There are no instruction manuals for navigating a first serious illness. Even nurse navigators with all good intentions, and a very helpful title, might overlook something compelling. A little shared wisdom and experience would have gone a long way, recently, for my husband and me.
It is likely that most hospitals in the United States have something equivalent to The Liberty Lounge. Being housed in a hospital in Philadelphia, the cheery, regional title denotes the place where worried family members await the results of surgeries and other complex medical treatments. I was a visitor to this lounge three times during the pandemic summer of 2021 for my husband’s initial exploratory procedure and two serious surgeries.
This lounge is helpfully staffed with a greeter who gave me a “TGI Friday-type” beeper to alert me when the surgeon would be calling, TV screens with real time patient status, nurses to give update information and medical elaboration, and even a kitchen with snacks. This quasi-pleasant room is not where one would choose to hang out, although there is a camaraderie among those brought together on the same day by unfortunate circumstances.
Receiving the unexpected news
An innocent hygiene appointment at the dentist’s office led to my husband’s diagnosis of a small, stage one patch of squamous cells on the tongue, and its resulting reconstructive surgery, removal of 63 lymph nodes, and an undetected blocked carotid artery, which needed immediate prior attention. My husband and I were novices in the baffling world of serious illness and healthcare in the United States.
We were living like many people, going to our local primary care doctor, and not really paying close enough attention to lab work, gentle warnings, and medical practice faux pas. Prior to Medicare eligibility, we were tethered to the local healthcare system covered by our insurance. When we turned 65, our options increased, but we didn’t take the time to reconsider the quality of this local system.
Before this episode, there were some red flags. We both were under the care of nurse practitioners, rather than our primary care physician. I applauded our modern approach, wanting to contribute to the lowering of medical expenses and relishing the fact that we both had no serious health issues.
At one visit, we realized our primary care doctor had actually left the practice, and we had received no communication. Since we were both members of a gym sponsored by another well regarded healthcare system in our area, I changed our primary care practice to one in that same brand-new complex, for convenience and as pay back for the absent communication. The original practice never questioned our departure.
How many red flags does it take to wake up?
Again, the red flags were waving. At my first appointment, the new doctor assigned took multiple personal calls from patients in my examining room, forcing me to overhear private matters, while I clung to the exam table attired in a hospital gown. Her half-hearted look at previous medical records led to calling in a prescription to our pharmacy I didn’t require. Her disclaimer was that next time, I shouldn’t schedule an appointment so late in the day. We did not leave the practice, but merely transferred to another doctor we knew through a neighbor’s recommendation.
Unfortunately, human beings need to be startled to really change behavior. Such was the case when we were left waiting two hours in a “chummy” cardiovascular office, supposedly waiting for a disc to be read by our new specialist. Staff members were heard having lunch, telling jokes, and the physician himself was more credible as a comedian than a healer. That is when we finally took responsibility to find the best health care in our area.
After the wake-up call
Following the poor “patient experience,” as it is termed in the profession, we shifted to the premier teaching hospital in our metropolitan area. Little did we know that there was actually a star system of ratings of hospital and healthcare systems offered by the
CMS: US Centers for Medicare and Medicaid Services, a constituent of the Department of Health and Human Services, which is funded by our federal taxes! The CMS offered the three leading hospitals in our area different ratings of 5, 4 and 3 stars. At the time, we were unaware of this rating system and just luckily fell into the 5-star system.
From the first appointment, it felt like the shutters were thrown open and natural light began to guide our process. A scheduler provided the needed specialist and lab appointments right at our initial visit, and she gave clear directions on how to activate our patient portal. We left with a paper folder filled with copies of all required documents. Questions to the doctors which arose outside of office visits were answered quickly, compassionately and courteously by email on the same patient portal. The actual, required medical treatment was state of the art, and my husband is now, thankfully, cancer free.
Some medical sleuthing: Ranking platforms
The stark contrast to our initial casual, uninformed approach to needed medical care led me to investigate some wonky issues in US health care. It is common knowledge that the US health care system is ranked last among the 11 highest income countries. No other country allows income inequity to affect health care as “brilliantly” as the US. According to the Commonwealth Fund, a private US foundation dedicated to equity in health care, the US is a “mix of public and private, for profit and non-profit insurers and health care providers.”
Certain basic information does exist online that can go a long way in educating healthcare consumers, especially those with a dicey diagnosis. Although easily available, the two main sites are not commonly known. Unfortunately, the more prevalent consumer behavior is a reliance on historical medical relationships, geographical proximity and recommendations from friends and family.
Besides terms like “patient experience,” which is self-explanatory, consumers should familiarize themselves with the acronym, IDN, or Integrated Delivery Network. This is the current state of medical care in most areas of the country. An IDN operates a network of health facilities. You are probably somewhat aware of this phenomenon as you watch local hospitals being snatched up and purchased by bigger and bigger fish. The idea is to provide better health care by bringing together related, but separate resources such as physicians, laboratory services and various medical therapies.
