Talking to your doctor
'I Don't Smoke, Doc,' and Other Patient Lies
Sumathi Reddy : WSJ : February 18, 2013
It's a rule many residents learn in training. If a patient says he has four drinks a week, consider it eight. The same for cigarettes and illicit drugs, doctors say.
The not-so-subtle message underlying the practice: patients lie.
'Parents probably lie or omit information when they feel like they might be judged,' says Ari Brown, a pediatrician in Austin, Texas, who has caught parents lying on issues where they disagree such as how long babies should use pacifiers.
"It's just human nature that patients want to please doctors," says Kevin R. Campbell, a cardiologist in Raleigh, N.C.
"I've had patients say they quit smoking and yet they come in smelling like tobacco," he adds. "I can throw pills and drugs at patients all day long but if they're still continuing to smoke and that sort of thing it's just not going to help."
Patient lies—from half truths and deceptions to bold, blatant lies—are surprisingly common and can be hard to detect in today's hurried medical practices, doctors say. And as many doctors strive to move away from a stern and lecturing stereotype, confronting patients without alienating them can be especially challenging.
Common lies include everything from diet and exercise regimens to medication adherence, sexual histories, and taking alternative medicines. Doctors say some patients play down symptoms out of fear of a diagnosis or hospitalization. Others play up symptoms to obtain something such as a handicapped parking permit or a controlled substance.
In what may be a sign of the mistrust: however often patients lie, their health-care providers think they lie more. In a 2009 survey, 28% of patients surveyed acknowledged sometimes lying to their health-care provider or omitting information. But the health-care providers surveyed suspected worse: 77% said that one-fourth or more of their patients omitted facts or lied, and 28% estimated it was half or more of their patients.The survey, conducted by General Electric Co. with the Cleveland Clinic and Ochsner Health System, included more than 2,000 people and more than 1,200 doctors and other medical personnel.
Patients ages 25 to 34 were more likely to lie than older patients, according to a 2004 online survey of 1,500 respondents conducted by consumer medical news website WebMD . And men were two times as likely to get caught lying as women.
Some patients lie out of embarrassment or fear of disappointing a doctor. Others worry about electronic medical records or information being communicated to employers, insurance companies or the authorities.
'It's just human nature that patients want to please doctors.' —Kevin R. Campbell, a cardiologist in Raleigh, N.C.
Doctors say omitting important information or lying can lead to the wrong treatment, medicine or even diagnosis.
Jeffrey Cain, a family doctor in Denver, had a patient whose blood-pressure medication didn't appear to be working, so he changed the prescription. "What he hadn't told me was he wasn't actually taking his blood pressure medicine," Dr. Cain says.
The patient read a story about heart disease that scared him and then started taking all his medications—new and old. His blood pressure dropped so low that he passed out, Dr. Cain recalls.
In some cases, Dr. Cain says, patients are lying to themselves. They want to project to their doctor the image they want for themselves. Sure, I'm watching what I eat, Doc. Yes, I exercise regularly.
Maureen Mack is guilty of that. The 42-year-old tells doctors she exercises three times a week, 30 minutes each time. Reality is more like once or twice a week for 15 minutes.
"Why do I do it?" says the public-relations director who lives in a Milwaukee suburb. "Because I'd like to set myself a standard and try to live up to it so every time I write it I convince myself that I'm going to do it and the next time I go to a doctor it will be true. Hasn't happened in nine years."
Ari Brown, a pediatrician in Austin, most often catches parents lying to her when they disagree. Dr. Brown, for example, believes babies should be off a pacifier by six months or a year due to potential dental or language issues. Once, a mom said her daughter had given up her pacifier. It didn't come up again until the girl, then 2½ years old, fished a binky out of mom's purse during a visit and popped it into her mouth.
"The mom was like, 'Oh thanks, you totally just outed me,' " Dr. Brown recalls.
"I think that parents probably lie or omit information when they feel like they might be judged," Dr. Brown says. As a pediatrician for 17 years, she says she used to be more confrontational. "Now it's kind of, we just leave it out there."
Yolanda Reid-Chassiakos, director of the student health center at California State University, Northridge, once saw a college student whose parents suspected she was suffering from anorexia nervosa. An initial weight check, though, didn't show any weight loss. A second check of the student in a hospital gown found a loss of 15 pounds. "She admitted she had stuffed rocks in her clothes, in the pockets, so she could make her weight look a little more close to the normal range," Dr. Reid-Chassiakos says.
Doctors themselves shade the truth, studies find. "There are lots of complicated reasons why physicians don't always tell patients the entire truth," says John J. Palmieri, a psychiatrist at Massachusetts General Hospital who wrote a 2009 article "Lies in the Doctor-Patient Relationship" that appeared in the Journal of Clinical Psychiatry. "People will dance around [a diagnosis]," says Dr. Palmieri, citing Schizophrenia as an example. "They'll be concerned about using particular language and give a more generalized diagnosis."
A study published last year in the journal Health Affairs found that just over one-tenth of more than 1,800 physicians surveyed had told patients something untrue in the previous year. More than half said they described a prognosis in a more positive manner than warranted and about 20% admitted to not fully disclosing a mistake to a patient due to fears of litigation.
Some doctors say they look for signs of lying, such as avoiding eye contact, pausing or voice inflections, and other signs of anxiety.
"It takes time to draw out a patient and get them to reveal signs that they're exaggerating a symptom," says Peter Clarke, director of the Center for Health and Medical Communication at the University of Southern California. "And if you're effectively—by the work flow of your practice—allocating 12 to 15 minutes per patient, you're not going to pick up on a lot of those signals."
Elizabeth Lee Vliet, who has an Arizona-based internal medicine practice, says she tries to ask very specific questions, particularly about over-the-counter medicine usage. "Patients are medicating themselves with so many over-the-counter herbs and supplements," she says, which can have potentially dangerous side effects, particularly in combination with prescription drugs.
For dentists, flossing is the most common issue. Sam Weisz, a dentists in Libertyville, Ill., simply divides whatever a patient says by two. "We can definitely tell by taking measurements under the gums each visit," Dr. Weisz says. The dirty truth: The dentist knows you're lying through your teeth.
Sumathi Reddy : WSJ : February 18, 2013
It's a rule many residents learn in training. If a patient says he has four drinks a week, consider it eight. The same for cigarettes and illicit drugs, doctors say.
The not-so-subtle message underlying the practice: patients lie.
'Parents probably lie or omit information when they feel like they might be judged,' says Ari Brown, a pediatrician in Austin, Texas, who has caught parents lying on issues where they disagree such as how long babies should use pacifiers.
"It's just human nature that patients want to please doctors," says Kevin R. Campbell, a cardiologist in Raleigh, N.C.
"I've had patients say they quit smoking and yet they come in smelling like tobacco," he adds. "I can throw pills and drugs at patients all day long but if they're still continuing to smoke and that sort of thing it's just not going to help."
Patient lies—from half truths and deceptions to bold, blatant lies—are surprisingly common and can be hard to detect in today's hurried medical practices, doctors say. And as many doctors strive to move away from a stern and lecturing stereotype, confronting patients without alienating them can be especially challenging.
Common lies include everything from diet and exercise regimens to medication adherence, sexual histories, and taking alternative medicines. Doctors say some patients play down symptoms out of fear of a diagnosis or hospitalization. Others play up symptoms to obtain something such as a handicapped parking permit or a controlled substance.
In what may be a sign of the mistrust: however often patients lie, their health-care providers think they lie more. In a 2009 survey, 28% of patients surveyed acknowledged sometimes lying to their health-care provider or omitting information. But the health-care providers surveyed suspected worse: 77% said that one-fourth or more of their patients omitted facts or lied, and 28% estimated it was half or more of their patients.The survey, conducted by General Electric Co. with the Cleveland Clinic and Ochsner Health System, included more than 2,000 people and more than 1,200 doctors and other medical personnel.
Patients ages 25 to 34 were more likely to lie than older patients, according to a 2004 online survey of 1,500 respondents conducted by consumer medical news website WebMD . And men were two times as likely to get caught lying as women.
Some patients lie out of embarrassment or fear of disappointing a doctor. Others worry about electronic medical records or information being communicated to employers, insurance companies or the authorities.
'It's just human nature that patients want to please doctors.' —Kevin R. Campbell, a cardiologist in Raleigh, N.C.
Doctors say omitting important information or lying can lead to the wrong treatment, medicine or even diagnosis.
Jeffrey Cain, a family doctor in Denver, had a patient whose blood-pressure medication didn't appear to be working, so he changed the prescription. "What he hadn't told me was he wasn't actually taking his blood pressure medicine," Dr. Cain says.
The patient read a story about heart disease that scared him and then started taking all his medications—new and old. His blood pressure dropped so low that he passed out, Dr. Cain recalls.
In some cases, Dr. Cain says, patients are lying to themselves. They want to project to their doctor the image they want for themselves. Sure, I'm watching what I eat, Doc. Yes, I exercise regularly.
Maureen Mack is guilty of that. The 42-year-old tells doctors she exercises three times a week, 30 minutes each time. Reality is more like once or twice a week for 15 minutes.
"Why do I do it?" says the public-relations director who lives in a Milwaukee suburb. "Because I'd like to set myself a standard and try to live up to it so every time I write it I convince myself that I'm going to do it and the next time I go to a doctor it will be true. Hasn't happened in nine years."
Ari Brown, a pediatrician in Austin, most often catches parents lying to her when they disagree. Dr. Brown, for example, believes babies should be off a pacifier by six months or a year due to potential dental or language issues. Once, a mom said her daughter had given up her pacifier. It didn't come up again until the girl, then 2½ years old, fished a binky out of mom's purse during a visit and popped it into her mouth.
"The mom was like, 'Oh thanks, you totally just outed me,' " Dr. Brown recalls.
"I think that parents probably lie or omit information when they feel like they might be judged," Dr. Brown says. As a pediatrician for 17 years, she says she used to be more confrontational. "Now it's kind of, we just leave it out there."
Yolanda Reid-Chassiakos, director of the student health center at California State University, Northridge, once saw a college student whose parents suspected she was suffering from anorexia nervosa. An initial weight check, though, didn't show any weight loss. A second check of the student in a hospital gown found a loss of 15 pounds. "She admitted she had stuffed rocks in her clothes, in the pockets, so she could make her weight look a little more close to the normal range," Dr. Reid-Chassiakos says.
Doctors themselves shade the truth, studies find. "There are lots of complicated reasons why physicians don't always tell patients the entire truth," says John J. Palmieri, a psychiatrist at Massachusetts General Hospital who wrote a 2009 article "Lies in the Doctor-Patient Relationship" that appeared in the Journal of Clinical Psychiatry. "People will dance around [a diagnosis]," says Dr. Palmieri, citing Schizophrenia as an example. "They'll be concerned about using particular language and give a more generalized diagnosis."
A study published last year in the journal Health Affairs found that just over one-tenth of more than 1,800 physicians surveyed had told patients something untrue in the previous year. More than half said they described a prognosis in a more positive manner than warranted and about 20% admitted to not fully disclosing a mistake to a patient due to fears of litigation.
Some doctors say they look for signs of lying, such as avoiding eye contact, pausing or voice inflections, and other signs of anxiety.
"It takes time to draw out a patient and get them to reveal signs that they're exaggerating a symptom," says Peter Clarke, director of the Center for Health and Medical Communication at the University of Southern California. "And if you're effectively—by the work flow of your practice—allocating 12 to 15 minutes per patient, you're not going to pick up on a lot of those signals."
Elizabeth Lee Vliet, who has an Arizona-based internal medicine practice, says she tries to ask very specific questions, particularly about over-the-counter medicine usage. "Patients are medicating themselves with so many over-the-counter herbs and supplements," she says, which can have potentially dangerous side effects, particularly in combination with prescription drugs.
For dentists, flossing is the most common issue. Sam Weisz, a dentists in Libertyville, Ill., simply divides whatever a patient says by two. "We can definitely tell by taking measurements under the gums each visit," Dr. Weisz says. The dirty truth: The dentist knows you're lying through your teeth.
Afraid to Speak Up at the Doctor’s Office
By Pauline Chen, MD : NY Times : May 31, 2012
A friend of mine, a brilliant and accomplished academic in her 70s who once specialized in history and literature, recently phoned to ask for medical advice after being discharged from the hospital for what sounded like a mini-stroke. Ever eager to learn something new, she pressed me on “the latest research” and asked what doctors around the country were doing for her condition.
We discussed a few research studies, diagnostic tests and treatment options, but when I suggested she speak with her primary care doctor and perhaps a neurologist, her end of the line went silent. I wondered if my cellphone had dropped the connection or, for a single harrowing second, if my friend was having another strokelike event.
When she finally spoke again, her once-confident voice sounded nearly childlike. “I don’t really feel comfortable bringing it up,” she said. While her doctor was generally warm and caring, “he seems too busy and uninterested in what I feel or want to say.”
“I don’t want him to think I’m questioning his judgment,” she added. “I don’t want to upset him or make him angry at me!”
For over a generation now, efforts to make health care more patient-friendly have focused on getting patients and doctors to work together to make decisions about care and treatment. Numerous research papers, conferences and advocacy organizations have been devoted to this topic of “shared decision-making,” and even politicians have clambered aboard the train, devoting several provisions in the Affordable Care Act to “preference-sensitive care.”
But one thing has been missing in nearly all of these earnest efforts to encourage doctors to share the decision-making process. That is, ironically, the patient’s perspective.
Now a study published in the most recent issue of Health Affairs has begun to uncover some of that perspective, and the news is not good. In our enthusiasm for all things patient-centered, we seem to have, as the saying goes, taken the thought of including patient preferences for the deed.
The researchers conducted several focus groups with 48 patients from five primary care physicians in the San Francisco Bay area. First, they showed the patient participants a short video on several equally effective but very different treatment approaches for a heart ailment. Then, they asked them questions about what they did with their own doctors when faced with a choice among several treatment options that might be equally effective but could differ in lifestyle effects, cost or range of complications. Finally, the researchers asked the participants if they were comfortable asking doctors about different treatments, discussing their values and preferences or disagreeing with their doctors’ recommendations.
The participants responded that they felt limited, almost trapped into certain ways of speaking with their doctors. They said they wanted to collaborate in decisions about their care but felt they couldn’t because doctors often acted authoritarian, rather than authoritative. A large number worried about upsetting or angering their doctors and believed that they were best served by acting as “supplicants” toward the doctor “who knows best.” Many also believed that they could depend only on themselves for getting more information about treatments or diseases. Some even said they feared retribution by doctors who could ultimately affect their care and how they did.
