I had surgery to remove a benign brain tumor which hemorrhaged, a stroke. I existed for weeks in a fog, trying to follow instructions from the neurosurgeon, the neurologist, the cardiologist, a metabolic specialist for my calcium deficiency, and my physical, occupational, and speech therapists. When I left rehab, my sons managed my meds, my appointments, my therapies, etc. Modern medicine allows people to live that only a few years ago would have died, but the support systems for this most vulnerable group have not kept pace with the improved treatments.
30
Age isn't the primary issue. Even with a PhD in English, I find deciphering the notes on my health care tests and visitation notes highly difficult. Numbers, abbreviations and technical terms without explanation necessitate additional internet searches or calls or emails to my doctor to find out whether I should be concerned or take specific measures. How about some plain language to explain significance as part of the report?
25
Combine this ignorance with drug adverts on television and it truly is a dream situation for American industry, whose only duty, as they keep reminding us, is maximizing profits for shareholders. Humans are a disposable link in a chain designed to pull profits from the bottom in order to reward the "superior" people in the top with huge salaries and annual bonuses of millions.
13
Much of this problem can be attributed to medical training. Med schools now teach prospective doctors things like "office management," and "cash-flow maximization," instead of patient empathy and communication skills. I've spent years enduring physicians with horrible patient interaction skills, and the imperious "I am always right" (God) attitude. It's infuriating, and drove me to find a concierge doctor. It's a stretch to pay so much upfront, but the quality of care is 1000% better. No waiting, 45-60 mins with the doc, instant access (even his mobile number), thoughtful explanations and discussions about options, tests, drugs, even alternative treatments. It's a shame we have to pay extra for this; it should be the norm, as it was 75 years ago.
32
@Mr. News having attended medical school in the past 5 years I can tell you that they do not teach "office management" or "cash-flow maximization" as required parts of the curriculum. At best there was an elective on business management in the evenings for those interested. However empathy and communications skills are literally hammered at every turn. They now straight up tell you when you start clerkships that affability will count more in your grade than ability. I have personally gone through and been graded on exams such as the OSCEs where the majority of the evaluation rubric assessed the minutiae of your interactions with standardized patients rather than your actual notes, diagnosis, and proposed treatment plan. If you truly wish to know how medicine is taught these days, sign up to be a standardized patient at your local medical school. They are always looking for people can teach bright-eyed bushy-tailed medical students how to be more compassionate to their patients.
46
A few weeks ago I tripped, fell, hit my head and lost consciousness. Several excerpts from the lengthy "Concussion Discharge Instructions" handed to me as I was leaving the ER (of a Harvard affiliated hospital):
From page 1: “Please return for any worsening headache, FOCAL weakness or numbness” [emphasis added by me]
From page 3 re: things that may occur
• “You may have a headache or feel confused. . . “
• “[You may have] problems with memory or paying attention”
Then, from page 6 re: when to call a doctor
• “Any change in ability to think clearly”
• “Not being able to remember things”
• “Very sleepy (more than expected).”
You’d think that, with >20 years of clinical experience and 8 pages of instructions, I’d be able to differentiate between what’s considered normal vs. when I should “call the doctor”.
Oh well, maybe it’s just the concussion. . .
34
Nobody understands the Medicare doughnut hole, because it's a messed up situation to begin with!
Our medical system seems to rely solely on pills. Try taking one pill 4x a day, another one 3x, another one 2x, and make sure you don't take this pill with that one at the same time, and see how long you can keep it all straight.
36
And then there's the classic: "Your test was positive" (meaning BAD).
B.
22
Totally agree. I’ve seen many times this problem of non-English speakers being able to understand medications
1
How do they expect seniors to understand the complexities of the healthcare "system"? They don't. The complexity makes if vastly easier for health care profiteers to separate the elderly from what remains of their life savings.
14
It's difficult to be proactive when doctors are on a 2 minute time allotment schedule. Coordination between doctors is limited even when records are shared through common medical groups. I recently was referred to a specialist by another specialist for an unrelated condition. That doctor then told me he was going to explain my condition to me but that I most likely wasn't going to remember what he told me. Most disturbing was that he didn't have a next best practice remedy for helping me understand. In my case he was wrong, I walked in as a fully informed patient. I had fully researched the condition and reasons for the referral - so much for assumptions. But what about the majority who didn't understand or were overwhelmed? Until recently, I've been blessed with good health, now I've begun to see that the healthcare industry has many cracks and craters in it. It does not bode well for the uninformed.
18
I find it exhausting to follow through with testing recommended at an annual wellness physical. Navigating appointments, scans, bloodwork, invasive cancer screening, insurance coverage and then being held responsible for the primary care provider to receive and evaluate the results. It isn’t about people not being educated, but about a health care system based on fee for service gone nuts.
23
"Ascertain whether her insurance will cover a certain procedure?"
Are you kidding me? CEOs of insurance companies cannot figure this out.
14
It is so unfortunate but true, many people have difficulty when it comes to deciphering medication instructions. The elderly are particularly vulnerable because of their need to medicate multiple co-morbidities.
I remembering having to place the tablets as prescribed by numerous doctors/specialist in weekly pill dispensers for my grandaunt and uncle and my grandparents too. It always unnerved me when the compartment could not be closed because of the number of pills that had to put inside of it.
I do not doubt the cause of many ED visits daily from drug-to-drug reactions and the like where elderly persons are concerned.
10
Beyond individual prescriptions, with the modern medical system we are ultimately our own primary care doctor at the top of the pyramid of doctors, medicines, hospitals, and insurance.
8
Excellent again. That's usual for Paula Span's articles.
Very complicated problem, health literacy. She has raised questions from every side of the issue, not just the patient, not just the family, not just the healthcare organizations...and not confined to any particular age -- altho the elderly are certainly a target population.
I don't see this problem going away any time soon. The general field of medical care is changing fairly rapidly. Health literacy must keep pace with these changes, some of them very dramatic and with new language all their own. We on the inside of healthcare can instruct all we want, but it will not be sufficient for more that a very short time period. Technology amazes, and it keeps rolling out more healthcare changes with more new words and more complicated instructions.
Start somewhere basic. Find help with elementary healthcare literacy...for FREE. Find professionals who keep up with a rapidly changing field and the capability to teach those changes to people unfamiliar with the fancy language.
It's an issue that affects us all -- regardless of age. Thanks, Paula, for laser focus on what's happening now. What should be ... that's where we need to go!
2
@Rea L.Ginsberg - As I said below, medical workers can continue to obfuscate their reports in order to maintain the status quo and force patients to go to their MD for interpretation but in the not distant future, robots and AI are going to replace many medical technologists and MD jobs. And those robots/AI's will be programmed to communicate in everyday English, accessible to average people.
@Joseph
Don't count on it. Who will own and program the robots? They won't be for us, but for profit.
4
Here I read a fair amount of dismay and comments that we can't adequately deal with instructions for medicines and information about diseases. I ask those who want to give up and/or lay off all responsibility for doing the necessary research, to instead fill the holes left by hurried MDs and 4-point-type lengthy instructions-and-warnings brochures themselves. What's the choice?
I can no-more-read those tiny-type brochures than anyone else who's well into the aging process. So I found all of them are online. Folks, you somehow got yourselves here to post a comment-or-five, so you have Internet skills. I'll give up viewing a football game or a grand old movie on TV to research material I need. If I can do it, you can do it.
"Living" is a confusing occupation. It beats everything else. I'll spend the time doing the research which will provide (based upon experience) me more useful information about my ailments than my very-capable physicians have the endless time to tell me if I don't know what to ask. I use that data, for instance, if I need repeat visits to my doctors, to form relevant questions -- which my superb Medicare-accepting MDs will answer once it's clear what it is I want to know. Ms. Span and Ms. Brody here are helping us all by writing their columns.
Internet research is annoying; it's time-consuming, sometimes wrong and it's often lacking critical information, but it's an already-available asset. I use it.
11
@Make America Sane As a starting point, I research my lab results - any numbers that are high or low and use them to jot down questions for my next visit with my specialist. It has served me well. I educate myself. My doctor explains things to me; they information doesn't go over my head; I learn that he's thorough; I can counter it or bring up any additional information or concerns, etc. In other words, I'm proactive and part of the team.
9
What to do for aged ailing people who don't have Internet access or are suffering Alzheimer's Disease, Dementia and/or other brain-wasting ailments... Use Medicare or Medicaid or State agencies or various charities or religious groups, for instance, to assign "expediters" or such to help with information-services but not have guardianship over these seniors.
When I was a cub reporter just out of college, I got bottom-of-the-barrel assignments no one else would take -- such as having to go out to "old age homes" to interview every person who could still converse who was celebrating her/his 100th birthday. Back then, over half-a-century ago, I found the centenarians to have been sent to those institutions because they had no surviving family nearby or no one wanted to take them in. The seniors I was invited to interview were surely pre-screened to be certain they wouldn't paint the institutions they were in as hell-holes.
So the problem of what to do to help what we used to call "extraordinarily old" people is not new. It's an awful thing, perhaps, but in the unlikely event I make it to, say, the age at which my oldest biologically-close male relative had reached at the time of their deaths (the women lived much longer even then), then I may have to deal with this issue. Meanwhile, I'm trying to build a new network of friends who are my age or older, which is designed for mutual benefit of the aged sane (or semi-sane) among us. I ain't goin' down without a fight.
8
Instructions are written for the protection of the manufacturer, not for the benefit of the patient. Incomprehensible instructions are a feature, not a but, to them.
11
@JND - I'd also posit that much of the use of technical jargon to patients in the medical world is there to ensure that people in the medical world enjoy full employment and relatively high incomes.
Every time a patient has to schedule a follow-up office visit with someone merely to receive and interpret a medical test result, the MD interpreter charges for another office visit and the patient pays another co-pay. This also increase overall medical costs.
The medical industry maintains itself and the status quo via artificial and unnecessary complexity.
6
Why isn't the Department of Education doing something at the national level? English is the language of this country. I don't care where you come from, learn it. Got it!!
1
@Babsy I'm sure you're just fine with eating fruits and vegetables that immigrants harvested, and with sleeping in hotel rooms cleaned by immigrants and living in a home that immigrants helped build. And guess what, you enjoy the advantages of their not being fluent in English: lower wages. hence lower prices for you.
And, just so you "get it" - many of those seniors who no longer have health literacy are native English speakers.
26
You might mention another problem--the pharmaceutical instructions for use. They are written in a type much too small for old eyes to read, and should really have a summary that would indicate major contraindications as well as a website to go to. At least with a website I can make the type as large as I want.
