Archive for category The Proactive Patient
You smoked 2 packs a day for 20 years. Your doctor orders the low-dose CT screening (above). Your doctor says you have a lung nodule, now what? That’s a lot to think about but before anxiety builds too much you need to know that of all the people with a nodule on their first scan 19 times out of 20 it is NOT lung cancer.
By asking some questions it is possible to work through the complicated logic of what to do next.
What if I am that unfortunate 1 out of 20?
If you know for sure the nodule is cancer you would get that nodule removed. Sure it’s a big surgery, hurts for weeks (sometimes longer), in the hospital for several days, and tons of risks the surgeon will recite. No walk in the park but the odds of a cure are better at an early stage. Lung cancer is a killer so it is easy to conclude: get rid of that nodule
What if that nodule is a bad type called “small cell” cancer?
Most specialists agree that chemotherapy is the treatment of choice. Surgery for small-cell cancer is not helpful and may actually shorten your life. A biopsy before surgery may help to avoid surgery for this type of cancer.
What if I am one of the lucky 19?
If all 19 get surgery there would be a lot of discomfort only to be told after surgery the nodule was just a scar or a harmless irritation. Biopsy or follow-up x-rays are sometimes helpful to avoid surgery.
What if I get a needle biopsy of the nodule?
A shot of numbing medicine, a long needle between the ribs, a tiny bit of tissue removed, and finally the pathologist sends a report. Such biopsies are 95% accurate. The wheel of fortune lands in one of 5 major categories:
- No cancer found
- Small-cell lung cancer
- Non-small-cell lung cancers
- Squamous cell carcinoma
- Large cell carcinoma
- Other cancers (much less common)
- Something which is not cancer
A needle biopsy answers critical questions. If it shows non-small-cell lung cancer surgery is the next step. If it is small-cell cancer the next step is chemotherapy. If it is something else, like tuberculosis, then entirely different treatment is needed. If it is “no cancer found” then you are back to square one — meaning a nodule is present and the cause is unknown (possibly a cancer that was missed by the needle).
I am willing to take some risk to avoid procedures.
We started this discussion with a 1 out of 20 chance of cancer. Is there some way to improve on the accuracy of that prediction? 1 out of 20 does not sound so good. But, if the odds of cancer in your situation are 1 out of 100 that would be more favorable.
Improved risk assessment
Canadian Annette M. Williams, MB and others reported in the New England Journal of Medicine in September 2013 an improved mathematical prediction method. Most pulmonary doctors and radiologists can readily provide the statistic. Basically, if the calculated risk score is below 5% then the chance of cancer is about 1 out of 100 .
If the risk is low you might just choose to get a CT scan every few months. If the size of the nodule does not change for 2 years then it is harmless. One sure thing, cancers grow. No growth means no cancer. But, if the nodule does grow you could change the plan and get the biopsy or surgery — there is a risk to letting a cancer grow for a few months (it could spread) but there are risks to biopsies and surgery as well.
If the cancer risk is high you might want to go ahead with a biopsy.
The above are the outlines of nodules 1) round 2) lobulated 3) irregular and 4) spiculated. Cancerous nodules can take any shape but tend toward the spiculated (spiny) form.
The improved statistical method is based on a few details about the nodule. Sex (women are more likely to have malignant nodules), size (the larger the nodule the more likely it is malignant), location (upper lobe nodules are more likely malignant) and spiculation (see diagrams).
If you want to calculate the risk statistic yourself, have a calculator and know the details listed above then click this: Calculate Risk. But, be warned, this calculation only applies to people who have a risk for cancer to begin with, not the incidental nodule found in a lifetime non-smoker or someone who only smoked a few years.
The forgoing material is intended as education, not a substitute for the evaluation and advice of your health care provider. If it seems helpful print it and take it to your provider for discussion. Medical care changes with time so always get up to date information.
On 7/23/13 Laura Landro of the Wall Street Journal published an article about “A Better Digital Diagnosis”. The essence of the story is on-line symptom checkers are available and may be useful to patients. Just input your symptoms, get your diagnosis, call for an appointment, and get your treatment. Sounds good; possibly too good.
Below are listed some good sources for information, some symptom checkers and some software to download to a smart phone. The software is actually intended for health care providers and may have too much jargon for the average person.
However, before you jump in to get a diagnosis for what ails you try a test run. OK, this is not a double blind experiment but worth your time. The idea is to look up the details of a known disease then enter the published symptoms in the symptom checker and see what comes out. You will find a huge variation, often the expected diagnosis does not even show up at all!