The findings fly in the face of previous optimistic assumptions about shared decision-making that were based mostly on studies that examined physicians’ intent, but not patient perceptions. “Many physicians say they are already doing shared decision-making,” said Dominick L. Frosch, lead author of the new study and an associate investigator in the Department of Health Services Research at the Palo Alto Medical Foundation Research Institute in California. “But patients still aren’t perceiving the relationship as a partnership.”
Interestingly, most participants in this study were over 50, lived in affluent areas and had either attended or completed graduate school. “It’s hard to think that people from more disadvantaged backgrounds would find it any easier to question doctors,” Dr. Frosch said.
While understanding health care issues and making themselves heard in discussions were not difficult in general for the participants in the study, the skills and confidence they had in other settings appeared to have little relevance once they were in their doctors’ offices. They could not speak as easily as they normally did. “People experience a different sense of self in the doctor-patient interaction,” Dr. Frosch observed. “The clinical context creates a reluctance to be more assertive.”
Dr. Frosch and his colleagues are working on a larger study examining the extent to which patients feel constrained. And they have plans to study whether there are better ways to encourage patient engagement.
Systemic changes to increase shared decision-making must be addressed as well. Care organizations and doctors’ practices must be restructured to allow more in-depth conversations; clinicians need to be reimbursed for the time required for more meaningful conversations; and health care systems must adopt rigorous quality standards that measure and value real patient engagement in decisions.
“We urgently need support of shared decision-making that is more than just rhetoric,” Dr. Frosch said. “It may take a little longer to talk through decisions and disagreements; but if we empower patients to make informed choices, we will all do much better in the long run.”
By Pauline Chen, MD : NY Times : May 31, 2012
A friend of mine, a brilliant and accomplished academic in her 70s who once specialized in history and literature, recently phoned to ask for medical advice after being discharged from the hospital for what sounded like a mini-stroke. Ever eager to learn something new, she pressed me on “the latest research” and asked what doctors around the country were doing for her condition.
We discussed a few research studies, diagnostic tests and treatment options, but when I suggested she speak with her primary care doctor and perhaps a neurologist, her end of the line went silent. I wondered if my cellphone had dropped the connection or, for a single harrowing second, if my friend was having another strokelike event.
When she finally spoke again, her once-confident voice sounded nearly childlike. “I don’t really feel comfortable bringing it up,” she said. While her doctor was generally warm and caring, “he seems too busy and uninterested in what I feel or want to say.”
“I don’t want him to think I’m questioning his judgment,” she added. “I don’t want to upset him or make him angry at me!”
For over a generation now, efforts to make health care more patient-friendly have focused on getting patients and doctors to work together to make decisions about care and treatment. Numerous research papers, conferences and advocacy organizations have been devoted to this topic of “shared decision-making,” and even politicians have clambered aboard the train, devoting several provisions in the Affordable Care Act to “preference-sensitive care.”
But one thing has been missing in nearly all of these earnest efforts to encourage doctors to share the decision-making process. That is, ironically, the patient’s perspective.
Now a study published in the most recent issue of Health Affairs has begun to uncover some of that perspective, and the news is not good. In our enthusiasm for all things patient-centered, we seem to have, as the saying goes, taken the thought of including patient preferences for the deed.
The researchers conducted several focus groups with 48 patients from five primary care physicians in the San Francisco Bay area. First, they showed the patient participants a short video on several equally effective but very different treatment approaches for a heart ailment. Then, they asked them questions about what they did with their own doctors when faced with a choice among several treatment options that might be equally effective but could differ in lifestyle effects, cost or range of complications. Finally, the researchers asked the participants if they were comfortable asking doctors about different treatments, discussing their values and preferences or disagreeing with their doctors’ recommendations.
The participants responded that they felt limited, almost trapped into certain ways of speaking with their doctors. They said they wanted to collaborate in decisions about their care but felt they couldn’t because doctors often acted authoritarian, rather than authoritative. A large number worried about upsetting or angering their doctors and believed that they were best served by acting as “supplicants” toward the doctor “who knows best.” Many also believed that they could depend only on themselves for getting more information about treatments or diseases. Some even said they feared retribution by doctors who could ultimately affect their care and how they did.
The findings fly in the face of previous optimistic assumptions about shared decision-making that were based mostly on studies that examined physicians’ intent, but not patient perceptions. “Many physicians say they are already doing shared decision-making,” said Dominick L. Frosch, lead author of the new study and an associate investigator in the Department of Health Services Research at the Palo Alto Medical Foundation Research Institute in California. “But patients still aren’t perceiving the relationship as a partnership.”
Interestingly, most participants in this study were over 50, lived in affluent areas and had either attended or completed graduate school. “It’s hard to think that people from more disadvantaged backgrounds would find it any easier to question doctors,” Dr. Frosch said.
While understanding health care issues and making themselves heard in discussions were not difficult in general for the participants in the study, the skills and confidence they had in other settings appeared to have little relevance once they were in their doctors’ offices. They could not speak as easily as they normally did. “People experience a different sense of self in the doctor-patient interaction,” Dr. Frosch observed. “The clinical context creates a reluctance to be more assertive.”
Dr. Frosch and his colleagues are working on a larger study examining the extent to which patients feel constrained. And they have plans to study whether there are better ways to encourage patient engagement.
Systemic changes to increase shared decision-making must be addressed as well. Care organizations and doctors’ practices must be restructured to allow more in-depth conversations; clinicians need to be reimbursed for the time required for more meaningful conversations; and health care systems must adopt rigorous quality standards that measure and value real patient engagement in decisions.
“We urgently need support of shared decision-making that is more than just rhetoric,” Dr. Frosch said. “It may take a little longer to talk through decisions and disagreements; but if we empower patients to make informed choices, we will all do much better in the long run.”
Things to discuss with your doctor
Some of us are fortunate enough to have built up a relationship with a physician over many years, so there's some genuine rapport and trust to bank on. But it can be a difficult exchange to navigate. Often you don't feel great to begin with. The doctor seems hurried and speaks in jargon. You're intimidated and reluctant to talk about personal issues. Besides, even in the best of circumstances, it's hard to know what's important to mention.
Several members of the Health Letter's editorial board were asked to suggest topics and issues that patients should (but usually don't) discuss with their doctors. Here are 11 of their suggestions for things you should tell your doctor:
1. What you want to do or used to do but can't do any longer. Either out of stoicism, denial, accommodation, or some combination of all three, people often come to accept a certain level of disability, especially if it's the result of a condition that has come on slowly or involves something private like sex. Lab tests or a physical examination aren't going to reveal the compromises you've made along the way. If you don't tell your doctor about them, you may be missing out on treatments that would ease the problem, or even solve it.
2. What you're afraid of.
Particularly after the diagnosis of a serious disease, many people dwell on the worst. Even without a diagnosis, some people carry around pretty wild fears about medical conditions. Your doctor can't become your psychotherapist. But a thoughtful, attentive doctor (not all of them are, of course) might reassure you by giving you some facts or a calmer, more objective perspective on your situation.
3. Where you've traveled.
Inexpensive airfare has made travel even to formerly remote places in Africa and Asia so common these days that we tend to take it for granted. But especially if you have those notoriously vague "flu-like" symptoms, it's essential to tell your doctor about any recent trips. You may have caught something that can be treated — and could be disastrous if it isn't.
4. If a family member has recently been diagnosed with a serious disease.
Family history is critical information for any doctor. As genetic and other forms of testing advance, people are getting diagnosed with new conditions or "preconditions" more often. Last year's family history may be out of date. Keeping it current will help your doctors make all sorts of decisions, not the least of which is whether you should be tested for a condition.
5. Over-the-counter pills and supplements you take.
Patients often forget to tell doctors about nonprescription medications they're taking regularly, and they'll deliberately keep them in the dark about herbal medicines because they think a mainstream doctor will be critical, ignorant, or — worst of all — both. But over-the-counter medications and supplements can have dangerous interactions with conventional medications.
6. The medications you take that have been prescribed by other doctors.
To put it mildly, American health care is not very well coordinated. Especially if you're seeing several specialists, you can't assume that they have conferred (indeed, they probably haven't). Medical records are often Balkanized, with information collected at one office or institution never reaching another. The form you fill out in the waiting room usually asks you about the medications you're taking, but the doctor might not have had time to look at it carefully. So to be on the safe side, you should tell a doctor about medications that other doctors have prescribed for you. Bring a list or even the pill bottles themselves.
7. The medications you're supposed to take but don't.
More than a few pills never leave the bottle. Sometimes side effects are to blame. Other times people never really intend to take the medicine. If you discuss the situation with your doctor, maybe the prescription can be changed. If you just don't like taking pills, perhaps there's a perfectly good non pharmacological approach to your problem. Either way, you won't find out unless you come clean about not taking your medications.
8. If you smoke or drink heavily.
Most smokers know they shouldn't, so they're sometimes ashamed to tell a doctor about it. If you're asked about smoking, don't lie — and if you aren't asked, bring it up yourself. The same goes for heavy drinking, although denial is obviously a problem.
9. If you've been depressed or under stress.
The stigma is fading fast, but many people still don't like to admit they're depressed. Stress isn't considered shameful, but it's hard to pin down. And both get channeled into fatigue, insomnia, or irritability, so the root cause may get buried under the symptoms. Broaching the subject with a doctor is a good way to start sorting through these issues. Particularly for depression, it may lead to treatment — antidepressants, talk therapy, or some combination — that makes you feel a whole lot better.
10. If you're having incontinence problems.
Urinary or fecal incontinence is a prime example of a condition that people learn to live with because they're embarrassed by it or see it as an unavoidable consequence of old age. There are no guarantees, but these days they're often manageable conditions — but only if you tell your doctor first.
11. If you're experiencing sexual dysfunction.
Everywhere you turn these days, it seems like there's an ad for Viagra, Levitra or Cialis, the erectile dysfunction drugs. Haven't we talked about sexual dysfunction enough? It's different, though, when it's you and your problem. Many people clam up when a doctor really could help them with sexual dysfunction.
Of course, you're probably not going to have time to talk about all of these topics in one appointment. So you need to make the most of it by thinking ahead. Writing down some details, like your travel dates and destinations, the over-the-counter medications you're taking, and family history of disease can be a major time saver. That way you won't be there in the doctor's office trying to remember it all. Many people find it helpful to identify the three or four most important issues they want to discuss with a doctor. Make a list of your priorities, or have someone do it with you.
Poor Health Literacy
By Jane E. Brody : NY Times Article : January 30, 2007
How often have you left a doctor’s office wondering just what you were told about your health, or what exactly you were supposed to be doing to relieve or prevent a problem? If you are a typical patient, you remember less than half of what your doctor tries to explain.
Whether you left school at 16 or have a doctorate; whether your annual income is in four figures or six; whether you are black, white, Hispanic, Asian or American Indian, chances are there have been many medical encounters that left you with less than optimal understanding about how you can improve or protect your health.
National studies have found that “health literacy” is remarkably low, with more than 90 million Americans unable to adequately understand basic health information. The studies show that this obstacle “affects people of all ages, races, income and education levels,” Dr. Richard H. Carmona, the United States surgeon general, wrote in the August issue of The Journal of General Internal Medicine, which was devoted to health literacy.
The fallout is anything but trivial. Researchers have found that poor health literacy, which is especially prevalent among the elderly, results in poor adherence to prescription instructions, infrequent use of preventive medical services, increased hospitalizations and visits to the emergency room and worse control of chronic diseases.
The consequences are poorer health and greater medical costs. All because doctors fail to speak to patients in plain English (or Spanish or Chinese or any other language) and fail to make sure that patients understand what they are told and what they are supposed to do and why.
In a study published in the internal medicine journal, conducted among 2,512 elderly men and women living on their own in Memphis and Pittsburgh, those with limited health literacy were nearly twice as likely to die in a five-year period as were those with adequate health literacy. That held true even when age, race, socioeconomic factors, current health conditions, health care access and health-related behaviors were taken into account.
Another study in the journal among 175 adult asthma patients treated by Cornell University doctors found that “less health literacy was associated with worse quality of life, worse physical function and more emergency department utilization for asthma over two years.”
Among the many problems resulting from limited health literacy are misinterpretations of warning labels on prescription drugs. For example, among 251 adults attending a primary care clinic in Shreveport, La., those with low literacy were three times more likely to misunderstand warnings than the more literate.
When the warning label read “Do Not Chew or Crush, Swallow Whole,” misinterpretations included “Chew it up, so it will dissolve” and “Don’t swallow whole or you might choke.”
When the warning read “Medication Should Be Taken With Plenty of Water,” the mistakes included “Don’t take when wet” and “Don’t drink hot water.”
When the warning was “For External Use Only,” the mistakes included “Medicine will make you feel dizzy” and “Use extreme caution in how you take it.”
Better Communication
Despite major reports on the need to improve health literacy issued in the last decade by organizations including the American Medical Association and the National Academy’s Institute of Medicine, little improvement has been noted in how much patients understand and remember about encounters with health care practitioners.
A main obstacle has been the decreased time patients can spend with their doctors, dictated largely by managed care and other medical reimbursement plans.
A second hurdle is the embarrassment that patients with limited health literacy experience when they do not understand what the doctor has said. And, of course, asking for clarification is seriously impeded by the imbalance in power between the white-coated physician and the paper-wrapped patient. Even when conversations are conducted in the doctor’s office with a fully clothed patient, patients are often reluctant to ask questions.
The tools for repairing this problem lie mainly within the realms of medical education and clinical practice. More medical schools, residency programs and continuing education programs for practicing physicians need to include training in clinical communication skills.
Dr. Sunil Kripalani of the Emory University School of Medicine in Atlanta and Dr. Barry D. Weiss of the University of Arizona College of Medicine in Tucson suggest these strategies:
Experts on health literacy also encourage doctors to assess patients’ health literacy by asking them to read aloud a list of 66 medical terms, each within 5 seconds. Patients are scored on how many words they pronounce correctly.
Taking the Lead
Do not wait until doctors become better at communicating. If you want the best medical care, you have to take the initiative. If the doctor says something you do not understand, ask that it be repeated in simpler language. If you are given a new set of instructions, repeat them back to the doctor to confirm your understanding. If you are given a new device to use, demonstrate how you think you are to use it.
