forward, but you were not ready, despite our already having paid in full.

The room had several issues we noticed immediately:

1. Standard handicap equipment and aids were distressingly absent from the bathroom.
2. Toilet seat was too low (not even “comfort” height), with no grab bar on left side
3. Shower seat was too low, too far from showerhead, with no grab bar on right side.
4. The only chair in the room did not recline, preventing our mother from elevating her legs as instructed by her medical care team.
   1. Many elderly patients are advised to elevate their legs to improve circulation, especially in patients living with congestive heart failure (CHF) and peripheral arterial disease (PAD). With no safe seat to sit on and elevate her legs, we decided to bring our own recliner into your facility from home.
5. Note: Transfer notes and diagnoses from the hospital included PAD and CHF as two of her conditions; you were aware. Both maladies require elevating the lower extremities.
6. Room temperature was erratic – running extremely hot, then extremely cold.
7. The call button malfunctioned frequently over the course of the week, a major safety concern.
8. There was no phone in the room to call the front desk when the call button malfunctioned.

An RN appeared unannounced late that evening. He came into the room somewhat frantically, turned on the bright overhead light, went to drop a clipboard on the bed to use as a desk then realized Angela was IN the bed. He told us that staff must administer meds by state law (which is not what we’d been told by you.)

That was day one.

Based on the above, Alice spent the night in our mother’s room, on an air mattress on the kitchen floor – and slept there for the next 7 nights. She got no respite at all.

Wednesday – Day 2 (first full day at the facility)

Abrupt 6am wake-up when someone entered the room, turned on the bright overhead light, emptied the trash, took a QUICK glance at the bed, and told Alice, “We have to check on them every shift.”

Alice was there all morning. She personally told you about the non-working air purifier and the missing power cord for the TV (as Sarah had also done.) Sarah spent that morning shopping for necessary assistive equipment for the bathroom which you had not provided; she returned by noon so Alice could go to work.

Morning medications were administered by staff, including newly prescribed meds from the hospital.

NOTE:

1. Your facility substituted Incruse Ellipta for Trelegy Ellipta without consulting us. Alice noticed that, questioned it and consulted with our pulmonologist. They advised that Trelegy was better for this patient, and Trelegy Ellipta was returned to the medication list. Please advise why changes in medications are authorized without notifying the patient/family.
2. Facility also substituted Matzim LA 180mg (Diltiazem HCl) for Cardizem ER 180mg. Alice called the cardiologist’s office (it was after hours by then) and spoke with the cardiologist on call. It was decided that this medication was “probably okay to substitute.”

Later in the day, with neither of us in the room, the RN returned to talk to Angela about meds administration. She said she was not capable of having that conversation at that time and requested that he please come back later.   

1. During the assessment at the hospital, you personally had asked Alice if we would be administering Angela’s meds or if your staff would. You had told us we could administer meds (since we were only there for respite care for two weeks), as long as we could be there for AM/PM meds. Alice assured you she would be.
2. We had already informed all pertinent staff that Alice would be there to administer all AM and PM meds.
3. Alice had also told the daytime RN that she (Alice) would be there to administer all meds. 

Alice had multiple conversations with the male evening RN. He took a very paternalistic approach and kept trying to school Alice on meds, particularly how to taper the prednisone dose. She has been a licensed medical professional for 4 decades, owning and running her own practice, and had been managing and administering our mother’s medications for the last 5 years. She told him so, that night, and had to repeat it at every interaction with him.

After treating her own patients that day, Alice rushed back to your facility in the evening to:

1. talk with the RN again
2. have him return all of Angela’s meds to her room
3. have the RN note in the computer that meds would be administered by family
4. administer PM meds

Thursday – Day 3

Angela rang for assistance at 7am for a shower. Your staffer T answered promptly and came as requested. When it was time for Angela to stand from the low shower seat that had no handrails on the right side, T called out to Alice, “I need your help!”

What if we hadn’t been there?

It is important to note that T was wonderful all week.  She provided everything our mother needed from an aide, including compassion. 

Medication Error – Despite everything we did above, on Thursday morning a staff person came to administer 50mg of Prednisone, which Alice had already given her. If Alice had not been present, Angela would’ve received 100mg of Prednisone that day. This put all of us on high alert. Consequently, we strongly advised our mother not to accept any meds from anyone but family. Not surprisingly, she said she felt unsafe with your staff not knowing what they were doing.

At this juncture, we all realized she could not be safely left alone at your facility.

That afternoon, while Alice was at work, staffer K came to check in while Sarah happened to be out of the room. Angela said we wouldn’t need assistance getting to dinner because family would be there with her. When it came time to transfer from chair to wheelchair, unfortunately she couldn’t stand up even with Sarah’s assistance on one side. We pushed the button for help from K – no one responded after 20 minutes. She tried again several times over the next 90 minutes. There was no response.

