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Although most doctors say they believe in the immediate free flow of information from physician to patient, the reality is that many hospitalized patients don’t receive a full explanation of their condition(s) in a timely manner. I’ve seen patients go for days (and sometimes weeks) without knowing, for example, that their biopsy was positive for cancer when the entire medical staff was clear on the diagnosis and prognosis. So why are patients being kept in the dark about their medical conditions? I think there are several contributing factors:
1. Too many cooks in the kitchen. During the course of a hospital stay, patients are often cared for by multiple physicians. Sometimes it’s unclear who should be the first to give a patient bad news. Should the news come from their primary care physician (who presumably has a long standing, trusting relationship with the patient) or the surgeon who removed the mass but doesn’t know the patient well? In many cases each assumes/hopes the other will give the patient the unpleasant news, and so the patient remains in the dark.
2. Family blockades. It often happens that a patient’s spouse or family member will request that news of an unpleasant diagnosis be delayed. They argue that it would be best for the patient to feel better/get stronger before being emotionally devastated by a test result. In some cases the family may be right – grief and shock could impair their participation in recovery efforts, resulting in worse outcomes. Cultural differences remain regarding how patients like to receive information and how families expect to be involved in care. American-style, full, immediate disclosure directly to the patient may be considered rude and inappropriate.
3. Uncertainty of diagnosis. Sometimes a clear diagnosis only develops with time. Biopsy results can be equivocal, the exact type of tumor may be unclear, and radiology reports may be suggestive but not diagnostic. Some physicians decide not to say anything until all the results are in. They cringe at the prospect of explaining uncertainty to patients, and without all the answers they’d rather avoid the questions. What if it looks as if a patient has a certain disease but further inquiry proves that she has something else entirely? Is it right to frighten the patient with possibilities before probabilities have been established?
Although sensitivity must be applied to the nuances of individual care scenarios, my opinion is that patients should be immediately informed of their test results and their physician’s thought processes at every step along the diagnostic pathway. Family member preferences, however well-meaning they are, cannot trump the individual’s right to information about their health. If physicians are unclear regarding which of them should break the news to a patient then they should confer with one another and come up with a plan ASAP.
The right time to tell the patient the truth is: now. To my colleagues who avoid giving patients information because it is personally uncomfortable (often leaving me or other third party to be the messenger), I have two words: “man up.”
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I hate scientific studies that don’t investigate the assumptions on which they’re based. They do harm. The findings slither around and get into the heads of people who treat people for the issues the research purports to understand. And the misconceptions become protocol. Here’s one example:
The Journal of Epidemiology and Community Health published an article declaring a connection between childlessness and increased risk of death and mental illness.
Among the findings:
- Having a child cut the risk of early death, particularly among women.
- The early death rate from circulatory disease, cancers, and accidents among childless women was four times as high as that among those who gave birth to their own child, and 50% lower among women who adopted.
- Similarly, rates of death were around twice as high among men who did not become parents, either biologically or through adoption.
- The prevalence of mental illness in couples who adopted kids was around half that of other parents.
What the study states but doesn’t investigate is that for their research they used: ”population-based health and social registers, we conducted a follow-up study of 21 276 childless couples in in vitro fertility treatment.”
Do you hear the sound of “WHAT!??!” beginning to reverberate?
Might it be that couples who have been living in the infertility system for months, maybe years and have had their original life script expectations erased, have had doctors and drugs and timetables invade their intimate time, have spent gobs of money, and have had repeated cycles of devastating disappointment may be in a very different state than couples who have CHOSEN not to have children?
And let me state my assumption up front. Choosing not to have children is not dysfunctional. It’s not a psychological condition. It’s not an ethical/moral lapse. It’s not a sign of immaturity or selfishness. It’s a legitimate choice.
It may be that the researchers’ findings do apply to couples who undergo infertility treatment in order to have a child.
But there is harm in assuming that all couples who don’t have children are at higher risk for death and mental illness.
This post originally appeared at Barbara’s blog, In Sickness As In Health.
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Animal research has shown that the best way to get a rat to press a pellet-producing lever is to set the mechanism so that it doesn’t always release a pellet with each push. The unpredictability (or scarcity) of the reward causes the rat to seek it with more fervor. Casino owners are well aware of this phenomenon, gaming our brain’s natural wiring so that our occasional wins drive us to lose more than we would if our winning had a predictable pattern.