Insist that conversations about serious medical matters take place when you are dressed and in the doctor’s office. Take notes or take along an advocate who can take notes for you. Better yet, tape-record the conversation to replay it at home for you and your family or another doctor.
If you have received a diagnosis of a new problem and want to explore it further on the Internet, be sure to look up reputable sites. Two that can be relied on are www.nlm.nih.gov, produced by the National Library of Medicine, and www.healthfinder.gov, produced by the United States Department of Health and Human Services. Many major medical centers also provide useful, accurate information online.
Questions for Better Care
By Laura Landro : WSJ : September 20, 2011
People often fail to ask their doctors questions that could lead to fewer medical errors and better outcomes—and doctors don't routinely encourage them to do so. That's despite years of efforts to improve doctor-patient communication.
Tim BowerPart of the problem is the intimidation factor that comes with the doctor's white coat. Also to blame are mounting time pressures that mean less physician or nurse interaction with patients, according to the federal Agency for Healthcare Research and Quality.
On Tuesday, the agency is launching a new campaign to promote a solution that seems obvious but often doesn't happen: getting patients to ask questions. The aim is to get patients to prioritize their top concerns and questions before a medical encounter—and to get doctors to prompt patient questions in order to provide better care. "Americans want more time with their doctors, but what hasn't sunk in is the importance of using the time you have with your doctor wisely," says Carolyn Clancy, the agency's director.
Even though he had suffered multiple heart attacks and struggled with congestive heart failure and diabetes, Bill Lee never had much of a dialogue with his doctors. "Doctors are the experts, so who was I to challenge them and what they were telling me?" says Mr. Lee, 55 years old, who is featured in a video that is part of the new campaign.
He took medications without asking what they were for, sat for hours in waiting rooms and then felt rushed through appointments. It wasn't until a doctor told him he would keep having heart attacks and there was nothing more to be done that he says he realized he needed to start asking questions about his care.
Some suggested questions to ask the doctor at a checkup:
• What is my diagnosis?
• What are my treatment options? What are the benefits of each option? What are the side effects?
• Will I need a test? What is the test for? What will the results tell me?
• What will the medicine you are prescribing do? How do I take it? Are there any side effects?
• Why do I need surgery? Are there other ways to treat my condition? How often do you perform this surgery?
• Do I need to change my daily routine?
Source: Agency for Healthcare Research and Quality
For consumers, the agency is offering new online tools on its website, including an interactive "Question Builder." Patients talking to the doctor about a proposed surgery, for example, are prompted to ask how long it will take to recover. The site offers tips on what to do before, during and after medical visits, such as calling the doctor if there are any side effects. Videos feature doctors discussing the importance of preparing for medical visits with a prioritized list of questions. Patients talk about how asking questions helped them get better care.
Also, the agency is launching its first ad campaign targeting doctors, with donated space in publications, including the New England Journal of Medicine, that reach two million clinicians. The ads urge doctors to ask patients about their health priorities, because "a simple question can reveal as much as a test." Doctors can also print or order free forms to help patients prioritize their top three questions.
Mr. Lee, who manages a database for the state of Maryland, had his first of 10 heart attacks in 2004, with three in the first year alone. He says he believes he would be dead today if he had accepted the prognosis of the doctor who told him there was nothing more to be done. He ended up at the University of Maryland Medical Center in 2007, where he has survived three more heart attacks and is cared for by a team that includes a cardiologist and a nurse practitioner.
Mr. Lee says he began preparing a list of the most important questions for each medical visit. When he was placed on a more aggressive course of medications to help strengthen his heart—he takes 21 pills in the morning and 19 at night—he asked what each was for, how it worked and whether he would have to take the drug for the rest of his life.
Because his cholesterol was at a good level, he asked why he needed a cholesterol-lowering drug. His doctor explained it was an important therapy for patients after heart attacks, so he agreed to take it and read the information he was provided. "In the past I probably would have just said, 'OK, fine,' and I wouldn't read the pamphlet," Mr. Lee says. "Now I realize this is my body, and if I don't ask what I need to know, nobody's going to fill me in."
Erika Feller, his cardiologist and medical director of the heart-transplant unit at the hospital, says Mr. Lee was a possible candidate for a transplant at one point, "but due to his hard work and our hard work he's been able to avoid that and stay out of the hospital." She acknowledges that time constraints are an issue and physicians aren't always great at translating medical issues for patients, particularly when they have to manage complex regimens such as Mr. Lee's. The hospital administers self-tests to patients to make sure they understand things like their diagnosis and their medications.
Of course, patients may feel intimidated asking medical professionals tough questions, especially if the response is brusque or even chilly. And it's usually more effective to ask questions politely, rather than in a contentious way. "Bill isn't shy but he's not a pain in the neck. He asks great questions and he is always appropriate," says Jane Kapustin, the nurse practitioner who treats Mr. Lee's diabetes.
Tell Me Where It Hurts
Poll: Doctors and Patients Often Let Each Other Down
By Buzz McClain : Special to The Washington Post : Tuesday, February 6, 2007
Most patients think their doctors treat them respectfully, listen to them patiently and care about their emotional well-being. That's the finding of a recent poll of 39,000 patients and 335 primary care doctors. Still, the survey found plenty of complaints on both ends of the stethoscope.
Among patients' biggest grumbles, found the survey conducted by the nonprofit Consumer Reports National Research Center and published in the February issue of Consumer Reports: doctors' failure to divulge the cost of medications or office visits (cited by two-thirds of respondents); failure to mention medication side effects (cited by almost one-third); doctors who couldn't see them within a week (19 percent); and doctors who don't return tests results promptly (7 percent). For their part, doctors took umbrage with patients for not "following their prescribed treatment," waiting too long to make an appointment and being reluctant to discuss their symptoms.
Some of the survey findings appeared to contain ironies. For example, most patients said they "completely" follow the doctor's advice -- on filling prescriptions, taking medications on time and completing the course of meds. But most doctors -- 59 percent -- noted patients' noncompliance as their main complaint.
Failure to follow advice "is a reality, that's for sure," said Edward Hill, immediate past president of the American Medical Association and a family physician in But Hill admitted that "sometimes we in medicine don't communicate quite as well as we should." The survey confirms that miscommunication is rife on both sides.
A third of the doctors complained that many of their patients are not specific about their symptoms, which handicaps the doctor when\nit comes to treating them. The study suggests patients may be embarrassed when describing what ails them, so they withhold details that would assist the treatment. They may also neglect to mention details because they don't think they're important.
"I call those embarrassing medical topics the Five P's," said Vicki Rackner, a former Seattle surgeon and the founder of Medical Bridges, a company that encourages employers to have their workers take a more assertive role in health care: "peeing, pooping, paying, procreating and psychosomatizing -- physical pain brought on by emotional causes." She called poor communication "one of the basic barriers to quality medical care."
Patients who said they first chose their doctor on the\nbasis of friend or family recommendations were more likely to have a positive experience than those who chose the doctor because of his or her location or participation in a health plan in Tupelo, Miss. "It's a personality issue many times. I tell them to take the medication as prescribed, and as soon as they feel better they quit taking it, even for chronic diseases like high blood pressure and diabetes," for which treatment isn't effective unless medication is continued.
But Hill admitted that "sometimes we in medicine don't communicate quite as well as we should." The survey confirms that miscommunication is rife on both sides.
A third of the doctors complained that many of their patients are not specific about their symptoms, which handicaps the doctor when it comes to treating them. The study suggests patients may be embarrassed when describing what ails them, so they withhold details that would assist the treatment. They may also neglect to mention details because they don't think they're important.
"I call those embarrassing medical topics the Five P's," said Vicki Rackner, a former Seattle surgeon and the founder of Medical Bridges, a company that encourages employers to have their workers take a more assertive role in health care: "peeing, pooping, paying, procreating and psychosomatizing -- physical pain brought on by emotional causes." She called poor communication "one of the basic barriers to quality medical care."
Patients who said they first chose their doctor on the basis of friend or family recommendations were more likely to have a positive experience than those who chose the doctor because of his or her location or participation in a health plan.
"You add a link of trust," Rackner said, just as with a personal relationship.
"As seen on TV" may work to sell Ginsu knives but appears less dependable for medication. Nearly 80 percent of doctors reported being urged by patients to prescribe them medications they saw advertised in TV ads; 40 percent of the doctors said such advertising "was not in the public interest."
The survey confirmed many patients' reliance on the Internet for self-education. Forty percent of patients surveyed said they went to the Internet for information about their pain and possible cures. About the same share of doctors -- 41 percent -- said their patients were misinformed by what they read on the Web. "I keep a little card in my pocket of what I think are reputable Web sites they can go to," Hill said. "For instance, the National Institutes of Health Web site, or the CDC [Centers for Disease Control and Prevention] Web site or [official] specialists' Web sites."
On the subject of divulging the cost of health care, Rackner said doctors need to do more.
"When I was first starting out, I wondered what it cost to take out a gallbladder," she said. "One surgeon told me, 'You can't ask that question; it violates antitrust laws. We could be accused of price fixing.' There's a conspiracy of secrecy about cost. That's a big problem that's fortunately changing. Money might be the ultimate taboo [in health care], even more so than sex."
As for patient face time, more than half of the surveyed doctors said that had been shortened in the past five years, during which time they had had to expand their practices to meet their target income. And more than half also said they saw too many patients in one day to give effective treatment.
Consumer Reports acknowledged that the survey may not represent the views of the general population, since the respondents were composed of subscribers to the magazine. The physicians who were polled, however, came from a random sample drawn from a national list of doctors.
Only 9 percent of patient respondents cited limited face time with doctors as a major complaint. No survey question was asked about the wait time at the office. ·
Patients lie to doctors - and suffer for it
Fibbing about medicine or smoking courts disaster, doctors say
The Associated Press : Feb 16, 2007
There’s an open secret in medicine: Patients lie.
They lie about how much they smoke and whether they’re taking their medicine. They understate how much they drink and overstate how much they exercise. They feign symptoms to get appointments quicker and ask doctors to hide the truth from insurance companies.
“Doctors have a rule of thumb. Whatever the patient says they’re drinking, multiply it by three,” said Dr. Bruce Rowe, a family doctor in suburban Milwaukee. “If they say two drinks a day, assume they have six.”
Hippocrates, the father of medicine, is said to have warned his students in about 400 B.C. that patients often dissemble when they say they’ve taken their medicine. TV’s fictional Dr. Gregory House repeats the same message to his crack team: “Everybody lies.”
But lying can lead to expensive diagnostic procedures and unneeded referrals to specialists. It also can have disastrous results.
‘I could have ended up in a coma’
“I definitely learned my lesson. I could have ended up in a coma,” said Michael Levine, a 28-year-old financial adviser in Los Angeles who lied to a specialist he saw for a wrist injury. Misguided pride, he said, kept him from mentioning the Xanax he was taking for anxiety. He didn’t think the doctor needed to know.
“He wasn’t my regular doctor. He was treating my wrist,” Levine said.
The doctor prescribed the pain reliever Vicodin and Levine took it on top of Xanax. The next few days vanished in a cloud of grogginess. Levine slept through ringing phones and alarms and woke up exhausted. His wrist pain was easing, but he could barely function. Eventually, he stopped the Vicodin, returned to the doctor and, under questioning, confessed.
“The doctor said, ‘Why didn’t you tell me? I never would have prescribed you that,”’ said Levine, who now realizes how easily he could have overdosed and died. “For the future, I will always ’fess up.”
Why do patients lie? The examination room itself is an environment that discourages honesty, said Los Angeles psychiatrist Dr. Charles Sophy.
“You’re naked in a gown, and you have a guy standing there clothed with a coat on, and there’s all sorts of things in his pocket. And you’re sitting there, basically naked ... that makes it hard to come clean,” Sophy said. On top of that, the doctor may be rushed.
Researchers say patients often lie to save face. They want to be “good patients” in their doctors’ eyes. But that’s a misguided and risky practice. For example, a woman who doesn’t want to admit she smokes and then is prescribed birth control pills is at greater risk for blood clots.
Some researchers estimate more than half of patients tell their doctors they’re taking their medicine exactly as prescribed when they’re not. In reality, they don’t like the side effects, can’t afford the pills or didn’t understand the instructions.
Huge gap between patients' words and actions
A study by researchers at Johns Hopkins School of Medicine found a big gap between what patients said and what they did. Researchers looked at how patients with breathing problems used an inhaler equipped with a device that recorded the date and time of use and compared that with what the patients said.
Seventy-three percent of patients reported using the inhaler on average three times a day, but only 15 percent actually were using it that often. And 14 percent apparently deliberately emptied their inhalers before their appointments to make it look as if they were good patients.
Some doctors are seeking approaches that encourage more honesty. Dr. Zach Rosen, medical director of New York’s Montefiore Family Health Center, asks his patients a series of questions to determine whether they’re taking their medicine.
“I ask, ‘What medications are you taking?’ At first, I just want the names,” he said. “They say, ‘I’m taking X, Y or Z.’ Then I’ll say, ‘That’s great. How often are you taking that medication?’ ... Then I’ll say, ‘Are you experiencing any problem in taking your medications?’ ”
Asking several questions takes more time. But the approach elicits better, more honest responses than a single question, Rosen believes.
Doctors can avoid sounding judgmental
Doctors also should avoid phrases that sound judgmental, said Nate Rickles, an assistant professor of pharmacy at Northeastern University. There’s a big difference between “Why aren’t you taking the medication as prescribed?” and “A number of my patients don’t take their medication as prescribed, and they do it for a variety of reasons. What do you think might be going on with you?”
When alcoholics seek detox treatment from Dr. Akikur Mohammad, an addiction specialist at the University of Southern California School of Medicine, they must tell him exactly how much they’ve been drinking so he can give them the right dose of medication to treat withdrawal.
“I tell them, ‘You can lie to your friend, you can lie to your family members, but you came here for help, and your report will determine the treatment plan. If I undermedicate you, you may have seizures and die,”’ Mohammad said. Despite the warnings, patients still sometimes mislead him, he said.
Cyndi Smith, a 45-year-old Weight Watchers leader in suburban Chicago, admits her own lying past when it came to questions about her exercise and eating habits. She says she lied because she was fooling herself.
“You convince yourself of certain things, and it becomes true, when in reality it’s not,” she said. If her doctor had questioned her more thoroughly, she says she might have told the truth.
“I think doctors could be a little more point-blank,” she said. “And we need to be a little more honest.”
