A urologist's experience on the patient side of care

"Being a patient has convinced me that providers do not always treat patients the way they would want to be treated," writes Robert A. Dowling, MD.

There are many excellent books and movies about doctors becoming patients. For example, in When Breath Becomes Air, a neurosurgeon author tells the story of his battle with terminal lung cancer and his perspective when the doctor-patient relationship is flipped. The physician protagonists in these tales frequently develop new perspectives on health care delivery, empathy, suffering, fear, and hope—once they are patients.

I recently became a patient and have new perspective on these matters—especially the safety, quality, convenience, and necessity of care and how caregivers communicate with patients. These views are informed by dozens of visits to primary care and specialist offices, emergency departments, small hospitals, large hospitals and health systems, ambulatory surgery centers, home health care agencies, freestanding laboratory and radiology facilities, and quaternary centers.

I would like to share some thoughts based on my experienceas a patient. Some of my observations can be blamed in whole or in part on systemic dysfunction and inefficiency in our health care delivery system. I will endeavor to focus on factors under the direct control of the provider or the patient.

Provider communication

Communication includes all the ways in which providers or their agents interact with a prospective or existing patient. Agents can include a receptionist, a website, a patient portal or app, an answering service or message on hold, a clinical staff member, a surgery or hospital scheduler, and others. If an agent is professional, respectful, and efficient, it speaks volumes about the provider. If not, it raises doubts.

In my journey, I routinely encountered major obstacles to speaking with a live person when I had a clinical problem. Two of my providers had no mechanism for answering the phone—everything was done by message or secure portal. This is an acceptable standard for my pool company but not for my doctor. Are your policies designed to help the employee or to help the patient? You can do both.

Here is an exercise that might help a provider structure an approach to optimal communications: Pretend you are a prospective patient with gross hematuria and intermittent flank pain, referred by your primary care physician. Call your office number and try to navigate the phone tree. Is it optimized for patient care (in this case, a timely appointment)? Or does the message admonish the listener to: (1) listen carefully because your menu has changed, (2) call 911 if they think they are having an emergency, (3) type the party’s extension if they know it, and so on?

If you reach an empathetic appointment scheduler, how long did it take? Take the exercise further and schedule an appointment—how far out is it? Is it safe to wait that long? Did the staff offer a mechanism for getting in earlier or speaking to a triage professional? Does the provider know how long it takes to get an appointment? Can you request or schedule an appointment on the website? Does your portal allow patients to reply? Are you communicating with patients the way you would expect if you were one? These things can be easily fixed but may not command your attention—until you are a patient.

I have learned to ask my providers and their staff during my first visit how we should communicate if I have a significant question or concern. Should I call the office, use the portal, or securely text? How long should I expect to wait for a reply? After a provider failed to return my messages, I finally faxed their office and got a return call. These are basic questions, the answers to which can set reasonable expectations for a patient. Remember that if a patient asks to speak to the provider, it is usually with good reason and seldom a yes/no question. Involving an agent is usually less efficient and likely will lead to a cascade of back-and-forth communication—all potentially avoidable if the provider speaks to the patient personally.

The emergency department

Some of my providers have viewed the emergency department as an agent of their practice, or an alternative to a timely appointment. It is neither. I have been appalled at how low the threshold is for agents to recommend going to the emergency department. Visiting it is terrifying, inefficient, and often dangerous; in the COVID-19 era, going there can be life threatening. Unless your condition involves cardiorespiratory collapse, you can face hours of waiting for evaluation, admission or treatment, and discharge. You will be asked the same questions repeatedly by a care team member who has no context for your case and whom you are likely never to see again. You are very likely in pain, or soon will be from recommended testing or treatment. If you are lucky, the emergency department may be able to contact your physician for direction and avoid an unnecessary CT scan or even invasive procedures.

Providers have little control over the inefficiencies of the system but they can avoid sending patients to the emergency department unless necessary—especially established patients. A patient’s expectations are as follows: answer my calls in a timely fashion; speak to me and thoroughly assess my condition before sending me to the emergency department; make my records available so I do not have unnecessary tests or call the department doctor proactively; follow up with me after I leave the department; treat me as you would want to be treated. I feel certain most providers who become patients would bristle at being told to “go to the emergency department.”

The safety of care

Unfortunately, my journey has taken me places that are potentially unsafe—especially hospitals. I am heartened by the attention to fall prevention, infection control, safety protocols, and patient identification that I have witnessed. I have a basic expectation that my blood sample will not be confused with that of another patient, and my experience confirms that a near 0% error rate is highly achievable with inexpensive, reliable systems in place. Sadly, this same culture and discipline are noticeably absent from many outpatient medical practices in my experience. If you were a patient, would you tolerate any potential for your blood, urine, or tissue to be misidentified? Are your staffers still writing labels by hand and getting it right 99% of the time? What if you were the 1%?

