Who to believe? Medicine faces erosion in patient trust, an essential ingredient of good care

True story: A doctor who specialized in end-of-life care was called in to advise a dying patient’s spouse who was pushing for a planned procedure. Don’t do it, the palliative care doctor said;  waking her dying and heavily sedated husband to insert a breathing tube would not prolong his life so distant family members could make final visits. Rather, the intubation would cause him great pain and a sensation akin to drowning.

The wife, whom the specialist had never met before, reacted badly. She refused to believe the medical recommendation and rejected it.

This event is real and was recounted in a recent New York Times Op-Ed. The author also laid out what has become a bigger problem of modern medicine: the collision between trust and skepticism.

As the doctor described it, this clash is harmful not only for society but also for the individual treatment of the ill and injured. As frontline practitioners, thoughtful researchers, and major medical organizations wrestle with this issue, it also is vital for patients to understand the stakes involved, and how to negotiate what can be a difficult balance between being an active questioning patient and taking skepticism to a harmful excess.

Americans in the 21^st century have access as never before to astonishing amounts of expertise of all varieties, notably in science and medicine. But these days also will go down  as a time when U.S. society took a step backward in its regard for true expertise, and the ability of many people to tell the real from the fake.

The public now espouses more doubt than ever in traditional experts, warns Dr. Daniela J. Lamas, a pulmonary and critical-care physician at Brigham and Women’s Hospital in Boston. In what is a growing worry voiced in many parts of contemporary medicine, she wrote in the New York Times:

“[T]he medical system is no longer an institution to be trusted. We are at a crossroads in medicine when it comes to public trust. After a pandemic that twisted science for political gain, it is not surprising that confidence in medicine is eroding. In fact, trust in medical scientists has fallen to its lowest levels since January 2019. As a result, more people are seeking out less conventional voices of ‘authority’ that hew closer to their beliefs. Robert F. Kennedy Jr., a longtime vaccine skeptic campaigning for the presidency, is finding double-digit support in some polls and has made medical freedom a recurring theme of his candidacy.”

Trust, as Dr. Lamas wrote, is a cornerstone of medical care. That is also the view of the policy group Academy Health and the foundation of the American Board of Internal Medicine. They have made this issue the focus of a major, multipronged campaign. As the foundation’s leaders wrote in a medical journal editorial:

“Few would deny that trust is necessary for the proper functioning of the health care system, beginning with the trust that patients place in the physicians and other clinicians who care for them, often during times when they are particularly vulnerable. In recent years, however, it has become clear that such trust cannot be assumed … We see a discouraging decline in trust on multiple fronts. In 1966, 73% of Americans said they had great confidence in the ‘leaders of the medical profession’; only 34% said so in 2012. In 2015, only 37% of the public told Gallup that they had a ‘great deal’ or ‘quite a lot’ of confidence in the medical system, compared with 80% in 1975. This made ‘the medical system’ the ‘biggest loser,’ suffering the largest decline in trust among all institutions covered in the poll …

“Americans think highly of the care they receive from their own physician but are more skeptical of physicians as a class. the United States ranked 24th in the percentage of patients who agreed with the statement ‘All things considered, doctors in the U.S. can be trusted.’”

The need for patients’ trust is a topic borne out in practical experience and increasing research. Dr. Lamas described it in pragmatic terms:

“We tell patients things about the body that are unseen. We recommend lifestyle changes and medication to treat or to prevent problems that may not be felt. Surgeons refer to a profound version of trust called the surgical contract: the idea that when people go under the knife, they are allowing their surgeon to make them sicker — to cut them open — in order to make them better. That trust must be earned. In emergencies, patients don’t have the luxury to choose whom to trust, and medical decisions must happen hastily, in minutes even. So, part of our job is to build rapport quickly.

“That becomes harder, impossible even, when we enter into the climax of a medical crisis to find that whatever trust our patient may have once had long ago has been eroded. Many of our patients started their medical journeys wanting to believe in their doctors. But then the medical system that they wanted to trust failed them, in small ways and large, from haphazardly rescheduled appointments to real medical error.”