Things to discuss with your doctor
By Jane E. Brody : NY Times Article : December 25, 2007
My friend’s grandmother-in-law, at 94, has refused her son’s pleas to make a routine doctor visit. “‘Why should I go to the doctor?’” my friend recalled her exclaiming. “‘They don’t know anything anymore. You used to go to one doctor and he told you what was wrong and what to do about it. Now all the doctor does is draw vials of blood, order tests, and then tell you to go to another doctor.’”
Dear lady, you are so right. Medicine is not what it used to be. No longer do most people see just one doctor for whatever ails them. And no longer do most doctors have the luxury of spending half an hour or more with each patient, getting to know everything about their lives and families, as well as their bodies and minds. To meet rising costs, doctors are having to cram more and more patients into their already busy and demanding schedules, meaning that appointments are rarely more than 15 minutes apart.
Even those doctors who specialize in family or internal medicine usually limit the time they can spend with each patient. And if symptoms or test results suggest a problem, they must often refer patients to medical specialists and other providers for further diagnostic work and follow-up care.
It is easy to see this as a downside. But considering that Americans today are living longer and healthier than ever, there must be something good about how medicine is practiced today.
No longer can one doctor “know everything” (not that any doctor ever did). Nor do doctors have the training and expertise to perform the myriad tests and procedures that did not even exist half a century ago and that have helped to extend quality years of life for so many.
The doctor-patient relationship has changed, too. Doctors are less likely to be paternalistic and patronizing. Patients are more likely to be knowledgeable about symptoms and ailments, and the two are more likely to be partners in the patient’s care.
Still, insurance problems aside, many people like my friend’s grandmother-in-law are dissatisfied with the tenor of modern medical care. They feel rushed, poorly understood and more like a customer in a supermarket line than a well-cared-for patient.
With just the 7 to 15 minutes that doctors give each patient on most visits, the roots of dissatisfaction are easy to understand. The trick is establishing a good working relationship with a doctor and getting what is needed from these necessarily brief medical encounters.
Dr. Marisa C. Weiss, a breast cancer specialist at Lankenau Hospital in Wynnewood, Pa., who has ample experience as doctor and patient, has written “7 Minutes: How to Get the Most From Your Doctor Visit” (Random House Custom Media, 2007). Some of her advice follows.
Prepare for the Visit
You don’t want to waste doctors’ time on things you could and should have done at home. Arrive with a complete list of all the prescription and over-the-counter medications and supplements you take, including dosages and dosing schedules. Also have the names, mail and e-mail addresses and telephone numbers of the other doctors you see in case your doctor needs to contact them.
Write a list of your symptoms, their nature and frequency, and anything else you may have noticed about them, including what may relieve them.
Make a list of questions and concerns, and put them in order of priority so the most important ones are dealt with. If time is short, ask if you can set up a phone call or e-mail communication for those that remain. Bring paper and pen to write down what the doctor says or ask in advance if you may record the doctor’s comments to be sure you heard them correctly.
When dealing with a complex or serious medical question, take along a trusted relative or friend who can provide a second set of ears and record what the doctor says. That person may also think of other important concerns or questions to ask.
Dr. Weiss suggests that patients set the stage for a congenial visit by greeting the doctor with a smile and handshake (or hug, if appropriate). It’s also good to thank the doctor for seeing you, especially if you required a last-minute appointment.
Dr. Davis Liu, a family physician with the Permanente Medical Group in northern California who has written “Stay Healthy, Live Longer, Spend Wisely: Making Intelligent Choices in America’s Health Care System” (Stetho Publishing, 2008), has devised the acronym DATE to help patients derive the most from a doctor’s visit:
D FOR DIAGNOSIS : Write down the medical terms, not lay lingo.
A FOR ADDITIONAL TESTS : Does the doctor require or recommend other tests, X-rays or procedures? Tell the doctor you expect to be informed of the results, good or bad.
T FOR TREATMENT PLAN : Is a new medication or dosage being prescribed? Is surgery needed, and how urgently? Should you see a physical therapist or change your diet or exercise program?
E FOR FURTHER EXAMINATIONS OR EVALUATIONS : When should you return for a follow-up? What are the signs or symptoms to watch for and when should you call the doctor if the condition does or does not change?
Choosing Wisely
Perhaps most critical in gleaning the maximum from a medical visit is to find a doctor with whom you have a rapport. Dr. Weiss suggests that in addition to having good training and experience (at least a few years in the field) and admitting privileges at a good hospital, the doctor you choose should be thorough and supportive, should listen to you, answer your important questions and be open to input from you about your symptoms, treatment and options.
Your doctor should also appreciate that health problems can be confusing and frightening. The doctor should respond to your concerns with patience and kindness, repeating information if needed.
The office should be neat and comfortable, with adequate seating and reasonable waiting times. Still, always arrive prepared with something to occupy the time if the wait should run more than 15 or 20 minutes. Starting an appointment furious about the wait is not conducive to good care.
Most important to me is a doctor who is accessible, by phone or e-mail, and who responds to my concerns in a timely fashion. My family doctor’s answering machine gives his cellphone number for calls that cannot wait until he is in the office and recommends going to an emergency room for urgent or potentially life-threatening problems.
The Moral ....................or "The Doorknob Moment"
Perri Klass, MD : NEJM Article : May 29, 2008
I came home the other night clutching a scrap of paper towelwith a mother's cell-phone number scribbled on it. I had beenprecepting in the residents' pediatric primary care clinic,and an intern had presented a patient: a 20-month-old boy whohad been brought in by his mother because he was vomiting. He'd thrown up seven times since 2 that morning. No diarrhea, but he wasn't eating or drinking much. Still, he didn't look dehydrated, his mother said he'd had several wet diapers, and when the intern examined him, she found his diaper wet again.
The intern said he had a temperature of 100.8°F, and his ears looked infected. "Oh, great," I said, "so we know what'sgoing on."
She nodded but looked puzzled. "Why would an ear infection make him throw up?" she asked hesitantly.
When I answered honestly — some kids have touchy stomachs,and when they get sick with anything, they throw up —she looked disappointed; she was expecting pathophysiology.I drew myself up. Perhaps, I suggested, the ear infection was the sequela of a preexisting upper respiratory infection, and the child was producing a lot of mucus, which was dripping into the stomach and provoking the emesis. That went over a little better.
We went in to see the child. He was a sweet, clingy toddler,warily sheltering on his mother's shoulder, and he didn't look happy to see me. In fact, he started crying, which allowed me to verify that indeed he was not dehydrated, since his face was soon wet with tears. I examined him and agreed that his ears looked infected, the eardrums red on both sides and one of them bulging, not moving, hinting at infected fluid behind it. Yes, I said, good job, I agree, not dangerously dehydrated,I agree, ear infection. And let's remind the mother to encourage him to drink liquids and watch him carefully to make sure he doesn't get dehydrated. I smiled at the mother reassuringly and was relieved to see that she looked mature and competent, as she comforted and soothed her child with efficient, fond caresses.
But she looked anxious. She had something else she wanted to bring up, something she hadn't told the intern or mentioned to me when I was questioning her. "Doctor, let me ask you one more thing," she said. "It couldn't be that this was from falling down, could it? From falling down the stairs?"
And out came the story: the night before last, the child's brother had come up the stairs from the basement, and when he opened the door, the baby was right there, reaching for something,and he fell forward down the stairs. "I didn't see it," she said, "but I heard the thump-thump-thump when he fell. And his brother said he got hurt all over his head. But that couldn't be doing this, right?"
So we had a problem. One of the danger signs after head traumais vomiting. Here was a child who had fallen down a flight of stairs about a day and a half ago and a little more than 24hours later had begun throwing up repeatedly. And I was about to send him home with a diagnosis of acute otitis media.
I could see that I was disappointing the mother when I didn't just wave it away: don't be silly, what could one thing have to do with the other? She had offered up the falling-down-the-stairs story as a "doorknob moment" — the doctor essentially done, her hand (or the patient's) literally or figuratively on the doorknob, and the patient brings up a deliberately by-the-way question that turns the whole thing inside out. So I put her through the story in more detail, and it sounded pretty benign:just a few wooden steps, the whole flight maybe 3 feet high.The child hadn't been knocked out — a sign that the head trauma was relatively minor. The mother hadn't noticed any changes in how he was walking — though actually, he wasn't walking much; he was too clingy because he was feeling sick. Of course,he didn't have the language to say whether he felt pain. And even if he'd had language, he could have pointed at his head and told us it hurt and left us completely unsure whether it was his head or his ear.
Head trauma shouldn't give you even a low-grade fever, I told myself. The time course of the emesis wasn't textbook —it had started more than 24 hours after the fall, and it seemed to have resolved after a few hours. And the child looked good,didn't he? Well, he was clearly not dehydrated, which had loomedas the major danger when I walked into the room. But could Igo further than that? The words I would have used to describe him were clingy and cranky — words deliberately chosen,in part, because they don't sound medical alarms. Clingy and cranky, not playful or active; in fact, he was unwilling to walk. I asked his mother to put him down for a minute, but when she tried, he began to wail. He pulled up his legs into the fetal position, and goodbye to any hope of assessing his gaitto confirm that he looked neurologically normal. It's like that with toddlers. His mother smiled at me apologetically as she gathered him up again. "He's been like this," she said. "Not running around. Not playing so much."
We examined his head for bumps or bruises. We went over thes tory again. Finally, I sent the mother home with prescription sfor amoxicillin and acetaminophen and gave her some of the what-to-watch-for signs off the standard head-trauma information sheet: if hestarts vomiting again, if he seems less alert than usual, come to the emergency room. I wrote her phone number on a piece of paper towel, saying I'd call her later to see how he was doing.
And I worried. It would be silly to send him to the emergency room or radiology when the overwhelming odds were that he justhad an ear infection. The timing didn't really make sense fora head bleed, I told myself, and he looked like a kid with aviral syndrome.
Later that night, when I called, the mother was as reassuring as could be: "Oh, Doctor, he's doing great, he's playing, he's running around, he's really acting like himself. He even atea little bit." No more emesis, no mental-status changes, normal energy level restored.
But I've been thinking ever since about why I was so worried.It's not such an unusual story, after all, a toddler who took a fall. I've probably examined dozens of children who were brought in with that as the chief complaint: fell off the bed, tumbled out of the stroller, climbed up on the back of the couch and dived right over. I've felt their heads and looked in their eyes. Some I've sent to radiology, but not most. Some I've worried about for obvious reasons — concerns about child abuse and inflicted injury — and I've looked them over for bruises and unexplained marks. Some I've sent home with their parents holding head-trauma instruction sheets. And so far, nothing terrible has transpired with any of them.
So why did this boy get me so worried? Maybe precisely because the head trauma wasn't the reason for the visit. He was brought in for vomiting, and we didn't even think to ask about head trauma, because the vomiting seemed to be part of some viral syndrome, and we heard about it only in the elaborately casual doorknob question. Somehow that made it seem much more likely that the injury was severe, the story not what it appeared to be. I hadn't asked the right question, I had been pursuing the wrong story. I had almost missed this history altogether —didn't that make it more likely that I'd missed something serious? Wouldn't that turn out to be the "teaching point" if you were telling this story to medical students? Listen properly, and don't overtake the patient's narrative with your own, or you'll miss the most important information. And if I listened properly and rephrased the story as that of a 20-month-old with a history of emesis times seven and recent head trauma from a fall down the stairs, didn't that sound kind of serious?
Somehow, this encounter had tripped a wire with me — a wire braided, I realized, of history and literature. The literature was the Raymond Carver story "A Small, Good Thing," about a child who is hit by a car, who "got unsteadily to his feet. The boy wobbled a little. He looked dazed, but okay." He walks home and tells his mother, and then he becomes unconscious.The story traces his hospital course and describes the nightmare days and nights of his parents' vigil and the doctors' well-meaning but inept attempts to communicate with the parents and ultimately futile efforts to save the child. It's a hard story for a parent or a pediatrician to read.
There's a moment in it when the child has just been hospitalized, newly unconscious. The doctor has spoken to the parents in highly reassuring terms, and the boy's father decides to go home and bathe and change his clothes.
Howard drove home from the hospital. He took the wet, dark streetsvery fast, then caught himself and slowed down. Until now, his life had gone smoothly and to his satisfaction — college,marriage, another year of college for the advanced degree in business, a junior partnership in an investment firm. Fatherhood.He was happy and, so far, lucky — he knew that. . . .So far, he had kept away from any real harm, from those force she knew existed and that could cripple or bring down a man if the luck went bad, if things suddenly turned.
There it is, I thought, rereading the story. The understanding of how close we all are to being unlucky. The child who steps off a curb without looking. The story in the exam room that you don't listen to properly. The superficially well patient who is sicker than anyone thinks. So I had this story stuck in my mind, and the message I remembered best is one Carver probably never intended, one better suited to an ER instruction sheet: Even minor head trauma can be serious.
At the same time, I had a true story nagging at me, one that my own preceptor in primary care told when I was a pediatric resident. We had been talking about head injuries, and the preceptor had offered up a grim story: an adolescent who had hit his head in some freak accident but seemed fine and then died from an unsuspected bleed. The story had made a tremendous impression on me — because what sounded like a minor injury had killed someone, because it had happened in the practice of a very good doctor whom I regarded as my mentor, because he knew the family well and had been the one they called when their son died.
But I had heard that story at least 20 years earlier, when itwas already many years old, and I wondered how much of it I was inventing. So I tracked down my preceptor and called him and said, rather hesitantly, "I think there was a story you told, back in 1986 or 1987, and it's stayed with me all these years. Something about head trauma that sounded minor but wasn't?"
"I know exactly what you mean," he said. "It broke my heart."And he told the story again: "A 10-year-old boy sliding off the iced roofs of cars in a parking lot, he fell and struck his head. It was relatively minor, he was brought to an emergency room, was examined, had skull films. That was the standard then,before the days of readily available CTs. . . . I was off that weekend. The mom called me on Monday to say he had a bit of a headache but he was okay. Not vomiting, not great,but he was okay. I presumed he had a post-concussion headache.And then at 2 in the morning, I had a call from the mom that he'd stopped breathing and he'd been brought by ambulance to an emergency room some distance off and they were resuscitating him. So I jumped in the car at 2 a.m., and off I went to this place, in time to pronounce him dead." He paused. "He was a sweet boy, a good boy."
And then — once your preceptor, always your preceptor— he took me through the story of the child I had seen in clinic and agreed with the management. "But I thought about your story," I said. "I guess I always think about your story a little bit, and this time I really thought about it."