8
I share your concern but, summaries bring their own risks.
Better, as already noted here a quick web search for the relevant drug or treatment will bring you that website and the opportunity to enlarge type.
Absent Google, a magnifying glass and bright light has served humanity well for decades. Today, hopefully it will be a magnifier with bright LED illumination built in.
1
Although many of us probably get into this same self-congratulatory mode - my former endocrinologist had told me on more than one occasion that I am in the 99% of patients in terms of knowledge and care - the results point to a problem that needs to be addressed, both how to educate the populace as well as how to handle those that cannot or will not become more educated. We deal with a government, even under Democrat rule, that is likely beholden to interests that profit from our ignorance and illness.
Granted these are broad generalizations, but we deal with the following:
- A food industry dominated by unhealthy foods, that promotes choice over welfare
- A pharmaceutical industry making money from continuing patients, not cured, that spends 1/3 of its budget on advertising
- A medical establishment more and more corrupted and beholden to monetary inducements, and blind to its own biases
- A government that is both captured by industry, often ideologically against improving social welfare via education and regulation, but interested in promoting business interests and/or deregulation
17
I think the points you mentioned are very true. As a high school senior who is interested in going into premed, and eventually, the healthcare field, I sometimes wonder if I will also be in a workforce where is “making money off of continuing patients, not cured.”
I often say that I will strive to be a good doctor, performing my best for the patients. But I am sometimes really worried that one day I’ll also be corrupted by reality.
7
Clear, written documentation from health care providers would provide considerable benefit to patients of all ages, especially the elderly.
I see a number of medical specialists. Only one of them provides printed documentation of instructions and next steps - along the lines of, "To help with your such-and-such condition, you must do certain things, and here are some other things that you should try to do. And here's why." The rest of my doctors rely totally on oral communications.
Clarity also matters. Prepping for a colonoscopy isn't rocket science, but the written instructions that I recently received managed to make it appear as complicated as possible. It's as though somebody assembled all the info that a patient needs and then scattered it randomly over two pages. (Actually, not quite all the info. They could do first-timers a favor by telling them what to expect after drinking the magic cleansing potion.)
38
I truly do not understand how elderly folks handle their medical needs by themselves. It takes an everyday effort of an hour for my wife to sort out the various issues concerning my 93 year old mother-in-law.
Part of the larger issue with the medical field is that they still to this day don't believe they are in a service business. They treat "clients" worst than any other field that has clients. Get a follow-up call or even get a doctor on the phone? forget it. doesn't happen.
Even with the online capabilities I find the information flow to be non existent. I asked a straight forward well crafted non emergency question via the online message technique. It was should I do X or Y or perhaps Z. I got a single word answer Yes. This tells me the medical side never read my question. When I later asked my doctor about the answers I receive he got very defensive and finally admitted that he doesn't do them (his staff does). He said they would waste his time. I replied that I expected a doctor's response or at least a review by him not some junior tech to answer without oversight. I have since changed my doctor.
39
First of all what a sad commentary: this person's parents do not have common sense (three pills a day, etc.). Any office administrator in anyone's physician who does the billing would be glad to provide info and instruction on the Medicare donut hole. Pharmacies spell out quite well in directions and package inserts on how to take meds and their side effects. If one cannot read (at age 70 or before after elementary school ) that is refection on the public schools which are more interested in public teacher unions and compensation/benefits than educating.
1
@Jan
I think you may have missed that her parents' first language is likely not English?
I am disturbed by your comment and a number of others here that reflect a thinly veiled contempt for people with literacy problems in general. Sure, it is partly a reflection on the schools, but why is that stated so dismissively? It reads like, "So the heck with 'em."
17
@Jan Thanks - it did not occur to me to ask the doctor's office staff for assistance with that. They should have some helpful knowledge.
However, I should point out my 89 yo father has macular degeneration and dementia and all his prior education will not overcome his current lack of ability.
7
Many seniors are just to ill to comprehend medical information. Their caregivers if family members are overworked and overstressed taking care of their own families and simultaneously dealing with a sick person. No one has the time or energy to complain. Thus the system continues to exist and frustrate the next generation of elderly and their caregivers.
11
Is the medical community that disconnected from the humanity they purport to serve? Not always, but often they expect the person who is at a point of maximum distress in their lives to have the cognition to recognize and follow the "read this and follow the directions" dictates of their recommendations and support?
This they do thinking they're helping the person who's struggling? Indeed, sometimes the very things, the drugs and such, they recommend promote more confusion than not. Yet they expect the patient to follow the instructions unaided?Physician heal thy ways.
John~
American Net'Zen
7
I guess I'm not understanding how a doctor who doesn't care about communication enough to listen to the patient for more than one minute per appointment, working in a service delivery system that doesn't allocate more than 14 minutes for the appointment, and can make people wait up to 1/2 year for a diagnostic test is going to give a hoot whether the patient understands them. The relevant question, "Can the patient pay?" was asked by the desk worker on the way in, so the rest needn't be given much attention.
Oh, and, "What’s the Medicare doughnut hole? 'I had to look it up,” she said. Once she did, she wondered, “How do they expect seniors to understand this?'" reeks of age prejudice. I was in a 5 person meeting last week, the 30 something, who was in charge, had a bachelor's and 5 years experience at the current job, the two 20 somethings were almost out of, and just graduated from college. Both of the seniors in the room had Ph.D.s. Contrary to popular opinion, nobody drooled or needed computers explained to them.
13
Being university educated means nothing. My aunt and uncle are in their early 80s. Both have master degrees. Both are native English speakers. Their doctors assume that being fairly affluent and educated means they understand discharge instructions and treatment regimens.
They have no clue and get furious when their kids try to help them. At least the parents mentioned in the article will use an iPad. My relatives won't even try.
The bulk of their noncompliance is medicine is now more than chucking Penicillin at a cough, set a broken bone, and cut out what is bad. They long for the days went a doctor said here take that. You went home and took "that", and it was over. "That" wasn't 7 scripts for chronic conditions. "That" wasn't instructions for a colonoscopy prep, which was poorly written out and confusing. They both botch the prep, and had endoscopy cancelled once in the exam room.
A big chunk is being fed up and checking out. Another is the 7 minute office exam, where the doctor blows threw diagnosis and treatment plan like he was talking to a 4 year medical student. My aunt's questions come up when shes checking out at the front desk, never in the exam room with the person who could actually answer her questions. Why? It's too overwhelming in there. That nice young women scheduling the return appointments doesn't trigger her anxiety shut down mode to maximum capacity.
Poorly written instructions/dirctions are the tip of the noncompliance iceberg.
18
@Ford313
I couldn't agree more. Since it takes time to process the information just given, the patient's questions don't come up in the exam room. It's always later, at the checkout desk, in the car on the ride home, later at the dinner table, or when falling asleep that night. And the physician saying, "Call us if you have any questions" is an utterly useless phrase and should never be said. My solution is to have a nurse present in the exam room, who will then be familiar with the visit, and have the nurse follow up with the patient by phone the next day, to answer the questions that arise, to clarify confusing language, and to clear up any misunderstanding. Even better would be a home visit in the following days to assess their understanding, ability and/or willingness to follow the instructions. Nurses are excellent at finding ways to overcome the barriers that keep patients from implementing their treatment plan.
13
It is important to design and communicate information at a level that everyone can understand. It also might require spending extra time ensuring the patient, family, and caregiver understand --- and that the clinician is listening to the patient in conveying their interpretation of what is being said. The patient might also be identifying reasons as to why they can or cannot follow a care plan.
When assessing health literacy of a patient, do it often. As a patient progresses in a chronic disease, the types of treatment or interventions will change and can become more complex.
Too often health literacy assessments are conducted once or based upon education, age, etc. As the article clearly illustrates, health illiteracy can occur at any age and with any educational attainment.
Improving health literacy by working closely with the patient, family, or caregiver improves health outcomes and reduces the chances of health errors. Errors occur most often because clear and effective communication techniques are not used in care plan discussions, medication management, and patient preferences.
3
I’m glad to see recognition of the fact that the elderly are less likely to advocate for themselves and question treatment, due to growing up in a time when doctors went unquestioned. This was certainly true of my mom.
What’s not addressed is those who can’t do so because of confusion caused BY doctors and drugs. We were told by a hospital that my very confused MIL had Sundowner Syndrome, which would likely progress to Alzheimer’s or similar. I just happened to hear a radio interview with someone who had found out the hard way about the effect of anticholinergic drugs on their own parent. We brought in an outside MD to review her drugs and he took her off most of them - surprise; almost instant recovery of her usual biting intelligence. But what if we hadn’t been there for her?
72
Diagnosed with “mild cognitive impairment last summer and prescribed a drug intended to slow cognitive decline.” This is a false claim that should have been picked up by fact checkers. There is no disease modifying drug for prodromal AD, which forms the bulk of MCI. Please get better.
4
@Dave
Both donepezil (brand name: Aricept) and memantine (Namenda) are prescribed to treat symptoms of cognitive impairment and dementia. How effective they are, for whom and for how long, is another question.
7
@Paula Span Aricept improves memory but does not alter the course of the disease. Memantine is approved for a late stage Alzheimer’s disease and is also only symptomatic. Again, there is no disease modifying therapy in Alzheimer’s disease. That’s what the field is working on with current clinical trials.
4
@Paula Span: What Dave is saying is that the drugs currently FDA-approved for the treatment of Alzheimer's disease, including donepezil and memantine, work only to ameliorate symptoms, not to slow down disease progression. I spend time at every office visit explaining this difference to patients and families: the disease will progress at the same rate (neurons will die at the same rate) regardless of whether you take these meds. There is no "neuroprotective" effect, and suggesting otherwise sets up patients and families for deep disappointment.
14
I'm a physician. Everything in this article is true, but the everyday reality is far worse about misunderstanding instructions, prescriptions, etc.
The most deadly health illiteracy is the assumption that an ER visit or hospital stay has cured you, that you just have to take the pills and everything will be ok. That's not always the case. If you don't get better after discharge, and certainly if you get worse, go back to the hospital, or at least call your physician and check in. I have seen too many disasters when even intelligent, educated people don't use common sense in these situations. You can die.
Also, urgent care is for sore throats, sinus infections, maybe a minor injury. Do not go there if you have a chronic illness and get worse, or if you are seriously ill. Go on to an ER or call your physician! Most providers at urgent care are nurse practitioners, who may not have a clue what to do in a complicated situation or do the wrong thing. They also don't know your history, and have limited technology available. Just because you can be seen in 20 minutes does not mean that you will get the right diagnosis and care.