Researchers have shown how our beliefs influence our health and medical outcomes, for example, in the power of the placebo and nocebo effects. If we expect prescription medications (or medical treatments) to benefit us, they can — even if tests show that inert substitutes sometimes perform as well. If we aren’t sold on these, they also may fail, even if they are known to produce positive outcomes.

Further, research and real-life experience argues that seriously ill or injured patients must, as part of their medical care, trust that they will recover and have hope and optimism about their prospects. Despair and hopelessness can contribute to negative outcomes.

Because so many factors play into medical care, it can be difficult to tease out the exact role of patient trust. But the growing body of studies shows that trust plays a crucial role in patients’ perceptions of the quality and effectiveness of their treatment — and these two aspects are prized components in ensuring the excellence and improvement of medicine. As one meta-analysis of existing research on the issue, published in 2017, reported:

“Across diverse clinical settings, patients reported to be more satisfied with treatment, to show more beneficial health behaviors, less symptoms, and higher quality of life when they had higher trust in their health care professional … Although further studies are required to test the direction of the association between trust and health outcome, trust in the health care professional may not only be a [morally obliged] constituent of clinical care, but it might also be consequential for patients’ treatment satisfaction, health behaviors, symptom severity, and quality of life.”

Gullible, skeptical, nihilistic — patients approach modern medicine on a spectrum. But moderation matters, and there are significant reasons to reject extremes.

As the Gallup polling shows, patients in this country once held doctors in high esteem. Television series like Marcus Welby, M.D., projected doctors as warm, compassionate, caring, Father-Knows-Best to the point of nearly God-like. In days of yore, with much of the nation rural and doctors few and far between, patients accepted the Doc who showed up at the house and did the best he could under tough circumstances. The bad stuff about medicine maybe got ignored.

Fast forward to a more recent time when enlightened doctors and other medical professionals, hospitals, and researchers, as well as patient safety advocates, advanced a more balanced view.  Less paternalism, more we’re-all-adults-here. Condescension out, straight talk in.

This flows from the realization that we’re all human, doctors included.  Most medical professionals are excellent, well trained, knowledgeable, caring, and careful. Good physicians provide patients with the best information possible and invite them to take a greater role in the decision-making about their medical care. They encourage questions — even skepticism — about proliferating prescription drugs and medical tests and procedures, many of which evolved from practice and too often without rigorous evidence for their effectiveness.

Here is how Dr. Lamas described an enlightened approach to medical decisions:

“In medicine, we talk about the idea of shared decision-making, in which medical decisions are arrived at jointly by doctor and patient, in contrast to the paternalistic tone of years gone by. As doctors, we do not tell our patients what to do — instead, we offer them the information necessary for them to choose the path that is right for them.”

But many experts — as well as the rest of us — now recognize that the coronavirus pandemic upended rational, evidence-based medicine. Social media, the internet and exploitative public figures unleashed a flood of misinformation and falsehoods.  Many purveyors of bunk claim just to raise questions and to be appropriately skeptical — while actually peddling a destructive nihilism, i.e., the idea that there are no real experts and my opinions are just as good as yours, no matter what the evidence.

The coronavirus was a novel infection, an outbreak involving a virus that medical scientists and doctors had to learn about with break-neck speed in dire circumstances. But the deadliest scourge in a century opened the door to furious assaults in an area in which medicine has made some of its most impressive advances: infectious diseases and their prevention and even eradication by vaccination.

The results of these assaults have been measurably disastrous, especially for the most vulnerable. And the skepticism that prevailed about Covid care — especially among anti-vaccination zealots — has spread and degenerated into a cauldron of conspiracy theories and destructive spewing about not just the coronavirus but also science and medicine at large.

Too many parents are putting their children — infants, toddlers, and teens — in harm’s way by hesitating about and skipping life-changing and life-saving vaccines.

Educators are seeing the falling percentages of youngsters getting legally required shots to be in public schools. Doctors and public health officials are recording outbreaks of infections that are preventable or were previously much smaller due to widespread vaccination and the creation of protective “herd immunity.”

