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Difficult patients.... Part II
In some cases, said Children's National Medical Center physician Nathaniel Beers, president of the D.C. chapter of the American Academy of Pediatrics, patients who seem difficult may "just really be advocating for high-quality care" for themselves or a relative.
In Beers's view, difficult behavior typically has a cause, although it may be rooted in an earlier encounter with another doctor. "There's often some provocation that has occurred," he said.
One 52-year-old Washington policy analyst said her oncologist recently implied that she was difficult because she asked questions about his recommendations for treating her breast cancer.
"Are there difficult doctors who don't like to be questioned?" asked the woman, who requested anonymity to avoid alienating the oncologist, on whom she is dependent.
"It takes a huge amount of fortitude to do this when you're alone in a doctor's office" and are ill, she said. "His attitude is that I should just leave it to him."
Miksanek said he would not consider such a patient difficult. His own list includes those who blow off his recommendations; those who demand every new test, whether they need it or not; and patients who make "reverse house calls" and show up at his home unannounced at night or on weekends. Then there are those who complain that they are not getting better. "They say, 'I've been coming here for three visits and my knee still hurts, but I don't want to lose 50 pounds.' "
Regardless of the difficulties treating such patients, Miksanek said that the worst thing a doctor can do is to terminate the relationship by saying "there's nothing more I can do for you."
"That's like a nuclear bomb," he said, adding that in some cases patients may have nowhere else to turn. "My antidote to a lot of these difficult patients is simply time."
Other doctors practice preemption.
Maryland pediatrician Daniel Levy is among them. Levy said that a few weeks ago he received an emergency page on a Sunday afternoon from a mother of three who said that her youngest, a 2-year-old, had a fever and that the pain reliever was wearing off after four hours, not six, as the label indicated. The child was otherwise healthy and did not seem agitated or lethargic -- two danger signs -- and Levy knew that the mother had faced similar situations with her older children without a problem.
"Everyone in my practice knows that when they get an after-hours page [from certain people] it's not an emergency; the parents are decompensating," said Levy, who gave the mother the same simple instructions he had when her older children were ill. Later that evening, he called to see how things were going.
"I knew the kid was fine, but I knew that a strategic call to the mother would let me see how she was doing," he said.
Mayer, the scleroderma patient, said that in her experience, such demonstrations of concern were rare.
Living in the South, she said, she quickly learned to tone down what she calls her native Philadelphia feistiness.
For months after she first developed symptoms, she said, she was told she did not have scleroderma, although she was sure she did. One specialist told her to take a chemotherapy drug that had been found to be ineffective against the disease in randomized clinical trials; when she asked about this, he brusquely rebuffed her inquiry. Another specialist told her she was likely to become "very sick, very fast." A third spent less than 10 minutes with her before telling her that although she had flown hundreds of miles to see him, there was nothing he could do. "I have a waiting room full of patients," he said, visibly irked when she persisted in asking a question.
"All this expert advice left me feeling as if I should lie down and die," she wrote.
After much trial and error, and with the support of her husband, an infectious-disease specialist, she found a rheumatologist 200 miles from her North Carolina home, and a sympathetic family practitioner nearby who helped coordinate her care.
"I have found that those providers who saw me as a partner rather than a passive recipient of their knowledge and advice were the most supportive and helpful," she said. Mayer said she wrote the Health Affairs essay out of frustration and as a plea to physicians to listen to patients.
In the end, although Mayer derived strength from doing things her way, which may have prolonged her life, her disease won. She entered the Duke hospice in late September and died there on Oct. 11, her 11th wedding anniversary. A few days before her death she left the hospice briefly to spend time at home with her children, ages 7 and 9.
"She was just trying to live the best she could as long as she could," said her husband, William Stainbach. "It's more difficult if you have a rare disease, but she found doctors who would work with her."
Shortly before her death, Mayer said in an interview that she worried about the ordeal experienced by other patients, difficult or not.
"We speak English, have great insurance, money, tons of education and my husband has connections, and we couldn't get the system to work," she said. "I fear what happens to other people."
Copied from - www. washingtonpost.com/wp-dyn/content/article/2008/10/17/AR2008101702677.html?referrer%3Demailarticle&sub=new
In Beers's view, difficult behavior typically has a cause, although it may be rooted in an earlier encounter with another doctor. "There's often some provocation that has occurred," he said.