K showed up after dinner, explaining that she did not have the notifications turned on for her response button as she was serving dinner downstairs, and (understandably) thought we were covered. Again – what if instead of just dinner, it had been an emergency?  There is no phone in the room to call the front desk.

K was great when she did arrive – but you are severely understaffed and the system has no fallback protection.

Friday – Day 4

The day started with potential for a more restful, less stressful day for Angela, but then the Bluetooth wristband key failed again.

You had to take it away again, which essentially trapped us in the room: if Alice left, her mother could not get up on her own to open the door to let her back in. And again, there is no phone to call for help.

NOTE: Earlier in the week we’d considered leaving our mother alone overnight Friday. However, we didn’t feel safe doing that, nor did she, so again Alice slept on the kitchen floor.

Saturday – Day 5 – MAJOR FAIL

After a very good start for our mother, feeling significantly better after one day of new heart medication –

Alice got her up, dressed and down to breakfast, seating her with her new friend from the aviary. Wanting to give the facility the chance to assist Angela without us being there, Alice left to do some errands, hoping Angela would have a few good hours out of her room, making new friends – finally, on DAY FIVE.

But when Alice returned two hours later, Angela was nowhere to be seen: she had gone back to her room. Alice found her there alone, very upset, stressed, anxious and scared, which is obviously to be avoided for a person with her conditions.

Angela told Alice that the long-term battery had run out on her Inogen portable oxygen unit, which is used anytime she’s out of the room and away from the bigger O2 concentrator we’d brought from home. She always carried additional fully charged batteries, a plug to use in a wall outlet instead of batteries, and an instruction sheet with photos on how to change the battery – ready to inform any aide who came to assist, be they familiar with the device or not.

She reported that when the battery ran out, she pushed the assistance button multiple times and there was no response. When an aide did show up, the Inogen battery was replaced, but the aide didn’t know how to turn the device on even though the unit has a standard on/off button and simple instructions were provided with step-by-step photos. Very upset and knowing she had the big concentrator in her room, Angela just asked to be taken back to her room. 

Our mother was without oxygen in your respite care for 20-30 minutes.

When Alice shared that story with you and asked, “Is Angela your only resident using oxygen?” you said, “We only have one other person on O2, and she has a tank.” 

The incident was reported to the appropriate supervisor yet no one came to check on her later and no accountability or apologies were offered.

NOTE: In the first few days of our mother’s stay, Alice had shown 3 or 4 aides how to change the battery. Your RN Executive Director was in the room (as was Sarah) and told the aides, “Pay attention. Then you can show me!”

Alice stayed with our mother all day and night Saturday, to console her and once again make her feel safe. Angela did not go downstairs for dinner that evening – a tray was brought up to the room for her. Alice didn’t get a dinner tray; she ate leftovers from the fridge.

Staffer T came on duty, checked in at 7pm, wanting to help get our mother ready for bed. Alice thanked her and told her we were all set for the night.

Sunday – Day Six – PROFOUND FAIL

From T’s visit at 7 pm Saturday, until about 1:35 pm Sunday, no one came to check on Angela until an agency staff person arrived to empty trash that afternoon.

Our mother, your resident, was left unsupervised by respite care facility staff for over 18 hours. (Remember your staffer saying on Wednesday morning: “We have to check on them every shift.”)

Concerned that you might be even more short-staffed on the weekend, Alice had stayed again Saturday night, so she personally observed:

• No one came to empty the trash. 
• No one came to check on our mother.
• No one came to see if she would like some breakfast. 
• No one came to see if she would like some lunch. 

Alice continued to eat leftovers from the refrigerator, sharing them with her mother for breakfast and for lunch. 

Finally, at 1:35pm, staffer X came to empty the trash. When Alice told her she was the first person to check on Mom since 7pm Saturday, she said she was from an agency (not your employee), that it was only her 2^nd day and that there were only two aides working that day for the whole facility.

Page 8 of your Uniform Disclosure Statement states there are 27 staff for the 7-3 shift every day.

This is a breach of contract, gross negligence, endangerment of patient safety, and simply appalling.

X returned about 5 minutes later with another staff person, who wrote down our names and room number in order for us to file a complaint.

Alice knew that staffer T was back on duty for the 3-11 shift so at 4:30 pm she went to the dining room to find her for assistance in getting a dinner tray to the room. Our mother was too upset, again, to go to the dining room.

Your Executive Director addressed our formally reported complaint on Sunday evening by telling Alice that the call system wasn’t working (again.) Normally the aide gets a message on her phone, and knows which resident needs assistance. This weekend, in addition to being seriously short staffed, the internet wasn’t working so that system was down. The aides had to use walkie-talkies coordinated by the front desk … but nobody was there.

There was no apology of any kind for the lack of anyone coming for 18½ hours. 