16
@Susie Unfortunately, money plays a big part in where we choose to go. My husband’s last ER visit cost nearly $5,000 OOP after multiple tests, and he left without a diagnosis - which he then got in 5 min from a family doctor who listened to us.
6
It gets better than that. My elderly uncle when to the urgent care while having a heart attack? Why? His wife called the doctor. The doctor said call 911. My aunt and uncle decide the doctor was wrong (?). Drove to the urgent care and said they thought it was bronchitis. Urgent care turned into a circus with 911, ambulance, ER and bypass surgery. My relatives didn't want the ER because that's where people go to die. Being fair, I have 50 year old friends who think urgent is equal to the ER. Shows up with half a hand hanging, and thinks the PA can stitch it up in the back.
3
@Ford313
But you see, we're afraid if we go to the ER, our insurance won't cover it, if it turns out not to have been what they decide is a "real" emergency. That will be several thousand dollars, please.
12
Some patience and persistence may be needed for people who are unfamiliar with medical language, but there is much more accurate information online and in print now than ever before. Regrettably there is also a lot of disinformation. Try to find a reliable site like the Mayo Clinic and major medical schools.
7
After a very serious illness, I worried about my mental state because I couldn't understand the instructions on a new medication. That problem was solved when the prescribing doctor's nurse unexpectedly called to explain the dosage to me. "The doctor thinks so fast that sometimes his instructions aren't clear to the patient," she explained.
Wow! Just wow!
16
@ERS This should be normal.
3
One probably would have to be God to be medically literate.
I'm an engineer with Asperger's Syndrome who has two college degrees in the sciences, and so you can imagine that I fully read the prescribing circular for each drug that I am prescribed.
Who do you suppose knows more about that drug, me, or my doctor? Doctors are notoriously uninformed about drugs. One's best move is to ask a licensed pharmacist about the drugs you're given. Few do.
As for the medical illiteracy, with all the lies, er "errors," being put into our computer medical records, with our doctors listening to us for 11 seconds before they squirrel off, twice a year for 15-minute visits, where are we supposed to get that "literacy?"
Dr. Google? That's derided by all the professionals, although the CDC and NIH have a lot of scholarship on line. Truth be told, if you stick with peer reviewed material you can learn a lot more on-line than you can from your doctor who not-so-secretly is working for your insurance company, and not for you.
So much doctrine has been reversed in the medical arts (fats versus carbohydrates, fish oil, radiation to treat eczema, ad nauseum) that it's fair to suspect that the doctors are doing it by Braille just the same as we are, except with a license.
29
@Charles Coughlin Couldn't agree more on this point, and wonder why we live in a world where so often one prefaces remarks with an explanation of Asperger's, as if an excuse is needed for those who read all the information in order to understand all the ramifications of their medical prescription.
6
@Charles Coughlin
You raise a good point - no point in wringing our hands over "health illiteracy" if the materials that are available to us to read are incomprehensible and/or full of errors. It's not always illiteracy, sometimes it's being given garbage for instructions.
3
A lot of the complexity stems from Big Pharma protecting itself from liability. I can't count the number of times that my medication comes with a warning not to take it if I'm allergic to a long list of ingredients -- including the main drug -- I am totally unfamiliar with and have absolutely no clue whether I'm allergic or not. But at least I was warned in case I swell up to a reasonable facsimile of the Hindenberg blimp.
My prescriptions now all come with a miniature encyclopedia attached to each, printed in what euphemistically is termed "fine print" legible only to small insects with multiple eyes and at least one medical degree.
What all this says to me is that the patient isn't the primary focus of our healthcare system but lawyers, insurance companies, pharmacies, drugstores, doctors and even bureaucrats come well before patients.
The bottom line for healthcare and pharmaceuticals is a skull and crossbones with the caption: we make the profits and you suffer the consequences because we're indemnified.
Do no harm but buyer beware. Just read the mouse type.
Gesundheit indeed.
30
I lay a good deal of the blame on pharmaceutical companies that provide inserts with medications that contain thousands of words in 5-point type (smaller than an ant) that are couched in a dangerous combination of legalese and med-tech lingo, designed to limit liability of pharmaceutical companies - not provide critical information to patient users. I’ve gotten some of these myself that were 20” to a side, with writing on both sides and not organized in any logical manner.
Not only seniors are at risk. My niece, who is an education administrator with a master’s degree, attributes the surprise entrance of her third child was to the interaction of an antibiotic with birth control pills. That useful information was buried in thousands of words on an insert. Neither the prescribing physician nor the pharmacist thought it worth mentioning, till she learned she was pregnant a couple of months later and asked.
24
Perhaps if medical schools weighted EQ, empathy and communication skills as highly as they do IQ and academic achievement in sciences, communication might be improved. How many times have I had to politely tell physicians that they can address questions directly to my Mom rather than me?.... Although a bit hard of hearing her cognition is fine. I've also had to have the same conversation with a pompous surgeon when he asked about the condition of a dear friend, who was suffering an awful death, intubated in an ICU and able to communicate only by eye blinking in response to questions. The whole medical education enterprise focuses on data and research studies rather than the patient ...... I wonder if there are studies showing how well Nurse Practitioners communicate with patients vs. physicians.
19
My gastro NP is way better than my doctor was and now that he has closed his practice I am going to follow her to her new doctor. His previous NP wasn’t very good though. My VA NP is good also. My wife has been going to her GP NP for over 10 years and has never met the doctor and is well pleased. So I guess like doctors there are good ones and bad ones. At least they seem more interested in you than the doctors do.
6
I recently underwent open heart surgery. It was an overwhelming job to understand all that was happening to me, and I have a Ph.D. from Vanderbilt, and a loving, and intelligent, wife, who followed every step of the way.
All of the people we dealt with tried their best. But get a bottle of medicine and there are three pages describing it and the potential side effects. Who can digest that kind of information? There is one medication that we, to this day, don't understand why it was prescribed. We have confidence in the hospital so are fully ready to believe it was needed, but why?
After the surgery, my wife became in charge of my morning and evening medications. I needed her for this. Thank goodness for her. It was overwhelming.
Studies show that about 50% of people who are prescribed medicines for high cholesterol don't take them. Is it because they are sloppy or is it because it is simply more than our limited brains can deal with.
I had something after my surgery called "A-Fib." That sounded really bad because who wants to be a liar telling fibs? Later it was Atrial Flutter, which sounded so much better because butterflies flutter. I have been treated twice for the Atrial Flutter, the final treatment apparently being successful, but ask me to describe what I had and all I can say is that my heart was beating erratically.
It is a serious problem. I empathize with health care professionals, with patients, with elderly patients, and with my loving wife.
10
My elderly mother is unable to manage anything in her life and needs to be supervised in almost all aspects, including ensuring meds are taken as prescribed. She was a once professional with Masters Degree training before Alzheimers. She is not able to understand details of her own medical conditions, much less details of prescribed medications. She can't remember what she has been told. She is unable to access things on the internet and doesn't understand how to use a cell phone.
Medical care delivery/communication has evolved to a system that assumes a fairly high level of computer and general life competence, unfortunately, this is not the case with many people it is trying to serve.
37
I had to look up doughnut hole too! I started to read the multiple paragraph explanation of it and got a headache!
lLt’s face it: US Doctors and Nurses are among the best in the world but the system is crap!
7
@William Perrigo Without a good system of prevention and care, the "best doctors and nurses in the world" are almost usrless - since true care is about action, habit, and intention - not just about knowing and caring what is wrong.
4
After my elderly dad survived a pulmonary embolism a few weeks ago, I feared that problems and errors with his meds were perhaps just as likely to prematurely kill him. Patients with Medicare seem to be put on meds and left on them forever, unless that patient (or a daughter) speaks up and asks if its really necessary to cumulatively wind up taking 5, 6, 7 or 12 pills every single day. Meds whose main effect is lowering blood pressure are taken alongside others whose major side effect is doing the same. And people wonder why the elderly fall so often!
18
Most seriously, very, very few patients are given the NNT (needed to treat) numbers for their medications.
An NNT, based on clinical research trials, indicates the number of patients that need to be treated with a particular medication to prevent just 1 occurrence of the intended purpose within a given period of treatment.
For example, most blood pressure mediations, whether diuretics, beta blockers, calcium channel blocks, ace inhibitors, etc. have an NNT of 100 or so for a stroke within a given time period. That means that 100 patients must use the drug in order for 1 patient to avoid a stroke.
Related to this data is the cost efficiency of drug treatment for a given diagnosis. This can run as high as several hundred thousand dollars for just one effective treatment, even for the most common conditions.
On top of it, making the long odds worse, is the NTH (need to harm) numbers; How many patients need to be treated to cause HARM. Every drug has a side effect. The difference between an effect and a side-effect is in the eyes of Big Pharma.
Long story short, aside from anti-biotics and pain killers, the most commonly prescribed drugs are only a little bit better than placebos, and often even worse, like the one cited in this article.
For the physician, saving 1 in a 100 patients from a stroke is better than nothing, but the patient should be told
the long odds and the side effects
21
@Samm
What you have noted is, perhaps, the most-important unreported medical-news story out there for major newspapers.
It's, as you know, ignored by most physicians (Okay, I'll limit that to those I've met and those who have treated me), and long ago, I used to be news reporter covering the world of medicine and physicians. That a few readers bring it to the attention of followers of the health-care columns at The Times is indicative of a grave problem. I'm retired now and the two best columnists here are themselves benefiting from Medicare and perhaps overwhelmed with all the necessary other news of medicine that needs to be reported -- or not. So where are the younger reporters' and editors' knowledge and noses for news?
Bless The Times for devoting the attention, space, resources and commitment to news of medicine. I hope your mention of NTT statistics will awaken someone at this publication, along with a few hundred-thousand physicians, to this issue and associated statistical ones of enormous impact. I hope... I really do hope...
9
Today you are most likely just handed a standardized, one size fits all, print out, on your way out the door by some assistant who can NEVER answer any of your ?s. And the doctor is already busy with another patient. I always feel as if I am left hanging. A very incomplete consultation. As if being just another sick person, I don't matter too much. Try getting a doctor on a phone, HA! It takes a week for anything at all to be done, if not longer. The medical merry-go-round is dizzying for someone who is not well. It'll wear you out and make you feel even worse most of the time. And we haven't even gotten to the insurance part. Aaargh!
22
Health care professionals and pharmacists must always give instructions, both verbal and written to two people. I cannot tell you the number of times that info was given to the patient who does not remember. This is just not right.