For example: plantar faciitis. This is a common disease of the foot caused by inflammation of the connective tissue in the sole of the foot especially causing pain just in front of the heel bone. The striking and often diagnostic symptom is heel pain on first getting out of bed and walking. The pain gets better after a few minutes of walking. It is common in runners and people who spend lots of time standing. Being overweight or wearing hard-sole shoes contributes. As people get older the natural padding of the sole thins which is probably why the problem is common after age 50.
The symptoms were entered into several of the symptom checkers. Esagil seemed to give every diagnosis know to medical science and nothing would narrow down the possibilities — every symptom could be due to syphilis. The Mayo Clinic site required some human thinking. Foot pain showed several areas to read about: after reading the material the diagnosis of plantar faciitis seems to fit.
The diagnosis of plantar faciitis can usually be made by a primary care provider in a flash — it is a common problem. Worrying about whether you have syphilis is a waste of time and a real source of anxiety — if you ask the primary care provider whether you could have syphilis, you can almost count on some testing.
Once you have tested any symptom-checker and understand the limitations they can be helpful. It’s almost like a second opinion about a problem. Discuss the findings with the health care provider early in an office visit — don’t spring the information after the provider makes a plan. Be a team player to prevent being at odds with the provider.
Good sources for medical information:
Evaluate symptoms / differential diagnosis
Smart Phone Apps
- Differential Daignosis by mHealth Labs, LLC
- Differential Diagmosis by Borm Bruckmeier Publishing LLC
- Your Rapid Diagnosis for Android by WWW Machealth
- Differential Diagnosis from the BMJ Group
- Your Rapid Diagnosis by WWW Machealth
- VisualDx by Logical Images
- Common Symptom Guide by Mobile Systems:
The physician who does not carry a smart phone to look up drug side effects is a dinosaur soon to be extinct.
Drug side effects can be common, rare, severe or mild. But, the number of reported drug side effects is so large the human brain can not remember them all. When a patient has a symptom or abnormal lab finding it is imperative to answer the question “could it be the medication?” An additional step is to check for drug interactions between all the medications a patient takes — easy on a smart phone or computer.
Prescribers may recall the side effects that were listed when a drug first went on the market — but quietly pharmaceutical companies discover more side effects which are later added to the product literature in fine print.
Here are some real life examples:
- A patient who takes several blood pressure medications is hospitalized with another episode of abdominal pain due to pancreatitis. $10,000 worth of tests find no cause. The patient is sent home and told it must have been due to a gall stone that passed undetected. WRONG — it was due to the side effects of the blood pressure medications. Medications changed, problem solved.
- A patient takes a new oral anticoagulant and needs a heart procedure. The blood test shows a low platelet count. $10,000 worth of tests give no clue. A bone marrow biopsy is proposed. WRONG –The patient finds an internet site shows the new drug may cause a low platelet count. No bone marrow test is needed. Medication changed, problem solved.
- A patient gets sunburned easily and friends comment on a suntan even in the winter. The medical diagnosis: fair skin. WRONG — the blood pressure medication causes photosensitivity. Medication changed, problem solved.
No matter whether the drug side effect is rare or common, if it happens to you it is 100%. Pharmaceutical companies rate the frequency of certain side effects. Indeed, this is helpful to health care providers — they figure out a diagnosis by mentally sifting through possibilities based on likelihood. Right lower abdominal pain is most likely appendicitis but surgeons well know there are other causes.
From a patient standpoint sometimes it is enough just to know that a drug could possibly be the cause of symptoms. If those symptoms start right after a drug was prescribed it does not take a rocket surgeon to figure out the problem.
Drug side effects are not behind every symptom. Such thinking could be very dangerous. To hesitate to see a doctor about chest pain because it could just be a drug side effect would be crazy. Also, there are unavoidable side effects — you might not like the side effects of a medication but sometimes there is no alternative (like medications to prevent organ transplant rejection).
The proactive patient should always check for possible side effects of their medications and discuss the findings that match symptoms with a health care provider. Just searching the drug name and “side effects” almost always gets the list you need. Another source is patient reported side effects. Several web sites are available — this one is sometimes helpful eHealth.me
Denver Colorado is a metropolitan area with several hospitals so the city serves as good example of the dilemma people face to make a choice.
The Denver Metro area is lucky to have good hospitals. But, the experience one might have as an inpatient depends on many factors including the individual doctors, the nurses and the strength of the quality improvement program at each hospital. The Center for Medicare and Medicaid Services (CMS) sets quality targets for participating hospitals and measures how those hospitals perform. CMS publishes the data and several organizations extract the data and make them available online. One such site is WhyNotTheBest.org by the Commonwealth Fund.