How could we as a client and family trust that our mother’s safety and well-being were being taken care of unless we ensured one of us was present 24/7? This was no respite at all. We would have had less work, less worry, and less expense if we’d just gone straight home from the hospital.

Monday – Day 7 – Fire Alarms (literally)

This was a potential disaster for a patient with cardiac issues, especially with the stress she’d already been subjected to all week.

A resident pulled the fire alarm while Alice was downstairs meeting a visitor. As the fire alarm blared, the PA system instructed, “Exit the building. Do not use the elevators.” Angela was alone in her room at the end of the hall on the 2^nd floor, in a recliner she could not get out of without help. And no phone. She was trapped.

MAJOR STRESS FOR A RESIDENT WITH A HEART CONDITION

• No instructions had been given on what to do in the event of a fire.
• No such information was posted in the room.
• No PA announcement said it was a false alarm (it was.) 

And then, it happened again: the fire alarm sounded again 15 minutes later, with the same blaring announcements to leave the building.

Thankfully Alice was there to check and let her know those were false alarms. What if she hadn’t been there? Our mother was alone, and no update was ever broadcast on whether the building was actually on fire.

Once again, Angela had a very stressful event to deal with. Around 1 pm she told Alice she wanted to go home as she did not feel safe at the facility.

• At 3:30pm Alice sent you a text message, notifying you of the planned move home.
• At 5pm you responded, saying “I was hoping that she would do so much better with therapy, but it does not seem to be happening.” This was day 7, and our mother never had any PT or OT. Not a single session.

A nurse from a home health agency had come to do an assessment because of ankle swelling. She recommended an inappropriate type of compression stockinette (which Alice recognized and declined.) Alice provided an appropriate and proper-fitting knee-high compression stocking. The nurse also said she would schedule PT and OT evaluations, but they never happened.

Tuesday – Day 8

We left your facility and took our mother home, a week sooner than we’d contracted and paid for in advance, because of the gross negligence and unsafe environment at the facility. She had arrived comfortable and optimistic; after a week of this she was so stressed she said “Get me out of here.”

She died at home 48 hours later.

We are left with profound grief as we process the chaos, unprofessionalism, dangerous gaps in care, and severe stress our mother and family endured while in your care.

We are pained to know that a majority of our wonderful mother’s last days on this earth were spent feeling unsafe, anxious, and stressed. You advertised, promised and contracted to provide exceptional care with “expert therapists” and “all the comforts of home,” which you did not do. We demand a thorough review, refund, and assurance that the above will never happen to another patient and family ever again.

Summary

Our mother, a cardiac patient, was discharged from the hospital because she was continuously improving. Your RN Executive Director’s assessment was that she was in the right condition for your respite care as a Level II resident. Instead, 10 days later, after a week in your facility, our mother was dead.

We do not want any other family to go through what we experienced.

We did not get any of the assistance or respite we paid for and expected. Due to poor logistics and workflows, clear understaffing on many levels, lack of proper staff training, lack of physical and occupational therapy services, and a generally unsafe environment, faulty equipment, and lack of secondary safety protocols, there was no question that one of us had to be with our mother 24/7 during her time at your facility – the opposite of respite. She felt unsafe and was heavily stressed at your facility.

Steps we, the family, had to take included:

• Sarah had to urgently purchase an adjustable height toilet seat with rails on both sides so that the toilet could be used by our 93 year old mother with mobility issues.
• She also had to bring in an adjustable height shower seat with rails on both sides so that the shower could be used.
• Within hours of her arrival, our family had to transport her recliner from home so that Angela’s legs could be elevated. 
• We had to stay in her room several times while you tried to resolve the issues with the wristband Bluetooth key that wasn’t working. This essentially trapped our 93 year old mother in the room, with an unreliable call button and no phone.
• We had to notify staff that the air purifier over the door was unplugged (not remedied until the second afternoon) – important during COVID, especially for a client with CHF, COPD, on oxygen 24/7.
• We had to assist in getting the TV functioning – no power cord, cable not even plugged in.  Alice’s husband worked with your manager Friday evening – 3 days after arrival – to get this resolved.

We received absolutely zero of the “expert therapists” your website promises, and we had to bring our own “comforts of home.”

In Closing:

We want a full refund (including any charges for guest meals and cable TV) and we want action taken to correct these failures in your Respite Care service so that subsequent families do not endure what we did, even for a week.

Based on the information we’d seen on your website and had been given in person during the tour we’d taken when researching local options for respite care, we honestly felt we were making the best choice for our mother. We do not feel that way now.  Trusting you was a mistake that we can never undo, and now she’s gone.

For the family…

Dave deBronkart is a patient activist, speaker and author. This is from his blog Democratizing Healthcare

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.