7
Too many people come alone. cannot blame the pro's for giving info to only one person, when only one person shows up.
3
@m.RN As if everyone HAS someone else to come with them.
6
I'm 75. I have a chronic pulmonary disease. I have participated in pulmonary rehab 3 times weekly now for 12 years. All of us in the group are old, but most of us have a decent understanding of our disease and what meds we take to treat it. Most in the group are not college graduates. Those who are the least bright, understand things the least well. But these are people who followed their doctor's advice to attend pulmonary rehab and do so faithfully.
On the other hand, I have an 85 year old cousin who lives with her 65 year old daughter. The daughter is a teacher. But neither of them appear to have any idea what is really wrong with them, what they should be doing about it, and what the prognosis is. When I make suggestions, they always have a reason why "that won't work for me". A full-time, in house medical advisor would not be able to help my cousins!
People are either pro-active about their health or are passive. They have most likely approached pretty much everything in their lives this way, their entire life. And they are living with the results of these choices.
It's really not about the failure of a system (obviously there are failures sometimes and I would have had no idea what LTAC meant!), it's about how one is temperamentally and how they have dealt with life. I'm sure if one interviewed an employee at the state license plate office, she would say the same; some are clueless and some come in with all the necessary forms.
14
Another problem resulting from low health literacy is that it leaves people more vulnerable to snake oil, unregulated supplements, miracle cures offered by con men, and woo.
34
This is upsetting that so many people over 65 have complex illnesses and are unable to manage them. This is why I am so private about my age because it is shorthand for old and impaired and unable to lead your life. How disheartening that we Americans are so darn sick!!! NO wonder I won't hang with people over 60.
I am turning 69, in perfect health, practicing attorney, never stop moving, cook from scratch everyday, and so on. I take NO medications and have NO medical issues. I must protect the privacy of my age because I see from this article that I am behaving more like the typical 40 year old, not almost 70. I don't really think I'm all that special, and I don't understand why so many other people over 65 have so totally dropped their ball. Laziness, ignorance, who knows? But I will have nothing to do with my "fellow" seniors. Depressing.
9
@Mary Rivka The problem is the lumping of all people 65 to 100 into one geriatric group. So my mother is 94 and I am 30 years younger but we are medically equivalent.
5
@Mary Rivka
I am also 69 and have a number of health issues, none of which are my fault and for which I take a number of meds. Every time I am prescribed something, I look it up on line and check the side effects, drug interactions, etc. We aren’t all incompetent old bats. The fact that you are in perfect health and have no medical issues doesn’t make you special. I was in perfect health not so long ago as well.
20
That is exactly correct. You are fine until you’re not. I know people who are 60-70 plus age group. When they tell a doctor or nurse that they are not on
any medication the health care professionals cannot believe it. The assumption is that everyone is on something.
6
The National Library Medicine Library has a website for the general public, https://medlineplus.gov You've paid for it'; use it.
The cardiologists I see hond out a list of websites. Ask you specialist for sites.
My primary physician gives me a printout of his notes, instructions and future appointments. They are more useful than my memory. Ask for notes.
The problem of medical terminology is inevitable; the diagnosis become more percies and treatments improve. Be glad for the changes.
4
1) AI will be useful for this type of thing, perhaps by keeping our pills in some type of containers that have 'receptors' on the container lids, and whereby it can track how many pills we have or have not taken, when we took them, and then give us audio reminders of when we should take the next pill.
2) Americans as a whole are obviously over-drugged. Caregivers should always be asking .... 'is every one of these prescriptions really necessary?...which prescriptions could my patient/family member theoretically forego? It stands to reason that the more prescriptions, the more likelihood for complications.
3) Indeed, prescriptions need to be more clear. I once got a prescription for an ear infection (granted, it was for my cat...but still....) that said:
"Apply 2 drops to both ears twice a day once every other day for fourteen days."
Say what??
6
What if you don't know what questions to ask? Many people have things explained to them in Medical jargon and when asked if they have any question they do not even know where to begin, so they do not ask, as they feel stupid
There should be a course offered to all Medical students that teaches them how to talk to lay people. It could save a lot of lives.
19
I believe that you are putting an overwhelming and impossible burden on patents when you expect them to understand their own medical information.
Jesse Gruman, a social scientist who developed radiation-induced cancers all her life after she was treated for Hodgkin's lymphoma, interviewed 200 patients or their families who had serious or fatal diseases. She found that only 20% wanted to learn about their disease; 80% did not. Even lawyers became overwhelmed by researching the medical literature.
Eugene Braunwald, who edited the standard textbook on cardiology, and Harrison's internal medicine, said that when he needed medical care, he didn't try to be his own doctor. He found a doctor he could trust, and followed his doctor's advice.
The first birth control pills had to be taken reliably, or they wouldn't work. The drug companies easily came up with cheap, simple dispensers to make it difficult for women to miss their pills.
You could go to any good engineering school, and ask a class of engineering students to design a cheap, simple way to make sure that patients with a complex medication schedule take all their pills. You could go to the top 10 schools and come up with 10 good solutions.
Then you could compare their effectiveness to the best patient education methods you describe.
I would put my money on the Canadian engineering students.
13
Two basic reasons patients are being treated so poorly by their own health care teams regarding helping them understand more clearly their own medical problems.
Number one- and a biggie- unlike decades ago, physicians no longer walk the plank with patients in explaining, in simple laymen language minus all the complicated acronyms and fancy fourteen letter words, their disease and the often times various courses of treatment, because their one on one patient visits are now being stop watch timed to the second by their profit seeker business partners. There no longer is a social incentive to assure a patient fully comprehends his health care regimen and goals.
Number two is a direct result of the quality time inefficiency of number one - Patients are expected, on their own, to go and pay some other 'professional' to fill in the long winded blanks Dr. So and So was too rushed to explain in depth.
It's all about the money so more patients can be squeezed in to an eight hour clinic day. Health care is now a full for-profit business endeavor.
And until Americans change that, its only going to get worse.
19
It's not up to the patient to untangle medical jargon and abbreviations. It's the responsibility of the medical profession to explain. No matter how health literate a person may be, there are many medications, medical interventions and jargon to try to understand. Another problem people encounter is the medical profession not being willing to say "I don't know."
13
Healthcare is complicated...it's not just discerning labels. It's understanding how one condition (or its treatment) may affect another.....and how past conditions may affect those in the future.
Patients must learn how to advocate for their care so that they can break through the barriers which have turned healthcare from a collaborative effort into a series of discrete transactions.
5
I work with a patient population with extremely low health literacy. Here are some points:
Medicine has become increasingly complex. The health care system alone is not going to be able to solve the problem of low health literacy. Families and community resources will need to be involved.
By federal law, doctors are required to provide the patient with an updated list of their medications at every visit.
With respect to jargon, these terms are for providers; it's our job to interpret for patients.
Elderly patients are going to require family members to be involved in medication administration. It is extremely helpful to have family members present at the visit.
Here are some of the things I do:
Simplify the medication regimen by getting rid of "junk" prescriptions - meds of uncertain efficacy.
Whenever possible prescribed the once-daily version of meds.
Inform the patient that the instruction for each med is written on the bottle. (many don't know this.)
Be clear about the difference between "as needed" meds, and regular administered med.
Have family members use labeled pill boxes for daily administration.
Reinforce basic concepts at each visit. Taylor the explanation to the patient's level of literacy.
Patients who are internet literate can be encored to learn more about their condition using reliable information websites.
11
@A Doctor Would a mandatory health care program in high school help improve patient literacy?
Could a class teach students good habits of prevention and basic understanding of how their body works?
1
Calling seniors illiterate could have been said 30 years ago, but today seniors generally are more capable than young people because of their experience as well as advanced education.
When doctors don't make things clear, they drive patients to the internet. It is not the internet's fault, it is the doctor's.
The internet has great information as well as bogus information, and people of all ages either have the background to understand the difference or not. It is a function of education and experience, not age.
9
@Marty Smith - Some of it IS a function of age. Very elderly patients who were once sharp and "with it" may be slipping cognitively and become easily confused. Family members need to be attuned to those changes and provide more oversight and guidance at that point.
3
@MegWright You are referring to someone who is ill, not just a senior.
5
This isn't just a problem for baby boomers. I know a lot of young people who have problems communicating with healthcare workers. I just finished a writing gig with a major health insurance company, and way too many people there assumed consumers understand the industry terminology and jargon. There was no support for providing clear, complete, accurate information.
The actor Alan Alda is on a campaign to help scientists, doctors and others communicate better with the public. If you haven't read his book, "If I Understood You, Would I Have This Look On My Face?" pick it up ASAP. It's eye-opening.
17
I wish that medical folks would realize they work for us. Even if the insurance folks are paying the bottom line is all of them from the X-ray tech to the insurance companies work for us and if we all would hold them to the same standard we expect to be held to we would all be healthier. I know sometimes my bosses didn’t understand what I was saying until I explained it in terms they could understand and it improved all of our projects when they were able to explain in simple terms to their superiors as well.
5
Just why is “pulling the plug” equated with “playing God.” In my view that is backwards and the real hubris is putting it in to begin with. Believe it or not, human beings do get old and multiple systems including cognitive ones will all sooner or later fail. I am 69 and blessedly in good health with few senior moments. And I have taken a vow that when that stops being so, I will not depend upon machines and toxic medicines to keep me alive no matter what the quality of my life. If I can’t move, think or care for myself, I would never wish to so burden my loved ones. As to the general ignorance of major segments of the United States population, as an inveterate budget world traveler, I rate it as terrifyingly high.
12
I am an RN working in the home kidney dialysis setting. My patients attend a monthly meeting with their care team, to review lab results and discuss many complex issues related to their ongoing care/life support. Patients are encouraged to ask questions and participate. The conversation involves the physician, social worker, nurse, and a dietician. Family members are often present, too. The meetings are productive; issues are thoroughly discussed and plans made. Patients can take notes, but more often a team member handwrites notes for the patient. It's very individualized, with simple instructions, and prioritized so that if only one thing is able to be done, the patient knows which is most important. And then I discovered the most extraordinary thing. By staying behind in the room after the rest of the team left, the patients would share with me their impressions of the meeting that just occured. What an eye-opener! It's quiet, and things start to "sink in" for the patient about what it all means for them. They're still processing it all, because it's enormous-how all of this affects their lives. And what I found is that the patient shares some bit of important information that was missed in the meeting, that will affect their care. Trust is essential, and taking 5 minutes to pause and reflect, can go a long way in improving quality of care.
