A 50-year-old, moderately obese patient walks into a medium-sized medical practice in New York and asks to see a doctor. He’s been having nagging chest pains and is concerned, naturally so, about a heart attack. He never reaches the inner sanctum of a consulting room or gets to see a doctor. He is refused access to the clinic, despite a heated argument with the receptionist, as he is unvaccinated against Covid-19.

The receptionists have clear orders from the practice managers. Without conclusive proof of vaccination against Covid, patients are to be denied access to a doctor.

The patient makes his way back to the parking lot but never makes it home. Sitting in his hot car in the lot, trying to catch his breath, that chest pain returns and he suffers a fatal heart attack.

Scenario 2

A patient, let’s call her Gail, suffering from Covid symptoms and respiratory distress is taken to a hospital in a small town in Texas. There is a wave of Covid sweeping the town and only one bed remains open in ICU. Gail and another Covid patient wait on gurneys in the entrance hall, desperate to be admitted. Nurses evaluate the two individually and discover Gail has not been vaccinated, despite being over 60, obese, and suffering from a heart condition.

The other patient, also in respiratory distress, has been vaccinated. Hospital guidelines are clear and the nurses respond accordingly. Survival rates are far higher for vaccinated Covid patients. Gail is told she will need to return home and the bed is allocated to the vaccinated patient. The odds of him recovering are stacked in his favor, the outlook for Gail is poor. She dies at her home, 48 hours later.

The complexities of care

I’ve provided you with these two fictitious, yet practical examples of how care may be denied to Covid patients based solely on their Covid vaccination status. The reasons for the examples are twofold. Firstly to highlight the possible consequences of decisions made to withhold care and secondly, to highlight the complexities and nuances of the topic.

What if, in scenario 1, the patient had experienced his heart attack in the waiting room rather than in his vehicle? Would the medical staff simply have stood by idly and watched the patient die or would they have administered care, in contravention of their own policy? I tend to think the latter and most doctors would support this view.

There is a vast difference between emergent care and someone simply shopping for a doctor.

When, for example, ICU beds in hospitals are in short supply, unofficial triage protocols dictate that care be prioritized for those who display the greatest potential for survival. Sadly for the unvaccinated, their survival rates for severe Covid are terrible when compared to the vaccinated.

Most of us assume doctors are oath-bound and ethically obliged to provide care to any and all patients, but the truth is, as always, a little more complex than that.

In August of this year, the debate went public when an Alabama family doctor posted a sign on his office door that stated, as of October 1, he “will no longer see patients that are not vaccinated against COVID-19.” The doctor then sent letters to his current patients saying, “I cannot and will not force anyone to take the vaccine, but I also cannot continue to watch my patients suffer and die from an eminently preventable disease…

The topic of refusing care has become so contentious in pandemic afflicted America that in September the American Medical Association (AMA) intervened, issuing a strongly worded statement on the matter.

In general…a physician should not refuse a patient simply because the individual is not vaccinated or declines to be vaccinated. The commitment to care for those who are sick or injured carries with it a duty to treat in other circumstances as well, including public health crises when a physician may face “greater than usual risks to [their] own safety, health or life…” Nor may a physician ethically turn a patient away based solely on the individual’s infectious disease status, or for any reason that would constitute discrimination against a class or category of patients.

Oaths, Duties, and Guidelines

The AMA statement was however qualified by the inclusion of the following extenuating conditions that the Association suggested may be considered when assigning care.

• It may be ethical for a physician to refuse to treat an unvaccinated patient if accepting him or her “would pose a significant risk to other patients in the practice”.
• If meeting the individual’s medical needs would ‘seriously compromise’ the physician’s ability to provide the care needed by their other patients.”

The American Medical Association Code of Ethics further muddies the water, creating contradictions when it comes to guidelines regulating the provision of care. Section VI of its code reads,

“A physician shall, in the provision of appropriate patient care, except in emergencies, be free to choose whom to serve, with whom to associate, and the environment in which to provide medical care.”

So that part encourages the physician’s right to choose. Then, in section IX of the code, it says the following,

“A physician shall support access to medical care for all people.” [emphasis added]

So which one is it, and how do individual doctors decide which sections are applicable, given the ambiguity? Another recent opinion by the AMA states that,

“Physicians may not decline to accept a patient for reasons that would constitute discrimination against a class or category of patients.”