4) I will get unnecessary treatment or treatment that will harm me. Harmful overuse of procedures in the U.S. healthcare system is not uncommon. The idea that ‘more is better’ is not easy to displace. Fee-for-service invites perverse incentives to do more than the patient actually needs.

5) I will be denied needed care.  Necessary care is sometimes denied to patients, often by medical insurance companies. Treatment may also be effectively denied because of the high costs of drugs that patients cannot afford. For example, one-third of patients without health insurance cannot pay for their drugs as prescribed. Likewise, fear of high medical bills, especially from out-of-network billing, may cause enough fear in a person that he or she does not seek necessary medical care.

6) I will not be given all the information I need to make a good medical decision. Incomplete informed consent is commonplace in healthcare and typically falls short of what a reasonable or prudent patient would expect to know before agreeing to an invasive procedure. Although shared-decision making is slowly replacing informed consent as the benchmark for clinicians to engage patients, time constraints on busy clinicians may make this ideal a challenge to achieve, especially in patients with several comorbidities.

Our survey was initiated via email on November 24, 2018 and closed on March 1, 2019. Our demographics included age, gender, and type of health insurance. The 1133 responses to six questions were analyzed using non-parametric Kruskal-Wallis one-way analysis of variance by rank sum. Locations within the U.S. from which responses were received based on zip codes were well dispersed. For all questions, more than 50% of the responders indicated that they were somewhat worried or very worried about a quality factor (range 54 % to 59 %). Statistical analyses revealed several significant differences. Across all questions, women were more worried than men, and those who did not want to reveal their sex were most worried of all. People without health insurance were consistently more worried than other insurance groups, especially when it came to being denied needed care.

Below we discuss some potential improvements to patient worries, especially their greater involvement in care experiences at all levels, that may mitigate worries.

Trust of doctors may be improved by widespread use of communication platforms such as OpenNotes. Patients that have full access to what their doctor is thinking trust more. At another level, state medical boards must become more vigilant in dealing with physicians that harm patients. One approach to improving physician accountability is to welcome more patient advocates to state medical boards. Policies that insist on shared-decision making between patient and doctor when an invasive procedure is an option must become the norm. Reducing misdiagnosis may yield to technical solutions, such as artificial intelligence; however, immediate changes based on patient experience should happen. For example, because of second opinions, patients know when an initial diagnosis was mistaken. Healthcare systems must make patient feedback on misdiagnosis a cornerstone of their quality improvement strategies.

Reducing infection risks is a prime target for the Centers for Disease Control and Prevention. Unfortunately, over-prescribing of antibiotics that leads to resistant infections continues to happen too often. Patients may take an active role in reducing resistant infections by asking about the necessity of an antibiotic when one is prescribed. Likewise, unnecessary or harmful treatment may be reduced when patients become better informed about all their options, know the right questions to ask, and learn to avoid unnecessary screening. An intentional educational module for high-school and college students about avoiding overuse should be part of the curriculum of health classes. There should also be improved education of older adults when end-of-life treatments are based on what can be done to the patient rather than what can be done for and with the patient.

Obtaining needed medical care can be a challenge for those without health insurance or those living in remote areas. Note that 82% of our respondents without insurance worry about being denied needed care. When patients experience exclusion from healthcare, they should make appeals to healthcare leaders for changes to a more equitable system. Making an informed medical decision depends on sufficient information reaching the patient. This will not only improve doctor trust, but is more likely to lead to less overuse and better outcomes. Patients should know to ask about decision aids. Our survey was administered via email and in English. It depended on access to email and the ability to read English. Disadvantaged groups may be underrepresented.

Ideally, patients should never have to worry about the quality of care they receive when they are ill or have a serious disease. Our study has shown that Americans worry about the quality of healthcare. These worries are not ill-founded. In fact, they underscore reports in medical literature and the media calling for improvements in healthcare quality. Our survey has given direction to what the American healthcare industry must change to earn back the trust of patients it is supposed to serve.

The authors are the Leadership Team of the Lown Institute’s Right Care Alliance Patient Council. Lead authors are John James, Patient Safety America, and Robert R. Scully; associate authors are Casey Quinlan @MightyCasey, Bill Adams @Poorcountryboy2, Helen Haskell @hhask, and Poppy Arford.

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.

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.

When it comes to patient satisfaction and outcomes, this article advises health systems use patient satisfaction as a balance measure—not a driver for outcomes. The article also explains the connection between the patient experience and quality of care, demonstrating why patient experience is a prime indicator of a system’s overall health and, therefore, a worthy goal with benefits that extend beyond the expected (financial reimbursement, higher physician ratings, etc.). It concludes with five key recommendations than can lead to significant patient experience improvements.