Doubters of what we say here should learn how detrimental “common” infections like measles can be over a lifetime. They should reexamine the significant harms caused when – to take one example –  Kennedy flew to Samoa to raise doubts about vaccination.  That infamous trip led to the needless spread of disease and deaths there — and elsewhere, as an investigation by the Associated Press has detailed.

Let’s also not forget that researchers found Donald Trump, the nominee of a major political party, to be a “super spreader” of wrong and harmful health, medical, and other information during his presidency. Alarms are sounding anew about the anti-vaccination and anti-science views Trump and Kennedy espouse after a recorded conservation between them became public.

The “nation’s doctor,” Surgeon General Vivek Murthy has warned about social media’s corrosive effects on young folks’ well-being and mental health. Add to that toll the seemingly more frequent and urgent campaigns that parents, doctors, public health officials, and other experts must wage against nonsense flooding social media channels about wrong and injurious health practices. These include  “challenging” teens to get intoxicated on Benadryl, urging them to use ordinary electronic-device chargers to fuse pennies in household electric sockets, or promoting dangerous practices like staring into the sun and forgoing protective sunscreens.

How can parents, teachers, doctors, public health pros, and others combat the online “influencer” onslaught — and how does expert knowledge and experience hold its credibility and sway in the days ahead?

Medical mistrust, of course, also has deep roots in historic abuses and neglect by traditional medicine. These have been inflicted on the poor, members of minority groups, women, and other disenfranchised and disadvantaged peoples. Some of these patients were subjected to unacceptable medical experimentation (as occurred with the Tuskegee syphilis study) or were shunned when most vulnerable (as occurred during the HIV-AIDS crisis). The male-dominated world of medicine has reacted poorly and far too slowly to the differentiated needs of female patients, causing grievous harms on them with unchecked (for too long) sexual abuses (see the long string of cases involving gynecologists at prominent universities and athletic programs nationwide) and alarming, invasive, and painful procedures.

Dr. Lamas is quotable about other harms caused by medical mistrust, writing in her Op-Ed:

“Distrust can lead doctors to burnout and can encourage avoidable negative outcomes for our patients. This is partly what is driving increasing rates of measles among unvaccinated children, failure to follow recommended cancer screening and refusal to take lifesaving preventive medications. There are no easy solutions here. But if we do not find ways to restore and strengthen trust with our patients, more lives will be lost …

“Medical skepticism is not the same as medical nihilism. The data behind the drugs doctors prescribe and the decisions we make need not be the purview of us alone; the public has the right to review the numbers and to make their own decisions about risk and benefit. But when that skepticism shifts into abject and irreparable disbelief, we see some patients make dangerous decisions. And when doctors respond with frustration, that only further separates us from those patients.”

Bottom line: Skepticism is fine, but respect is a necessary ingredient too in the doctor-patient relationship.

Patients will play a big part in closing the chasm of trust and skepticism in contemporary medicine.

This occurs when they hold their caregivers accountable, including by speaking up for themselves and staying away from the bad and misbehaving. Patients in this country spend the most in the world for their medical care, and they should get the highest value for their precious dollars.

This newsletter recently delved into ways that regular folks can find doctors and other medical providers in the modern digital era. That article also quoted research about key characteristics we say we demand of good doctors, notably that they:

§ take the time to really get to know us
§ listen to us
§ and speak plainly, clearly, and frankly about our health, illnesses, and injuries.

(Doctors themselves know that these fundamentals are vital to building the trusting relationships they want with patients).

If patients have researched well and found doctors and other providers that seem to meet their needs, they can help them and themselves with important steps. If we want doctors to get to know us, we must play our part. It’s smart to find a primary care doctor who will lead your medical care. Schedule regular appointments with your primary and other specialists, if needed, and keep them. Keep a notebook, especially if you have chronic conditions or sustained injuries, to record important developments in your health. Exactly when did you feel dizzy or experience that pain? Did something trigger your racing heartbeat or spike in your blood pressure?