100
@Kane
Dialysis cost about 100K per annum. The $$ are there for those patients. (And what happens when people are on DIY dialysis -- yes very possible!!)
1
@Make America Sane
Yes, those DIY dialysis patients are my patients. They perform the treatments themselves at home. There are several dialysis modalities available: hemo in-center, hemo in-center overnight, hemo at home, peritoneal at home with or without a machine. (Medicare covers 80% of that high cost, regardless of the modality option. Patients who don't qualify for Medicare coverage and have no insurance still receive care.) My point, though, is that nurses play an essential role in helping patients navigate the healthcare system, interpret jargon, and overcome barriers to their care.
14
I am a retired emergency physician and I have had trouble finding good practical medical information. Most internet sites, even for doctors, are too simplified and incomplete.
Therefore, I strongly recommend using Wikipedia first for all medical problems. It is as good as a textbook, but has little theory or research references.
9
@Andrew Mitchell Wikipedia is grouped sourced by anonymous authors and can easily have incorrect information. Stick to legitimate sites.
2
@Marty Smith
It is well edited though occasionally temporarily hacked. I have used it many times for all kinds of things and am impressed by its accuracy.
Never trust anything unless back by other independent sources including NYT repliers.
3
@Andrew Mitchell Mayo Clinic is helpful
1
Why doesn't this article mention pharmacists? They are the medication experts on the health care team, and they help patients with medication therapy management. Pharmacists are trained to understand complex medication issues, and they consult with patients in many health care settings, including hospitals, managed care facilities and ambulatory care clinics. Indeed, they are the most accessible health care providers; I'm surprised that the reporter overlooked them.
46
40 yrs as an RN here-sadly, follow the money trail. No $$ to explain and ensure understanding=not done.
10
Recommendations keep changing: fish oil no fish oil; vit. D no vit. D. No multiple vitamins at all. Aspirin no aspirin.
And then if you need an antibiotic, does it interfere with the rest of your meds?
Instead of long forms, how about a short form detailing all meds and instructions as to dosing -- how much and when
WikiP is pretty good at explaining drugs -- at great length.
2
Part of the "health literacy" problem, at least in the U.S., is due to the fragmented nature of the healthcare system: No one is responsible for the "big picture," no one monitors the overall needs, behaviors, and outcomes of the individual patient, and billings, prescriptions, and advice are often fragmented and inconsistent.
Also, I've found that medical personnel--including doctors--are maddeningly insensitive to the context and to the characteristics of the individual patient--for example, they talk to highly educated and intelligent patients as if they were uneducated children, whereas they talk to elderly patients with cognitive impairment and to people with only high school educations as if they were PhDs (e.g., asking a patient if he/she "voided" rather than "peed"). In all professions, there's no substitute for common sense.
28
@Richard - My late husband was very disabled and increasingly cognitively impaired as his disease progressed, so I was entirely responsible for his meds. One of the things I did every year was make an appointment with the hospital pharmacist where his specialist practiced and have an in-depth review of all his meds, with an eye toward eliminating any that were unnecessary as well as those that were contraindicated in conjunction with another med.
9
My doctor recently suggested that it was time to go on a statin drug to lower persistent high bad cholesterol and triglycerides. I'm 69. After researching on the internet, I said, "Ok, let's try a simvastatin." That type seemed to have the fewest risks of side effects. The busy pharmacist at Walgreens just asked if I had any questions. What he should have said was, "You need to come in to the store (I was in my car) and we need to talk." Because he should have told me what other drugs or treatments, even OTC, should be avoided, what to watch out for, why it needs to be taken in the evening, not morning, etc. Just reading the stupid printout they give you in size 6 font (indecipherable for most old eyes) is ridiculous.
This is a failure to me not only on the part of the dispensing physician's office, but most definitely on the part of the pharmacy. It's a good thing I know my way around researching legitimate medical information online. In ten years' time though? Who knows what my mental capacity will be?
15
Is it any wonder that there's a fake president getting away so far with more felonies than anyone can count? Political literacy might be more helpful than the medical/health variety.
12
@jim jennings Democrats have a goal of fixing healthcare. The Affordable Care Act, which requires coverage of those with pre-existing conditions, was a beginning.
Vote them into office and let them do their job.
3
@jim jennings Oh, good. We were waiting for a president bashing comment. So appropriate.
If the mid-20th century stripper Adelaide (the beloved lead in Guys and Dolls) can read through a medical textbook with big words and then say
"achoo
In other words
Just from waiting around
For that little band of gold
A person can develop a cold"
Adelaide can plow through the textbook because she absolutely needs to know what her problem is and there is anger but no self-pity.
The problem is not illiteracy, the problem is they don't care or
in other words, not interested in what makes medicines tick,
a person can make themselves sick.
Real real sick
1
All of the fragmentation, lack of coordination, poor communication and complexities of our healthcare system end up in the lap of the patient (or their proxy). And they are inundated with information and misinformation and conflicting information.
The medical community itself is "literate" and yet, cannot (or will not) agree on what is appropriate. Research repeatedly shows that U.S. patients receive recommended care only half of the time. Studies also show that patients receive non-recommended or “low-value” care as much as 20% of the time. Despite the proliferation of evidence-based guidelines, there is stunning variation in care across the U.S. and even within close geographies.
I am not sure that I see how literacy solves these far greater flaws. So literacy may help, but as patients become more literate, more questions and confusion will likely arise.
9
I understand what the Medicare doughnut hole is, but I don't understand why it exists.
18
My girlfriends parents do not have a computer, and although literate, are not particularly well versed in the ways of our complex medical care system. They are approximately 82, live in a rural area of PA, and do not have a computer.
After a serious automobile accident, my girlfriend, who is smart and sophisticated, had to essentially manage her fathers medical care from start to finish. It was clear from the moment he was hospitalized that these lovely elderly folks were being confronted with a health care system unlike anything they had ever seen, from a confusing array of specialists, hospitalists, home health care aides, in-home medical supplies and equipment, and indecipherable prescription instructions, not to mention confusing and contradictory doctors instructions.
Unfortunately, the health care system has found itself behind the curve on these problems, and is essentially playing catch-up. Worse, as ubiquitous as technology is, it is of no use if an 82 year old neither has the technology or the ability to use it.
33
@Robert Lewis: Well put and exactly right. My 83 year friend just went to her doctor to interpret a CAT scan she had and he wrote down a two page synopsis for her and gave her instructions from renowned healthcare center (computer print out). I went over and read it all and was able to help her understand. We need Tor medical personnel to explain in easy to understand language, but most of the time they only have 10-15 minutes to spend with each patient. A sad state of affairs for our medical system operated by insurance companies. Sad.
17
Part of the solution will be AI that can translate medical jargon to common language (any language.) Humans will resist at first as they often do with any new technology, but hopefully the benefits will outweigh the minor annoyances.
5
In spite of conclusions drawn in 6,000+ studies and academic papers on health literacy in America (with 10-15 more spit out every week), it has very little to do with one's level of education or the ability to read a list of medial terms. Case in point: the late Dr. Paul Kalanithi's amazing book, "When Breath Becomes Air." When a neurosurgeon lacks health literacy--as evidenced by him being clueless on how to approach decision making concerning his lung cancer diagnosis--what hope is there for the rest of us?
In over 13 years of writing and teaching medical decision making and health literacy, my anecdotal research indicates that patient-provider miscommunication--with its accompanying medical errors and negative health care outcomes--almost always results from using words that are too FEW, not too BIG.
Rather than suggesting providers use words of no more than two syllables, how about incorporating simple but effective shared decision making tools? It's the only means to respecting a patient's autonomy, while obtaining truly informed consent.
Jo Kline, J.D.
author of THE 60-MINUTE GUIDE TO HEALTH LITERACY
22
I have a PhD and 17+ years of dealing with exceptionally complicated legal/legislative matters and can follow Dr. quite well. However, when dealing with my wife's medications for stage 4 ovarian cancer there was no substitute for a self created daily medication schedule, reviewed by Dr,. to keep track of what to take at what time of day, with/without food, before/after other meds. etc. Don't get me started on trying to figure out what med to substitute for one Dr. ordered but that is not on insurance formulary (e.g. approved list) - Dr doesn't know; insurance won't say, had to get pharmacy/insurance on phone at same time to get that mess solved. Tough enough for a healthy person never mind a sick person.
94
@FloridaNative
I was just about to respond when yours popped up first. I have a PhD and two MS and at 68 retired and had to change to Medicare and supplemental. I am stunned by how unclear insurance information is in this realm. I always lament haw difficult it must be for some people...do they just give up? And trying to understand billing information? Don’t get me started!
19
@FloridaNative
Yes, the damn formulary! Why is it that Medicare rather than my docs can decide which medications are appropriate for me?
9
@FloridaNative Very sorry for your wife’s illness. Navigating the healthcare system is exhausting for healthy individuals, much less those with serious illnesses and their caregivers. The system has become so complex that providing adequate care for someone with a serious illness is now a full time job. Without good medical literacy, one is not likely to receive a good outcome.
7
Physicians ought to give stricter guidelines in medications. Too often patients are told certain medicine such as aspirin is ok before surgery, or never warned about the danger of skipping or quitting a medication.
5
Physician extenders ie. nurse practitioners and physicians assistants have in large part taken the place of physicians too busy to explain the nuances and complexities of medical decision making.
Literacy in keeping track of medications is a role that adult children of seniors usually take.
A great idea would be an app that patients would be reminded when to take different meds assuming all the info was inputed correctly.
2
@Robert Haar An app? Seriously? If the patient understands and can reliably use a smartphone, then yes.
Believe it or not there are many seniors who just don’t understand smartphones/tablets despite hours of patient and loving training from a tech smart child (my father and aunt). There are other seniors who really understood these devices in their 60s and 70s, but whose skills rapidly diminished in their 80s (my mother). It’s now a weekly battle to keep her successfully using the apps she’s used for 5+ years. Learning new apps is now virtually impossible.
I work in the mobile app development field. My job literally is to explain how to use the app to users who just don’t get it. Why is it so hard to keep my mother successfully using her well-established apps? Because the apps get continuously redesigned to keep them “fresh” and her cognitive ability to learn (let alone detect) the redesigned app interface has diminished. She gets very frustrated (and frightened) when the app isn’t what she remembered. I have to reassure her that it’s the app that changed and then we start the hard work of retraining to use the new app interface.
The mobile app development industry must have a serious reckoning about continuously updating app designs. It will not meet the needs of its steadily aging customer base.
Meanwhile, do not expect apps to solve any of these problems.
