A few weeks ago I blogged that its really just A Bunch of Numbers on how doctors just give us numbers and that's all they are when we hear statistics about survival, prognosis, age or whatever from our doctors.
Now a doctor says the same thing in this article, A Doctor's Struggle with Numbers.
"Oncologists are notoriously bad at predicting survival, and none of us wants to be known as “the doctor who told me I would be dead by now,” the doctor who made a prediction of imminent demise, sending a family into a terrifying tailspin of goodbyes, only to be proven wrong and subsequently mocked for years to come. One of my patients, upon being told by another doctor that she had two months to live, held Christmas in April so she could spend one last holiday with her grandchildren. She survived to see two more Christmases.
At the same time, we need to be truthful and give guidance to people who want time to prepare, time to write wills and pay off debts, to say goodbyes and to leave instructions, to tie up the loose ends of a life now heavy with meaning.
We try to provide hope, but not false hope.
So we give ranges, starting with the best estimate of survival, because my patients have told me they shut down after they hear the worst estimate. We talk about setting goals, about maximizing quality of life, because we don’t have much leverage with quantity of life. We emphasize spending as much time as possible with family and friends, and as little time as possible with people wearing white coats. We tell them we’re not going to give up if they don’t give up.
But the truth is, we don’t know."
I always appreciate honesty from my doctors. If one of my doctors said to me, instead of giving me a range, something like 'statistics say you have a 10-20% chance of [fill in the blank], but my feeling is that you are on the high end of this due to your medical history'. I would be very appreciative of this little 'translation' or personal input from the doctor.
I can understand the doctor's point. They only have the numbers given to them but quoting statistics learned in medical school does nothing for me. Please add in a little bedside manner for me. Thanks.
Showing posts with label doctor questions. Show all posts
Showing posts with label doctor questions. Show all posts
Planning for my doctor appointment
Today I have to put in some deep thoughts on a plan for my doctor appointment on Friday with Dr. G the pain management specialist. After last week with Dr P, the rheumatologist who is leaving (without permission from me!), I need to get my questions ready for managing my fibro as well as the stupid back pain which causes no end of crankiness.
I have goals here:
The problem is Dr G doesn't want to change my pain meds around much these days because we are trying to get the RA under control. Dr P just increased my methotrexate (which I really need to learn to spell for I am in violation of my rule that you cannot have an ailment or a treatment you cannot spell and pronounce.) If two sets of meds get changed around, then you never really know what is working and what isn't (or which is causing which nasty side effect).
I was on Butrans 5mcg/hr pain patches but they weren't enough so Dr G increased my dosage to 10mcg/hr and then I had to go through pharmacy hell to find out my co-pay for those is $95/4 weeks which I am not sure I can afford. I am back on 5mcg/hr because I ran out of the 10s and those are a paltry $65/4 weeks. I hope there is something else which will cost less but not require needles and will relieve pain.
So that is one question. Then we can talk about fibro and back pain and neuropathy and all sorts of fun things. I have to write this all down so my chemo brain isn't required to remember anything important.
I have goals here:
- Get pain under control.
- See #1 above.
The problem is Dr G doesn't want to change my pain meds around much these days because we are trying to get the RA under control. Dr P just increased my methotrexate (which I really need to learn to spell for I am in violation of my rule that you cannot have an ailment or a treatment you cannot spell and pronounce.) If two sets of meds get changed around, then you never really know what is working and what isn't (or which is causing which nasty side effect).
I was on Butrans 5mcg/hr pain patches but they weren't enough so Dr G increased my dosage to 10mcg/hr and then I had to go through pharmacy hell to find out my co-pay for those is $95/4 weeks which I am not sure I can afford. I am back on 5mcg/hr because I ran out of the 10s and those are a paltry $65/4 weeks. I hope there is something else which will cost less but not require needles and will relieve pain.
So that is one question. Then we can talk about fibro and back pain and neuropathy and all sorts of fun things. I have to write this all down so my chemo brain isn't required to remember anything important.