One 52-year-old Washington policy analyst said her oncologist recently implied that she was difficult because she asked questions about his recommendations for treating her breast cancer.
"Are there difficult doctors who don't like to be questioned?" asked the woman, who requested anonymity to avoid alienating the oncologist, on whom she is dependent.
"It takes a huge amount of fortitude to do this when you're alone in a doctor's office" and are ill, she said. "His attitude is that I should just leave it to him."
Miksanek said he would not consider such a patient difficult. His own list includes those who blow off his recommendations; those who demand every new test, whether they need it or not; and patients who make "reverse house calls" and show up at his home unannounced at night or on weekends. Then there are those who complain that they are not getting better. "They say, 'I've been coming here for three visits and my knee still hurts, but I don't want to lose 50 pounds.' "
Regardless of the difficulties treating such patients, Miksanek said that the worst thing a doctor can do is to terminate the relationship by saying "there's nothing more I can do for you."
"That's like a nuclear bomb," he said, adding that in some cases patients may have nowhere else to turn. "My antidote to a lot of these difficult patients is simply time."
Other doctors practice preemption.
Maryland pediatrician Daniel Levy is among them. Levy said that a few weeks ago he received an emergency page on a Sunday afternoon from a mother of three who said that her youngest, a 2-year-old, had a fever and that the pain reliever was wearing off after four hours, not six, as the label indicated. The child was otherwise healthy and did not seem agitated or lethargic -- two danger signs -- and Levy knew that the mother had faced similar situations with her older children without a problem.
"Everyone in my practice knows that when they get an after-hours page [from certain people] it's not an emergency; the parents are decompensating," said Levy, who gave the mother the same simple instructions he had when her older children were ill. Later that evening, he called to see how things were going.
"I knew the kid was fine, but I knew that a strategic call to the mother would let me see how she was doing," he said.
Mayer, the scleroderma patient, said that in her experience, such demonstrations of concern were rare.
Living in the South, she said, she quickly learned to tone down what she calls her native Philadelphia feistiness.
For months after she first developed symptoms, she said, she was told she did not have scleroderma, although she was sure she did. One specialist told her to take a chemotherapy drug that had been found to be ineffective against the disease in randomized clinical trials; when she asked about this, he brusquely rebuffed her inquiry. Another specialist told her she was likely to become "very sick, very fast." A third spent less than 10 minutes with her before telling her that although she had flown hundreds of miles to see him, there was nothing he could do. "I have a waiting room full of patients," he said, visibly irked when she persisted in asking a question.
"All this expert advice left me feeling as if I should lie down and die," she wrote.
After much trial and error, and with the support of her husband, an infectious-disease specialist, she found a rheumatologist 200 miles from her North Carolina home, and a sympathetic family practitioner nearby who helped coordinate her care.
"I have found that those providers who saw me as a partner rather than a passive recipient of their knowledge and advice were the most supportive and helpful," she said. Mayer said she wrote the Health Affairs essay out of frustration and as a plea to physicians to listen to patients.
In the end, although Mayer derived strength from doing things her way, which may have prolonged her life, her disease won. She entered the Duke hospice in late September and died there on Oct. 11, her 11th wedding anniversary. A few days before her death she left the hospice briefly to spend time at home with her children, ages 7 and 9.
"She was just trying to live the best she could as long as she could," said her husband, William Stainbach. "It's more difficult if you have a rare disease, but she found doctors who would work with her."
Shortly before her death, Mayer said in an interview that she worried about the ordeal experienced by other patients, difficult or not.
"We speak English, have great insurance, money, tons of education and my husband has connections, and we couldn't get the system to work," she said. "I fear what happens to other people."
Copied from - www. washingtonpost.com/wp-dyn/content/article/2008/10/17/AR2008101702677.html?referrer%3Demailarticle&sub=new
First, I love your new "Do".!!!
I wish that these things didn't happen but they do far more than most peoplke realize.
For me, with my doctors, I found that the more questions I asked and the more details I was able to give them, the more they seemed to listen to me and we actually have conversations now. Of course this wasn't always the case. it took me ten difficult years before I was able to put together a team that talk to each other regarding my care. I lost count of how many Doctors I had to Fire before I found Doctors that were willing to work together and also with me.
