Trust

Most people you meet, you generally don't share lots of private information until you have gotten to know them. Your doctor is different. You go see a new doctor for whatever reason and then you start spilling your guts on the state of your gut and other body parts.

If you think about it they are a stranger. I sometimes have to scrape doctors off the floor when I start telling them about my issues and allergies - they all love the fact that I am allergic to benadryl. I have had them start laughing too - with me, not at me.

But it is all about trust. How much do you really trust a stranger?

I think we believe doctors are ethical and honest human beings, with the best interests of the patient in mind. Personally I believe people are honest and ethical for the most part and don't start to lose trust unless I feel betrayed.

I don't mind if my doctors talk about me together in order to figure out how to best treat me. But I would be really upset if my doctors were trying to scam me. You hear the horror stories. I have blogged about a few of them as well. Here's a story with some more but also some good advice:

1. Research your doctor. 
2. Make sure your doctor isn't practicing outside his/her field.
3. Be cautious of doctors who advertise too much.
4. Ask a nurse or other hospital support staff.  
5. Get a second opinion.

Be an educated patient, do your homework and most importantly pay attention to your gut (feelings).

Spiraling cancer costs

I find the costs of all medical care, particularly end of life care and cancer care, to be increasing exponentially. Researchers come up with new medications based on smaller and smaller groups of patients. Drug manufacturers charge more and more in an effort to 'recoup' their research costs.

Doctors understand this financial burden and are more and more beginning to take action and have discussions on this. I found this article very interesting and worth the read or the view (both in video and text).

One point that they made is that new drugs may help 20% of a population but if all are treated with the drug in an effort to reach the 20%, wouldn't it make more sense to figure out how to treat just the 20% instead of wasting the treatment essentially on patients who would not benefit and would suffer the side effects?

Another point is follow up PET scans for cancer patients. If these expensive tests are reduced, we can save millions. Or follow up for other post cancer patients, find ways to get the same quality of life at a lower overall cost.

In another article, ASCO members highlight the Top Five List Identifies Opportunities to Improve Quality and Value in Cancer Care. They make recommendations on reducing some testing and some treatments. I think we have a tendency with cancer to throw everything we can at it but are learning that more isn't always better.

So it looks like doctors are taking action on how to help reduce the costs. Now we need to get other parts of the medical care system to do the same.

Okay I learned a few things

I have had this stupid evil cold since Friday afternoon, June 28. It came to me courtesy of my husband. This is a normal event, one family member gets exposed to germs and brings them home to share with other family members.

My theory on colds has always been to take good care of myself and basically ignore them unless I become fairly sick. Rarely does a cold send me to bed for more than a couple of extra naps. I have never had a problem with this theory. Ignorance keeps the colds away.

This worked for decades.

Not any more.

In  the past 24 hours I have learned:
- when you start to feel sick, stop RA drugs
- when you start to feel sick, call your PCP, not after a week or 10 days as I normally would
- colds more easily turn into pneumonia when you have RA both due to the disease and due to the medication.

Today I am home in bed sick again/still whatever. If you are keeping count this is day 14. Normal colds evolve and slowly get better. Evil RA colds, stick around and get worse. My sore throat is gone but my cough is not and my ears are clogged.

I am on antibiotics that I started yesterday morning and if I don't feel better by Saturday I am supposed to go to the walk in clinic. Next Tuesday I see my new rheumatologist and will probably learn more about the common cold with rheumatoid.

The only good side to all this is that the scale seems to be going in the right direction even though I have been eating ice cream every day.

Some clarification here

I got some feedback yesterday that my blog about the patient who didn't get a needed scan in time now has weeks to live. I said the patient needed to do more and be proactive in their health care. Some one said that we can't blame the patient because we depend on our doctors.

What I see of the issues are the following:

The woman complained of severe headaches and pain down her arm. Her doctor told her it was arthritis and treated it as such. She also complained several other times to nurses and was told she didn't need scans. If the diagnosis didn't resolve the problem, more testing should have been done to get to the root of the problem. This is where the patient could have stepped up.

Also it sounded like she was dealing with nurses often - did they know the extent of her medical history?