Patient Satisfaction Surveys Are Integral in the Transition to Value-Based Care

“Whether you think patient satisfaction surveys are good or bad,” according to California-based family physician Leonard Fromer, MD, “the fact of the matter is that the marketplace you work in is demanding that data on patient satisfaction be used to empower consumers.” Fortunately, as a result of having been tested, validated, and refined for decades, most health systems see patient satisfaction surveys as meaningful ways to identify gaps, develop quality improvement initiatives, and act as balance measures to ensure changes in care delivery don’t negatively impact the patient experience. Patient satisfaction surveys are essential to the industry’s transition to value-based care.

HCAHPS (Hospital Consumer Assessment of Healthcare Providers and Systems) is the industry’s gold standard when it comes to patient experience surveys. Developed by CMS and the Agency for Healthcare Research & Quality (AHRQ), the survey collects patient experience data to enable objective, meaningful comparisons of hospitals. HCAHPS scores indicate the level of service provided by an organization, contribute to its reputation, and have reimbursement implications for providers. HCAHPS is consistent, validated, and ensures timeliness of measurement (administered no later than 42 days after patient discharge). The HCAHPS survey is administered to a random sample of adult patients between 48 hours and 6 weeks after discharge and asks for patient feedback in a variety of areas:

• Communication with clinicians
• Responsiveness of hospital staff
• Cleanliness and quietness of the hospital environment
• Pain management
• Communication about medicines
• Discharge information

The industry has made leaps and bounds when it comes to survey design and asking the right questions. But surveys must continue to evolve as populations change. Survey vendors need to keep pace with the changes in technology and healthcare delivery to capture the data needed to make meaningful, measurable improvements.

What the Research Reveals: Patient Experience Measures Are Indicators of Quality

Regulatory agencies believe the patient experience directly impacts quality of care (based on the fact that they require patient satisfaction reporting for reimbursement). But, despite quantitative and qualitative factors motivating organizations to prioritize patient satisfaction, many in the industry are still skeptical due to conflicting research. As Matthew Manary and others explain in The New England Journal of Medicine (NEJM) article, The Patient Experience and Health Outcomes, “Some studies indicate patient-experience measures have no relation to the quality of care. But some studies found that better patient experiences—even more than adherence to clinical guidelines—are associated with better outcomes.”

The NEJM article investigates the connection between patient experience and quality of care by researching three common concerns:

• Patient feedback isn’t credible because patients lack formal medical training.
• Patient-experience measures could be confounded by factors not directly associated with the quality of processes.
• Patient experience measures may reflect fulfillment of patients’ a priori desires or expectations (e.g., request for a certain drug regardless of its benefit).

Ultimately, the NEJM article determines that patient experience measures are indicators of care quality. It emphasizes that the industry’s debate “shouldn’t center on whether patients can provide meaningful quality measures but on how to improve patient experiences by focusing on several activities.” The activities range from focusing on care coordination to improving data collection methods:

• Prioritizing care coordination and patient engagement (associated with satisfaction and outcomes).
• Understanding the effects of new care delivery models on patient experiences and outcomes.
• Developing robust measurement approaches that provide timely and actionable information to facilitate organizational change.
• Improving data collection methods and procedures to provide fair and accurate assessments of individual providers.

The Top Five Recommendations for Improving the Patient Experience of Care

Although inconsistencies exist when it comes to how the industry (systems, vendors, etc.) defines the patient experience, the research demonstrates the clear connection between improving the patient experience and delivering a higher quality of care. Health systems have the right motivation (the Triple Aim), the right incentives (CMS), and the right tools (HCAHPS), but there are five key recommendations that can significantly enhance health systems’ patient experience improvements, from using patient experience as a balance measure to leveraging innovative technology.

Recommendation #1: Use Patient Satisfaction as a Balance Measure—Not a Driver for Outcomes

Improving the patient experience seems like a common sense approach to improving outcomes. If a patient feels good about her doctor and the care she’s receiving, then she’s more likely to comply with treatment recommendations. But a patient can have a positive experience and still end up with a negative outcome, such as a cancer diagnosis. Health systems should use patient satisfaction as a balance measure; not a driver for outcomes. Balance measures empower health systems to make significant quality of care improvements without losing sight of potential negative impacts

Using patient experience as balance measure helps healthcare organizations ensure that improvements in one area don’t negatively impact other areas. For example, if a health system wants to reduce length of stay (LOS) in labor and delivery, then LOS is the outcome measure. But if mothers feel rushed toward discharge, then improving LOS has a negative impact on patient experience (the balance measure). Another example: a health system makes a change to a heart failure order set. A patient experience balance measure is included to ensure the new, evidence-based order set doesn’t negatively impact the patient experience.

Recommendation #2: Evaluate Entire Care Teams—Not Individual Providers

The most effective surveys capture the overall care experience; they capture data as a whole rather than asking pointed questions about individual care interactions. Resistance to patient satisfaction methodology and the resulting credibility of the data happens when negative scores are attributed to individual providers. Surveys should evaluate more than just single providers; they should evaluate the entire care team and ask questions such as, “how did your nurses and physicians get along?” The value lies in understanding the effectiveness of the whole care team; not individual clinicians.