When I was first diagnosed my doctors didn't like me to ask questions, and I always felt like I was bothering them. I think this might have been because I didn't present them with what they called "a typical case of MS". I felt like I was at fault for making their lives so difficult. Over the years, I realized that there is No "Typical" case of MS.
Today my Doctors all tell me that the MS is on it's own course and they are just trying to keep up with it.
So just hang in there don't give up and don't be afraid to find a different Doctor if need be. It's your body and you have to take a active roll in your health care
Hugs to all{{{{~!~}}}}
I wish that these things didn't happen but they do far more than most peoplke realize.
For me, with my doctors, I found that the more questions I asked and the more details I was able to give them, the more they seemed to listen to me and we actually have conversations now. Of course this wasn't always the case. it took me ten difficult years before I was able to put together a team that talk to each other regarding my care. I lost count of how many Doctors I had to Fire before I found Doctors that were willing to work together and also with me.
When I was first diagnosed my doctors didn't like me to ask questions, and I always felt like I was bothering them. I think this might have been because I didn't present them with what they called "a typical case of MS". I felt like I was at fault for making their lives so difficult. Over the years, I realized that there is No "Typical" case of MS.
Today my Doctors all tell me that the MS is on it's own course and they are just trying to keep up with it.
So just hang in there don't give up and don't be afraid to find a different Doctor if need be. It's your body and you have to take a active roll in your health care
Hugs to all{{{{~!~}}}}
I also feel that by using the term "difficult patients" we are missing half the equation. As has been mentioned the article does expose the difficult doctor. In the end it is the difficult and nonfunctional doctor-patient relationship that we need to examine.
Something for us to take away here are those things that we can do to help smooth over these bad relationships.
How can we arm ourselves with knowledge, yet not slap our doctors with that knowledge from the very beginning?
How can we encourage our doctors to think past their prejudices with attacking them?
How can we overcome our own past bad experiences and not sabotage the relationship with our new doctors.
We have discussed these things before and have come up with some very good tactics for getting what we know we need without completely alienating the doctor whom we also need. Maybe someone can find the threads that discuss this. One was a discussion of a book by (???Jerome Gloopman??) "How Doctors Think." It listed three questions we can all ask to keep a doc "on target" and still thinking.
Quix
Something for us to take away here are those things that we can do to help smooth over these bad relationships.
How can we arm ourselves with knowledge, yet not slap our doctors with that knowledge from the very beginning?
How can we encourage our doctors to think past their prejudices with attacking them?
How can we overcome our own past bad experiences and not sabotage the relationship with our new doctors.
We have discussed these things before and have come up with some very good tactics for getting what we know we need without completely alienating the doctor whom we also need. Maybe someone can find the threads that discuss this. One was a discussion of a book by (???Jerome Gloopman??) "How Doctors Think." It listed three questions we can all ask to keep a doc "on target" and still thinking.
Quix
Very good article, very good subject for discussion.
I am what could be termed a "difficult patient", not because I'm non-compliant or demand unnecessary tests, but because I have multiple issues that make it difficult to pin down just what is wrong with me.
I have a great relationship with my PCP, but I went through a few before finding her. She schedules me for an "extended visit, multiple issues", so I get a 30 min. appt. She also runs late, because she really listens and trys to help her patients.
She is willing to listen to suggestions I have learned from googling; that's how I found an effective treatment for my Restless Legs Syndrome, when the usual drugs were making me too drowsy.
I prepare for my appointments, make a list of what I need to cover, put stars by the most important. When I've covered the starred issues, if she asks "is there anything else?" I'm ready!
We have our disagreements, but deal with them well. She thought I had a seizure and wanted to send me for an EEG, I wanted a brain MRI. We compromised; I had the EEG which showed nothing abnormal, so I then got my brain MRI.
As for neurologists, I've learned to read their ability to deal with me. #1, out the door. #2, worked with me, gave up, I left after 3rd visit. #3, (MS specialist), was clear that she was ready to dismiss me, but I had questions and a huge notebook full of test results and my Timeline all ready for her. The questions kept her from dismissing me, I think she's a good doctor and my questions pointed out that she might be missing something. When I was able to see her during a flare of symptoms, her interest in me and my condition seemed to grow by leaps and bounds.