6
Ms. Span-Did you consider talking to a pharmacist when you wrote this article? Pharmacists are drug experts. The state of Illinois requires a pharmacist to consult all patients who are getting new prescription(s). The drug knowledge is available at the pharmacy.
9
@John Not always - I am a healthcare provider in endocrinology -I prescribe hundreds of drugs every day and I can't tell you how many times the pharmacist gives inaccurate information, especially about insulin dosing. I've even had one tell the patient the insulin I prescribed was "dangerous" - what she should have done was call me first so I could explain how this insulin worked and why this was appropriate for this particular patient. although it was a bit unusual. The pharmacist doesn't know all the details of a patients history so I am not sure they are always the "expert". But - I absolutely agree with this article that we need to be able to explain in common English what this med is for, when and how to take it and what side effects to look for and then give the patient written instructions, because patients will generally only retain about 25% of instructions and in a busy appointment with many instructions, they will not be able to remember all the details. AND -they need to know how to contact the provider if they have questions, even after hours.
16
@John. Generally, the pharmacists at the large chain pharmacy that I have to use are ignorant about their computer system, almost passive aggressive about answering my questions, remarkably incurious about finding out why an error has occurred so it won’t happen again ... I could go on. I am tired of being addressed as if I were a stupid 4 year old; I don’t know if it is because I get psych meds or because I have gray hair. Pharmacists may be drug experts, but they have the same communication problems as the rest of the medical industry
15
What do doctors have against providing written information? Particularly when dealing with a scary diagnosis, patients can't be expected to remember 6 different options and their effectiveness, side-effects, especially when every word out of his mouth scares us to death. We recently gained access to my husband's "doctor notes" needed for a second opinion. The notes contained wonderfully complete information, but the doctor only told us this information verbally; I did my best to take notes, but his written notes were clear and simple, compared to my frightened scrawl. Doctors hate it when we do our research on the internet, but what other option is there?
38
At age 75, I still find it easy to understand and follow my doctor's instructions. However, actually participating in weighing the pros and cons of different therapeutic options is much more challenging. I strongly encourage all physicians to build into their office routines an educational session appropriate to the complexity of the decision with which the patient is faced.
15
I am a senior who generally understands health-related information. I write everything down, compose simple spreadsheets listing my medicines, glucose and blood pressure readings. My doctors love me because I am an excellent historian. My problem? Everything is written in font sizes of less than 12. I have glaucoma and cataracts. My working brain does me no good if the font size is too small to read the information. I just bought a simple magnifier to fit over a typical 8 1/2 x 11 page. Maybe that will help.
90
@george
While I’m not yet a senior, I have this problem too. Recently prescribed a medication that required reading the enclosed pamphlet; impossible! I googled the medication; problem solved. The entire thing was on line; just prepare yourself to have a lot of paper in the printer.
7
I took care of my Mom through treatment for terminal cancer. I have a college degree and attended a compressed nursing program along with the requisite college courses so I understood what her doctor was saying, 90% of the time.
Half way through I discovered that my sisters did not and didn't "like" the doctor because they didn't understand. Once I was told this, during meetings they rarely attended, I was able to mitigate this by asking the doctor to provide more clarity. They didn't ask for this themselves due to a fear of looking stupid. For me, she was clear and I presumed they also understood. They were able to understand once everyone was aware of what they needed.
Complex medical problems and treatments require plain English discussions to ensure everyone understands. My Mom was great at following directions and I has her back.
18
Add to these problems the use of digital signature pads at medical facilities. You are effectively signing in blank. You have no idea what document the person is viewing on their computer, and now they have your signsture in digital form. How will this hold up in court?
15
@ellie k. I have also wondered how signing a blank pad would hold up in court. I have a simple system: while I generally have good hand writing, I just scribble when I'm forced to sign a blank signature pad or any other time I feel forced to sign but disagree. If necessary, they could never prove it was my signature.
5
The multi-syllable, nonsense-sounding banes of drugs cause major confusion for patients to caregivers to even nurses and doctors.
Devise a easy to interpret naming system, possibly with effect/ailment and number. This name will not be good for marketing but it will lower the bar for understanding medications and taking the correct t ones.
18
@Sharon Hessney
One thing that really helps patients (and that pharmacists love) is prescribers to describe the purpose of the medicine in the label instructions. For example, "take one morning and evening for diabetes," or "take one in the morning for high blood pressure." I can't tell you how many times patients tell me they take their "nerve pill" as needed when it's actually for their stomach.
5
Our medical care is too complicated, too fragmented and way too expensive. We need to fix a broken system.
35
Communication is one of the most important components of medical care. One of the tools that has served my patients well is the use of medical posters and images from the internet in my exam rooms. The next time you are in your doctors office check the walls. I don’t need to show my diplomas or my love of art in my exam room. The exam room is where I seek to inform and educate patients and patients have a right to have medical information conveyed in ways they can understand. As physicians we are responsible for using whatever tools necessary to communicate with our patients. In my 30+ years of practice in primary care, I have found the majority of doctors don’t take advantage of the numerous tools available to facilitate communication. Patient experience surveys are routine in larger practices and communication is one of most important elements surveyed. Patient should use them to convey and inform their doctors on how well they are doing.
20
Using my local VA hospital I found if I was picking up a prescription there I had to wait to talk to someone about how the medication was administered before it was dispensed. Same goes for local Walmart for my husbands drugs. An extra step but obviously a much needed one. I am a healthy old broad with a masters degree but wonder how older people can understand allot of processes and procedures in todays world when I have trouble setting the clock on the microwave.
25
I found that the value of my contacts with nurses and doctors depended heavily on the quality of the questions I asked them. They have a tendency to speak in short, clipped sentences, providing a minimum of details and explanations. Perhaps that tendency is due to time pressures, or to the assumption that most patients could not comprehend clarifying details, or, more rarely, to protecting themselves against blame or lawsuits. The patient's communication skills in face-to-face contact with medical personnel is just as important as "health literacy."
8
@William
Pharmacists have to dispense many prescriptions with patients/customers wanting attention instantly. If they have to take time to explain instructions they are harassed by those waiting in line for their orders. The doctor should take the time to explain to their patients/customers the reason for the medication. The patient/customer insert about the medication is in type too small for anyone to read, even those with perfect vision. The drug companies should make an effort to enlarge the print even if it involves an extra page with the instructions. And the pharmacist should explain that each medication insert be read carefully so consumer understands use and side affects to look for. Taking, dispensing, and writing prescriptions is a partnership for all
5
@Mk The reason that pharmacists need to intercede between prescribing doctors and patients, is that most doctors' knowledge of the effects and risks of what they are prescribing comes from pharmaceutical company handouts. This is particularly true of new or "reformulated" medications.
Furthermore the inserts in containers of medication are written by the pharmaceutical company to promote the product and deflect liability, not to fully inform.
7
@Philip Brown that is not true. I may be a veterinarian , but our resources are the same . We have online or book form formularies written by pharmacists and doctors that we consult. The drug inserts are regulated by the FDA or the respective countries ‘ equivalents and are not merely advertising . Just because you don’t know what we consult don’t just make stuff up.
4
My stepfather has a type of dementia that affects his ability to process and use language. He's highly educated and only 70, but cannot comprehend any information not given to him in writing. My mother is constantly asking doctors to provide more simple, written instructions and explanations, with limited success. Pharmacists are even worse with those multi-page complex information sheets in tiny font. The assumption seems to be that my mother must be the interpreter. Why can't the healthcare system handle elderly patients with the most common impediments to understanding health information? -- Reduced vision, hearing, and short-term memory, nevermind dementia.
61
The best thing for most of us in old age is to forget to take those pills.
Fosamax (alendronate) causes fractures in the long bones of the legs and arms.
It is approved for osteoporosis and widely prescribed for an invention called osteopenia, or "pre-osteoporosis."
Fosamax (alendronate) also causes age-related macular degeneration, but only when taken exactly as prescribed. Those who took it less often did not develop the blinding eye disease.
Atenolol causes falls which cause serious injuries. It also increases the odds of heart attacks, heart failure and death. It is prescribed to lower blood pressure and prevent ... something.
Aricept (donepezil) causes brain atrophy and cognitive decline.
When tested on healthy subjects, Aricept impaired memory.
It is prescribed for Alzheimer's Disease.
All of the statements I made above are the conclusions of research published in peer-reviewed journals. Of course, other studies make other conclusions. Which to believe? Have a look at life expectancy in recent years.
53
I also did not know what an L.T.A.C. was when I read the article; if it hadn't been defined in a subsequent paragraph, I would have had to look it up. I think this is a problem with communication in general and not just with medical literacy. So many people make liberal use of acronyms in both verbal and written communications and just assume others will understand. I think we've become "over-acronymed." Why, for example, assume that others will know what SCOTUS means? What's wrong with just saying "Supreme Court"?
37
@Robert McPherson
I was asked by a nurse if I had afib. I have a PhD in biology but no idea what she was talking about. It was atrial fibrillation.
17
@Robert McPherson I agree. Language is overly saturated with acronyms....even on the news. When POTUS first started being used years ago.....seemed it showed up one day and then everyone was using it.... I had no idea what that meant and had to look it up on the internet.
I don't understand why people don't just say Supreme Court or The President.
Most professions have acronyms, but when dealing with people outside these professions - their use must be curtailed so others can understand what the heck you are trying to communicate.
8
Assisted suicide options must be part of the solution. There's no pleasure or dignity in an ever-accelerating decline while handing over much of one's estate over to the medical industrial complex.
60
@Richard Schumacher OH SO TRUE! So sad and so true!
13
@Richard Schumacher
I'm fervently hoping that assisted suicide -- if only a prescription for the proper drugs -- will be available when I decide it's time to go.
Every citizen should have a right to die.
18
@Richard Schumacher
In total agreement.
10
There are common-sense 'rules of the game,' that one hopes will be offered by The Times' health-care columnists to make things easier. A few suggestions: take someone with you who knows how to pay attention and write things down, to every medical appointment. If you agree, have that person act as a semi-advocate for you or as a full-out advocate. If you have no one to go with you, darn-well find one through senior citizens' organizations, for instance. Don't be ashamed, if you are impoverished; to let health-care people know it; there are drug-makers' semi-secret deals just for people like you.
Relieve yourself of as much work as you can when with your physician so that you can concentrate on asking about more important stuff. If you are thoroughly confused by what the doctor tells you, say so and politely stay in the office until he/she makes in clearer. At your pharmacy, ask to speak to the pharmacist and press for details about your prescriptions if you need information. Make lists at home of what-and-when, as this applies to intake of pills, etc., post the list and refer to it. No one is paying me to write this, so hopefully a Times person will do it or link to a previous column. Accept that you can only do the best you can in dealing with a money-grubbing health-care industry. Living as optimistically as possible beats everything else. And on and on...