The NEJM article about patient experience states the importance of evaluating patient interactions with all care team providers: “When analyzing all the factors influencing overall patient-experience scores in hospital settings, we found that aspects of nursing care and communication were more predictive than interactions with physicians” and that “limiting patient experience measurement to a single dimension excludes the interactions that most strongly affect experiences and outcomes.”

Recommendation #3: Use Healthcare Analytics to Understand and Act on Data

Unless systems understand, use, and act on patient satisfaction data, they won’t improve the patient experience. Healthcare analytics, through the use of an enterprise data warehouse (EDW) and patient experience applications, identify meaningful relationships between patient experience, clinical outcomes, and employee satisfaction.

Patient satisfaction data has the power to inform more than just the patient experience or a single episode of care; it tells a much bigger story. For example, Health Catalyst’s Patient Experience Explorer Application helps users understand and act on their patient experience data; it analyzes data by demographics and outcomes improvement goals (e.g., readmissions) and delivers multiple, robust views into the data patients provide about their experience, from performance score summaries for executive leaders to survey results with goals and percentiles for unit managers. Integrating patient satisfaction and healthcare data into an EDW enables widespread data sharing at any time, across any clinical application. Analytic systems and tools make it easy to access and understand patient satisfaction data as it relates to overall care delivery. They also integrate data into the daily workflow and enable its use it as a balance measure.

How Texas Children’s Hospital Used Healthcare Analytics to Transform Its Patient Experience Efforts

In addition to implementing an EDW, Texas Children’s Hospital (TCH) deployed the Patient Experience Explorer Application to drive broader interest in patient satisfaction. As a result, TCH staff has access to the data and is more engaged in patient experience as a measure of quality—they can more clearly see the benefits of their efforts with patients.

The EDW aggregates data from a variety of hospital systems (clinical, financial, and operational), allowing TCH to integrate patient satisfaction data into its quality improvement initiatives. For example, TCH can now determine how decreased postoperative LOS (outcome measure) impacts patient satisfaction (balance measure) as it relates to its quality improvement initiative to improve outcomes for surgical patients. Regarding its other initiative to provide more timely care delivery in radiology, TCH can analyze how exam wait times impact patient satisfaction. TCH continues to integrate patient satisfaction into its clinical and operational improvement initiatives using its analytic systems and tools.

According to TCH’s Assistance Director of Patient & Family Services, Elisa Mozley, “We look to patient satisfaction as a way to connect with families and see how well we’re serving them. It provides an important gauge of how effective our operations are in any particular unit of the organization. Now, with our satisfaction data integrated into the EDW, we can also analyze with accuracy how the quality improvement initiatives we’re implementing are affecting patient satisfaction. Having patient satisfaction as a balance measure to these other initiatives enhances the effectiveness of our improvement program.”

Recommendation #4: Leverage Innovative Technology

Innovations in healthcare technology are revolutionizing the patient experience. From interactive tools that improve wayfinding and reduce stress for patients and visitors, to real-time location service technology that improves patient flow and reduces wait times (positive reviews start to skew negative when wait times exceed 20 minutes, according to the 2015 Vitals.com Annual Wait Times Report), healthcare organizations can use innovative technology to enhance the patient experience:

• Communication devices and electronic patient feedback systems that alert staff in real time.
• Interactive education systems that give patients important information about their care.
• Smart rooms that allow patients to customize their environment in waiting rooms, exam rooms, and during high stress treatments and procedures.

Recommendation #5: Improve Employee Engagement

Healthcare organizations are increasingly realizing and understanding how employee engagement impacts patient experience. For every one-percent increase in employee engagement, an organization’s overall hospital HCAHPS rating increased by .33 percent and patients’ willingness to recommend the hospital increased by .25 percent, according to the Advisory Board Company’s 2015 Employee Engagement Survey.

Many healthcare organizations have created the role of Chief Patient Experience Officer to enhance the patient experience, from facility design to employee training and engagement initiatives; they’ve realized the important connection between engaged, satisfied employees and happy patients. Without an engaged staff, the right systems and tools in place to make data-driven decisions (and employees who know how to use them), and a culture dedicated to achieving the Triple Aim, the patient experience will suffer. Good patient satisfaction scores speak to the overall health of an organization, including its staff.

Patient Experience Is a Prime Indicator of a System’s Overall Health

Health systems continue to shift their perspectives about the patient experience, seeing it less as another regulatory requirement to meet and more as a prime indicator of healthcare organizations’ overall health. A great patient experience comes from more than just the patient-clinician interaction; it’s influenced by everyone and everything within a health system, from the admitting clerk to a clean room—it’s influenced by the entire health system’s infrastructure.

