The Upshot reflects: Patients overestimate benefit and underestimate harm of tests & treatments

In February, an excellent systematic review article appeared in JAMA as part of their "Less is More" series. Patients’ Expectations of the Benefits and Harms of Treatments, Screening, and Tests: A Systematic Review by Drs Tammy Hoffman and Chris Del Mar provides a comprehensive overview of patients views of the risks and harms of various tests, procedures, and treatments.

Their Conclusions and Relevance section explains the take-away it nicely:

The majority of participants overestimated intervention benefit and underestimated harm. Clinicians should discuss accurate and balanced information about intervention benefits and harms with patients, providing the opportunity to develop realistic expectations and make informed decisions.

This week, the NY Times Upshot - a source I'm finding myself reading more and more often - posted their reflection on the article, If Patients Only Knew How Often Treatments Could Harm Them. They beautifully wove together some of the data from the article to make it easier to digest and understand.

For example, they highlight the 2012 Annals of Family Medicine study that looks at patient estimates of the benefits of screening for bowel cancer. 

94% of patients overestimated the benefits of bowel cancer screening.

Simple and persuasive examples like that help explain the problem with our current care, and the article culminates in a summary written by Drs Frakt and Carroll that is completely in line with the principles that drive the Less is More in Medicine approach:

Many of the studies in the systematic review show that people report that they would opt for less care if they better understood benefits and harms. Improved communication could better serve patients and might improve the efficiency of our health system if patients focus on getting the types of care for which the benefit outweighs risk of harm.

Since they've done such a great job expounding the article, I feel no need to provide my own explanations or reflection.

 These kinds of articles come into my email and RSS reader and across my twitter landscape in droves; being overrun with articles and action in the field of overdiagnosis/testing/treatment is a delightful problem to have.


Demanding Patients? Not so in Oncology

Surveyed physicians tend to place responsibility for high medical costs more on “demanding patients” than themselves. However, there are few data about the frequency of demanding patients, clinical appropriateness of their demands, and clinicians’ compliance with them.

Exactly. This JAMA Oncology paper looked at 5050 patient-provider encounters in the oncology context and found that patients requested things in 8.7% of the encounters, and these demands were only considered inappropriate in 1% of encounters.

Number and Types of Patient Requests or Demands (JAMA Onc)

Number and Types of Patient Requests or Demands (JAMA Onc)

I think we need to be very careful about blaming patients. I do it... but I'm getting better at seeing the bigger picture. Yes, sometimes they are in the stage of denial and struggling to cope with their diagnosis. They may ask for completely inappropriate tests or treatments. Sometimes their expectations are absolutely ridiculous but most of the time this is not the case. The patient is not crazy or 'demanding.' A lot of the time it is we clinicians who put some of the more unrealistic expectations on people's radar.

Educating patients wouldn't change this, except if we can encourage them à la Choosing Wisely to initiate discussions with their physicians about unnecessary tests and treatments.  Educating the clinician, particularly encouraging transparency and openness in communication is really important. However, the biggest thing we can do is to change the overall culture of the health 'system' and our society to make it "okay" to talk about these issues frankly.

I work quite frequently with oncology patients, often in a supportive or palliative role. I find it shocking that many of them have never discussed dying, have not made advanced care plans, and do not understand the goals of their treatment. Often a patient is receiving palliative therapy and yet they believe it is a curative therapy. They may demand aggressive medical treatment, not realizing that they are very close to dying.

Sometimes, when I liaise with the oncologist, he or she explains that they had frank discussions about these things, and I can see it in the notes. It's just been hard to accept and people don't really hear what has been said. Other times, "it just never came up." I find that that hard to believe. It should come up. Shouldn't it?

Not talking about the end of life is doing a patient a disserviceHow can they make decisions about their care without knowing what is going on? It also suggests - as made clear by this study -  that inappropriate interventions might be coming from the clinician, not necessarily initiated at the behest of the patient.

What do you think?


How residency programs are training doctors to waste money - Vox

It makes sense that our practice patterns are very much influenced by where and with whom we train. Why should there be any exception when it comes to over-ordering tests and treatments?

A recent study in JAMA, Spending Patterns in Region of Residency Training and Subsequent Expenditures for Care Provided by Practicing Physicians for Medicare Beneficiaries, shows that where we train has implications for high-value care.

Residents who train in regions with high health care costs (that is, the places that err on the side of more scans and specialists) continue to practice expensive medicine decades beyond graduation — even if they move to low-cost parts of the country.
The JAMA paper suggests a tantalizingly easy way to save money in American health care: train more residents in low-cost areas of the country. They would learn, from the get-go, to be more frugal physicians. If there was a way for the health care system to cut 7 percent of all spending just by training doctors differently, after all, you'd think we'd jump at it.
But, like most things in health policy, this is easier said than done.

Read more on Vox.

Just One More “Noninvasive” Test…

"Just one more." You never know what a test could lead to if you don't discuss it with whomever is ordering it. Why is it being ordered? What are the risks? Are there any alternatives?

Marilyn Bauriede, a retired attorney in California wrote about her personal experience with this phenomenon. Making decisions as to 'what to do' when offered options is hard. It's harder still when both the disease being tested for and the test itself can be harmful. In this case, there was a question of heart disease, but it would have to be justified in view of the radiation of the test (cardiac perfusion, AKA MUGA) and contribution that might have to an increased risk of cancer.