16
@Make America Sane The National Institutes of Health publishes materials that can help everyone - not just elderly folks -- prepare and get the most out of their appointments. I've taught my long-term patients over the years how to prepare and have given talks to the public on this topic. It's often eye-opening to patients what doctors need to know in an appointment and how even a bit of preparation on their part can makes even time-limited appointments more effective for everyone.
NY Times doesn't allow links so Google for "NIH Talking to Your Doctor."
Interpreting "take one pill three times a day" isn't health literacy, it's basic literacy.
If people can't read--and apparently they can't--that's a whole other problem.
But--aren't pharmacists supposed to help with this? Mine painstakingly explains things to me even when I already know them, which while annoying, is ultimately a good thing.
15
Unfortunately, it seems like quite a few US Citizens are apparently quite limited in their ability to speak and/or read English.
This may increase healthcare costs as their ability to comply with recommendations, etc. may be limited by the language barrier.
Additionally, hospitals/clinics/doctors’ offices are required to provide translation services free-of-charge to such patients. Those visits can increase costs as they can take much longer than average for obvious reasons. To my knowledge, healthcare providers are not reimbursed for the costs.
It was very sad to read about an elderly US Citizen that apparently was physically restrained by police (possibly tased?) as she was apparently unable to understand even basic English instructions by the police despite apparently living in the USA for many years. She was carrying a knife or something to cut dandelions & someone called the police on her. Apparently she didn’t understand their commands to drop the knife etc.
Sometimes, per a recent NYT article, this is not limited to immigrants & is propagated across many generations by certain insular communities that choose not to adopt English as a primary language. Their children attend private religious schools that (apparently illegally) provide only minimal instruction in secular subjects like English. Apparently the problem is especially acute for boys in these groups. There is apparently a very high rate of poverty in these communities.
11
@Polly
I teach English to speakers of other languages; also tutor students studying to take their high school equivalency exams.
Literacy is a simple word, with a simple definition. There is no such animal as "health literacy." Or "financial literacy." Or "food literacy." Look it up.
Thanks for your comment, Polly.
5
@Polly
And exactly when three times a day?? at 8 hour intervals -- full/empty stomach. For once a day when? suppertime? bed time? breakfast??
Drug interactions with other drugs or food need explanation in large print.
how exactly does grapefruit interact with the statin?
Much is unclear!!
9
This is round two with trying to navigate this health care system and now it's with my in laws. We are the closes family to them and it's about 753 miles away. My father in law has been diagnosed with aggressive lung cancer, prognosis few weeks to maybe two months to live. They are 86 years old and are unable to make sound decisions. She is a retired RN but we have all noticed her cognitive decline. Last week I went through all the meds with her, wrote what needs to be asked when the home health aide comes again and hope for the best. What a mess and what a nightmare to do this all over again. It's so true that it is either the daughter or daughter in law that takes the lead to ensure the best of care. I guess I am doing it again as the daughter in law.
16
@Martha White they are fortunate to have you help.
15
@Martha White Yes, but why are you doing it and not your husband.
7
Shame on that social worker for using an acronym, LTAC, to explain a patient's care plan to their spouse. That should never happen while trying to communicate important information to a patient or a caregiver, using such poor communication could have a negative impact on patient safety and that's something a hospital social worker should be very aware of.
41
@dlb People in sociology and anthropology, like many disciplines, love their jargon and acronyms.
9
@globalnomad So do newspapers. It was quite a while, a few years ago, before I figured out what POTUS meant.
4
@dlb - We had a friend who had a very aggressive form of cancer. He'd never married so his parents would drive to pick him up and take him to a heavily-advertised cancer center in another state. He went through two years of chemo and cancer surgeries. Medical personnel were very complimentary about the whole family's positive attitude.
But then when doctors told them there was nothing more they could do for him and he should check into a Hospice, they were absolutely furious and thought they'd been lied to and deceived. It turns out they didn't understand what "palliative care" meant, and somehow thought the treatments could help give him a normal lifespan.
7
I have heard of navigators working absolutely beautifully, making sense for people of multiple prescription regimens, and alerting Drs. when there's a problem. So it sound delightful.
But the entire mess is too complicated, and if not frightening for some, it is not therapeutic to have to struggle to make sense of the offerings and then utilize their plans correctly. And that's way before you get to the point of taking a prescription med.
3
As a retired physician with a masters in information science I can navigate the system better than most--yet still run into conflicting information provided by insurers. I can run interference for my wife--and occasionally our children. Things do not need to be this difficult.
Part C (Medicare Advantage) is simpler for older people: everything is bundled. That does not mean that people understand the plan, what medications might be covered, or some of the network restrictions. Nor is it necessarily to their advantage to be in part C.
Part D plans can be enormously difficult to interpret. Medication pricing can change abruptly. People have to check their plans each year to be sure there are no sudden price hikes on meds or premiums. Generically available meds can vary 10-fold between plans (personal experience). Online pricing guidelines are not always reliable and can have confusing or erroneous information.
Cheaper plans by the same insurance company have lower med prices than the higher priced plans by the same company--if one can rely on the pricing to hold once the new calendar year starts.
Years ago I got into a discussion with another physician about the complexities of the Medicare insurance system. His reaction: they can just ask their children for help. Difficulties with that assumption: not everyone has children, sometimes they don't want to help, sometimes the parents do not want the help (parents may be better educated than their children).
84
@JSK You are correct sir! When people talk about 'Medicare For All' they do so as if they anticipate great simplification in healthcare. Nothing could be further form the truth. Medicare sends out a huge 100+ page booklet yearly that details benefits and exceptions.
With Medicare you've got the standard Part A (hospital stuff) & Part B (non-hospital stuff but not drugs (that's Part D). Each has separate yearly deductibles. With Part B, the patient also is responsible for ~20% of the amount Medicare pays with no upper limit, UNLESS you purchase a supplement plan that covers this expense. There are 6 different supplement plans that are also known by letters (F, G, K, L, M, N), each of which has different coverages and mixes of benefits and out-of-pocket costs.
Then there is Plan D, which is the drug plan that has a huge number of independent choices offered by different providers that ranges from something like $12/month to $80 or more per month. Some plans have deductibles and some don't.
But if you don't want to bother with supplemental plans, then you can look into Medicare Advantage plans which are Part C plans that sometimes include drug coverage (like a Plan D) and even dental care! These plans also have their own deductibles and co-pays.
There are non-profits in many areas that offer free help to make the best choices for you when it comes to choosing Medicare plans and options. In my area, there is one called HiCap. Good luck!
31
@JSK
Note that. Medicare Advantage (Part C) requires using only providers in a defined network.
15
@JSK
I twice reread your extraordinarily-concise and information-packed post so it could better sink in to my brain. Thank you. One detail you sort-of mentioned in passing is that Medicare plans can surreptitiously be altered by the insurer in mid-contract. Last year, my PPO provider raised the co-pays for visits to specialists in spite of the fact it was a one-year contract. The one specialist whose bookkeeping company suddenly billed me for more money called my attention to it.
So it seems contract-law no longer applies to the corrupt and depraved health-insurance industry and perhaps Medicare is giving these corporations medals for such conduct. You note that Part D coverages are terribly difficult to decipher. I gave up on that issue and went with a good Medicare Advantage plan. The co-pays are usually higher but I don't know what drug(s) I may be needing next month or next year. One thing I always do with insurance is seek out, if it exists, whether there is an annual catastrophic ceiling on costs. And there, with the Medicare Advantage plans available to me, there is: it's $10,000. Lot of money, yes, but Supplement plans for Parts B and D together would cost me close to $4,000 per-year. My Medicare Advantage plan is virtually free. The statistics tell me to consider these costs very carefully.
I do urge everyone to take advantage of The Times's health-care columnists' free ongoing reports of the mighty and enormous health benefits of exercise.
19
Surely you jest...
First, the contraceptive pharma industry figured this out a while back – and how many different dosages of any one drug can there be...Even with that, someone could easily make a jet printer to put a personalized calendar onto the top face of a multi-pill bubble pack...With readable fonts and graphics...
Second, having witnessed the sheer number and almost-predatory nature of calls directed at a prospective Medicare enrollee – especially as some in the health-care insurance industry move to make systemic claim denial a major profit factor for some types of plans – would speculate that folks have more protections against used-car salespeople...
Third – and I’m not jesting – since Amazon and Apple and Facebook and Google are all vying to put a personal assistant in our homes...Why not a mini-version of an Amazon Locker on the kitchen counter that opens up to the day’s medications...
Jeff – you don’t have to thank me...A free subscription to WaPo would be more than ample...
Though two-day free shipping might not cut it...
11
Too funny! Here is a recent example from a lung x-ray I had:
=======
Previously described subpleural left posterior costophrenic angle nodule which was new on the prior study has resolved and likely reflected atelectasis. Single nodular opacity is categorized as follows:
========
Say what? I can use Google to get the gist of what is being said but really, I should not have to do so.
I suspect that medical information is presented like this on purpose. Doing so makes the writer feel superior, puts the patient in their place, acts as a possible justification for the excessive medical charges assessed in the USA for nearly everything and lastly, acts as a way to force the average patient back to their MD for a consultation, which is typically another office visit charge to be paid.
I am confident that this segment and most others that I have read, could be written in simpler, plainer English with no loss of quality.
107
@Joseph
That x-ray report language would be clear to most physicians and certainly to a radiologist. The plain language you speak of does not help in terms of preserving the accuracy or brevity of the report for medical specialists within formal medical records.
Plain language is a desirable feature for communicating findings with patients: https://guides.mclibrary.duke.edu/healthliteracy/plain-language (quite a few resources are linked there) . The expectation that all patients should be able to read and understand all technical reports from the hospital or office records is not such a useful or realistic goal.
Most every profession has a specialized language: law, accounting, physics, mathematics, car repair...you name it. It is not that difficult to explain the basics of that x-ray report to most patients, but with respect to your implication that all technical reports should be written in that language--not so helpful.
No doubt explanations to patients are better with plain language.The expectation that every piece of medical reporting has to be put into some equivalent of plain language would be destructive. Without that standardized and specialized language all sorts of problems could occur.
