As physician leaders, our opinions matter. Whether the audience is our family at the holiday dinner table, team members at a meeting, the audience at a presentation, or a media reporter, people want to know what we think and are willing to share when the topic revolves around healthcare. As we embark on another new year, a common question asked in many of these circles is, “What are the most important challenges facing healthcare?”
Table 1 lists and categorizes common responses to this question that I am sure we have all used. The list has validity; all of us confront these healthcare challenges each day with our teams and patients. The list is durable, meaning that the same topics show up year after year. This alone suggests that perhaps the challenges are so large they will require a significant multi-year effort and collaboration to achieve progress.
The pandemic has changed the context of care. While the topics are similar to those in pre-pandemic times, we lost valuable time and ground in our fight against these healthcare challenges because the pandemic required us to reprioritize our work during those years. The pandemic also may have created a completely new set of emerging issues that will require our ongoing attention as we attempt to recover from the chaos of those years.
To get a better understanding of how this list of challenges resonates with patients and their significant others, I performed a “field test” among five patients and their families to get a better understanding of the healthcare concerns that they faced. Although the observations I share are purely anecdotal, they may provide some important things to consider the next time the question is asked of us.
All of these patients were older than 65, all had a dedicated spouse participating in their healthcare journey, all were college educated, and all were insured by Medicare and alternate insurance. In some cases, these patients were Medicare Advantage members; others had supplemental private insurance. Most importantly, all of the patients had a diagnosis of a Stage 4 malignancy with a limited life expectancy, which highlights the degree of complexity that they were dealing with in their lives and healthcare decision-making.
It also helped to frame the conversation, because these people were all currently undergoing a lot of healthcare, and their lives depended on it. All of them were being cared for in major academic, comprehensive cancer centers, not because they chose it, but in some way and for some reason, these places were believed to be the best places to achieve the care that they needed. Importantly, none of the five received care at the same place.
Patients’ Healthcare Challenges
As expected, the patients’ and families’ view on the current challenges of the healthcare system were somewhat different from those listed in Table 1. Table 2 provides a list of the major challenges that they identified, and I categorized for simplicity. Among the major challenges identified, coordination issues, medication issues, payment issues, and respect issues were at the top of the list.
Quality of Care Issues
All of the patients and families believed that they were well cared for despite raising challenges they experienced in their care. Yet, even though they all felt well cared for, when pushed, none of them could provide evidence, facts, or data that they were receiving first-rate care for their malignancies or care in a location that had sufficient volume for that malignancy.
Three of these patients were receiving care locally because of recommendations made by their primary care physician who made the initial diagnosis, one was referred through a local specialist, and one was so tired of having his condition deteriorate, despite multiple physician visits and tests, that his spouse drove him to the emergency department of the regional academic medical center for care where the initial diagnosis was made. None of the patients understood the terms Leapfrog, Stars, or HCAHPS, or knew that there were evaluative metrics for the institutions and providers serving them.
Coordination Issues
Coordination led the list of challenges. For patients with an advanced diagnosis, their time is no longer their own. Their schedule is driven by what physicians they need to see and what diagnostic tests and treatments need to be performed. Because of full panels and wait times, access was a problem. The only solution was to concede to the available appointment times regardless of how their personal lives or livelihoods were impacted.
Two patients were still working, but despite feeling healthy enough each needed to forgo work to get the treatment they needed. Each of the patients highlighted delays in access to specialty care, long wait times, confusion in terms of which specialist they should be seeing, and a lack of understanding about “how it all worked.” Four of the patients or their spouses kept detailed records. For two of the patients, this included the entire medical record that they brought with them to each visit in case something needed to be looked up. They could not count on providers having easy access to the most up-to-date information.
Financial Issues
None of the patients I met with were concerned about the financial barriers associated with their diagnosis. Perhaps this is skewed because all were covered by Medicare, and perhaps they reprioritized the concern about financials as they contemplated their limited life expectancy. All were told they had 1 to 3 years of life for their diagnosis. Spouses were not concerned about the costs of treatment either. Clearly, there was a selection bias at work here because we know that for other patients, the financial pressures are so extreme that care simply cannot be obtained.
Surprisingly, the two common threads across these patients from a financial perspective were insurance and waste. All patients highlighted the approval mechanisms for covered services as an issue. They all experienced a diagnostic test or medication that was recommended by a physician and refused by an insurer. In addition, most of them highlighted large supplies of medications at home because medications were dispensed for 90-day durations and changed. Or, they needed to undergo another diagnostic test because the results were not available.
Dignity and Respect Issues
The healthcare experience made these patients feel cast aside at a point when they already felt most vulnerable because of their diagnosis. These issues ranged from not being heard regarding their symptoms to having the least-informed team member decide whether they needed to see a physician.
The patients and their families highlighted leaving one telephone message after another for a legitimate concern, including medication side effects and intercurrent illnesses, and never receiving a return call — only to raise it with the physician at the next visit and realize the physician was unaware of the call.
All of them stated that even though they were plugged into a system of care, they had no option but to call each of the doctors on their team until someone answered and addressed their concerns.
One patient recorded the oncologist’s visit as the treatment options were being laid out. I listened to the recording. Reasonable questions involving side effects from treatment options were dismissed with a derogatory tone and arrogance that would make us all shudder. The physician ended the conversation by advocating for his recommended treatment but closed the conversation with, “You really don’t have any other options; I am among the best there is, and everyone would treat this the same way.” To which the patient responded, “If that’s the case, maybe we should find one of those doctors who knows how to care for us.”
The Here and Now
One would expect a variety of responses to the question, “What are the current challenges facing healthcare?” For me, that is not the most important part of this exercise. Even though the responses are varied, there are surely parallels between how as physician leaders, we view the current healthcare challenges and how patients and families view them.
Information technologies, outcomes, healthcare financing, pharmaceuticals, and the workforce are as important to patients and families as they are to us. In fact, we spend our time focused on these challenges because we fundamentally believe the solutions to them are essential to improving the way patients and families receive care. Similarly, coordination, financial issues, quality, dignity, and respect identified by these patients can all be included on the list of current challenges facing healthcare from the lens of physician leaders.
However, for me, what does stand out is that these five patients, and many others like them with similar and disparate diseases, may never live long enough to be impacted by the efforts aimed at improving the industry. We need to keep our focus at the macro level and ensure that we are managing the multitude of projects that will improve care over time for large segments of patients.
But we also need to be aware that each day there are people receiving care from us and our teams who may not be able to wait for these long-term fixes because their focus is on today and now. Therefore, our efforts need to ensure that important improvements at the micro level continue to occur.
Perhaps this year provides an opportunity to pause and reset our list of current challenges to make sure we are solving problems that also have a direct tactical and operational impact for those we are charged to serve: patients and families.
What is the greatest challenge affecting healthcare? Ensuring that every patient and family get the care they need to be delivered with empathy, respect, and dignity.