I learned so much here on this forum, how to respect the egos of doctors and still be assertive and encourage them to look at the whole picture and try to figure out what is causing my neurological symptoms. My body complicates things by having bad knees, back, and shoulder issues, but I KNOW those issues, and they are not what makes me dizzy or lose my balance or so fatigued that simple things are difficult, etc.
I think there are difficult doctors that no amount of reasoning or finessing could encourage them to help patients they brand as difficult. I think that many doctors get burnt out, and should have refresher courses on how to relate to patients. Hmm, how about if they don't pass their classes, they have to go into research where they don't work with patients?
Maybe we could work on a empowered patient article to send to JAMA or somewhere.
Take care,
Kathy
I am what could be termed a "difficult patient", not because I'm non-compliant or demand unnecessary tests, but because I have multiple issues that make it difficult to pin down just what is wrong with me.
I have a great relationship with my PCP, but I went through a few before finding her. She schedules me for an "extended visit, multiple issues", so I get a 30 min. appt. She also runs late, because she really listens and trys to help her patients.
She is willing to listen to suggestions I have learned from googling; that's how I found an effective treatment for my Restless Legs Syndrome, when the usual drugs were making me too drowsy.
I prepare for my appointments, make a list of what I need to cover, put stars by the most important. When I've covered the starred issues, if she asks "is there anything else?" I'm ready!
We have our disagreements, but deal with them well. She thought I had a seizure and wanted to send me for an EEG, I wanted a brain MRI. We compromised; I had the EEG which showed nothing abnormal, so I then got my brain MRI.
As for neurologists, I've learned to read their ability to deal with me. #1, out the door. #2, worked with me, gave up, I left after 3rd visit. #3, (MS specialist), was clear that she was ready to dismiss me, but I had questions and a huge notebook full of test results and my Timeline all ready for her. The questions kept her from dismissing me, I think she's a good doctor and my questions pointed out that she might be missing something. When I was able to see her during a flare of symptoms, her interest in me and my condition seemed to grow by leaps and bounds.
I learned so much here on this forum, how to respect the egos of doctors and still be assertive and encourage them to look at the whole picture and try to figure out what is causing my neurological symptoms. My body complicates things by having bad knees, back, and shoulder issues, but I KNOW those issues, and they are not what makes me dizzy or lose my balance or so fatigued that simple things are difficult, etc.
I think there are difficult doctors that no amount of reasoning or finessing could encourage them to help patients they brand as difficult. I think that many doctors get burnt out, and should have refresher courses on how to relate to patients. Hmm, how about if they don't pass their classes, they have to go into research where they don't work with patients?
Maybe we could work on a empowered patient article to send to JAMA or somewhere.
Take care,
Kathy
I would like to think this article is more toward the patient perspective, and the need for doctors to listen and work with their patients, since the main person they wrote this article about died.
Re-educating doctors to accept that we, the patients, are more informed than ever, is not going to be easy to accomplish. Hopefully as we interact with our physcians, they will learn that we are wise consumers of medical care.
Like Wonko points out, they did focus on some of the problem patients, but the writer was perhaps trying to show us the doctors perspective as well. It would have been nice to have included more on how doctors can be changed ....
Be well everyone,
Lulu
Re-educating doctors to accept that we, the patients, are more informed than ever, is not going to be easy to accomplish. Hopefully as we interact with our physcians, they will learn that we are wise consumers of medical care.
Like Wonko points out, they did focus on some of the problem patients, but the writer was perhaps trying to show us the doctors perspective as well. It would have been nice to have included more on how doctors can be changed ....
Be well everyone,
Lulu
I think a key part of the article is the acknowledgement about doctors and their control issues. When we threaten their knowledge and authority it undermines their self-confidence and consequently as patients we get the short end of the stick because of their insecurities. The true "problem patient" doesn't appear much in this article - it is mainly about the physicians who can't relate to the informed patient who wants so much more in their medical care than "take two pills and call me in the morning." - Lulu
I agree - this is a great article. When we have negative experiences with one doctor we tend to carry that over to others. I've formed a very 'friend like' relationship with my pcp which is wonderful. He's even asked me if I had any ideas on things and how to treat them, because he knows I educate myself and do the research. Yet i'm not pushy with it. I produce the ideas in a way that isn't threatening, and i've had excellent results with it.