Self Education
My week ends with a trip to my rheumatologist to discuss progress or lack of progress in treating my rheumatoid and getting it under control. I have had two other appointments with her. The first one was 'we really do not think you have RA but will figure it out and get it under control.' The second visit was 'even though I didn't think so, you do have RA and fibromyalgia so let's start treating it'.
Now it is time for the progress update and we can talk about medication allergies, disease progression, treatment lack of progress, fear of needles, pain levels, physical limitations, and all sorts of fun things that I am not sure I know that much about.
I do know some about fibromyalgia and some about RA. I do not expect to have to be able to distinguish between which pain is which - some of it is obvious, some not. But I do need to be able to understand what is disease progress and what is treatment progress. I need some education.
I used to always be good about studying ahead but now I will start cramming. Good thing there is a convenient snow storm which should keep me home tomorrow and give me the time to learn something.
Now it is time for the progress update and we can talk about medication allergies, disease progression, treatment lack of progress, fear of needles, pain levels, physical limitations, and all sorts of fun things that I am not sure I know that much about.
I do know some about fibromyalgia and some about RA. I do not expect to have to be able to distinguish between which pain is which - some of it is obvious, some not. But I do need to be able to understand what is disease progress and what is treatment progress. I need some education.
I used to always be good about studying ahead but now I will start cramming. Good thing there is a convenient snow storm which should keep me home tomorrow and give me the time to learn something.
Hobbling around made me forget
Sunday was a bad day for me - I helped at an event on Saturday night and was out for about three hours but evidently I stood up too much. Sunday I was in so much pain I would have preferred to spend the day taking it easy but I sucked it up, took a tramadol and met some friends for lunch. Monday wasn't much better. I made it out for a walk with a friend.
Tuesday by the time I left work, I was in a lot of pain but went to the gym and did about 2/3 of my newly shortened workouts. Also on Tuesday I talked to my rheumatologist and she put me on methatrexate for my RA. It will take a couple of months to start working but the hope is I am not allergic to it as I reacted to Prednisone and Plaquenil. I will take my first weekly dose this morning.
Then I will go to my six month follow up with my radiation oncologist. I completely forgot about that. I have not had time to stress about that visit because I have been side tracked by RA and Fibro. Its not to say cancer has taken a back seat in my medical life but that the pain levels from the other issues are preventing me from stressing about cancer as much.
Maybe its time my life was diverted from cancer-cancer-cancer-cancer to cancer-pain-RA-fibro. There is more to life than cancer. My doctor appointments are not just oncologists. Now I have added a rheumatologist to my two oncologists, endocrinologist, surgeon, and pain doctor for regular visits along with my PCP.
Now I just have to remember the questions I had for my oncologist this morning. Its always good to have questions.
Tuesday by the time I left work, I was in a lot of pain but went to the gym and did about 2/3 of my newly shortened workouts. Also on Tuesday I talked to my rheumatologist and she put me on methatrexate for my RA. It will take a couple of months to start working but the hope is I am not allergic to it as I reacted to Prednisone and Plaquenil. I will take my first weekly dose this morning.
Then I will go to my six month follow up with my radiation oncologist. I completely forgot about that. I have not had time to stress about that visit because I have been side tracked by RA and Fibro. Its not to say cancer has taken a back seat in my medical life but that the pain levels from the other issues are preventing me from stressing about cancer as much.
Maybe its time my life was diverted from cancer-cancer-cancer-cancer to cancer-pain-RA-fibro. There is more to life than cancer. My doctor appointments are not just oncologists. Now I have added a rheumatologist to my two oncologists, endocrinologist, surgeon, and pain doctor for regular visits along with my PCP.
Now I just have to remember the questions I had for my oncologist this morning. Its always good to have questions.
Communication, optimism, and honesty
A recent study at the Dana Farber in Boston (because we needed another study to keep the researchers busy) looked at late stage lung and colon cancer patients and their thoughts on being cured and on their doctor. Two very interesting points were raised:
Do patients rate their doctors as better communicators because they provide a more optimistic message? So if the information is more in line with what the patient wants to hear is the doctor considered to be a better communicator? But if the doctor is more honest, the patient considers them a worse communicator because they are being told things they don't want to acknowledge?