And if this doctor wasn't doing anything to help her, she could have gone to another doctor which it did not sound like she did. I mean she did say she had bowel surgery which meant she was going to a  gastrointestinal doctor, who wouldn't have been as concerned about something not relating to digestion. What about a neurologist or some one like that?

I don't know all the details here because I am not that patient but it would seem to me in the modern medical world that this patient slipped through the cracks and her complaints were ignored. This is where the patient should have spoken up more.

Yes we depend on our doctors to tell us what is wrong with us and treat us. We depend on them and rely on them. Some times we put our head down and just slog on through things. But need to stick our head up occasionally and see if we are happy with how we are feeling or is ti time to take another tack.

What if your doctor sued back?

We all do it. We all complain and sometimes even compliment businesses and professionals we deal with. I always rate restaurants and attractions I go to (I'm going for my next badge on TripAdvisor).

Some people rate their doctors, dentists, and more. I haven't gotten that far. I do blog about my doctors from time to time but I usually keep a line of anonymity and privacy do not blast them using their name. I try not to be negative as a rule on other people.

This one man did blog about his unhappiness with his wife's doctor after she died from cancer. Then the doctor sued him for damage to her career in response. This isn't an isolated incident.

If a restaurant or hotel receives a bad review, they can go back and apologize below the review and proactively try to help the customer. Doctors can't do that. They are compromised by privacy laws and HIPAA restrictions.

I personally don't read reviews for doctors online. At my breast cancer diagnosis, I was and still am being treated at a local hospital where I am comfortable with the quality of care.

Everyone I knew was reviewing their doctors and medical facilities online and using those reviews to choose doctors and where to be treated. My doctors weren't listed so it didn't really help me. All it did was make me feel bad that no one had reviewed my doctors so how was I supposed to know if they were good or not.

Before I tried to look them up, I was happy with my care.

I have never reviewed my doctors either. I don't think reviews of medical providers do much good. There is too much emotion wrapped around  medical care. The man who blogged about his wife's doctor was upset his wife died, friends didn't visit, and regretted the surgery she had. It was an emotional time for him.

I admit to blogging about stupid neurotic co-workers, cranky doctors, idiot drivers, and many others. But I don't put their names in and it allows me to vent. I am not writing to blast others but to allow me to add my two cents.

As far as I am concerned its within my First Amendment Rights and I am not opening myself up to any lawsuits. And besides, I like my doctors and feel no need to review them now.

Why go to a cancer center?

So why go to a cancer center for your treatment? Why is it so important? Do you want someone to treat you who treats one case pf breast cancer a month or someone who treats dozens of cases each month?

There can be little bitty differences in tests, biopsies, side effects and a lot of other things that may not be significant to a doctor who sees them as being in the normal range but to a specialist as a group they may provide an indicator of something else.

This video actually does a really good job of explaining the importance of going to a specialist and a cancer center.

It is also true of going to specialists for a lot of different medical issues. It might even justify all the specialists I see - medical oncologist, radiation oncologist, breast surgeon, endocrinologist, rhematologist - that I see regularly in addition to my primary care and my therapists.

You can't talk the talk, if you haven't walked the walk.

While I greatly appreciate the efforts of doctors, researchers, nurses, clinicians, and other medical professionals, my feelings have always been that you can't talk the talk, if you haven't walked the walk. You will not 'get it'. Sorry.

A support group facilitator who has not had the ailment being supported, will never, no matter the training, years of leading the group, and any other efforts, will never 'get it'. I'm sorry.

One of the reasons I like my therapist so much is that not only has she had breast cancer, she also has a type of arthritis. She understands. My medical oncologist comes close to understanding as she has treated so many women with breast cancer and is a very caring woman, but she doesn't get it. My radiation oncologist, despite her many years of experience, does not 'get it'.

I have never had children so while I can relate to the problems parents have with their children, I don't really get it completely. I never will. I can live with that.