"The moral of the story is that minor head injuries are significant,"he said. "It still grieves me — I must have been full of sadness when I discussed it with the group. But over the course of my 30-plus years, this little boy who died is the only one."
"So what is the real moral?" I asked.
"Medicine is knowledge, judgment, experience, and luck," he said.
So I have been thinking about the voices that echo in your head when you make a clinical decision — even a relatively low-acuity decision about a child who doesn't seem critically ill. You can't let all the what-ifs terrorize you, or you would do a lumbar puncture on every young child with a high fever and do a CT scan for even the most minor bump on the head. So you just go on practicing, haunted by stories — stories you're a part of, stories that happen to people you love or know well or take care of, stories you hear from your teachers and colleagues, and the occasional well-told story that enters your brain and lives there . . . all those ghosts that hover at your shoulder or in the dark places of your mind.I had a peculiar sense of multiple levels of precepting —of me standing over the intern, and my preceptor standing over me, and of the ways that your medical education comes down to you partly from people you will never meet.
I'd like to think of it, in part, as a collective medical memory. And also as a way of honoring the patients who have suffered "bad outcomes" — and their physicians, too, the ones who are grieving still, who have told and retold these difficult stories. Bad things can be only a step away, and we need to absorb that knowledge and yet still do our job. It seems tome right and proper that even in everyday primary care, there should arise these unexpected, unpredictable moments when the collective memory catches at your sleeve, when the ghosts whisper to you to watch out, to think again, or at least to scribble a cell-phone number on a piece of paper towel and call later just to be sure that everything's truly okay.
Several members of the Health Letter's editorial board were asked to suggest topics and issues that patients should (but usually don't) discuss with their doctors. Here are 11 of their suggestions for things you should tell your doctor:
1. What you want to do or used to do but can't do any longer. Either out of stoicism, denial, accommodation, or some combination of all three, people often come to accept a certain level of disability, especially if it's the result of a condition that has come on slowly or involves something private like sex. Lab tests or a physical examination aren't going to reveal the compromises you've made along the way. If you don't tell your doctor about them, you may be missing out on treatments that would ease the problem, or even solve it.
2. What you're afraid of.
Particularly after the diagnosis of a serious disease, many people dwell on the worst. Even without a diagnosis, some people carry around pretty wild fears about medical conditions. Your doctor can't become your psychotherapist. But a thoughtful, attentive doctor (not all of them are, of course) might reassure you by giving you some facts or a calmer, more objective perspective on your situation.
3. Where you've traveled.
Inexpensive airfare has made travel even to formerly remote places in Africa and Asia so common these days that we tend to take it for granted. But especially if you have those notoriously vague "flu-like" symptoms, it's essential to tell your doctor about any recent trips. You may have caught something that can be treated — and could be disastrous if it isn't.
4. If a family member has recently been diagnosed with a serious disease.
Family history is critical information for any doctor. As genetic and other forms of testing advance, people are getting diagnosed with new conditions or "preconditions" more often. Last year's family history may be out of date. Keeping it current will help your doctors make all sorts of decisions, not the least of which is whether you should be tested for a condition.
5. Over-the-counter pills and supplements you take.
Patients often forget to tell doctors about nonprescription medications they're taking regularly, and they'll deliberately keep them in the dark about herbal medicines because they think a mainstream doctor will be critical, ignorant, or — worst of all — both. But over-the-counter medications and supplements can have dangerous interactions with conventional medications.
6. The medications you take that have been prescribed by other doctors.
To put it mildly, American health care is not very well coordinated. Especially if you're seeing several specialists, you can't assume that they have conferred (indeed, they probably haven't). Medical records are often Balkanized, with information collected at one office or institution never reaching another. The form you fill out in the waiting room usually asks you about the medications you're taking, but the doctor might not have had time to look at it carefully. So to be on the safe side, you should tell a doctor about medications that other doctors have prescribed for you. Bring a list or even the pill bottles themselves.
7. The medications you're supposed to take but don't.
More than a few pills never leave the bottle. Sometimes side effects are to blame. Other times people never really intend to take the medicine. If you discuss the situation with your doctor, maybe the prescription can be changed. If you just don't like taking pills, perhaps there's a perfectly good non pharmacological approach to your problem. Either way, you won't find out unless you come clean about not taking your medications.
8. If you smoke or drink heavily.
Most smokers know they shouldn't, so they're sometimes ashamed to tell a doctor about it. If you're asked about smoking, don't lie — and if you aren't asked, bring it up yourself. The same goes for heavy drinking, although denial is obviously a problem.
9. If you've been depressed or under stress.
The stigma is fading fast, but many people still don't like to admit they're depressed. Stress isn't considered shameful, but it's hard to pin down. And both get channeled into fatigue, insomnia, or irritability, so the root cause may get buried under the symptoms. Broaching the subject with a doctor is a good way to start sorting through these issues. Particularly for depression, it may lead to treatment — antidepressants, talk therapy, or some combination — that makes you feel a whole lot better.
10. If you're having incontinence problems.
Urinary or fecal incontinence is a prime example of a condition that people learn to live with because they're embarrassed by it or see it as an unavoidable consequence of old age. There are no guarantees, but these days they're often manageable conditions — but only if you tell your doctor first.
11. If you're experiencing sexual dysfunction.
Everywhere you turn these days, it seems like there's an ad for Viagra, Levitra or Cialis, the erectile dysfunction drugs. Haven't we talked about sexual dysfunction enough? It's different, though, when it's you and your problem. Many people clam up when a doctor really could help them with sexual dysfunction.
Of course, you're probably not going to have time to talk about all of these topics in one appointment. So you need to make the most of it by thinking ahead. Writing down some details, like your travel dates and destinations, the over-the-counter medications you're taking, and family history of disease can be a major time saver. That way you won't be there in the doctor's office trying to remember it all. Many people find it helpful to identify the three or four most important issues they want to discuss with a doctor. Make a list of your priorities, or have someone do it with you.
Poor Health Literacy
By Jane E. Brody : NY Times Article : January 30, 2007
How often have you left a doctor’s office wondering just what you were told about your health, or what exactly you were supposed to be doing to relieve or prevent a problem? If you are a typical patient, you remember less than half of what your doctor tries to explain.
Whether you left school at 16 or have a doctorate; whether your annual income is in four figures or six; whether you are black, white, Hispanic, Asian or American Indian, chances are there have been many medical encounters that left you with less than optimal understanding about how you can improve or protect your health.
National studies have found that “health literacy” is remarkably low, with more than 90 million Americans unable to adequately understand basic health information. The studies show that this obstacle “affects people of all ages, races, income and education levels,” Dr. Richard H. Carmona, the United States surgeon general, wrote in the August issue of The Journal of General Internal Medicine, which was devoted to health literacy.
The fallout is anything but trivial. Researchers have found that poor health literacy, which is especially prevalent among the elderly, results in poor adherence to prescription instructions, infrequent use of preventive medical services, increased hospitalizations and visits to the emergency room and worse control of chronic diseases.
The consequences are poorer health and greater medical costs. All because doctors fail to speak to patients in plain English (or Spanish or Chinese or any other language) and fail to make sure that patients understand what they are told and what they are supposed to do and why.
In a study published in the internal medicine journal, conducted among 2,512 elderly men and women living on their own in Memphis and Pittsburgh, those with limited health literacy were nearly twice as likely to die in a five-year period as were those with adequate health literacy. That held true even when age, race, socioeconomic factors, current health conditions, health care access and health-related behaviors were taken into account.
Another study in the journal among 175 adult asthma patients treated by Cornell University doctors found that “less health literacy was associated with worse quality of life, worse physical function and more emergency department utilization for asthma over two years.”
Among the many problems resulting from limited health literacy are misinterpretations of warning labels on prescription drugs. For example, among 251 adults attending a primary care clinic in Shreveport, La., those with low literacy were three times more likely to misunderstand warnings than the more literate.
When the warning label read “Do Not Chew or Crush, Swallow Whole,” misinterpretations included “Chew it up, so it will dissolve” and “Don’t swallow whole or you might choke.”
When the warning read “Medication Should Be Taken With Plenty of Water,” the mistakes included “Don’t take when wet” and “Don’t drink hot water.”
When the warning was “For External Use Only,” the mistakes included “Medicine will make you feel dizzy” and “Use extreme caution in how you take it.”
Better Communication
Despite major reports on the need to improve health literacy issued in the last decade by organizations including the American Medical Association and the National Academy’s Institute of Medicine, little improvement has been noted in how much patients understand and remember about encounters with health care practitioners.
A main obstacle has been the decreased time patients can spend with their doctors, dictated largely by managed care and other medical reimbursement plans.
A second hurdle is the embarrassment that patients with limited health literacy experience when they do not understand what the doctor has said. And, of course, asking for clarification is seriously impeded by the imbalance in power between the white-coated physician and the paper-wrapped patient. Even when conversations are conducted in the doctor’s office with a fully clothed patient, patients are often reluctant to ask questions.
The tools for repairing this problem lie mainly within the realms of medical education and clinical practice. More medical schools, residency programs and continuing education programs for practicing physicians need to include training in clinical communication skills.
Dr. Sunil Kripalani of the Emory University School of Medicine in Atlanta and Dr. Barry D. Weiss of the University of Arizona College of Medicine in Tucson suggest these strategies:
- Doctors should assess the patient’s baseline understanding before providing extensive information: “Before we go on, could you tell me what you already know about high blood pressure?”
- Doctors should use plain language, not medical jargon, vague terms and words that may have different meanings to a lay person. They should say chest pain instead of angina, hamburger instead of red meat and, “You don’t have H.I.V.” instead of “Your H.I.V. test was negative.”
- To encourage patients to ask questions, doctors should ask, “What questions do you have?” rather than, “Do you have any questions?”
- Doctors should confirm the patient’s understanding by saying, “I always ask my patients to repeat things back to make sure I have explained them clearly.” Or, if a new skill like using an inhaler was taught, the doctor should have the patient demonstrate the action.
- Then, as fail-safe measures, the doctor should provide written instructions and educational material for the patient and family to review at home.
Experts on health literacy also encourage doctors to assess patients’ health literacy by asking them to read aloud a list of 66 medical terms, each within 5 seconds. Patients are scored on how many words they pronounce correctly.
Taking the Lead
Do not wait until doctors become better at communicating. If you want the best medical care, you have to take the initiative. If the doctor says something you do not understand, ask that it be repeated in simpler language. If you are given a new set of instructions, repeat them back to the doctor to confirm your understanding. If you are given a new device to use, demonstrate how you think you are to use it.
Insist that conversations about serious medical matters take place when you are dressed and in the doctor’s office. Take notes or take along an advocate who can take notes for you. Better yet, tape-record the conversation to replay it at home for you and your family or another doctor.
If you have received a diagnosis of a new problem and want to explore it further on the Internet, be sure to look up reputable sites. Two that can be relied on are www.nlm.nih.gov, produced by the National Library of Medicine, and www.healthfinder.gov, produced by the United States Department of Health and Human Services. Many major medical centers also provide useful, accurate information online.
Questions for Better Care
By Laura Landro : WSJ : September 20, 2011
People often fail to ask their doctors questions that could lead to fewer medical errors and better outcomes—and doctors don't routinely encourage them to do so. That's despite years of efforts to improve doctor-patient communication.
Tim BowerPart of the problem is the intimidation factor that comes with the doctor's white coat. Also to blame are mounting time pressures that mean less physician or nurse interaction with patients, according to the federal Agency for Healthcare Research and Quality.
On Tuesday, the agency is launching a new campaign to promote a solution that seems obvious but often doesn't happen: getting patients to ask questions. The aim is to get patients to prioritize their top concerns and questions before a medical encounter—and to get doctors to prompt patient questions in order to provide better care. "Americans want more time with their doctors, but what hasn't sunk in is the importance of using the time you have with your doctor wisely," says Carolyn Clancy, the agency's director.
Even though he had suffered multiple heart attacks and struggled with congestive heart failure and diabetes, Bill Lee never had much of a dialogue with his doctors. "Doctors are the experts, so who was I to challenge them and what they were telling me?" says Mr. Lee, 55 years old, who is featured in a video that is part of the new campaign.
He took medications without asking what they were for, sat for hours in waiting rooms and then felt rushed through appointments. It wasn't until a doctor told him he would keep having heart attacks and there was nothing more to be done that he says he realized he needed to start asking questions about his care.
Some suggested questions to ask the doctor at a checkup:
• What is my diagnosis?
• What are my treatment options? What are the benefits of each option? What are the side effects?
• Will I need a test? What is the test for? What will the results tell me?
• What will the medicine you are prescribing do? How do I take it? Are there any side effects?
• Why do I need surgery? Are there other ways to treat my condition? How often do you perform this surgery?
• Do I need to change my daily routine?
Source: Agency for Healthcare Research and Quality
For consumers, the agency is offering new online tools on its website, including an interactive "Question Builder." Patients talking to the doctor about a proposed surgery, for example, are prompted to ask how long it will take to recover. The site offers tips on what to do before, during and after medical visits, such as calling the doctor if there are any side effects. Videos feature doctors discussing the importance of preparing for medical visits with a prioritized list of questions. Patients talk about how asking questions helped them get better care.
Also, the agency is launching its first ad campaign targeting doctors, with donated space in publications, including the New England Journal of Medicine, that reach two million clinicians. The ads urge doctors to ask patients about their health priorities, because "a simple question can reveal as much as a test." Doctors can also print or order free forms to help patients prioritize their top three questions.
Mr. Lee, who manages a database for the state of Maryland, had his first of 10 heart attacks in 2004, with three in the first year alone. He says he believes he would be dead today if he had accepted the prognosis of the doctor who told him there was nothing more to be done. He ended up at the University of Maryland Medical Center in 2007, where he has survived three more heart attacks and is cared for by a team that includes a cardiologist and a nurse practitioner.
Mr. Lee says he began preparing a list of the most important questions for each medical visit. When he was placed on a more aggressive course of medications to help strengthen his heart—he takes 21 pills in the morning and 19 at night—he asked what each was for, how it worked and whether he would have to take the drug for the rest of his life.
Because his cholesterol was at a good level, he asked why he needed a cholesterol-lowering drug. His doctor explained it was an important therapy for patients after heart attacks, so he agreed to take it and read the information he was provided. "In the past I probably would have just said, 'OK, fine,' and I wouldn't read the pamphlet," Mr. Lee says. "Now I realize this is my body, and if I don't ask what I need to know, nobody's going to fill me in."