If you are getting a lot of information about a complex medical matter, find a trusted person — your spouse or a close friend —  to sit in on your appointment and, if needed, to ask questions on your behalf.

Jot down queries you may have for your doctor ahead of time. Before you see her, try to prioritize your concerns for your discussion. Sure, it is good to educate yourself with online searches and reading of factual, evidence-based, and reliable sources of medical information. That is unlikely to be an account on Facebook, X (formerly Twitter), TikTok, or other social media.

Be respectful, however, that you have chosen to be a patient of given providers, notably because of their academic backgrounds, extensive professional training, and considerable experience in their field. By all means, question them about their medical recommendations and practices. Ask them about the costs of drugs, tests, procedures, and alternatives if any of them discomfit you.

Then, please, see what happens by following the doctor’s orders. Fill those prescriptions and take the medications as directed. Does your illness or injury at least stabilize, or does it improve? Do you feel better and do those close to you see that you are getting better? If not, does your physician have answers? Do you want to stay with this practitioner or is it time to try another?

When discussing your medical status, keep perspective about your layman sleuthing. Locker room chatter or gossip swapped at the PTA does not carry the same weight or role in your medical treatment as the careful, rational, and reasoned judgment of your chosen doctor. Please think twice, look at medical information closely, and don’t become a misinformation or disinformation spreader.

And, by the way, don’t look down on or fail to take advantage of the other highly trained providers in the doctor’s office. Nurses, physician assistants, and other medical staff increasingly hold considerable training and experience that can benefit your care. Be sure to check out the credentials and credibility of these medical personnel, whose increasing numbers has raised concern among patient safety advocates.

While in any treatment room, you can insist that anyone present do the basic thing: introduce themselves and explain how they are part of your treatment. A name badge isn’t enough. Good medical staff know this.

As mentioned, doctors are human. They can have bad days — and we try to take them in stride. But if your medical providers fail to win your trust — by being too harried, uncommunicative, uncaring (perhaps about the necessity for and cost of certain prescription drugs, medical tests, or treatments) — find new doctors,  please.

If you believe your doctor or any other medical caregiver has acted improperly and even abused or harmed you or your loved ones, speak up. Don’t just be upset on your own. Document the wrongdoing. See if you can get names of others who witnessed what happened. Complain, firmly and appropriately, to folks who can take action — hospital administrators, insurers, regulators, licensing authorities. (Our firm offers a power kit, accessible by clicking here, on ways patients and their loved ones can advocate for  themselves when they encounter problems in the medical system).

If a serious, permanent, preventable injury has happened, get your information in order and call a medical malpractice lawyer.

As discussed in other newsletters, a small number of doctors are persistent bad actors. It is a myth that many physician careers are ruined by one rare mistake. It is fact that a slice of doctors who misbehave, commit grievous harm against patients, and should be ousted from practice — well, the studies show they too often keep racking up multiple malpractice judgments and disciplines of various sorts. They don’t quit. They move. They leave prominent positions and slowly become parts of smaller and smaller practices — where they keep harming patients but have fewer and fewer professional eyes seeing their misconduct.

Among the many ways that mainstream medicine can shore up public confidence is by acting with fairness but also with urgency and transparency to put bad doctors out of practice.

Many other ideas have been floated to restore trust in  medicine.  Some of the reform campaigns include what has come to be known as  “patient centered  care.” It may seem both idealistic and common-sensical. But this approach doesn’t elevate doctors, specialists, nurses, hospitals, or others in medicine above the most obviously important folks in medicine: patients. Their needs come first, and systems should be designed to meet these — not those, say, of self-aggrandizing doctors or shiny, profit-maximizing hospitals. This is true for all medical care for patients, including billing, scheduling, facilities design, costs, and access.

* Postscript on  Dr. Lamas’s story: The wife she discouraged from intubating her dying husband eventually calmed down. The spouse chose against the procedure, and the traveling family and friends saw her husband before he died, without the harm to him that an invasive tube down his throat would have caused.