Hospitals tend to emphasize heart care because it is profitable and it has a strong emotional appeal. However, the average consumer never really knows what will land them in the hospital. CMS provides many different hospital quality statistics but the “overall” statistic is actually the most helpful to consumers.
Quality can be measured by an “outcome” such as mortality. Or, quality can be measured by adherence to a “process” . Process measures are popular because they don’t depend on patient factors such as age or poverty.
For example, leaving home in the morning should include the process of putting on shoes and closing the door. Following that process does not guarantee a good outcome but lessens the possibility of humiliation at work or later finding a burglar in your home. Hospital process measures reflect the quality of management and the ability of an organization to execute a plan with numerous players.
The following table is CMS data organized by WhyNotTheBest.org. The “Overall” is a weighted average of all of the process-of-care, or “core” measures.
NAME — Selected Denver Hospitals
|University Of Colorado Hospital Anschutz Inpatient (CO)||99.38%||162 of 1792|
|Swedish Medical Center (CO)||99.17%||265 of 1792|
|Presbyterian/st Luke’s Medical Center (CO)||98.76%||460 of 1792|
|Exempla Lutheran Medical Center (CO)||98.59%||551 of 1792|
|Exempla Saint Joseph Hospital (CO)||98.33%||698 of 1792|
|Denver Health Medical Center (CO)||97.56%||1093 of 1792|
|Centura Health-st Anthony Central Hospital (CO)||95.62%||1619 of 1792|
Hospitals love the percentage statistic and hate the national ranking. There are hospitals in other states that indeed do score 100%. Just like climbing a Colorado mountain, the last mile is often the hardest.
99.38% or 95.62% means the hospital failed to follow a process 6 or 44 times out of 1000. One time out of a million would be better. Which hospital you choose may depend on where your doctor or insurance company sends you. But, if you have a choice the information from CMS may be helpful.
Making a diagnosis is difficult. And, doctors sometimes get it wrong. “Wrong” is often harmless, usually expensive, and sometimes deadly.
An article about incorrect diagnosis appeared this month in the British Medical Journal Quality and Safety which has been widely reported, including by the Wall Street Journal. Dr. Tehrani and his co-authors correlated health insurance claims (diagnosis) with malpractice suits. They found “diagnostic errors appear to be the most common, most costly and most dangerous of medical mistakes.”
One might think the errors happen because the underlying problem is very rare. On the contrary, the bulk of errors happen with common conditions.
Another article this month in JAMA Internal Medicine by Dr. Singh and co-workers reported on common types of diagnostic errors — many of which were common in primary care: (italics are blog examples)
- no chest x-ray for cough and high fever
- no chest x-ray for cough and high fever
- Decompensated congestive heart failure
- no BNpeptide checked
- Acute renal failure
- no check of basic metabolic panel for fatigue
- ignoring Mammogram findings or blood in sputum
- Urinary tract infections
- not checking urinalysis or treating soon enough
The flaw in the process that contributed to the wrong diagnosis included:
- Inadequate patient encounter (too short or not focused on problem)
- Not seeking referral when needed (like not getting a cardiology consult for chest pain)
- Patient related factors (not returning for follow-up)
- Not taking risk factors into account (like family history of colon cancer)
- Losing track of test results (urinalysis report filed but not viewed)
- Not getting the right test (not getting a chest x-ray for shortness of breath)
Problems at the time of patient encounter are a major contributor:
- Poor history taking (provider did not listen or ask questions)
- Inadequate examination (provider did not examine problem area — like a breast nodule)
- Inadequate testing (not considering a colonoscopy for blood in the stool)
When a person has a health problem the whole idea is to connect the dots …problem…diagnosis…treatment. If the diagnosis is not correct then good treatment is disconnected.
Providers often do not consider enough possible causes for abnormal findings. Those possibilities are called the “differential diagnosis”. There are books and several free sites on the Internet that provide such lists. One such site is DiagnosisPro. If you like other sites leave a comment please. Some electronic record applications include a differential diagnosis automatically — nice feature which should always be installed.
So, what is the solution? Most experts agree, the quality of the provider-patient interaction must improve. Providers need to follow known guidelines plus use differential diagnosis aids. Patients need to look out for themselves by using the Internet or books to understand symptoms and test results. The best solution is a stronger partnership between patients and providers. See earlier posts in this blog about shared decision-making and patient centered care.
Can all errors be prevented? NO. To err is human. The point is to minimize the errors, and there is obviously a lot of room for improvement.