Hmmmm... what to do? Lately we've been learning that cardiac catheterization is performed on a lot of people who don't need it, and stress tests might not be as accurate or important as once thought. Heart disease is scary, but some of the tests are invasive, risky, and (for US patients or for Canadian Tax Payers) expensive. Plus, they might lead to MORE tests!

. . . That’s when a light bulb turned on in my brain, as I recalled the cardiologist telling me there was a 70% chance the perfusion test would reveal nothing at all wrong, or at least would not show artery blockage. I thought, “There’s way better than a 50% chance the test will find me heart healthy.” Even my PCP had said the ECG and stress test were not very accurate. That would mean they might have been wrong. And if that were the case, then having the perfusion test would needlessly subject me to health risks and no clear benefits. I needed to put the brakes on to more testing and seek a second opinion.

It's interesting to see from the patient perspective how the facts and uncertainties are explored. Ultimately, the situation was resolved because of a good connection with a physician, a thorough review of history and past tests, and probably a bit of wisdom from patient and doctor alike.

Read more in JAMA.


The Naturalness of Dying

I love my job most days. Whether solving a diagnostic puzzle, hearing a patient's story about an important moment, seeing an elderly person regain their pre-hospital fitness, or sending someone home in good health, the joy is unstoppable. Even in sharing bad news, there is sometimes laughter and relief, a thankfulness for a connection between doctor and patient.

There are very bad moments too. You'd think the worst would be losing a patient I am close with, telling a young person that their life will be radically different (or shorter) than expected, or finding out I've made an error despite my best efforts. These are low moments – but they are not the worst.

The most unsatisfying, defeating moments are those I face when struggling with the ethics around the time of death and dying. Specifically, these usually occur when I think I'm dealing with "end of life care" and a patient, or more often their family, is having a hard time acknowledging that's where we are. 'Denial' or 'refusal to accept' are terms that we throw around, and while part of the natural grieving stages, these states are not meant to be permanent. There also may be an element of impatience on the part of we, the healthcare providers, who have a hard time letting grief happen in its own time.

I have a very hard time being asked to artificially prolong the life of a patient who is suffering. Take for example a 93 year old woman with end-stage dementia who is no longer interested in food, too weak to swallow without choking, and cannot communicate much - especially not her wishes or preferences. When we reach this point, most doctors believe that it is time to let nature take its course, and to treat any symptoms that make the woman uncomfortable. This woman's current state is the unfortunate natural progression of her disease. However, the family does not want to let her go; they promised they would never "give up" and so they tell me they would like their grandmother to have a feeding tube. I emphasize that focusing on her comfort is not "giving up." They hear me, but they don't really hear what I say. Try though I might, I am unable to persuade them that this artificial means of prolonging her life is uncomfortable, inappropriate, and may be inconsistent with her wishes.

It is against my morals and against my oath to force nutrition into a patient who has a non-reversible condition which prevents her from eating. Yet legally, and some would argue ethically, the family has recourse to request what they feel is in the best interests of their loved one. Often, the physician is obliged to do it, no matter how wrong or like torture it seems. Just because something is medically possible doesn't mean it is right.

Obviously there is a minefield of tension around end of life care issues. There are grey areas, physicians are not always right, and everything has to be discussed with the best interests of the patient in mind.

It's our job as physicians to work together with our patients and the healthcare team, to shepherd people to good health. I also believe it is our duty to care for the sick and dying, to be by their side and help them achieve the best quality of life for their remaining time with us. When patients and families do not acknowledge that death is a part of life, that is when I struggle most.

There is a lot of fear around death, including fear of facing the unknown. They say it takes a very strong person to know when to leave the fight. I think it takes a stronger one still to know that even in accepting death and dying, the fight is not over. One should still fight: for happiness, comfort, spiritual peace, closure with family. But fighting death, when it is clear that doing so will only harm you, is hard for me to understand.

There comes a time when "good" health may not be possible. This is not unnatural, this is not a great injustice - this is dying. And this is a normal part of life.

Back in 1995, Dr. Jack McCue wrote a paper for JAMA that is timeless. He considers our attitudes around death and dying, suggesting that the medicalization of the process diminishes the autonomy of dying patients and results in bad and wasteful care.

When I'm having a bad day, struggling with this issue, I commiserate and quip to my colleagues: "Death is not the enemy." I have a feeling Dr McCue might agree.

Read The Naturalness of Dying, from JAMA.


Study: Many Invasive Medical Procedures are the Result of Uncertainty, Not Evidence

Forbes contributor David DiSalvo offers reflection on a JAMA article which highlights the epidemic of overtesting and delves into the origins of this behaviour. 

“The psychological dynamic of investigation momentum has two major parts,” Dr. Sah explained during a phone interview. “The first is our inherent aversion to ambiguity. The second is the sense of commitment we feel once we’ve started an investigation and feel like we must continue.” . . . 

these results tell us is that of all the testing variables, uncertainty was the biggest catalyst moving participants toward choosing an invasive procedure . . . As Dr. Sah explains, the implications of these results do not only reflect on patients. “Physicians also want to resolve uncertainty.  It is peoples’ tendency toward wanting to resolve ambiguity overall–both on the parts of patients and doctors–that fuels investigation momentum.”

The JAMA paper and the interview responses from Dr Sah are illuminating. If we can understand why we perpetuate our tendency to overinvestigate, perhaps we can intervene more fruitfully.

Read more on Forbes.