Again, it’s not a hugely specific statement and fails to provide a definition for either class or category. Is the AMA Code referring specifically to race, gender, sexual orientation, and similar demographic features? Could one argue that the unvaccinated constitute a class or category?

The Hippocratic oath, taken by all doctors, doesn’t help much to clarify things either, as it doesn’t specifically address the issue or provide a direct answer to the question. What Hippocrates does offer is a more generalized statement that many interpret to mean care for anyone.

“Into as many houses as I may enter, I will go for the benefit of the ill…”

Physician Steven H. Miles, the author of the classic The Hippocratic Oath and the Ethics of Medicine, notes that “…people from all walks of life sought out and paid Greek physicians for health care. Cobblers, vine tenders, shepherds…soldiers, potters, prostitutes…[and] slaves…”. It would therefore appear that Hippocrates was in favor of providing unconditional care to any and all.

The ‘doctors are just human beings’ aspect

It’s a part we often overlook and yet, it plays a huge role in this debate. Your provider is a person just like you, subject to all the emotions you experience. Emotions like anger, frustration, and recently, for many doctors, pandemic-induced exhaustion, are dealt with on a daily basis.

Most medical practitioners perceive the vaccines as their only effective tool to curb and control the spread of Covid-19 and they, unlike you, have to deal directly with the deaths of those who refuse it. They watch unvaccinated people die from severe Covid, over and over again. It’s like Groundhog Day for viruses.

They see their other patients refused beds in ICU and dying from non-Covid related emergencies simply because the unvaccinated are occupying the ICU beds. Many doctors see you, the unvaccinated, as having blood on your hands.

In short, these doctors are fed up, frustrated, and at the end of their tethers.

If, the doctors argue, you aren’t willing to do this one simple thing to protect yourself, why should they bother to help you and potentially expose their other at-risk patients to potential death? It’s an argument that ignores certain key issues surrounding vaccines, but it is a more than natural human reaction to our current situation and a key factor in the provision of care that cannot be ignored.

So where does that leave the unvaccinated?

Legally, your doctor can not be forced to provide you with care. There is no service offered anywhere, in any industry, that is not provided subject to certain terms, and medicine and health are no exception. Morality and ethics aside, any medical professional can choose to decline care and cite any number of reasons for it.

Add morals and ethics to the mix however and the situation changes. Doctors and caregivers who place their patient’s needs at the heart of their practice will be far less inclined to withhold treatment for their patients, irrespective of the patient’s vaccination status. As with HIV in its early days, some doctors will allow fears for their personal safety and human bias to affect their decision to provide care.

If you are unvaccinated, you will find certain providers, clinics, and practices less than receptive to accepting you as a patient. Luckily for you, a little shopping around will soon enable you to find a doctor who is more than happy to provide you with care. If the doctors place their faith in the vaccines, as most do, what risk then do you pose to them?

If however, you turn up unvaccinated at an overcrowded hospital in search of a bed and a vacant respirator in ICU, you’re probably going to be right out of luck.

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Fatigue and overwork have entered the equation, as it always has, and we should have remediation currently, but do we? Hurriedly rushing to complete chart notes is no excuse for including inaccuracy, not including information, or entering unintended bias in an attempt to meet the timely completion of a healthcare professional’s daily workload.

It would seem that electronic records would eliminate powerful and potentially damaging information, or lack thereof, from the chart record.

Patients too often never had access to their records, but that is changing in our new electronic health records decade where patients can access “patient portals” and review what has been immortalized. Formerly, patients had to request hard copies of patient summary visit notes, which weren’t always forthcoming.

One neurologist who didn’t know his summary would be read by a patient who came for a consult presented a dim view of the woman. He referred to her as a “mirthless woman” and proceeded to go downhill from there.

A recent study of 600 encounters with 138 physicians appeared in a prestigious medical journal. The study found six ways that physicians “express part of positive findings toward patients in medical records, including comments, approval, and personalization.”

However, in addition to these laudatory comments, the researchers also found five ways medical professionals “express negative feelings toward patients, including disapproval, discrediting, and stereotyping.”

How may the latter affect those healthcare professionals who read these chart notes in the future? The question almost doesn’t need to be asked because we already know the answer; negatively.