Dr Susan Love is an example. She is someone who is very well regarded in being an authority in the area of breast cancer, but she never had it. She she never completely 'got it'. In a quote in a recent article she affirmed this:

"While Dr. Love has always been a strong advocate for women undergoing cancer treatment, she says her disease and treatment has strengthened her understanding of what women with breast cancer and other types of cancer go through during treatments.

“There are little things like having numb toes or having less stamina to building muscles back up after a month of bed rest,” she said. “There is significant collateral damage from the treatment that is underestimated by the medical profession. There’s a sense of ‘You’re lucky to be alive, so why are you complaining?’ ”

Dr. Love says her experience has emboldened her in her quest to focus on the causes of disease rather than new drugs to treat it."

So don't let anyone talk the talk to you, if they haven't walked the walk. You should take their advice with a large grain of salt.

Approaching the cliff

I have my own personal cliff that I am facing. And it has nothing to do with finances. Money isn't everything as the old saw might say. My cliff involves my health, as always. I don't think of my health as a series of cliffs in anyway. It is a series of disasters, appointments, and procedures, where I might feel a pinch.

But on Monday I face the breast cancer treatment cliff. I will stop taking Femara. That means my breast cancer treatment will end and I will go on my merry little way.... WAIT, BACK UP.... Cancer treatment can't end. I need to have my hand held for the rest of my life with this cancer shit.

Deep breath. Well if I am not in treatment any more they can still hold my hand. Can't they? I have been in cancer treatment continuously since May 2007. I have had surgery, chemotherapy, radiation, Tamoxifen, and then Femara. Through this whole process there has always been another step to look forward to. But not any more. I'm done! Yippee, oh shit.

On Monday my oncologist and I will discuss this again. She already brought it up when I saw her last fall. I thought I would be ready, I enjoyed the advance notice. I thought I was running out of pills a few weeks ago and even got a refill of Femara so I had enough to get me to my next appointment. I haven't even opened that bottle yet.

I know we will talk about how Femara has done a number on my bones and I may need some additional treatment to get my bone density back up to where it is supposed to be.

I know I will also continue to meet with the surgeon annually for follow up mamograms, the radiation oncologist for annual follow ups, and my primary care. And my pain doctor, rheumatologist, and all those other doctors so I guess I will get some care that will include some hand holding I hope.

But now I am facing the Emerald City at the end of the Yellow Brick Road through Cancerland. (Can you tell we wanted The Wizard of Oz recently? So what's in the Emerald city - healthy bones, healthy me, etc? Or is there just a little man behind the curtain running the world in front of the cliff?

News flash: confusion among cancer patients

That's not really news. Nor is it the real title. This is the real one:

"Some 20 percent of women overwhelmed by cancer treatment options: study"

I doubt that number. I think its much higher. Like 100%.

And not just breast cancer patients but all cancer patients.

This article claims that 20% of breast cancer patients are overwhelmed by their options and mostly blame it on lack of education. I have a college degree and it was my second cancer and I was overwhelmed. My husband has a Master's degree and was overwhelmed by his options.

"And people who are overwhelmed tend to regret the choices they made." Hmmm... Maybe they felt they were rushed into a decision or couldn't understand the options and finally just did whatever their doctor made sound the easiest.

"The findings, which appeared in the Journal of General Internal Medicine, don't mean that women should not be fully informed about their treatment options, researchers said, but rather that doctors may need to find new strategies to communicate with patients, especially the less educated."

Skip the part about the less educated. I think the availability of information on the internet and other sources combined with their doctor's advice is a good combination. And its not the level or quality of  available information that's the problem. Its the lack of the doctor's support in making the choices.

No we don't want our doctors making our choices but we also need them to decipher the information - they went to medical school and here is an opportunity to use their knowledge to help the patient instead of just dumping it all on them.

Why don't they say things like:

"I recommend chemotherapy and the standard protocol is XYZ. This is the most common protocol for women with a similar diagnosis to you. The latest research supports this protocol. Most women do fairly well with it but these are the most significant short and long term side effects. Here is a little handout you can take home and read it. This is a systemic treatment which should kill off any cancer cells in your body.

Before surgery we recommend a lumpectomy instead of mastectomy because we think we can get clean margins (which means enough space around the tumor so we think we got it all.)