Patient NON-CENTERED care is a physician looking at a computer rather than the patient, not letting the patient have a minute to express what they are concerned about or not making follow up appointments for diabetes. Patient centered care is better care.
The International Alliance of Patients’ Organizations (IAPO) has listed the “Five Principles” of patient centered care. The list includes:
- Choice and empowerment
- Patient involvement in health policy
- Access and support
Four cultural phenomena are at the root of the patient-centered movement.
- Doctors are not always right and communicate poorly.
- One third of US citizens are illiterate about health issues.
- The Internet has exposed items 1 and 2.
- People are wary of the government changing the healthcare system
The slippery slope for many patients starts when doctors tell patients what to do, patients don’t know enough to ask questions, treatment is given , advice is not followed and the outcome is not what the patient wanted.
Patient-centered care may be the solution. Focus on the provider-patient interaction, improve provider-patient communication, educate the patient about the problems at hand, and let the patient have a larger say in their own health care.
There is a political side to patient-centered care which is the battle between the public good and the patient’s wishes. There is plenty of work to be done at the point of interaction between the provider and the patient. Worry over fluoride in the water, organic vegetables and workplace dangers are different topics, important, but not patient-centered care.
The insinuation fee-for-service medicine is somehow more patient-centered than other health-care systems is not logical. No matter what health care system is in place the notions of good communication, patient education and patient autonomy remain critically important.
Patients will suffer the consequences of their decisions. So, providers should never agree to bad medical care. The purpose of patient-centered care is not to “give the patient what they want”. But, rather to listen to the voice of the patient, communicate the best evidence-based guidelines and be a partner with the patient to make good decisions.
What is Shared Decision Making (SDM)? It is a process for patients to make good decisions about tests, medications, surgeries and just about anything health care providers might suggest. What it is, and what it is not — some examples:
A patient has frequent headaches and has a visit with a provider.
Scenario 1: The provider says “a CT scan of the brain is needed, so get that done and come back for a follow-up visit.” (Old school, doctor knows best)
Scenario 2: The patient wonders if a CT scan of the brain would be a good idea to make sure there is no brain tumor. The provider says “sure, the nurse will schedule it tomorrow.” (Consumerism, do what the patient wants)
Scenario 3: The provider says “there are a number of options including a trial of migraine medications or getting a CT of the brain.” Then the provider gives the patient a handout that lists independent sources for additional information. And, says “I will call you on Monday, after you have had a chance to review the information so we can decide what to do” (Shared Decision Making)
Group Health Cooperative in Washington State has made a big push to support SDM. The Group has made information available on the Internet to assist the patient for many common situations. 91% of patients who used the system found it “very important” or “extremely important”. Click to see an Example of shared decision-making by Group Health Cooperative.
Pros and Cons:
- The process takes longer than just doing what the provider says
- Usually the SDM comes to a decision the patient will support, so they will follow instructions and treatments more than an average patient.
- As long as the information reviewed by the patient is based on evidence based guidelines (well researched advice) then good decisions are possible. And, usually the decisions are less invasive and less costly.
Laura Landro of the Wall Street Journal published the article: “Image Sharing Seeks to Reduce Repeat Scans” on April 1, 2013. Ms. Landro reported on an academic project to store x-ray pictures on the Internet called the “Imaging Sharing Project” (image share news release). The idea is to have patients own a secure copy of their personal x-rays. By having this storehouse of x-rays in the “cloud” they can be given to any health care provider or hospital as needed.
Any patient who has had to take x-ray images from one provider to another understands the problem. The provider handed the disk of images may or may not be able to look at them because of incompatible ways of recording the material. Of course, this means another visit to the provider (or worse, a repeat x-ray and unnecessary x-ray exposure).
Storage of images is nothing new. But, the concept of the patient owning the images is indeed something new. It allows a patient to seek a second opinion without all the hassle of getting the disk. This is a real asset to a patient who keeps copies of their own medical information. The typed radiologist report is usually very brief and does not allow for alternate interpretations.
The difficulty transmitting images is partly intentional. Radiologists fear someone else far away could be a business competitor. It would be very bad for local radiologists if patients always wanted their brain CT evaluated by some expert in Boston or London.
Cancer patients will find this service very helpful. If a woman has an abnormal mammogram she can pick the oncologist or surgeon and then share the images with them. If she has a mammogram at a different facility she can share the older image for the purpose of comparison.
People who move from city to city would still retain easy access to x-ray images. The US population is much more mobile than in the past so this is very important.