The Power Differential in Healthcare

The current study was revealing in its negative comments, which will affect future readers of these charts.

Negative themes noted in the 600 encounters notes included:

questioning patient credibility

expressing disapproval of patient reasoning or self-care

stereotyping by race or social class

portraying the patient as difficult

emphasizing patient authority over the physician authority over the patient

Physician authority over the patient? Isn’t this supposed to be a working relationship with the patient and the physician, who both come to an understanding? One is not in a position of one up, while the other is always in a one-down position, or are they? Is this an artifact of the study or reality-based in all areas?

It reminded me of a time when I was standing with a family next to the bed of a hearing-impaired woman who was gravely ill. Her hands had been tied to the bed rails, prohibiting her use of ASL. This was done despite a clear sign over her bed which indicated she was hearing-impaired.

A young physician came in and didn’t like that the family told him the patient had not signed consent for treatment and needed to use her hands to communicate. “I don’t care what you say,” he said. “You can talk to me until you’re blue in the face, and I’ll do as I want,” and with that, he stormed off.

After the woman died at another hospital to which she had been transferred once she developed sepsis, the hospital, which a surgeon owned, was charged with insurance fraud (they had an unnecessary surgical procedure gambit running with shelters for men), closed, and opened with a new name afterward. So much for change.

Which groups receive poorer quality of care than others according to certain factors in the medical record? They have included racial/ethnic identity, social class, older adults, individuals with low health literacy, obesity, and substance use disorders. There are also problems in a person’s language ability that can affect medical outcomes.

In one study, 655 emergency medical physicians used the term “sickler” which indicated the patient had sickle cell disease. Language, hearing, or reading ability also contributed to problems in the medical record.

The most recent study also stated that “Readers of stigmatizing (vs. normal) language had more negative attitudes toward the patient and opted to administer less analgesia, even though all clinically relevant information was the same.”

Bias, therefore, was shown even in the administration of pain-relieving medications (the ‘sicklers’) as a result of a note in the chart. Should patients have suffered this way? Undoubtedly, the answer is in the negative. But this was particularly noted in sickle cell disease, which would indicate a racial bias of the writer. Do medical professionals believe that Black patients need less pain medication than white patients? I would advise you review this in the medical literature or is it a question of medical training?

The documentation of any medical information must be devoid of anything but relevant medical information that contributes to the treatment and diagnoses of patients. The problem appears to stem from an inability of supervision in this area because of the crush of business that hospitals have brought on themselves.

How will electronic health records serve as a means to curb this type of behavior? Unless artificial intelligence reaches a level that can clearly distinguish between utilitarian information and unnecessary personal bias, it will continue. The continuance of this heinous behavior is one of which everyone in healthcare must become fully aware.

We must do our best to ensure that records are clearly scientific-based and avoidant of personal biases. There is no excuse for writing records that may damage the patient in the future. In fact, this diminishes the profession as a whole and must be countered; however, we must do it.

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“The cost of a thing is the amount of what I will call life which is required to be exchanged for it, immediately or in the long run.” – Henry David Thoreau

Have you ever changed your mind? Your patients do it all the time. Furthermore, they do it throughout their plan of care. You may have nailed the initial visit by asking all the right questions, developing well-reasoned goals, and fostering the beginning of a magical patient-therapist relationship, only to have it all come crashing down in a couple of weeks because the patient changed their mind on everything.

Sometimes this is the result of you being so awesome at your job and Exceeding Expectations that they develop new expectations they previously thought were unattainable. If you keep striving for the original goals and never discuss the updates with the patients, you will find their frustration mounting and frequently stating “it’s fine” when it is clearly not fine (in case you were wondering, it’s never fine when someone uses that phrase…ever).

Patient and therapist expectations often differ

Now, this does not mean we should strive for mediocrity to protect ourselves from setting up a patient with unreasonable expectations. Instead, this highlights the importance of continually seeking to understand your patient throughout the plan of care. This is different from constantly asking them their status with negative framing. Frequent use of “how does that feel?” or “how are you feeling today?” routinely fosters hyper-focus on any unpleasant sensations or difficulties. Instead, ask them about their perceived progress, highlight the areas they have improved upon, and revisit their goals.