Health systems are tenaciously pursuing patient experience improvements, eager for more information about how patient satisfaction and experience fits into the bigger healthcare picture. Fortunately, the industry has come a long way with validated, reliable survey instruments and data-powered insights. Healthcare systems and leaders can continue to improve the patient experience and better manage the myriad of variables adding to its complexity by implementing five key recommendations that reflect industry best practices:

1. Use patient satisfaction as a balance measure—not a driver for outcomes.
2. Evaluate entire care teams—not individual providers.
3. Use healthcare analytics to understand and act on data.
4. Leverage innovative technology.
5. Improve employee engagement.

Let 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.

I was in a hotel room and not at home, and that, combined with my inability to stand due to dizziness, rendered me helpless on my own – a situation I am neither used to nor happy to experience. Nevertheless, the paramedics were good-looking (I figured if this was the last sight I was going to see, at least I had that going for me) and the female paramedic in charge of taking care of me was awesome—totally in charge of the situation and, to my amusement, totally in charge of her retinue of male assistants in the process.

Before I get back to the story line, I just want to remind those of you who care that one of my areas of greatest interest in healthcare is how patients engage with and are treated by the healthcare system. Too often the patient is the last person to be thought of in these situations, despite the situation’s inability to occur without their presence.

As I moved from healthcare “expert” to healthcare patient during this experience, I was hyper-aware, almost in an out-of-body experience kind of way, about my patient experience. I was also hyper aware of the 240 beats per minute at which my heart was going at its peak, and how scary and clueless I felt despite all of the knowledge I have from nearly 30 years in the healthcare field and a bunch of cardiology investments.

Looking back, I can only imagine how much worse it would feel for someone who didn’t talk healthcare every day of their lives or even know to call 911.

Anyway, back to my little personal drama. The ambulance ride was surreal but fine and I got the mandatory ebola screen in the ambulance bay before admission. Fortunately my recent visits to Berkeley do not count as an at-risk foreign visit and they put me right in a room and didn’t leave me in the hallway like so many other people. And that’s when my story got interesting, at least to me.

I have lately been paying a lot of attention to the whole concept of hospital patient experience. I am actually running a competition for a client (Avia and HX360) on this very topic at the upcoming HIMSS conference. And thus this became a real world experiment in walking the talk.

My patient experience actually started out pretty well, considering the circumstances. The paramedics and EMTs could not have been more communicative, sensitive and responsive (although the hotel manager’s creepy presence during their treatment process continues to baffle me). The Emergency Room personnel that first night were also wonderful. The nurse assigned to watch over me, a pretty big dude who looked more like an NFL fullback than Florence Nightingale, kept me very up-to-date, brought me a never-ending stream of warm blankets and even complimented me on my admittedly outstanding pedicure when checking out my vitals. He made me feel safe and relatively unafraid, considering.

But when I got moved to a room on the cardiology floor, well, it wasn’t quite the same. By the time I was in a room, I wasn’t feeling quite so out of control and, while tired, I could spend some of my energy concentrating on my experience rather than my situation. And while some of the nurses were incredibly kind and attentive and while, frankly, the food wasn’t bad, here are some of the things that actually happened to me during my hospital experience:

• I was told to ring the bell if I felt my heart racing. So I did on two occasions. In both of those situations, no one responded to the call bell. Since the nurses had no way of knowing if my reason for ringing was a crisis or not, it was quite discomfiting when I later walked into the hall to get attention by interrupting the very loud discussion the nurses were having about their favorite TV shows at the nursing station. On that occasion I was told, “Oh sorry, we just never hear the bell.” Later, when it happened again, I was told that the nurses are simply too busy to respond to patients calls. True story.
• I got downright bullied by a doctor who wanted to rush me into procedures that I felt to be unnecessary, premature and excessive. When I questioned his recommendations (based on my own wonderful doctor’s input), he tried to guilt me into compliance and treated me with unbelievable rudeness. He scoffed—literally scoffed—when I told him that if I needed any actual procedures I would see my usual doctor, thank you, who happened to be at a different hospital than where the ambulance took me. He told me that I was being shortsighted and that the services at both places are the same so it made no difference. Lord, I hope that isn’t true.
• That same doctor, and his retinue of residents, “attended” to me without ever speaking to me, looking me in the eye or asking me how I was feeling.  It was not until I asked the doctor a question did any of them look or talk to me.   It was insulting and made me feel like a diagnosis, not a human. When the chief resident finally spoke to me, she asked me questions that made it clear she had not read my chart, inconveniently located in her hand.
• In the first room I was put in there was a seriously disturbed person in the next bed who started screaming and swearing at me when, at 3 am, I asked her to turn down the volume on the television. Granted, I was immediately moved (the nurses did hear the lady screaming at me if they couldn’t hear the call bell), but the new room had a very ill person in it who hacked and coughed and spewed lord knows what around the room. If they ever answered the nurse call bell, I would have asked for a Lysol bath. I was pretty sure that I didn’t enter the hospital with ebola, but I was not so sure I’d leave without it.
• I was told, “don’t worry, since this hospital and that hospital where your doctor works both use Epic, your doctor can get all the records by just signing in.” Hahaha…that’s a good one! These two hospitals are in entirely different health systems and I got to tell my new case manager friends about how Health Information Exchanges work and how the absence of one would mean that I needed a paper copy of my records to take along, thank you. I’m guessing that most patients don’t know that and walk out without their information–a nightmare in the making when you have a lot of follow up to do.
• Incidentally, I found out that none of the information collected in the hotel room or ambulance made it into my hospital record. None of it. So in other words, the data from the most critical part of the experience was apparently lost since ambulances generally do not transfer clinical detail to hospitals. Fortunately (?) some of this information was recovered eventually since the paramedics had left all of the original EKG readings on the floor of my hotel room. Hello HIPAA. This made me realize how important this connectivity between emergency responders and hospitals really is. I kind of knew that (hence my support of Beyond Lucid Technologies, which helps solve this problem), but the lesson was brought home in a big way through direct experience.
• I was given test after test without being given results unless I specifically asked for each one. Since each test result was going to determine the next steps about my care, my stay, my life, I was kind of annoyed to have to keep on asking what the hell was going on. I was particularly annoyed when, at midnight, I was carted off to a CT scan that hadn’t been mentioned. OK, uncle, I figured. I’ll have the test, but I did not enjoy being told that I had to figure out how to jam my shoulder down flat despite the fact that a twenty-year old botched shoulder surgery makes that literally impossible. The tech “helping” me with this told me she would just “push my shoulder down” and strap it if need be. That would have sent me right back to the orthopedic wing of the hospital as they frantically searched for the nails falling from my shoulder to the floor, so I firmly suggested we find another way. She was overtly exasperated at the inconvenience.
• And speaking of Epic, I watched my nurse and doctor argue about the doctor’s mistakenly putting in test orders using the wrong time convention (“regular” time vs. military time), thus accidentally scheduling my test 12 hours after it was supposed to happen. The doctor took serious umbrage with the nurse pointing out the error, even though the nurse was right, and the nurse spent much of the rest of the shift telling me what a jerk the doctor can be. Not too professional all around.
• And the crowning glory: I just received all of my claims letters notifying me that all of my charges were rejected. The reason: I am no longer covered under the plan. Well that’s exactly right, because they sent the bills to whatever happened to be in their information system rather than to the payer noted on my recently issued new insurance card, which I had produced on demand at least 3 separate times in the first 3 hours of the experience. So now I get to chase that one down.

The good news: I am fine, nothing serious, a weird situation that doesn’t pose a risky medical threat. My regular doctor and his colleague, who  helped me with all the follow up care, were wonderful and responsive and they made sure I got everything I needed quickly and kindly and conveniently. The people at the imaging center were really wonderful.  These aftercare experiences gave me hope that the system can actually work well.

The bad news: the above set of complaints actually represents experiences from two different SF hospitals. I had a bit of a scare later in the week after being discharged from the first facility; that sent me back to a different ER as a “just in case.” So I was pretty bummed out that the odds of having a bad hospital patient experience seemed to be pretty much 100%, at least in my own set of patient experiences.

While I definitely don’t look forward to shopping for an inpatient experience ever again, the odds are that, someday, I will have to; if not for me, then for a family member. I am very aware of how my experience colors my desire to return to these places. To put a finer point on it, if Nordstrom had treated me this way, I would be doing all my shopping at Macys.

As patients become more and more aware of their right and responsibility to take a more active role in their own healthcare experience (and pay a more considerable financial chunk of it out of pocket), we all know how important it is for those who want our healthcare business to treat us like desired customers. Yeah, we may come in to shop by ambulance, and no one really wants to be there in the first place, but considering the odds of each customer having to come back someday, you would like to think the hospitals would pay a bit more attention to ensuring a relatively decent experience.

Hospitals and the clinicians in them can’t guarantee you will be happy or even healthy, but they can make you feel like a person, not a disease; they can be responsive and kind, not indifferent. They can make you feel like they are trying to make you feel better, not uninterested in what you feel at all. And the hospitals that are becoming known for great patient experiences are creating regional and even national brands for themselves that enable them to grow beyond their headquarters to build diverse, enduring businesses that draw people to their doors (and websites).

In his excellent book about patient experience called Service Fanatics, Dr. James Merlino (formerly Chief Patient Experience Officer at the Cleveland Clinic, now President and Chief Medical Officer of Press Ganey’s strategic consulting division) starts with this quote from Maya Angelou:

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

Truer words were never said.