74
@JSK While I am confident that you don’t intend to give this impression, your comment reads like “leave this to the professionals, we know what you need”. The attitude of the healthcare establishment has to change. If services are reliant on people there has to be an intuitive way to serve them as patients and providers. Why can’t the reporting machinery print the report with a “patient version” allowing one copy to carry the brevity and clarity you detailed and one copy in plain language? I hope some startup founder reads this and makes it a reality. The litigious nature of medicine in the US has to have fostered a fair amount of standardization in diagnostic reports.
15
Sorry, but your conspiracy theories are incorrect. Patients were never expected to be able to read medical reports. Otherwise, they would be doctors, etc. Some administrators changed the rules mid-stream....
Did that come through your health system email? I think the new practice of all kinds of reports just automatically showing up in patients’ emails without any evaluation & discussion with the ordering doctor first is a big mistake. Patients shouldn’t be expected to understand them.
Someone I know had an EKG report come in via their email that suggested that he’d had a large heart attack previously. It was very disturbing.
I think this is a bad way of handling things but patients (sorry- clients, customers, consumers) are supposedly much happier this way. They’re “in control” of their own data & their medical care now.
Those are written by radiologists.
Few radiologists, except for interventional radiologists, communicate with patients. That helps explain their stunning communication skills.
It’s not always easy for the ordering doctor to even understand what is (supposedly) being communicated. And if it’s a chest, abdomen, pelvis CT scan with acute abnormalities as well as incidental findings.
12
To quote Diane E Meier, Director of the Center to Advance Palliative care : Health Literacy is not a patient's problem, it's a healthcare professional's problem.
39
Just like the fact that teachers should be responsible for making competent high school graduates out of kids that live in poverty in violent neighborhoods, with uneducated & clueless parents that have minimal ability to manage their own lives let alone their kids or their education, among family chaos, drugs/alcohol, domestic violence, child physical/sexual abuse, teen pregnancy, sometimes limited English language skills at home.
Blame the teachers, the doctors etc. Don’t blame America, which gives citizenship to adults that often can’t even speak, read or write with basic proficiency in the language of their new homeland.
Why do voting forms have instructions in multiple languages. If you can’t read English, you shouldn’t be able to vote in America, at least until the other languages are made official languages of the nation.
Maybe the GOP is right about a few things.
4
@Ben
Check your facts before you go public with your kvetch. The naturalization test is in English. There is an exception that allows some people, depending on their age and length of time as a permanent residents in the country, who may take the exam in their native language.
(Can you answer all the questions on the test correctly, friend?)
3
@Ben - Unless we're native Americans, every one of us descended from immigrants who came to this country not speaking English, or not speaking it fluently. First generation immigrants rarely learn to speak fluent English, although many understand reasonably well. If they become citizens (which takes years), they'll have to pass a citizenship test, in English, that few native-born Americans could pass.
Second generation immigrants are often fluent in both English and their native language, and by the 3rd generation, you can't distinguish the children from any other American child. But your anti-immigrant sentiment is duly noted.
10
Medicare should require that older patients leave doctors' offices with large type printed visit summaries and instructions.
I bring a notepad and take notes, often offering it to my doctor to write down unfamiliar words or complicated instructions.
35
Just like any other profession, the health care industry has it's own jargon. Would we expect people to understand legal jargon who are not trained in our legal system? Of course not. Would I, as a career military officer, expect a civilian to understand extensive military jargon? Of course not.
So that healthcare provider was in the wrong to expect a patient to know what L.T.A.C. means.
Even those of us who are robustly healthy and literate can experience issues when dealing with insurance (even government insurance), who pays what, etc. I know I have scratched my head when the exact same medication (single number of pills, type and dosage) I get has a different co-pay every time I have picked up these over the past ten years. And that is covered under the government insurance! No amount of looking at their website will answer that question sufficiently. I probably could call but the cost difference seems to be minimal (except for one time) so I don't waste my time.
46
@Mary Recently, I became someone who has been prescribed multi medications — but, admittedly I was puzzled by the term 'scripts' that everyone 'who is smarter than I am' seemed to toss around.
What? Scripts? Aren't scripts movie scripts, or similar. Really, is it too hard to say the word: prescription?
20
@Ann Drew in reference to prescriptions, the nickname is "scrips", not "scripts".
2
@Cindy: Google "Express Scripts."
Or read: "Scrip is a certificate which entitles the bearer to something, such as stock shares or dividends. Scrip may also mean a currency issued by a company or the military that may be used in the company store or at the military exchanges. Company scrip is usually considered a method of price-gouging employees, charging them exorbitant prices for goods. Military scrip has been used to thwart money speculation in war-torn areas. Arcade tokens and subway tokens are also considered scrip. The word scrip came into use in the 1760s as an abbreviation of the term subscription receipt, regarding stocks.
See: https://grammarist.com/usage/scrip-vs-script/
2
Even if you have simpler language, complex issues often get ignored. The nephrologist explains what is going on and what needs to be done about the patient's kidneys, the cardiologist about the heart.
It is left to the 'patient advocate' (ie family member with unknown medical literacy skills) to figure out what is going on with the patient --- the person, whose life and/or life quality is going to be impacted.
And woe betide the patient who has no family member to advocate for them.
127
@SAO
Woe betide anyone who doesn't have a competent advocate when dealing with healthcare- from choosing insurance and onward.
14
@SAO - When my mother started declining at the age of 86 if it wasn't for my spouse, my sister, and me advocating for my mother's needs, the suffering caused by neglect, maltreatment, and ignorance would have been, in retrospect, horrifying.
15
It’s vital that health professionals speak in lay terms to patients at all times just because they completely understand all the jargon does not mean we all do too. Bedside manner is key, so glad more medical institutions are placing more emphasis on bedside manner, narrative medicine and so forth. This is all about the patient making them feel comfortable and at ease especially during vulnerable times.
12
This appears to be the case around the world.
National assessments are needed and ways to then disseminate the information.
2
“I had to look it up,” she said. Once she did, she wondered, “How do they expect seniors to understand this?”
Uh - why would seniors be less likely to know and understand the "doughnut hole" as it relates to medicare than their children?
I think we should be a bit skeptical when anybody starts to draw conclusions about any individual in a statiscal grouping based on the characteristics of the group as a whole. This is especially true for people "over 65". The median age of that group is around 85. So half that population is over 85. Count me suspicious that this data tells us that people are more" health literate" at age 18 or even 25 than they are 66.
23
@Ross Williams
Why doughnut hole??? (Who devised that phrase.) It should be called covered cost gap. Really stupid if you think about what happens when you translate the phrase without defining it precisely.
Clever journalistic writing can be just as confusing. We don't need clever or cute for serious matters.
8
"Her mother, 79, and father, 77, need numerous medications"
Another problem is that the FDA most likely approved these medications based on trials in which they were taken one at a time, and tested in younger patients.
So interactions among the numerous drugs, and the slower elimination from (and thus build up in) the body in the elderly may not have been studied.
It is possible that her parents should not be taking many of their "numerous medications" at all.
41
Part D which is often critical for seniors to defray outrageous drug cost, is a mine field to understand. We cannot forget for numerous and sundry reasons, Physicians don't spend much time with a patient.
9
@Dan Green
So true. I read that originally it was thought that insurers would offer Medicare drug plans only reluctantly, but Part D turned into a cash cow so now there are a slew of companies to choose among.
3
The biggest problem is too many prescriptions. Doctors and some patients think that drugs will fix everything so most seniors take at least 5 prescriptions. The font on the bottles is much too small. Most people are well organized. There are few older people who are like my mother who could recite from memory her considerable list of meds, with strengths and dosages. Let us not forget that some meds cause confusion whether a person understands the language of not. Patients need fewer drugs with better labels.
57
@S.L.- I meant to write, "most people are NOT well organized."
6
@S.L. - I wrote above that my late husband was very disabled with progressive dementia to go along with it. He had up to 20 medications at a time. I made an appointment with a pharmacist once a year to review his meds, with an eye toward 1) which could be eliminated, and 2) which drugs were contraindicated in conjunction with other drugs. His doctor applauded my efforts to do that.
6
@S.L. You can argue effectively that prescription bottles are hard to understand or that some people aren’t good at managing prescription regimens, but when you leap to the conclusion that the biggest problem is too many prescriptions, you’ve clearly jumped to the wrong conclusion.
Literacy in English or any language won't help anyone to read dosage instructions which are often printed in two-point type inside a flap glued to the bottle.
121
@Robert Triptow
Yes, and they shove a 14-page handout at you and ask impatiently, "Do you have any questions?" in a tone that says, "You'd better not, because there are 28 people in line behind you." You often couldn't know what questions you might have until you look over the information anyway and you're certainly not going to do it right there in the store.
11
By good luck, perhaps, my PPO Medicare Plan (that's an Health Maintenance Organization that covers out-of-network physicians as long as they accept full Medicare payment rates. But it costs me a larger co-pay and it provides an on-duty nurse via voice telephone (at-the-least, some 12 hours a day, and maybe 24 hours per-day) to answer my less-complicated questions, such as whether to take medications with-or-without food.
There's no reason all health-care plans can't do the same, and perhaps most do -- I don't know but I hope you do. When I worked as a newspaper reporter covering medicine, the world of health care, the Food and Drug Administration, and the National Institutes of Health, I learned jargon reasonably quickly. Retired folks don't need a graduate degree from a university to spend the time to use the convenience of the Internet to be reading jargon at almost the same moment they are looking up the terms using, for instance, Google.
Meanwhile, you do a superb job of helping us out with your columns. By the way, what's new about "Old Age?" I will, gratefully, take all the time I have left in life and enjoy, among other things, the marvels of the 21st century New York Times.
12
Health insurance should cover after market pill packaging which is already available but which could be done by at least some pharmacies. The labeling can be multi-lingual and QR coded and package configurations adjustable to the types of medications. It seems like a win-win for both patients, big pharma and pharmacies.
10
@a goldstein
I use QR codes. Super simple I agree, but I am the only person I know who does...More tech is NOT the solution.
A low tech solution would be a pill box that holds the pills in order MONDAY, BEFORE breakfast, WITH breakfast, AFTER breakfast, mid morning, BEFORE lunch, etc. We can't do this because you cannot get all of your prescriptions from one location because the medical plans play all kinds of games on pricing...
12
@SW
I agree, more tech is part of the problem, not the solution, in general.
Your idea is good. You can buy a cheap plastic pillbox of the kind you mention, and put the pills in the right compartment, or have someone do it for you.
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@SW, @Thomas Zaslavsky - The proliferation of Rx meds plus the many supplements people are taking makes pill boxes inadequate. Pills can look alike, they can go into the wrong pill space, and they open inadvertently, mixing up pills. This especially a problem for the elderly and for those who do not understand the Rx orders.
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