Erika Feller, his cardiologist and medical director of the heart-transplant unit at the hospital, says Mr. Lee was a possible candidate for a transplant at one point, "but due to his hard work and our hard work he's been able to avoid that and stay out of the hospital." She acknowledges that time constraints are an issue and physicians aren't always great at translating medical issues for patients, particularly when they have to manage complex regimens such as Mr. Lee's. The hospital administers self-tests to patients to make sure they understand things like their diagnosis and their medications.
Of course, patients may feel intimidated asking medical professionals tough questions, especially if the response is brusque or even chilly. And it's usually more effective to ask questions politely, rather than in a contentious way. "Bill isn't shy but he's not a pain in the neck. He asks great questions and he is always appropriate," says Jane Kapustin, the nurse practitioner who treats Mr. Lee's diabetes.
Tell Me Where It Hurts
Poll: Doctors and Patients Often Let Each Other Down
By Buzz McClain : Special to The Washington Post : Tuesday, February 6, 2007
Most patients think their doctors treat them respectfully, listen to them patiently and care about their emotional well-being. That's the finding of a recent poll of 39,000 patients and 335 primary care doctors. Still, the survey found plenty of complaints on both ends of the stethoscope.
Among patients' biggest grumbles, found the survey conducted by the nonprofit Consumer Reports National Research Center and published in the February issue of Consumer Reports: doctors' failure to divulge the cost of medications or office visits (cited by two-thirds of respondents); failure to mention medication side effects (cited by almost one-third); doctors who couldn't see them within a week (19 percent); and doctors who don't return tests results promptly (7 percent). For their part, doctors took umbrage with patients for not "following their prescribed treatment," waiting too long to make an appointment and being reluctant to discuss their symptoms.
Some of the survey findings appeared to contain ironies. For example, most patients said they "completely" follow the doctor's advice -- on filling prescriptions, taking medications on time and completing the course of meds. But most doctors -- 59 percent -- noted patients' noncompliance as their main complaint.
Failure to follow advice "is a reality, that's for sure," said Edward Hill, immediate past president of the American Medical Association and a family physician in But Hill admitted that "sometimes we in medicine don't communicate quite as well as we should." The survey confirms that miscommunication is rife on both sides.
A third of the doctors complained that many of their patients are not specific about their symptoms, which handicaps the doctor when\nit comes to treating them. The study suggests patients may be embarrassed when describing what ails them, so they withhold details that would assist the treatment. They may also neglect to mention details because they don't think they're important.
"I call those embarrassing medical topics the Five P's," said Vicki Rackner, a former Seattle surgeon and the founder of Medical Bridges, a company that encourages employers to have their workers take a more assertive role in health care: "peeing, pooping, paying, procreating and psychosomatizing -- physical pain brought on by emotional causes." She called poor communication "one of the basic barriers to quality medical care."
Patients who said they first chose their doctor on the\nbasis of friend or family recommendations were more likely to have a positive experience than those who chose the doctor because of his or her location or participation in a health plan in Tupelo, Miss. "It's a personality issue many times. I tell them to take the medication as prescribed, and as soon as they feel better they quit taking it, even for chronic diseases like high blood pressure and diabetes," for which treatment isn't effective unless medication is continued.
But Hill admitted that "sometimes we in medicine don't communicate quite as well as we should." The survey confirms that miscommunication is rife on both sides.
A third of the doctors complained that many of their patients are not specific about their symptoms, which handicaps the doctor when it comes to treating them. The study suggests patients may be embarrassed when describing what ails them, so they withhold details that would assist the treatment. They may also neglect to mention details because they don't think they're important.
"I call those embarrassing medical topics the Five P's," said Vicki Rackner, a former Seattle surgeon and the founder of Medical Bridges, a company that encourages employers to have their workers take a more assertive role in health care: "peeing, pooping, paying, procreating and psychosomatizing -- physical pain brought on by emotional causes." She called poor communication "one of the basic barriers to quality medical care."
Patients who said they first chose their doctor on the basis of friend or family recommendations were more likely to have a positive experience than those who chose the doctor because of his or her location or participation in a health plan.
"You add a link of trust," Rackner said, just as with a personal relationship.
"As seen on TV" may work to sell Ginsu knives but appears less dependable for medication. Nearly 80 percent of doctors reported being urged by patients to prescribe them medications they saw advertised in TV ads; 40 percent of the doctors said such advertising "was not in the public interest."
The survey confirmed many patients' reliance on the Internet for self-education. Forty percent of patients surveyed said they went to the Internet for information about their pain and possible cures. About the same share of doctors -- 41 percent -- said their patients were misinformed by what they read on the Web. "I keep a little card in my pocket of what I think are reputable Web sites they can go to," Hill said. "For instance, the National Institutes of Health Web site, or the CDC [Centers for Disease Control and Prevention] Web site or [official] specialists' Web sites."
On the subject of divulging the cost of health care, Rackner said doctors need to do more.
"When I was first starting out, I wondered what it cost to take out a gallbladder," she said. "One surgeon told me, 'You can't ask that question; it violates antitrust laws. We could be accused of price fixing.' There's a conspiracy of secrecy about cost. That's a big problem that's fortunately changing. Money might be the ultimate taboo [in health care], even more so than sex."
As for patient face time, more than half of the surveyed doctors said that had been shortened in the past five years, during which time they had had to expand their practices to meet their target income. And more than half also said they saw too many patients in one day to give effective treatment.
Consumer Reports acknowledged that the survey may not represent the views of the general population, since the respondents were composed of subscribers to the magazine. The physicians who were polled, however, came from a random sample drawn from a national list of doctors.
Only 9 percent of patient respondents cited limited face time with doctors as a major complaint. No survey question was asked about the wait time at the office. ·
Patients lie to doctors - and suffer for it
Fibbing about medicine or smoking courts disaster, doctors say
The Associated Press : Feb 16, 2007
There’s an open secret in medicine: Patients lie.
They lie about how much they smoke and whether they’re taking their medicine. They understate how much they drink and overstate how much they exercise. They feign symptoms to get appointments quicker and ask doctors to hide the truth from insurance companies.
“Doctors have a rule of thumb. Whatever the patient says they’re drinking, multiply it by three,” said Dr. Bruce Rowe, a family doctor in suburban Milwaukee. “If they say two drinks a day, assume they have six.”
Hippocrates, the father of medicine, is said to have warned his students in about 400 B.C. that patients often dissemble when they say they’ve taken their medicine. TV’s fictional Dr. Gregory House repeats the same message to his crack team: “Everybody lies.”
But lying can lead to expensive diagnostic procedures and unneeded referrals to specialists. It also can have disastrous results.
‘I could have ended up in a coma’
“I definitely learned my lesson. I could have ended up in a coma,” said Michael Levine, a 28-year-old financial adviser in Los Angeles who lied to a specialist he saw for a wrist injury. Misguided pride, he said, kept him from mentioning the Xanax he was taking for anxiety. He didn’t think the doctor needed to know.
“He wasn’t my regular doctor. He was treating my wrist,” Levine said.
The doctor prescribed the pain reliever Vicodin and Levine took it on top of Xanax. The next few days vanished in a cloud of grogginess. Levine slept through ringing phones and alarms and woke up exhausted. His wrist pain was easing, but he could barely function. Eventually, he stopped the Vicodin, returned to the doctor and, under questioning, confessed.
“The doctor said, ‘Why didn’t you tell me? I never would have prescribed you that,”’ said Levine, who now realizes how easily he could have overdosed and died. “For the future, I will always ’fess up.”
Why do patients lie? The examination room itself is an environment that discourages honesty, said Los Angeles psychiatrist Dr. Charles Sophy.
“You’re naked in a gown, and you have a guy standing there clothed with a coat on, and there’s all sorts of things in his pocket. And you’re sitting there, basically naked ... that makes it hard to come clean,” Sophy said. On top of that, the doctor may be rushed.
Researchers say patients often lie to save face. They want to be “good patients” in their doctors’ eyes. But that’s a misguided and risky practice. For example, a woman who doesn’t want to admit she smokes and then is prescribed birth control pills is at greater risk for blood clots.
Some researchers estimate more than half of patients tell their doctors they’re taking their medicine exactly as prescribed when they’re not. In reality, they don’t like the side effects, can’t afford the pills or didn’t understand the instructions.
Huge gap between patients' words and actions
A study by researchers at Johns Hopkins School of Medicine found a big gap between what patients said and what they did. Researchers looked at how patients with breathing problems used an inhaler equipped with a device that recorded the date and time of use and compared that with what the patients said.
Seventy-three percent of patients reported using the inhaler on average three times a day, but only 15 percent actually were using it that often. And 14 percent apparently deliberately emptied their inhalers before their appointments to make it look as if they were good patients.
Some doctors are seeking approaches that encourage more honesty. Dr. Zach Rosen, medical director of New York’s Montefiore Family Health Center, asks his patients a series of questions to determine whether they’re taking their medicine.
“I ask, ‘What medications are you taking?’ At first, I just want the names,” he said. “They say, ‘I’m taking X, Y or Z.’ Then I’ll say, ‘That’s great. How often are you taking that medication?’ ... Then I’ll say, ‘Are you experiencing any problem in taking your medications?’ ”
Asking several questions takes more time. But the approach elicits better, more honest responses than a single question, Rosen believes.
Doctors can avoid sounding judgmental
Doctors also should avoid phrases that sound judgmental, said Nate Rickles, an assistant professor of pharmacy at Northeastern University. There’s a big difference between “Why aren’t you taking the medication as prescribed?” and “A number of my patients don’t take their medication as prescribed, and they do it for a variety of reasons. What do you think might be going on with you?”
When alcoholics seek detox treatment from Dr. Akikur Mohammad, an addiction specialist at the University of Southern California School of Medicine, they must tell him exactly how much they’ve been drinking so he can give them the right dose of medication to treat withdrawal.
“I tell them, ‘You can lie to your friend, you can lie to your family members, but you came here for help, and your report will determine the treatment plan. If I undermedicate you, you may have seizures and die,”’ Mohammad said. Despite the warnings, patients still sometimes mislead him, he said.
Cyndi Smith, a 45-year-old Weight Watchers leader in suburban Chicago, admits her own lying past when it came to questions about her exercise and eating habits. She says she lied because she was fooling herself.
“You convince yourself of certain things, and it becomes true, when in reality it’s not,” she said. If her doctor had questioned her more thoroughly, she says she might have told the truth.
“I think doctors could be a little more point-blank,” she said. “And we need to be a little more honest.”
Things to discuss with your doctor
By Jane E. Brody : NY Times Article : December 25, 2007
My friend’s grandmother-in-law, at 94, has refused her son’s pleas to make a routine doctor visit. “‘Why should I go to the doctor?’” my friend recalled her exclaiming. “‘They don’t know anything anymore. You used to go to one doctor and he told you what was wrong and what to do about it. Now all the doctor does is draw vials of blood, order tests, and then tell you to go to another doctor.’”
Dear lady, you are so right. Medicine is not what it used to be. No longer do most people see just one doctor for whatever ails them. And no longer do most doctors have the luxury of spending half an hour or more with each patient, getting to know everything about their lives and families, as well as their bodies and minds. To meet rising costs, doctors are having to cram more and more patients into their already busy and demanding schedules, meaning that appointments are rarely more than 15 minutes apart.
Even those doctors who specialize in family or internal medicine usually limit the time they can spend with each patient. And if symptoms or test results suggest a problem, they must often refer patients to medical specialists and other providers for further diagnostic work and follow-up care.
It is easy to see this as a downside. But considering that Americans today are living longer and healthier than ever, there must be something good about how medicine is practiced today.
No longer can one doctor “know everything” (not that any doctor ever did). Nor do doctors have the training and expertise to perform the myriad tests and procedures that did not even exist half a century ago and that have helped to extend quality years of life for so many.
The doctor-patient relationship has changed, too. Doctors are less likely to be paternalistic and patronizing. Patients are more likely to be knowledgeable about symptoms and ailments, and the two are more likely to be partners in the patient’s care.
Still, insurance problems aside, many people like my friend’s grandmother-in-law are dissatisfied with the tenor of modern medical care. They feel rushed, poorly understood and more like a customer in a supermarket line than a well-cared-for patient.
With just the 7 to 15 minutes that doctors give each patient on most visits, the roots of dissatisfaction are easy to understand. The trick is establishing a good working relationship with a doctor and getting what is needed from these necessarily brief medical encounters.
Dr. Marisa C. Weiss, a breast cancer specialist at Lankenau Hospital in Wynnewood, Pa., who has ample experience as doctor and patient, has written “7 Minutes: How to Get the Most From Your Doctor Visit” (Random House Custom Media, 2007). Some of her advice follows.
Prepare for the Visit
You don’t want to waste doctors’ time on things you could and should have done at home. Arrive with a complete list of all the prescription and over-the-counter medications and supplements you take, including dosages and dosing schedules. Also have the names, mail and e-mail addresses and telephone numbers of the other doctors you see in case your doctor needs to contact them.
Write a list of your symptoms, their nature and frequency, and anything else you may have noticed about them, including what may relieve them.
Make a list of questions and concerns, and put them in order of priority so the most important ones are dealt with. If time is short, ask if you can set up a phone call or e-mail communication for those that remain. Bring paper and pen to write down what the doctor says or ask in advance if you may record the doctor’s comments to be sure you heard them correctly.
When dealing with a complex or serious medical question, take along a trusted relative or friend who can provide a second set of ears and record what the doctor says. That person may also think of other important concerns or questions to ask.
Dr. Weiss suggests that patients set the stage for a congenial visit by greeting the doctor with a smile and handshake (or hug, if appropriate). It’s also good to thank the doctor for seeing you, especially if you required a last-minute appointment.
Dr. Davis Liu, a family physician with the Permanente Medical Group in northern California who has written “Stay Healthy, Live Longer, Spend Wisely: Making Intelligent Choices in America’s Health Care System” (Stetho Publishing, 2008), has devised the acronym DATE to help patients derive the most from a doctor’s visit:
D FOR DIAGNOSIS : Write down the medical terms, not lay lingo.
A FOR ADDITIONAL TESTS : Does the doctor require or recommend other tests, X-rays or procedures? Tell the doctor you expect to be informed of the results, good or bad.
T FOR TREATMENT PLAN : Is a new medication or dosage being prescribed? Is surgery needed, and how urgently? Should you see a physical therapist or change your diet or exercise program?
E FOR FURTHER EXAMINATIONS OR EVALUATIONS : When should you return for a follow-up? What are the signs or symptoms to watch for and when should you call the doctor if the condition does or does not change?