A sugar coated doctor appointment isn't really a good thing. I want the truth. I have even been known to pull together every brave little molecule in my body and ask my oncologist what my prognosis is. Sometimes the truth isn't pretty but I think its needed.
I know not everyone is the same as me in wanting to hear the truth and doctors do not necessarily know the patients will react to news. I think they assume have to gauge what they say based on what the patient says. I make sure I ask the direct questions so I get the direct answers in return.
I do not want to have a rosy picture of life if it isn't going to be that way. I can't digest and cope with bad news if its sugar coated. I have to adapt to reality and then learn how to make lemonade with my latest life lemons.
- "They found that 69 percent of patients with metastatic lung cancer and 81 percent of ¬patients with advanced colo-rectal cancer reported that their chemotherapy might be curative, despite the fact that the drugs were extremely unlikely to cure their cancer."
- Patients who thought their doctors were worse communicators were more likely to have a realistic view of the potential benefit of their treatment.
Do patients rate their doctors as better communicators because they provide a more optimistic message? So if the information is more in line with what the patient wants to hear is the doctor considered to be a better communicator? But if the doctor is more honest, the patient considers them a worse communicator because they are being told things they don't want to acknowledge?
A sugar coated doctor appointment isn't really a good thing. I want the truth. I have even been known to pull together every brave little molecule in my body and ask my oncologist what my prognosis is. Sometimes the truth isn't pretty but I think its needed.
I know not everyone is the same as me in wanting to hear the truth and doctors do not necessarily know the patients will react to news. I think they assume have to gauge what they say based on what the patient says. I make sure I ask the direct questions so I get the direct answers in return.
I do not want to have a rosy picture of life if it isn't going to be that way. I can't digest and cope with bad news if its sugar coated. I have to adapt to reality and then learn how to make lemonade with my latest life lemons.
Your doctor can fire you too.
Patients often talk about firing their doctor and moving on to a new one. Sometimes its bedside manner, perceived lack of compassion, or changing medical needs. I strongly believe that patients should have the ability to fire their doctor if they want. There is no reason why not.
As patients become more and more self educated, they become more outspoken and more demanding, questioning their doctors. There is nothing wrong with this but we need remember doctors are people too. They can fire their patients too. Recently on one of the billion cancer related message boards I am on, someone was writing about how their doctor 'fired' them. The patient questioned her doctor repeatedly on a changed medicine dose and finally the doctor's office told them to find another doctor.
Hmmmm.... Let's see. The doctor went to medical school and knows how to treat patients - or that is the premise when they graduate and get their medical license. They learn which doses are appropriate for patients. They probably have little reference charts too. They are doing their best to treat their patients.
If my doctor tells me what dose to take of a medication and I ask why, if they can provide a good explanation, I accept it. It does me no good to press the subject. I'm willing to give things a try and if it doesn't work out, I can go back for a change. If I wasted my time arguing with my doctors on every point, I wouldn't have any time left.
I believe that patients should ask their doctors questions about treatment and not hesitate in getting second opinions if needed. But we also have to rely on our doctor's advice and treatment plans and accept that they are giving their best advice. They probably consult with other doctors on difficult cases as well.
Patients need to keep in mind that doctors are people, in fact they are very busy people. If all their patients questioned everything, no one would ever get treated. We can ask but need to be polite about it, not argue the issue to death, and respect their advice. Or we run the risk of getting fired.
As patients become more and more self educated, they become more outspoken and more demanding, questioning their doctors. There is nothing wrong with this but we need remember doctors are people too. They can fire their patients too. Recently on one of the billion cancer related message boards I am on, someone was writing about how their doctor 'fired' them. The patient questioned her doctor repeatedly on a changed medicine dose and finally the doctor's office told them to find another doctor.
Hmmmm.... Let's see. The doctor went to medical school and knows how to treat patients - or that is the premise when they graduate and get their medical license. They learn which doses are appropriate for patients. They probably have little reference charts too. They are doing their best to treat their patients.