There are just some doctors though that are totally unapproachable and are very authoritarian. The idea that you can't even ask a question is ridiculous. I've learned that I need to seek a different doctor when I run into one of these roadblocks.
I guess the biggest thing is that it's a bit give and take - I wanted to go see a pain clinic, but my doctor wants me to switch neuros first, becuase he really thinks I need to find out what's going on and to do that we need someone without a preconcieved notion that he's trying to fit me into - like a square peg in a round hole.
There are just some doctors though that are totally unapproachable and are very authoritarian. The idea that you can't even ask a question is ridiculous. I've learned that I need to seek a different doctor when I run into one of these roadblocks.
I guess the biggest thing is that it's a bit give and take - I wanted to go see a pain clinic, but my doctor wants me to switch neuros first, becuase he really thinks I need to find out what's going on and to do that we need someone without a preconcieved notion that he's trying to fit me into - like a square peg in a round hole.
This is a great article. Thanks for posting it.
I'm now approaching my dr. appts like a business meeting. I prepare ahead a list of questions. I limit my self to one page only. (And I've increased the font size so I can read the list easier. I have one copy for me and one for my PCP). I also have added two boxes besides each issue, this appt and next appt.
It's hard to forge that relationship with a doctor. I do think one problem is the 15 minute or less visit. I think 30 minutes is ideal. Also, when I was well every appt was just a quick in and out. Now that I have many problems my doctors appts are more frequent and I have multiple specialists.
It's often said that doctors don't like patients that google everything. I can see their point. However, google is an educated medical consumers best friend. My new neuro did see the positive benefit of google when I explained that after the last visit I googled what he dx'ed me with. I had to go through two pages of results before I synthesized the information to see what he meant. And I confirmed for myself that he was right.
Our first appt though was a disaster. I left that appt not planning on returning. He could sense I was just wanting to get out of there. So he was surprised I suspect to see me actually keep the the 2nd appt this week. And we had a good dialogue. I believe we really will work together on my symptoms. He is the medical expert but I am the expert about MY body and MY symptoms.
What helped me though, was this time I asked my PCP (who I really like) for a recommendation. And my neurosurgeon seconded the high regard for the new neuro. So even though I cried for 4 hours straight after the appt I googled through my tears and learned he was right. I just kept saying - how can two doctors that I respect, respect this quack! Ok, it turns out he's not a quack he's a genius.
It's a tough journey now a days for both the patient and the doctor. It will be interesting to read others experiences.
I'm now approaching my dr. appts like a business meeting. I prepare ahead a list of questions. I limit my self to one page only. (And I've increased the font size so I can read the list easier. I have one copy for me and one for my PCP). I also have added two boxes besides each issue, this appt and next appt.
It's hard to forge that relationship with a doctor. I do think one problem is the 15 minute or less visit. I think 30 minutes is ideal. Also, when I was well every appt was just a quick in and out. Now that I have many problems my doctors appts are more frequent and I have multiple specialists.
It's often said that doctors don't like patients that google everything. I can see their point. However, google is an educated medical consumers best friend. My new neuro did see the positive benefit of google when I explained that after the last visit I googled what he dx'ed me with. I had to go through two pages of results before I synthesized the information to see what he meant. And I confirmed for myself that he was right.
Our first appt though was a disaster. I left that appt not planning on returning. He could sense I was just wanting to get out of there. So he was surprised I suspect to see me actually keep the the 2nd appt this week. And we had a good dialogue. I believe we really will work together on my symptoms. He is the medical expert but I am the expert about MY body and MY symptoms.
What helped me though, was this time I asked my PCP (who I really like) for a recommendation. And my neurosurgeon seconded the high regard for the new neuro. So even though I cried for 4 hours straight after the appt I googled through my tears and learned he was right. I just kept saying - how can two doctors that I respect, respect this quack! Ok, it turns out he's not a quack he's a genius.
It's a tough journey now a days for both the patient and the doctor. It will be interesting to read others experiences.
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