Choosing Wisely
Perhaps most critical in gleaning the maximum from a medical visit is to find a doctor with whom you have a rapport. Dr. Weiss suggests that in addition to having good training and experience (at least a few years in the field) and admitting privileges at a good hospital, the doctor you choose should be thorough and supportive, should listen to you, answer your important questions and be open to input from you about your symptoms, treatment and options.
Your doctor should also appreciate that health problems can be confusing and frightening. The doctor should respond to your concerns with patience and kindness, repeating information if needed.
The office should be neat and comfortable, with adequate seating and reasonable waiting times. Still, always arrive prepared with something to occupy the time if the wait should run more than 15 or 20 minutes. Starting an appointment furious about the wait is not conducive to good care.
Most important to me is a doctor who is accessible, by phone or e-mail, and who responds to my concerns in a timely fashion. My family doctor’s answering machine gives his cellphone number for calls that cannot wait until he is in the office and recommends going to an emergency room for urgent or potentially life-threatening problems.
The Moral ....................or "The Doorknob Moment"
Perri Klass, MD : NEJM Article : May 29, 2008
I came home the other night clutching a scrap of paper towelwith a mother's cell-phone number scribbled on it. I had beenprecepting in the residents' pediatric primary care clinic,and an intern had presented a patient: a 20-month-old boy whohad been brought in by his mother because he was vomiting. He'd thrown up seven times since 2 that morning. No diarrhea, but he wasn't eating or drinking much. Still, he didn't look dehydrated, his mother said he'd had several wet diapers, and when the intern examined him, she found his diaper wet again.
The intern said he had a temperature of 100.8°F, and his ears looked infected. "Oh, great," I said, "so we know what'sgoing on."
She nodded but looked puzzled. "Why would an ear infection make him throw up?" she asked hesitantly.
When I answered honestly — some kids have touchy stomachs,and when they get sick with anything, they throw up —she looked disappointed; she was expecting pathophysiology.I drew myself up. Perhaps, I suggested, the ear infection was the sequela of a preexisting upper respiratory infection, and the child was producing a lot of mucus, which was dripping into the stomach and provoking the emesis. That went over a little better.
We went in to see the child. He was a sweet, clingy toddler,warily sheltering on his mother's shoulder, and he didn't look happy to see me. In fact, he started crying, which allowed me to verify that indeed he was not dehydrated, since his face was soon wet with tears. I examined him and agreed that his ears looked infected, the eardrums red on both sides and one of them bulging, not moving, hinting at infected fluid behind it. Yes, I said, good job, I agree, not dangerously dehydrated,I agree, ear infection. And let's remind the mother to encourage him to drink liquids and watch him carefully to make sure he doesn't get dehydrated. I smiled at the mother reassuringly and was relieved to see that she looked mature and competent, as she comforted and soothed her child with efficient, fond caresses.
But she looked anxious. She had something else she wanted to bring up, something she hadn't told the intern or mentioned to me when I was questioning her. "Doctor, let me ask you one more thing," she said. "It couldn't be that this was from falling down, could it? From falling down the stairs?"
And out came the story: the night before last, the child's brother had come up the stairs from the basement, and when he opened the door, the baby was right there, reaching for something,and he fell forward down the stairs. "I didn't see it," she said, "but I heard the thump-thump-thump when he fell. And his brother said he got hurt all over his head. But that couldn't be doing this, right?"
So we had a problem. One of the danger signs after head traumais vomiting. Here was a child who had fallen down a flight of stairs about a day and a half ago and a little more than 24hours later had begun throwing up repeatedly. And I was about to send him home with a diagnosis of acute otitis media.
I could see that I was disappointing the mother when I didn't just wave it away: don't be silly, what could one thing have to do with the other? She had offered up the falling-down-the-stairs story as a "doorknob moment" — the doctor essentially done, her hand (or the patient's) literally or figuratively on the doorknob, and the patient brings up a deliberately by-the-way question that turns the whole thing inside out. So I put her through the story in more detail, and it sounded pretty benign:just a few wooden steps, the whole flight maybe 3 feet high.The child hadn't been knocked out — a sign that the head trauma was relatively minor. The mother hadn't noticed any changes in how he was walking — though actually, he wasn't walking much; he was too clingy because he was feeling sick. Of course,he didn't have the language to say whether he felt pain. And even if he'd had language, he could have pointed at his head and told us it hurt and left us completely unsure whether it was his head or his ear.
Head trauma shouldn't give you even a low-grade fever, I told myself. The time course of the emesis wasn't textbook —it had started more than 24 hours after the fall, and it seemed to have resolved after a few hours. And the child looked good,didn't he? Well, he was clearly not dehydrated, which had loomedas the major danger when I walked into the room. But could Igo further than that? The words I would have used to describe him were clingy and cranky — words deliberately chosen,in part, because they don't sound medical alarms. Clingy and cranky, not playful or active; in fact, he was unwilling to walk. I asked his mother to put him down for a minute, but when she tried, he began to wail. He pulled up his legs into the fetal position, and goodbye to any hope of assessing his gaitto confirm that he looked neurologically normal. It's like that with toddlers. His mother smiled at me apologetically as she gathered him up again. "He's been like this," she said. "Not running around. Not playing so much."
We examined his head for bumps or bruises. We went over thes tory again. Finally, I sent the mother home with prescription sfor amoxicillin and acetaminophen and gave her some of the what-to-watch-for signs off the standard head-trauma information sheet: if hestarts vomiting again, if he seems less alert than usual, come to the emergency room. I wrote her phone number on a piece of paper towel, saying I'd call her later to see how he was doing.
And I worried. It would be silly to send him to the emergency room or radiology when the overwhelming odds were that he justhad an ear infection. The timing didn't really make sense fora head bleed, I told myself, and he looked like a kid with aviral syndrome.
Later that night, when I called, the mother was as reassuring as could be: "Oh, Doctor, he's doing great, he's playing, he's running around, he's really acting like himself. He even atea little bit." No more emesis, no mental-status changes, normal energy level restored.
But I've been thinking ever since about why I was so worried.It's not such an unusual story, after all, a toddler who took a fall. I've probably examined dozens of children who were brought in with that as the chief complaint: fell off the bed, tumbled out of the stroller, climbed up on the back of the couch and dived right over. I've felt their heads and looked in their eyes. Some I've sent to radiology, but not most. Some I've worried about for obvious reasons — concerns about child abuse and inflicted injury — and I've looked them over for bruises and unexplained marks. Some I've sent home with their parents holding head-trauma instruction sheets. And so far, nothing terrible has transpired with any of them.
So why did this boy get me so worried? Maybe precisely because the head trauma wasn't the reason for the visit. He was brought in for vomiting, and we didn't even think to ask about head trauma, because the vomiting seemed to be part of some viral syndrome, and we heard about it only in the elaborately casual doorknob question. Somehow that made it seem much more likely that the injury was severe, the story not what it appeared to be. I hadn't asked the right question, I had been pursuing the wrong story. I had almost missed this history altogether —didn't that make it more likely that I'd missed something serious? Wouldn't that turn out to be the "teaching point" if you were telling this story to medical students? Listen properly, and don't overtake the patient's narrative with your own, or you'll miss the most important information. And if I listened properly and rephrased the story as that of a 20-month-old with a history of emesis times seven and recent head trauma from a fall down the stairs, didn't that sound kind of serious?
Somehow, this encounter had tripped a wire with me — a wire braided, I realized, of history and literature. The literature was the Raymond Carver story "A Small, Good Thing," about a child who is hit by a car, who "got unsteadily to his feet. The boy wobbled a little. He looked dazed, but okay." He walks home and tells his mother, and then he becomes unconscious.The story traces his hospital course and describes the nightmare days and nights of his parents' vigil and the doctors' well-meaning but inept attempts to communicate with the parents and ultimately futile efforts to save the child. It's a hard story for a parent or a pediatrician to read.
There's a moment in it when the child has just been hospitalized, newly unconscious. The doctor has spoken to the parents in highly reassuring terms, and the boy's father decides to go home and bathe and change his clothes.
Howard drove home from the hospital. He took the wet, dark streetsvery fast, then caught himself and slowed down. Until now, his life had gone smoothly and to his satisfaction — college,marriage, another year of college for the advanced degree in business, a junior partnership in an investment firm. Fatherhood.He was happy and, so far, lucky — he knew that. . . .So far, he had kept away from any real harm, from those force she knew existed and that could cripple or bring down a man if the luck went bad, if things suddenly turned.
There it is, I thought, rereading the story. The understanding of how close we all are to being unlucky. The child who steps off a curb without looking. The story in the exam room that you don't listen to properly. The superficially well patient who is sicker than anyone thinks. So I had this story stuck in my mind, and the message I remembered best is one Carver probably never intended, one better suited to an ER instruction sheet: Even minor head trauma can be serious.
At the same time, I had a true story nagging at me, one that my own preceptor in primary care told when I was a pediatric resident. We had been talking about head injuries, and the preceptor had offered up a grim story: an adolescent who had hit his head in some freak accident but seemed fine and then died from an unsuspected bleed. The story had made a tremendous impression on me — because what sounded like a minor injury had killed someone, because it had happened in the practice of a very good doctor whom I regarded as my mentor, because he knew the family well and had been the one they called when their son died.
But I had heard that story at least 20 years earlier, when itwas already many years old, and I wondered how much of it I was inventing. So I tracked down my preceptor and called him and said, rather hesitantly, "I think there was a story you told, back in 1986 or 1987, and it's stayed with me all these years. Something about head trauma that sounded minor but wasn't?"
"I know exactly what you mean," he said. "It broke my heart."And he told the story again: "A 10-year-old boy sliding off the iced roofs of cars in a parking lot, he fell and struck his head. It was relatively minor, he was brought to an emergency room, was examined, had skull films. That was the standard then,before the days of readily available CTs. . . . I was off that weekend. The mom called me on Monday to say he had a bit of a headache but he was okay. Not vomiting, not great,but he was okay. I presumed he had a post-concussion headache.And then at 2 in the morning, I had a call from the mom that he'd stopped breathing and he'd been brought by ambulance to an emergency room some distance off and they were resuscitating him. So I jumped in the car at 2 a.m., and off I went to this place, in time to pronounce him dead." He paused. "He was a sweet boy, a good boy."
And then — once your preceptor, always your preceptor— he took me through the story of the child I had seen in clinic and agreed with the management. "But I thought about your story," I said. "I guess I always think about your story a little bit, and this time I really thought about it."
"The moral of the story is that minor head injuries are significant,"he said. "It still grieves me — I must have been full of sadness when I discussed it with the group. But over the course of my 30-plus years, this little boy who died is the only one."
"So what is the real moral?" I asked.
"Medicine is knowledge, judgment, experience, and luck," he said.
So I have been thinking about the voices that echo in your head when you make a clinical decision — even a relatively low-acuity decision about a child who doesn't seem critically ill. You can't let all the what-ifs terrorize you, or you would do a lumbar puncture on every young child with a high fever and do a CT scan for even the most minor bump on the head. So you just go on practicing, haunted by stories — stories you're a part of, stories that happen to people you love or know well or take care of, stories you hear from your teachers and colleagues, and the occasional well-told story that enters your brain and lives there . . . all those ghosts that hover at your shoulder or in the dark places of your mind.I had a peculiar sense of multiple levels of precepting —of me standing over the intern, and my preceptor standing over me, and of the ways that your medical education comes down to you partly from people you will never meet.
I'd like to think of it, in part, as a collective medical memory. And also as a way of honoring the patients who have suffered "bad outcomes" — and their physicians, too, the ones who are grieving still, who have told and retold these difficult stories. Bad things can be only a step away, and we need to absorb that knowledge and yet still do our job. It seems tome right and proper that even in everyday primary care, there should arise these unexpected, unpredictable moments when the collective memory catches at your sleeve, when the ghosts whisper to you to watch out, to think again, or at least to scribble a cell-phone number on a piece of paper towel and call later just to be sure that everything's truly okay.
Not Just Small Talk:
Quality-of-Life Questions at Medical Exams
By Jane E. Brody : NY Times : November 15, 2010
“How are you doing?”
“O.K.”
That kind of exchange, which takes place at all too many medical checkups, may sound harmless. But for patients with chronic health problems — arthritis, heart disease, cancer, irritable bowel syndrome, diabetes, attention deficit disorder — it suggests that the doctor is not doing his or her job. When physicians fail to ask probing questions about quality of life, addressing only the physical aspects of a chronic illness, they are likely to miss serious problems that can be remedied — among them depression, sleep disruption, loss of sexual desire and difficulty with everyday or pleasurable activities.
“More and more patients report that they do not feel heard,” Jackson Rainer, professor of psychology at Georgia Southern University, said in an interview. “Patients need to be assertive if their symptoms are not what are typically expected. Many, especially the elderly, have mental health issues that occur in concert with their physical problems, yet these are rarely addressed by their physicians.”
Of course, everyone knows that a doctor’s time these days is limited. But for medical care to be delivered efficiently and economically, assessing health-related quality of life is an essential element that can help doctors identify therapy that is counterproductive or ineffective or needs to be modified.
In a paper in The Mayo Clinic Proceedings, a team of experts led by Elizabeth A. Hahn, a medical sociologist at Northwestern University, called for a systematic quality-of-life assessment to detect physical and psychosocial problems that might otherwise be overlooked. The authors noted that the assessment could also be used to monitor the effects of disease and its treatment, determine when therapy needs to be changed and improve doctor-patient communication.
A quality-of-life assessment can be used to decide when to go to the next therapeutic step, or to alter treatment to minimize distressing side effects. For many chronic problems, the process can begin with a brief questionnaire that patients can complete while waiting to see the doctor, who can then quickly review the responses and focus on what is most important or troublesome.
The information gleaned can be used to redirect therapy to make it easier for patients to live with a disorder, or to encourage them to adhere better to prescribed treatments, or, as might occur with advanced cancer, to decide to forgo further disease-directed treatment.
For example, after a review of quality-of-life issues, a patient with early-stage prostate cancer may choose “watchful waiting” instead of surgery, to minimize the risk of sexual dysfunction and urinary incontinence. Or someone newly found to have Stage 4 lung cancer that is already widespread may choose only comfort care, rather than suffer the toxic effects of therapy during the remaining months of life.