I believe that the same principle is at work in physician reimbursement. Although most patients don’t realize this, physicians aren’t always paid for the work they do, and they are paid wildly different rates depending on how they code an encounter or procedure. After several health insurance denials of payment for legitimate work, physicians look for ways to offset their losses. Those may include changing the coding of their procedures to enhance the rate of reimbursement, exaggerating the complexity of an encounter, or (less commonly) billing for things they didn’t do. Because of the perceived injustice in a system that randomly denies payment for legitimate work, the physician feels less morally concerned about her over billing and coding foibles.
And so a vicious cycle of reimbursement deprivation, followed by fraud and abuse, becomes the norm in the U.S. healthcare system. Payers say that physicians are greedy and unethical, and physicians say that payers deny reimbursement unfairly and pay rates that are too low to be sustainable. The government’s response is to hire a cadre of auditors to ferret out physician fraud while cutting reimbursement to physicians further. This is similar to reducing the rate of pellet release to the rats in the Skinner boxes, while randomly electrocuting them through the metal flooring. The result will be that rats will work harder to find work-arounds to get their pellets, including gathering together into larger groups to share pellets. This is occurring more and more commonly as solo practitioners are joining hospitals or large group practices to make ends meet.
But we need to realize a few things about the “Skinner box healthcare system:”
1. Rats are not evil because they press levers manically when there is a scarcity of pellets. Physicians are not evil when they look for ways to make up lost revenue. While fraud and abuse are always wrong, it is not surprising that they are flourishing in an environment of decreasing reimbursement and increasing health insurance payment denials. If we want to address fraud and abuse, we need to understand why it’s happening so that our “solutions” (i.e. hiring thousands more government auditors to investigate medical practices) don’t end up being as useless as shocking the rats.
2. Health insurance (whether public or private) is not evil for trying to rein in costs. Payers are in the unenviable position of having to say “no” to certain expenditures, especially if they are of marginal benefit. With rats pressing levers at faster and faster rates for smaller and smaller pellets, all manner of cost containment mechanisms are being applied. Unfortunately they are instituted randomly and in covert manners (such as coding tricks and bureaucratic red tape) which makes the rats all the more manic. Not to mention that expensive technology is advancing at a dizzying rate, and direct-to-consumer advertising drives demand for the latest and greatest robot procedure or biotech drug. Costs are skyrocketing for a number of good and bad reasons.
3. There is a way out of the Skinner box for those primary care physicians brave enough to venture out. Insurance-free practices instantly remove one’s dietary reliance on pellets, therefore eliminating the whole lever pressing game. I joined such a practice several years ago. As I have argued many times before, buying health insurance for primary care needs is like buying car insurance for your windshield wipers. It’s overkill. Paying cash for your primary care allows you to save money on monthly insurance premiums (high deductible plans cost much less per month) and frees up your physician to care for you anywhere, anytime. There is no need to go to the doctor’s office just so that they can justify billing your insurance. Pay them for their time instead (whether by phone, in-person, or at your home/place of business) and you’ll be amazed at the convenience and efficiency derived from cutting out the middle men!
Conclusion: The solution to primary care woes is to think outside the box. Patient demand is the only limiting factor in the growth of the direct-pay market. Patients need to realize that they are not limited to seeing “only the physicians on their health insurance list” – there is another world out there where doctors make house calls, solve your problems on the phone, and can take care of you via Skype anywhere in the world. Patients have the power to set physicians free from their crazy pellet-oriented existence by paying cash for their health basics while purchasing a less expensive health insurance plan to cover catastrophic events. Saving primary care physicians from dependency on the insurance model is the surest path to quality, affordable healthcare for the majority of Americans. Will you join the movement?
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A recent mammogram study in the New England Journal of Medicine was so controversial that the authors (Drs. Welch and Bleyer) decided to make a YouTube video to defend and explain their conclusions. Now that’s a first, isn’t it? Well kudos to the study authors for their creative approach to getting ahead of a controversy. However, their video (created for the “general public”) is still a bit too technical in my opinion. I’d like to take a crack at distilling it further.
A question on most women’s minds (as they turn 40 and beyond) is whether or not they should get a screening mammogram (x-ray of the breasts). If you have found a lump in your breast or you have a family history of breast cancer the answer is yes. No need to read any further. However, for the majority of us lumpless, family-history-free women, a screening mammogram is far more likely to expose us to unnecessary follow up testing than it is to catch a tumor early. Dr. Welch explains that screening mammograms aren’t very good at identifying aggressive breast cancer early enough to make a difference in whether one lives or dies anyway. That’s very disappointing news.