After chemo, we recommend radiation for seven weeks or so. This is a local treatment which will help kill off any cancerous cells in  your tumor's neighborhood. We recommend this protocol instead of mammosite because...

Finally, if you want to get more information on treatment options, I recommend these two or three websites."

What I want is a nice simple conversation with a doctor who lays out the information in an understandable fashion and welcomes a discussion on options. And who will explain the ups and downs of different options.

I don't need a medical lecture which feels like I wandered into medical school. I don't need someone to read a textbook to me. I don't need fear mongering to make me feel like I'm going to die. I can do that to myself 24/7.

I don't think this issue is limited to cancer patients. I think its fairly common. Doctor's should be required to share their secret decoder rings with patients.

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.

Conversations with my doctor

Today's topic with Wego Health Blog month is a choice between something about learning something or on a conversation with my doctor. Its too early in the day (and I'm too stressed) to think about learning something and I have many doctor appointments that I could write about.

There are two doctor conversations to write about. The first one happened in August 1981 when I was in post op after having my thyroid removed. I was dazed from all the sedation but the surgeon came in and sat down next to me and told me that I had thyroid cancer. That's all that I remember of the conversation but those words were forever etched in my memory.

The second conversation happened May 30, 2007 when my surgeon called after my biopsy to tell me that I had breast cancer. At that point I had been living in the 'la la land' of  '80% of all tumors are benign' and assumed it was a nothing as I had a previous benign tumor back in the 1980s. The doctor called me at home and I was sitting on our bed holding my husband's hand. The surgeon again was reassuring and answered a few questions and gave me the next steps of a lumpectomy with sentinel node biopsy followed by an axillary node dissection if needed. We had already discussed these options in his office.This conversation is no less etched in my mind.

What was the impact of these two conversations on my life? A medical roller coaster with no end.

But what doesn't kill you makes you stronger. As a result of the conversations my life changed irrevocably and I have come out stronger, ready to face these diagnoses and others more prepared. Now I know what to do with a new ailment - research, questions, education, treatment, and more. And I'm still here.

Do your doctor's talk about you?

Mine do. And I think its a good thing. When I was diagnosed with breast cancer the first thing they did was set up a day of appointments with the medical oncologist, radiation oncologist, surgeon and social worker where they all examined me and looked at my test results and then had a meeting and set up a treatment plan for me. I know there are other times where they have talked about me because they tell me. They email each other, they call each other. They confer. I like that. I think they talk about me and don't tell me.

Apparently the idea of coordinating care through collaboration is known to be cost saving and provide better patient care.I was reading this article on what they didn't tell us about health care reform at the debates and was particularly struck by topic 5 on how the Cleveland Clinic and the Mayo Clinic do things right:

"The candidates agreed during the debate that more needs to be done to control the cost of health care.
 
Obama praised the Cleveland Clinic as a model for new ways of controlling the cost of care. "They actually provide great care cheaper than average," he said. "And the reason they do is because they do some smart things."

One approach he highlighted was the collaborative approach of the clinic's doctors. Instead of each doctor ordering a different test, they meet and decide as a team how to approach the patient's problem. This prevents duplication. The team of doctors also provides preventive care...
 
One of the big differences between the Cleveland Clinic and other hospitals is that it and other multi-specialty clinics like the Mayo Clinic... employ their own doctors and can create these teams. In most traditional hospitals, doctors are independent private practitioners who are left to making their own choices.

Because Cleveland Clinic's doctors are paid fixed salaries, there is less incentive to do unnecessary tests or procedures compared to a doctor who works on a fee-for-service basis...

"Going to separate doctors with their own plans is expensive. These integrated group plans work well and the ongoing preventive care they provide -- working with doctors, nutritionists, nurses, nurse practitioners and the rest -- ultimately save on costs.""

Doctors who talk to each other share ideas and you end up with better treatment so what is there to lose? I am all for saving money and getting better care.

Doctor communication skills

Doctors need to focus on their bedside manner and also their communication skills. How hard is it to get hold of your doctor when you need to talk to them? This is important. I realize doctors are busy and they often call patients back after hours, long after dinner time.