The COVID-19 pandemic has raised public awareness about contagion, respiratory illness, and infection control practices. Since early 2020, patients have faced a simple question in deciding whether to get care: how likely am I to contract COVID-19 in a health care setting? This is the calculus for patients seeking preventive care, elective care, and even cancer care. For urgent and emergent care, patients may have no choice. Patients have an expectation and even a right not to be harmed in a health care setting; it can be incredibly comforting to see people attentive to handwashing, proper mask wearing, glove changing, or maintaining sterile technique. Lapses in these areas send a very different message.

In my journey as a patient, I have encountered both ends of the spectrum and wondered how that can happen in 2021 in a health care business. As I write this, most hospitals in my region have mandated COVID-19 vaccines for all providers and employees. Sadly, most medical and dental practices have not—many out of fear that staff will leave. Although many patients do not even think to ask, I can report that some patients who find out their provider or their staff are willfully unvaccinated will also leave. As a patient, I find it unacceptable that providers would elevate the wishes of unvaccinated staff above those of their patients in a pandemic—no matter the cost. If you were a patient, would you insist on your provider taking every reasonable precaution to protect you?

Telehealth is a patient safety tool as well as an efficient method of care delivery (for the patient). Most of my providers have a telehealth option; I appreciate the benefit of receiving advice and care without the risk of contracting COVID-19 when appropriate and for as long as my insurance company will cover. Other providers have suspended telehealth after characterizing it as “too complicated.” If you haven’t embraced telehealth, please consider whose interests you have prioritized—is it the patients’? Would you rather have a consultation from your provider on terms that are convenient for them, or safe for you?

The quality of care

Having spent most of my professional career trying to understand and improve quality of care delivery in physician practices, I now have the perspective of a patient. Patients have few objective tools with which to evaluate quality when choosing a provider; they typically rely on reputation, word of mouth, and other subjective measures. Patients have no access to process metrics or outcomes like readmission rates, complication rates, etc. When I logged onto Physician Compare, I could find out almost nothing about my providers. Choosing a doctor or hospital in 2021 is largely a leap of faith, not of transparency. Once you become a patient this is frustrating, especially if you have a complex problem.

After you have chosen a doctor or hospital, you will probably be invited to evaluate them with a survey instrument but you may wonder whether your contribution will be noticed. The survey is an assessment of their communication skills and perhaps their customer service. One of my providers implored me to give them “a good rating” because their compensation depended on it. Another said to me, “You know Big Brother is watching.” Patients would welcome a system that rewards their providers for spending time with their patients, listening to their concerns, and explaining things clearly—a system that providers embrace, not disdain. I hope today’s exception is tomorrow’s rule.

I made some incorrect assumptions during my journey. One was that my surgeon would care for me postoperatively; instead, I was transferred to a hospitalist service. I don’t know how common this is across the United States in surgical care, whether there is information about the quality of care in one model vs another, or whether it affected my outcome. I think most patients would expect their surgeon to be in charge after an operation.

When patients have bad outcomes, their needs and perspective about quality change profoundly. A treatment failure, complication, or bad outcome is deeply personal for a patient; it can lead to fear, depression, and worse. Their provider may show empathy or even regret and strengthen the patient’s confidence. On the other hand, the provider may distance themselves, destroying patient confidence. These behaviors might be part of a “risk management” approach for providers, but I can report that they are very real determinants of whether a patient will trust their provider going forward.

A word about “informed consent”—to a provider, informed consent is a legal doctrine including a documentation process that, properly done, may protect the provider from liability for a bad outcome. To patients, informed consent is a counseling standard that ensures they know why a treatment has been recommended, the expected outcome, the risks of an unexpected outcome or complication, and any reasonable options. Informed consent may involve a form, but it is not only the form. In my journey as an outpatient and an inpatient, I was routinely subjected to medical and surgical procedures and treatments where the consent was: (1) handled by an agent, (2) disclosing major risks that had not been discussed with me, (3) on a form I was asked to sign minutes before the procedure with no ability to ask questions of the provider or change my mind, and (4) usually when I was lying down. My perspective is that the consent process has refined all the elements to protect providers and none of the elements to reassure patients that they have been thoroughly counseled. This is unnecessary and permitted for the convenience of providers. I hope you will look at “informed consent” in your practice and see whether it considers the interests of an anxious or frightened patient who has placed trust in you.

Bottom line: Being a patient has convinced me that providers do not always treat patients the way they would want to be treated. Some may see this as an unavoidable compromise in a dysfunctional system over which they have no influence; I see that as an excuse, or maybe a symptom of burnout. My experience has taught me there are many opportunities for positive change that require no significant investment of money or time—only for the provider to wear the patient’s shoes. Take a fresh look at how you communicate, maintain a safe environment, and ensure optimum quality in your practice—you could be the next patient.