Dr. Welch goes on to explain that most of the gains we’ve made in breast cancer survival have been because of improved breast cancer treatments, not because of early detection with mammograms. He estimates that every year in the U.S. 1.3 million women are “over-diagnosed” with breast cancer because of screening mammograms, subjecting women to unnecessary biopsies, surgical procedures, and further follow up studies. In the video, Dr. Welch doesn’t explain exactly what these “over diagnosed” cancers end up being exactly (Cysts? Benign calcifications? Early non-aggressive cancers that the immune system kills on its own?) But suffice it to say that they don’t contribute to the cancer death rates.
So, given the fact that you are more likely to suffer through a false alarm than to discover a cancer early (and even if you do find it early, if it’s the “bad” kind you may not survive) are you willing to undergo a screening mammogram? That’s a personal question that we each have to answer for ourselves. As time goes on, however, I suspect that the answer will be made for us since health insurance companies (whether public or private) will begin to balk at paying for tests that do more harm than good overall. I think this issue is really at the heart of the controversy (the perception of rolling back a health benefit that women currently “enjoy”). Eventually screening mammograms may become an out-of-pocket expense for women who simply prefer the peace of mind that a normal test can give – even at the risk of going through a false alarm.
That being said, it sure would be great if we could find a screening test that identifies breast cancer early – especially the aggressive kind. Perhaps a blood test will do the trick one day? At least it is comforting to know that we have made great strides on the treatment side, so that fewer women than ever before die of breast cancer. More research is needed on both the screening and treatment sides of course.
As for me, I do regular breast self exams – though because I have no family history of breast cancer I’ve opted out of screening mammograms because I feel the cost/benefit ratio is not in my favor. I certainly hope that a better screening test is developed before I face a potential diagnosis. I respect that other women will disagree with me – and I think they have the right to be screened with the only option we currently have: the mammogram. I’m not sure how long it will continue to be covered by insurance, but at a price point of about $100, most of us could still afford to pay for it out-of-pocket if desired.
The bottom line of this controversial research study is that screening mammograms don’t actually catch death-causing breast cancers early enough to alter their course. Even though it makes intuitive sense to be screened, long term observations confirm that overall, mammograms do more harm than good. So now we wait for a better test – while some of us continue with the old one (as the National Cancer Institute recommends), and others (like me) don’t bother.
Thanks to ePatient Dave and Susannah Fox who brought the issue to my attention on Facebook. Isn’t social media grand?
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In a recent post entitled, “The Joys Of Health Insurance Bureaucracy” I described how it took me (a physician) over three months to get one common prescription filled through my new health insurance plan. Of note, I have still been unable to enroll in the prescription refill mail order service that saves my insurer money and (ostensibly) enhances my convenience. The prescription benefits manager (PBM) has lost three of my physician’s prescriptions sent to them by fax, and as a next step have emailed me instructions to complete an online form so that they have permission to contact my physician directly (to confirm the year’s refills). Unfortunately, page one of the form requires you to fill in your drug name and match it to their database’s list before you can continue to page two. For reasons I can’t understand, my common drug is not in their database. Therefore, I am unable to comply with my insurer’s wish that I enroll in mail order prescription refills. This will further delay receipt of my medication – and probably increase my cost as I will be penalized for not opting into the “preferred” mail order refill process.
Now, all of this is infuriating enough on its own, but the larger concern that I have is this: How many patients are not “compliant” with their medication regimen because of problems/delays with their health insurer or PBM? Physicians are being held accountable for their patients’ medication compliance rates, even receiving lower compensation for patients who don’t reach certain goals. This is called “pay-for-performance” and it’s meant to incentivize physicians to be more aggressive with patient follow up so that people stay healthier. But all the follow up in the world isn’t going to get patient X to take their medicine each day if their health insurer or PBM makes it impossible for them to get it in the first place. And shouldn’t there be consequences for such excessive red tape? Who is holding the insurers and PBMs accountable for their inefficiencies that prevent patients from getting their medicines in a timely manner?
Pay-for-performance assumes that physicians are the only healthcare influencers in the patient compliance cycle. I’ve learned that we only play a part in helping people stay on the best path for their health. Other key players can derail our best intentions, and it’s high time that we look at the poor performance of health insurers and PBMs as they often block (with intentional bureaucracy) our patients from getting the medicine they need. While insurers save money by having patients struggle to get their prescriptions filled, doctors are payed less when patients don’t take their medicines.
Not a great time to be a doctor or a patient… or both.