If my doctor tells me what dose to take of a medication and I ask why, if they can provide a good explanation, I accept it. It does me no good to press the subject. I'm willing to give things a try and if it doesn't work out, I can go back for a change. If I wasted my time arguing with my doctors on every point, I wouldn't have any time left.
I believe that patients should ask their doctors questions about treatment and not hesitate in getting second opinions if needed. But we also have to rely on our doctor's advice and treatment plans and accept that they are giving their best advice. They probably consult with other doctors on difficult cases as well.
Patients need to keep in mind that doctors are people, in fact they are very busy people. If all their patients questioned everything, no one would ever get treated. We can ask but need to be polite about it, not argue the issue to death, and respect their advice. Or we run the risk of getting fired.
Questioning
Back before cancer #2, I was the obedient patient and obeyed orders without questions, took my meds and came back for appointments as requested. I don't do that any more. I ask questions and want explanations for things. It turns out I am not alone.
A few weeks ago I got together with a bunch of friends who all had been through the same breast cancer support group with me five years ago. One of them is now dealing with another cancer diagnosis. We were out to dinner and talking about treatments and doctors and our opinions. We amazed ourselves at how outspoken we were. We were telling our doctors what we want for treatment, protocol, testing, and much more.
But we earned this. We have been through enough scans, tests, medical adventures, and other fun, we know what we are dealing with and want it on our terms.
A few weeks ago I got together with a bunch of friends who all had been through the same breast cancer support group with me five years ago. One of them is now dealing with another cancer diagnosis. We were out to dinner and talking about treatments and doctors and our opinions. We amazed ourselves at how outspoken we were. We were telling our doctors what we want for treatment, protocol, testing, and much more.
But we earned this. We have been through enough scans, tests, medical adventures, and other fun, we know what we are dealing with and want it on our terms.
Talking back to your doctor
I can do that. Ask anyone who knows me, I can talk back to just about anyone on anything. And tomorrow is my annual physical so I found this article about talking back to your doctor very a propos (how's that for a fancy word this early in the morning).
I also usually (try to) know when to keep my mouth shut but when it comes to my doctor I do like to make my opinion known. She does know prefer no surgeries, no prescriptions, and no medical 'adventures' unless really needed.
A few months back medical societies came out with all these recommendations on unnecessary tests and procedures - decisions which I applaud. However it turns out that notmuch has or is going to change:
'Another reason doctors I interviewed told me is that the medical associations' recommendations have no legal standing. These doctors said they can be sued for not screening properly if their patient has a heart attack or some other untoward event. And sheer inertia is also a powerful factor in preventing reform; the test is performed because "this is what we have been doing for years."'
This means it is up to the individual patient to speak up and question why tests and procedures are ordered. I know why I get an annual chest x-ray - there's a thingy that has been well watched in my lungs for more than 30 years. It gets an annual photograph. I also get annual blood tests for cholesterol, thyroid, and all that other stuff our blood tells us. If the doctor wants anything else, she needs to have a good reason.
So I will go armed with my list and expectations and be ready to talk back.
I also usually (try to) know when to keep my mouth shut but when it comes to my doctor I do like to make my opinion known. She does know prefer no surgeries, no prescriptions, and no medical 'adventures' unless really needed.
A few months back medical societies came out with all these recommendations on unnecessary tests and procedures - decisions which I applaud. However it turns out that notmuch has or is going to change:
'Another reason doctors I interviewed told me is that the medical associations' recommendations have no legal standing. These doctors said they can be sued for not screening properly if their patient has a heart attack or some other untoward event. And sheer inertia is also a powerful factor in preventing reform; the test is performed because "this is what we have been doing for years."'
This means it is up to the individual patient to speak up and question why tests and procedures are ordered. I know why I get an annual chest x-ray - there's a thingy that has been well watched in my lungs for more than 30 years. It gets an annual photograph. I also get annual blood tests for cholesterol, thyroid, and all that other stuff our blood tells us. If the doctor wants anything else, she needs to have a good reason.
So I will go armed with my list and expectations and be ready to talk back.
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