You may find hidden frustrations around the perceived lack of progress despite your assessment that the patient is on track. The patient may expect the same rapidity of improvement while you expect more of a leveling off in the next couple weeks or perhaps even a temporary small step back with the increasing difficulty of exercises. You will find greater trust and engagement if there is alignment on the plan of care of expected outcomes. This is only scratching the surface of patient expectations and their drivers.

Would the patient classify your treatment as valuable?

Brain imaging shows that when someone perceives they were ripped off; they have activity in regions associated with disgust and pain. Conversely, when people perceive they received a good deal, it is a pleasurable event. How does this apply to physical therapy? Simple, we provide a service in exchange for money, time, and effort.

While we may want to avoid the financial piece of PT, it is a primary influencer of every treatment session, especially if the cost of care stretches the patient financially. The cost and value of a service are relative to each patient. A $25 copay may be expensive and challenging for one patient while a $300 payment (prior to meeting their deductible) may not faze another. I am not saying the quality of our care should be influenced by this perceived value, as we should provide the best quality possible each session, but we must understand patient expectations may shift with the relative cost. The patient may expect to be cured in one visit if they perceive the cost to be high. You want to know if you are fighting an uphill battle from the onset.

Negative emotions often outweigh positive ones

When assessing a patient’s expectations of care, we need to consider their current emotional state as well. Negative emotions and negative feedback often have more impact than positive ones, and negative information is processed more thoroughly than positive ones. The self is more motivated to avoid negative self-definitions than to pursue positive ones. Negative impressions and negative stereotypes are quicker to form and more resistant to disconfirmation than positive ones. In a nutshell, negative emotions are typically stronger the positive emotions.

While this is not universal to all people and all situations, we have likely experienced this during patient care and witnessed patient perseveration on the negative information they received (e.g. their MRI report). The information a patient receives prior to starting PT (e.g. imaging report, the media, their referring physician) and the information a patient receives in PT (how weak they are, poor mobility, crappy squat mechanics) can weigh them down and reshape expectations. There are many ways a patient can decide to cope and respond to this information. One of these strategies is loss aversion.

“I knew I shouldn’t have done that”

Could of, should of, would of…I heard this phrase often as a kid. My father would say it after my incessant complaining about some boneheaded move. Instead of focusing on the past, we need to learn from it and focus on the current situation and future investments. This is easier said than done. As Richard Feynman said,

“A rational decision-maker is interested only in the future consequences of current investments. Justifying earlier mistakes is not among the Econ’s concerns.” We can all benefit by channeling our inner economist.

Frustration can mount rapidly when reviewing an undesirable outcome and knowing you were responsible. Often the frustration is greater for the outcomes we are able to control versus the ones we cannot. This phenomenon is referred to as loss aversion. When directly compared or weighted against each other, losses loom larger than gains. It is important to define a “loss” and a “gain” as those can be subjective.

We have to define success to measure it

Outcomes better than the reference point are gains, while outcomes worse than the reference point are losses. Reference points are key for most assessments. For example, our assessment of a test grade substantially changes once we know what the grading scale is (i.e. an “A” being 90-100% vs. 94-100%). In treatment, the reference point may be predicted improvement in FOTO outcome measures or the MCID of a pain scale.

Daniel Kahneman wrote that “Loss aversion implies only that choices are strongly biased in favor of the reference situation (generally biased to favor small rather than large changes).” So, how does this apply to patient care? It can lead to very reserved expectations as a means of psychological protection. Instead of using an outcome tool’s MCIDs or patient goals, we use the status quo, or current medical condition, as the reference point. If the patient improved at all, we deem the treatment a success rather than needing to meet a specific level of improvement.

The more challenging the goal, the easier it is for us to fail to achieve it. It is easier to justify not achieving a goal by failing to act than by trying and failing. Loss aversion is a powerful conservative force that favors minimal changes from the status quo in the lives of patients and clinicians. People expect to have stronger emotional reactions (including regret) to an outcome that is produced by action than to the same outcome when it is produced by inaction. Going back to patients, this can impact their willingness to fully invest in PT, especially if they have experienced failed treatment before. It is easier to justify failure when we don’t make the effort.