The Image Share project is not available everywhere. There is a commercial product called LifeIMAGE. It is a great idea so hopefully the idea will spread. It would be a step forward if all insurance programs and x-ray offices were required to provide this as a benefit. If you know of other similar products please leave a reply.
Today’s lead story in the New York Times (3/31/13) is about the sad result of a dangerous chemical used by workers to make cushions for furniture. The chemical is n-propyl bromide (n-PB), a spray adhesive to stick urethane cushions together. Click this link to see an n-Propyl Bromide materials safety data sheet (MSDS). The workers were exposed to the chemical and suffered long-term neurotoxicity manifest by difficulty walking and using the hands. The workers were clearly hurt and there is a lot of finger-pointing at the management and the US Occupational Health and Safety Administration.
A true story with a better outcome follows:
A man started his own home insulation business and learned how to spray foam insulation. He was young and very fast so he decided he could apply the foam and get out of a room so quickly protective gear was not needed. He hired several other workers for his small company. Time went by and he developed cough, wheezing and shortness of breath always worse after a day on the job. His wife insisted on a visit to a lung specialist who told him he had occupational asthma from the spray and must NEVER use the substance again. He stopped using the spray and immediately purchased safety equipment for his workers. The company owner commented: “wow, that’s bad stuff”.
The difference between the two stories illustrates important points:
- If the owner of a company develops a health problem from occupational exposure the doctor is not questioned and immediate corrective action is taken. The scenario is called the “pilot’s incentive”. Pilots are very willing to fix airplane safety problems since a crash might kill them. But, business owners divorced from the health risk and concerned about how much the corrective action would cost do not act quickly.
- Workers often seek help from local physicians. The physicians are afraid of getting drawn into a suit. And, as in this case, if the MSDS does not explicitly list the health problem no action is taken. Doctors avoid chemical related workman’s compensation because of the paperwork and legal obstacles involved. MSDS sheets must be updated every 3 years. However, there is no mandate to perform research to actually add to the basic information — and it seems foreign safety data is not well accepted.
- Knowledge of occupational-exposure risk often does not deter workers. For example, in the late 19th century miners knew the risk of death from using the steam driven hammer called the “widow maker”. The miners died in their 20’s from breathing rock dust, a disease later named silicosis. But, they took the jobs anyway because the pay was good. The pay at the furniture factory was $10/hour, perhaps that was the best pay available. Workers were aware of co-workers getting sick but they worked on and on despite difficulty breathing and difficulty walking.
- Workman’s compensation insurance is required in every US State. If an injury is caused by something at the workplace the worker usually gets monetary compensation. And, the compensation is tax free.
Here are some simple suggestions:
- If you have a health problem make sure to tell your doctor about your work environment and any exposure to fumes, dust, chemicals and radiation. Bring copies of the MSDS sheets appropriate to your job (employers are required to have a file of this information).
- If other people at the job site are having similar health issues the job may be the cause — no matter what the MSDS says.
- If a workplace health problem is suspected see an occupational medicine specialist. Your local health care provider may be knowledgeable but may be easily overwhelmed by the amount of uncompensated time it takes to resolve the issue.
- There are other jobs, other cities, and other states — disability and death can never be fully compensated so don’t risk your health for a job.
The above map comes from Internal Medicine News. State by state it shows where doctors are using electronic prescribing. A simple question for those doctors in the white states: why live in the past? Huge numbers of pharmacies accept electronic prescriptions, patients like electronic prescriptions better than paper prescriptions, prescribing errors are much lower, patients get better care, drug interaction checks can be done BEFORE the prescription is sent (so the pharmacist does not have to call), and a record of the prescription is available as part of the medical record.
The doctor perspective: “Just more computer work for me”
The patient perspective: “I like the idea of fewer errors”
How does it work?
The prescriber needs to have several things in place:
- An electronic medical record
(without this much of the advantage is lost)
- An electronic list of the patient’s active prescriptions
- An electronic list of the patient’s allergies and intolerances
- A diagnosis associated with the prescription
- A record entry to document the thought process for the prescription
- An internal link to the insurance drug formulary
A very good process is to have the computer screen for prescribing where the patient can see the actions of the prescriber. That way the patient can see what is being prescribed, whether it is covered by insurance, where the prescription will be sent, the instructions, the amount and the refills. If there are problems the patient can comment — it is much better to have feedback at the time of prescribing rather than the patient not take the medication or get phone calls later with questions from the patient or pharmacist. Physicians who use e-prescribing don’t ever want to go back to the old way! Pharmacists never liked physician handwriting anyway.
So, if your physician is not using e-prescribing give them a copy of this post!