Taking Stock
To take a more common example, among the nearly 50 million Americans with arthritis, “progression of the disease can sometimes be slow,” and “many patients are not aware of the impact their arthritis has had upon important dimensions of their lives,” Kevin Fontaine, a psychologist at Johns Hopkins School of Medicine, wrote on the university’s Arthritis Center Web site. “One patient may have given up playing tennis because of knee pain and not noticed, until the results of his health-related quality-of-life assessment were discussed, that he had also abandoned many activities — attending sporting events, mowing his lawn — that he had previously enjoyed.”
When I faced precisely that problem about five years ago, I made my own inventory of how arthritis had affected my life. I could no longer play tennis, ice-skate or walk three miles with my friends each morning. Any activity that involved a lot of standing, like cooking for company or going to a museum, was out. And it was agony to stand up again after sitting for a long while, as at a movie, concert or theater. So I opted for a double knee replacement, and despite the excruciating pain that accompanied the surgery, I’m now very glad I did.
Even if it is not possible for patients to resume all their activities, they can be helped to discover “a new normal,” Dr. Rainer said. As he wrote in Arthritis Self-Management: “Arthritis can become a bridge, rather than a barrier, a bridge to new and different strivings for a satisfying life. Satisfied people have a high tolerance for frustration and a clear perception of reality that allows them to both acknowledge and respect their limits.”
Among the questions that can be used to help patients adjust better to a chronic health problem and its treatment, he wrote, are these: “Given the nature of your illness, what makes you feel good now?” “What does ‘feeling good’ mean to you?” “What are your strong points? Your talents?”
Factors to consider include your capacity for productive activity, how well you manage symptoms, your response to pain and tolerance of depression and anxiety, and your social connections — “the people, places and events that are most important to you,” Dr. Rainer wrote.
Moreover, Dr. Fontaine wrote, identifying a disease’s effects on patients’ quality of life can result in treatments and self-management techniques that may enable them to reclaim their former lives. Arthritis patients, for example, might try to be more physically active and better control their weight. Or, as Dr. Rainer put it, “Quality of life depends on how well you can integrate new circumstances into your life.”
Adjusting to a New Normal
People’s responses to life’s challenges are largely a function of their innate characteristics, traits like resilience, irritability, optimism that define them and are consistent throughout life.
In other words, whether you see the glass as half-empty or half-full will affect how you adapt to a new normal. And a patient may be diametrically opposite to how a doctor would respond to a diagnosis and choice of treatment. What is most important to the patient may not even be on the doctor’s radar.
As Dr. Gordon H. Guyatt of McMaster University in Hamilton, Ontario, put it in an article in The Mayo Clinic Proceedings, “If the primary goal of therapy is to improve the way patients feel,” assessing quality of life when making clinical decisions is essential.
Dr. Rainer said: “These days patients have to be their own best advocates, well schooled on symptoms, disease states and treatment options, and use their physicians as colleagues. This can be quite a challenge for patients who still defer to their physicians. But it’s no longer in a patient’s best interests to say to the physician, ‘You know what’s best.’ ”
Quality-of-Life Questions at Medical Exams
By Jane E. Brody : NY Times : November 15, 2010
“How are you doing?”
“O.K.”
That kind of exchange, which takes place at all too many medical checkups, may sound harmless. But for patients with chronic health problems — arthritis, heart disease, cancer, irritable bowel syndrome, diabetes, attention deficit disorder — it suggests that the doctor is not doing his or her job. When physicians fail to ask probing questions about quality of life, addressing only the physical aspects of a chronic illness, they are likely to miss serious problems that can be remedied — among them depression, sleep disruption, loss of sexual desire and difficulty with everyday or pleasurable activities.
“More and more patients report that they do not feel heard,” Jackson Rainer, professor of psychology at Georgia Southern University, said in an interview. “Patients need to be assertive if their symptoms are not what are typically expected. Many, especially the elderly, have mental health issues that occur in concert with their physical problems, yet these are rarely addressed by their physicians.”
Of course, everyone knows that a doctor’s time these days is limited. But for medical care to be delivered efficiently and economically, assessing health-related quality of life is an essential element that can help doctors identify therapy that is counterproductive or ineffective or needs to be modified.
In a paper in The Mayo Clinic Proceedings, a team of experts led by Elizabeth A. Hahn, a medical sociologist at Northwestern University, called for a systematic quality-of-life assessment to detect physical and psychosocial problems that might otherwise be overlooked. The authors noted that the assessment could also be used to monitor the effects of disease and its treatment, determine when therapy needs to be changed and improve doctor-patient communication.
A quality-of-life assessment can be used to decide when to go to the next therapeutic step, or to alter treatment to minimize distressing side effects. For many chronic problems, the process can begin with a brief questionnaire that patients can complete while waiting to see the doctor, who can then quickly review the responses and focus on what is most important or troublesome.
The information gleaned can be used to redirect therapy to make it easier for patients to live with a disorder, or to encourage them to adhere better to prescribed treatments, or, as might occur with advanced cancer, to decide to forgo further disease-directed treatment.
For example, after a review of quality-of-life issues, a patient with early-stage prostate cancer may choose “watchful waiting” instead of surgery, to minimize the risk of sexual dysfunction and urinary incontinence. Or someone newly found to have Stage 4 lung cancer that is already widespread may choose only comfort care, rather than suffer the toxic effects of therapy during the remaining months of life.
Taking Stock
To take a more common example, among the nearly 50 million Americans with arthritis, “progression of the disease can sometimes be slow,” and “many patients are not aware of the impact their arthritis has had upon important dimensions of their lives,” Kevin Fontaine, a psychologist at Johns Hopkins School of Medicine, wrote on the university’s Arthritis Center Web site. “One patient may have given up playing tennis because of knee pain and not noticed, until the results of his health-related quality-of-life assessment were discussed, that he had also abandoned many activities — attending sporting events, mowing his lawn — that he had previously enjoyed.”
When I faced precisely that problem about five years ago, I made my own inventory of how arthritis had affected my life. I could no longer play tennis, ice-skate or walk three miles with my friends each morning. Any activity that involved a lot of standing, like cooking for company or going to a museum, was out. And it was agony to stand up again after sitting for a long while, as at a movie, concert or theater. So I opted for a double knee replacement, and despite the excruciating pain that accompanied the surgery, I’m now very glad I did.
Even if it is not possible for patients to resume all their activities, they can be helped to discover “a new normal,” Dr. Rainer said. As he wrote in Arthritis Self-Management: “Arthritis can become a bridge, rather than a barrier, a bridge to new and different strivings for a satisfying life. Satisfied people have a high tolerance for frustration and a clear perception of reality that allows them to both acknowledge and respect their limits.”
Among the questions that can be used to help patients adjust better to a chronic health problem and its treatment, he wrote, are these: “Given the nature of your illness, what makes you feel good now?” “What does ‘feeling good’ mean to you?” “What are your strong points? Your talents?”
Factors to consider include your capacity for productive activity, how well you manage symptoms, your response to pain and tolerance of depression and anxiety, and your social connections — “the people, places and events that are most important to you,” Dr. Rainer wrote.
Moreover, Dr. Fontaine wrote, identifying a disease’s effects on patients’ quality of life can result in treatments and self-management techniques that may enable them to reclaim their former lives. Arthritis patients, for example, might try to be more physically active and better control their weight. Or, as Dr. Rainer put it, “Quality of life depends on how well you can integrate new circumstances into your life.”
Adjusting to a New Normal
People’s responses to life’s challenges are largely a function of their innate characteristics, traits like resilience, irritability, optimism that define them and are consistent throughout life.
In other words, whether you see the glass as half-empty or half-full will affect how you adapt to a new normal. And a patient may be diametrically opposite to how a doctor would respond to a diagnosis and choice of treatment. What is most important to the patient may not even be on the doctor’s radar.
As Dr. Gordon H. Guyatt of McMaster University in Hamilton, Ontario, put it in an article in The Mayo Clinic Proceedings, “If the primary goal of therapy is to improve the way patients feel,” assessing quality of life when making clinical decisions is essential.
Dr. Rainer said: “These days patients have to be their own best advocates, well schooled on symptoms, disease states and treatment options, and use their physicians as colleagues. This can be quite a challenge for patients who still defer to their physicians. But it’s no longer in a patient’s best interests to say to the physician, ‘You know what’s best.’ ”
Getting Dad to Talk About It
By Karen Stabiner : NY Times : February 11, 2011
My widowed father-in-law didn’t tell anyone about his symptoms — not his doctor, and not his grown son, who found out only when a member of the extended family called to say my husband needed to fly across the country immediately to see his dad.
By that point, the kidney cancer that would have been easy to treat if detected early had passed the fail-safe point. My father-in-law was not the kind of guy who liked to depend on people, so he made sure he had to for only a very short time before he died.
He was an extreme example of a familiar dynamic, which Deborah Tannen, a professor of linguistics at Georgetown University, calls “the guy’s view.” Dr. Tannen, the author of seven books about how we communicate with one another, says that many older men consider keeping difficult information to themselves a badge of courage. In this view, it’s what men are supposed to do to keep from upsetting the womenfolk.
But that often leaves caregivers struggling to improve communication, particularly in the doctor’s office. Fortunately, there are things adult children can do for the many parents — men leading the pack, but some moms, too — who are reluctant to talk about what’s bothering them.
In a study of 12,000 Medicare recipients published in The Archives of Internal Medicine in 2008, Debra Roter, a professor of public health at Johns Hopkins University, and her colleagues found that elderly patients who were accompanied by someone reported greater satisfaction with their doctors’ visits than those who showed up in waiting rooms alone.
“Having a companion made those who were more ill or less educated on a par with people who were better off on those variables,” said Dr. Roter. An adult child accompanying a parent to a doctor’s appointment, she added, can help in very specific ways:
Take notes.
Remind the patient to ask questions or express concerns. “They don’t
do it for the patient,” said Dr. Roter, “but they remind the patient,
as in, ‘Remember, you were going to ask the doctor about that rash you
had.’ ”
Provide information the patient has forgotten, or clarify information for the doctor.
Act as a translator. “The companion explains something the doctor
said to the patient,” said Dr. Roter, “but it also goes the other way,
explaining something the patient has said to the doctor.”
But it seems that companionship is a bit like the little girl with
the curl in the middle of her forehead — when it’s good it’s good, and
when it’s bad, it just gets in the way. Adult children have to make sure
that helping doesn’t turn into taking over.
“If a father is quite old and younger people have taken him to the doctor, too often the doctor will ignore the patient and talk to the adult child, and that’s disempowering for the parent,” said Dr. Tannen.
She suggests having a father/child conversation in advance of a doctor’s appointment, so that a son or daughter can anticipate what dad will say and be prepared to draw him out if he doesn’t. Armed with this kind of advance information, a caregiver will know whether and when to speak up, stepping into the conversation only if absolutely necessary.
Dr. Tannen’s own father was often reluctant to tell his wife how he felt, which succeeded only in upsetting her. “My mother was offended,” said Dr. Tannen. “Her reaction was, ‘What am I, chopped liver?’ And he said he was raised to be protective of women. ‘If I tell her, she’ll worry, and it may turn out to be nothing.’ ”
But women and men — again, in general — both speak and listen differently, and in fact the silence only made Dr. Tannen’s mother more worried. “The idea that when you’re close to someone they’re supposed to tell you things that matter to them is much more common among women,” said Dr. Tannen. “With men, it’s the opposite. They swallow it.”
That was what my father-in-law ended up doing. My husband, deprived of the opportunity to help his father with a problem, instead helped him deal with its consequences. He showed up on his father’s Philadelphia doorstep with no agenda but to do whatever his father allowed him to do — which became more and more as the weeks went by. Eventually his father realized that it was possible to ask for and accept assistance without feeling like an obligation.
By Karen Stabiner : NY Times : February 11, 2011
My widowed father-in-law didn’t tell anyone about his symptoms — not his doctor, and not his grown son, who found out only when a member of the extended family called to say my husband needed to fly across the country immediately to see his dad.
By that point, the kidney cancer that would have been easy to treat if detected early had passed the fail-safe point. My father-in-law was not the kind of guy who liked to depend on people, so he made sure he had to for only a very short time before he died.
He was an extreme example of a familiar dynamic, which Deborah Tannen, a professor of linguistics at Georgetown University, calls “the guy’s view.” Dr. Tannen, the author of seven books about how we communicate with one another, says that many older men consider keeping difficult information to themselves a badge of courage. In this view, it’s what men are supposed to do to keep from upsetting the womenfolk.
But that often leaves caregivers struggling to improve communication, particularly in the doctor’s office. Fortunately, there are things adult children can do for the many parents — men leading the pack, but some moms, too — who are reluctant to talk about what’s bothering them.
In a study of 12,000 Medicare recipients published in The Archives of Internal Medicine in 2008, Debra Roter, a professor of public health at Johns Hopkins University, and her colleagues found that elderly patients who were accompanied by someone reported greater satisfaction with their doctors’ visits than those who showed up in waiting rooms alone.
“Having a companion made those who were more ill or less educated on a par with people who were better off on those variables,” said Dr. Roter. An adult child accompanying a parent to a doctor’s appointment, she added, can help in very specific ways:
“If a father is quite old and younger people have taken him to the doctor, too often the doctor will ignore the patient and talk to the adult child, and that’s disempowering for the parent,” said Dr. Tannen.
She suggests having a father/child conversation in advance of a doctor’s appointment, so that a son or daughter can anticipate what dad will say and be prepared to draw him out if he doesn’t. Armed with this kind of advance information, a caregiver will know whether and when to speak up, stepping into the conversation only if absolutely necessary.
Dr. Tannen’s own father was often reluctant to tell his wife how he felt, which succeeded only in upsetting her. “My mother was offended,” said Dr. Tannen. “Her reaction was, ‘What am I, chopped liver?’ And he said he was raised to be protective of women. ‘If I tell her, she’ll worry, and it may turn out to be nothing.’ ”
But women and men — again, in general — both speak and listen differently, and in fact the silence only made Dr. Tannen’s mother more worried. “The idea that when you’re close to someone they’re supposed to tell you things that matter to them is much more common among women,” said Dr. Tannen. “With men, it’s the opposite. They swallow it.”
That was what my father-in-law ended up doing. My husband, deprived of the opportunity to help his father with a problem, instead helped him deal with its consequences. He showed up on his father’s Philadelphia doorstep with no agenda but to do whatever his father allowed him to do — which became more and more as the weeks went by. Eventually his father realized that it was possible to ask for and accept assistance without feeling like an obligation.
If you can't tell your doctor.....
then you need to find one you can tell.