Wikipedia defines these systems as the “logical integration of the delivery of health care vs. a fragmented or disorganized system.” There is a corporate, financial arrangement among the partners, and care transitions are facilitated. Sometimes, these are joint ventures with insurance companies. Most health care in the US is delivered in these IDN’s. A US Government 2016 Snapshot of US Health Systems reveals 626 large healthcare systems in the US, covering 88.2% of all hospital beds. In my own state of Pennsylvania, there are 41 health systems, or 78.8% of all hospital beds. According to a 2019 article in the Philadelphia Business Journal, in my local greater Philadelphia area, there are 18 IDN’s. What a dilemma for the consumer!
Yelp for Healthcare
Consumers can greatly profit by accessing the two main health care rating systems available in the US: CMS (Center for Medicare and Medicaid Services) and US News and World Report Health Rankings.
By utilizing the user friendly website, www.medicare.gov/care-compare, health consumers of any age can access suggestions for doctors, hospitals, nursing homes, home health services, hospice care, inpatient rehab, long term care and dialysis. The users simply enter their zip-code or town, and choose one of the above categories for a list of providers in the local area. Hospitals have been ranked by a five-star system. Other health providers can be selected and compared in a customized side by side chart, by examining common criteria such as provider level of education, distance, and reimbursement.
The other trusted source for healthcare ranking is US News and World Reports. Yes, I was also shocked that a for profit publication could be a dependable source. Since 1983, US News and World Report has become one of the most trusted (and feared) sources in Higher Education. It has been criticized for shifty rankings, questionable sources of data, and comparing apples to oranges.
Such is not the case with its web resources available at health.usnews.com. Since 1990, this organization has been ranking hospitals and affiliated medical services. Currently, consumers can use the website to research hospitals, doctors, senior care, wellness, insurance, diets, drug treatments and specific health conditions. Hospital administrators and the profession, in general, believe it is based on sound data, some of the same sources as CMS. There is a clear, pull down menu enumerating US News’s medical review process, editorial procedures, and medical board members, all of which validate their closely watched findings.
Your patient experience counts
The second member of the vital duo, which can serve to firm up the outcome and feel of a serious illness, is the data available on “Patient Experience.” That is the area which led my husband and I to abandon our prior providers. The Department of Health and Human Services defines this concept as a range of interactions within the healthcare system in the area of timely appointments, easy access to information and good communication with providers.
The Agency for Healthcare Research and Quality, or AHRQ at AHRQ.gov, is the federal government’s lead agency for the improvement of safety and the quality of the American healthcare system. AHRQ created and maintains the gold-standard suite of surveys, called the Consumer Assessment of Healthcare Providers and Systems, which provide valid assessments of patients' experience of care in hospitals, nursing homes, and doctors' offices.
In the realm of Patient Experience, one of the key components is the Patient Care Management System, various online platforms purchased by institutions, through which patients are enrolled to needed interventions across the IDN, Integrated Delivery Network. The goals of these various platforms (and there are many!) include respect and attention to patients, the appearance of an engaging practice, good communication, ease of access, and timeliness.
Surprisingly, both the excellent 5-star IDN and the shaky 4 star IDN which my husband I left, used the same platform, EPIC. Others include MyChart, MediBuddy, Salesforce Health Cloud, Access Care Planning, Vocera and Active Track. Smaller medical practices can use platforms geared to more limited endeavors. Ultimately, the speed of returning emails, and the use of the various available components lie in human hands. I was astounded that the patient experience could vary so widely between two systems that used the same online platform.
Kudos to academia!
Finally, the last consideration in one’s health odyssey is the value of going to a teaching hospital. Although not everyone is a fan of having a platoon on newbies involved in every appointment and procedure, there are many outcome advantages.
There is no ongoing buying and selling of the IDN to the highest bidder, and therefore less career movement of the providers. Teaching hospitals are required to admit Medicaid and Medicare patients, regardless of patients’ financial and insurance situations. Doctors are salaried, rather than paid fee for service, resulting in, hopefully, more reasonable fees.
But most importantly, teaching hospitals offer access to treatments not available anywhere else, have designated “Centers for Excellence” for certain diseases, and in rural areas, offer access to high quality telemedicine in academic centers. Fortunately, many large, urban teaching hospitals have outposts in surrounding suburban/semi-rural areas.
At last, an informed patient
Armed with information about Integrated Delivery Networks, websites with comparison data for healthcare outcomes and patient experience, from Medicare, US News and Health Rankings, and AHRQ, a first serious illness will seem less of a calamitous quest, and more like a well-planned itinerary, albeit one with unavoidable “curiosities.”
During the treatment of my husband’s tongue cancer, we kept company with a large band of professionals who consistently gave this process their expertise, compassion and attention. Such an endeavor requires the patient and support person to clear personal calendars to the extent possible, especially in the initial stages. Becoming associated with the best resources available will begin an effective timeline for treatment. The timeline looks something like this: noticing, investigating, testing, treatment, follow-up and lifestyle changes. Positive outcomes are our best hope. Being informed increases the odds.