How to combat loss aversion and hesitancy

One method to address loss aversion is broad framing, which is approaching a situation with a ‘big picture’ lens as opposed to looking at each event in isolation. For example, loss aversion typically homes in on a single reference point, such as returning to the soccer field. Broad framing would highlight all of the progress made and frame setbacks as opportunities and lessons for future development. Conversely, loss aversion and narrow framing is a lethal combination. While loss aversion and negative emotions can significantly dampen expectations, there are instances where a lack of expectation ‘control’ can negatively impact the assessment of the true benefit or harm of intervention.

Patients often over-estimate treatment benefits and underestimate treatment harm. This can lead to rash decisions (such as pursuing a risky intervention or prematurely ending a plan of care).^[1] Many studies have demonstrated individuals work significantly harder to achieve a goal compared to exceeding one. One is success vs. failure (achieving the goal) while the other is a cherry on top (exceeding the goal). This can impact the desire of a patient to resume PT once they achieve a primary goal, despite your knowledge they can achieve even greater outcomes or vice versa. On the flip side, a clinician may lack interest in a case if they perceive the patient has achieved sufficient improvement.

When trying to determine a patient’s expectations of PT, it can be helpful to understand how they developed those expectations and what information may assist or hinder the development and refinement of new expectations. Let’s take a look at four categories of expectations.

Predicted Expectations

The first is Predicted expectations, which are what the individual believes will occur. Many studies have highlighted a link between expectation and clinical outcomes for individuals experiencing musculoskeletal pain.^[2] Predicted expectations, both positive and negative, have a direct relationship with musculoskeletal pain. These expectations will be heavily influenced by the information the patient receives – such as from their referring physician or social media – prior to starting physical therapy.

Ideal Expectations

The second is Ideal expectations, which refer to a patient’s desire and hope. Essentially, they are what an individual wants to occur, while predicted are what an individual thinks will occur. Many patients will not share these as they believe they are not attainable and will lead to disappointment. I recommended asking. If they are attainable, and you help the patient achieve them, you will have an advocate for life

Normative Expectations

Normative expectations are what the patient believes should occur. While little is known of impact normative expectations have on clinical outcomes, it does appear to play a role in patient satisfaction (or dissatisfaction if you fail to meet it). These are heavily influenced by the value proposition. If the commute time is long, the cost of care is high, or you come highly recommended, the patient will likely expect rapid, superior outcomes.

Unformed Expectations

Lastly, we have Unformed expectations. These are the expectations an individual is unaware of or is unwilling or unable to express. This could be to a lack of previous experience or education necessary to form an expectation, or it could be the result of an activity being habitual and the patient hasn’t taken the time to develop an expectation.

Addressing expectations in the clinic

It is important to remember that expectations can change, even if you do everything right. For example, you may exceed a patient’s expectations and achieve one-month goals in only two weeks.

Great!

Then the law of unintended consequences strikes. Know the patient will expect the same rapidity of improvement the rest of the plan of care. This is why constant communication and reviewing of goals is necessary. Not just on progress note days but instead every session.

Everyone will have unique tweaks to their methodology for developing rapport with patients and assessing their expectations. Additionally, it is important to recognize your own expectations. Patients can be quite perceptive, and our body language often betrays our words. Studies have shown that when our verbal information, visual cues, and body language do not match, it sows distrust in the patient-therapist relationship.^[3] Like motivational interviewing, understanding and assessing patient expectations is a skill to develop. It can have significant impacts on the compliance with a plan of care and the outcomes a patient achieves.

References
Hoffmann TC, Del Mar C. Patients’ expectations of the benefits and harms of treatments, screening, and tests: a systematic review. JAMA Intern Med 2015;175(2):274-86. doi: 10.1001/jamainternmed.2014.6016 [published Online First: 2014/12/23]

Bialosky JE, Bishop MD, Cleland JA. Individual expectation: an overlooked, but pertinent, factor in the treatment of individuals experiencing musculoskeletal pain. Phys Ther 2010;90(9):1345-55. doi: 10.2522/ptj.20090306 [published Online First: 2010/07/02]

Daniali H, Flaten MA. A Qualitative Systematic Review of Effects of Provider Characteristics and Nonverbal Behavior on Pain, and Placebo and Nocebo Effects. Front Psychiatry 2019;10:242. doi: 10.3389/fpsyt.2019.00242 [published Online First: 2019/05/01]

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