A few weeks ago, I met with Dr P to discuss potential new ailments. I liked her and thought she was on the right track. I left all kinds of samples - urine, blood, xrays. Dr P said I should set up an appointment with her in 3 weeks that we could cancel it if everything came back negative. Then I would see her in six months and go from there. She said in the interim she would call me with test results.

A week after my appointment I called her office to find out about the 3 week follow up appointment. She is very busy so her secretary was trying to fit me in. Finally we left it that she would call me with the results and decide then if I needed to come in that soon. She was waiting to talk to the radiologist about my x-rays and hasn't been able to make contact with the radiologist.

Yesterday was yet another week so I called her office. Her secretary, who is very nice, said she would leave her another note. The secretary called back yesterday afternoon in the five minute interval when I was outside. She left a message that they were going to schedule an ultrasound and maybe an MRI as well even though the doctor hadn't made contact with the radiologist yet but with my test results that was the logical next step.

I said to myself 'what test results?' because I didn't have them yet. I called her back and said I had never gotten any test results. The secretary was surprised and gave me my results which are good and bad (meaning inconclusive) but the doctor still wants to talk to the bone radiologist...

The latest assurance I have is that they have scheduled an ultrasound for me in November which may or may not be cancelled and may or may not be followed up by an MRI. The doctor will call me probably Tuesday or Wednesday with results and a plan. I'm not holding my breath. She is a nice doctor and seemed very good but very hard to get on the phone!

A new kind of doctor

Doctor's used to be trained to be the super achievers with legendary ego's. They were the super heroes who rushed in and saved people's lives all by themselves. People looked to them as the one to save them.

 

Then things changed and medical care expanded explosively. Its no longer a doctor who treats you but a team of specialists. All doctors became specialists. Even your primary care physician is a specialist. And they probably have a team of nurses, nurse practitioners, office staff and more working for them as do all the other doctors on your team.

Each specialist needs to talk to the other one's on your team. They need to use checklists to make sure that every question is asked, every i is dotted and every t is crossed. All these different perspectives mean more information is uncovered which can lead to better care and fewer mistakes.

As patients who shuffle between PCPs, medical oncologists, pain management, radiation oncologists, psychologists, and more, we need to make sure they are talking to each other and your needs are being met. So you as the patient needs to join the team. Its all about you so it has to include you.

End of life medication

In Electionovember (this is not a political post), Massachusetts residents will have the opportunity to vote on End of Life Medication. There are several requirements to the law:

• Must be an MA resident
• Must have been given less than six months to life
• Must be capable of making and communicating medical decisions
• Must voluntarily make a wish to die and make an informed decision.

I will vote for this. First of all, I think it should be an option. If you are dying and in pain and there is no hope, why can't you say 'that's it' instead of lingering in pain for a few more weeks? If you disagree, you do not need to make the choice to do it.

The problem with these laws when they try to pass them, is people start saying 'well I would never do that' and people come out of the woodwork saying my neighbor's hair dresser's cousin's friend was given 3 months to live and 20 years later they are still here. Everyone has the right to their own beliefs and this is a law that would allow people to make a difficult decision if they wished.

What if you had something like Parkinson's or Alzheimer's which is irreversible and incurable and you knew you were destined to die over a period of months or years and you could make the decision while you were capable that you wanted to be prescribed end of life medication when you got down to the bitter end? If you know your lot in life is to die a slow and painful death, wouldn't you want a way to avoid the pain if you could? We do not know what is in our future and we could all end up in that circumstance. I think we should be allowed to have that choice if we choose to.

A 'code of silence'

Is there a medical code if silence? Apparently not as much now as there was in the past but it still exists. Dr Marty Makary wrote a book called 'Unaccountable: What Hospitals Won't Tell You and How Transparency Can Revolutionize Health Care'. At first he was told he would be hated for the book but now his colleagues praise him.

He describes three key problem areas:

• Dangerous doctors
• Out of date doctors - who don't keep up to date
• Profit hungry doctors and hospitals who aim for the bottom line instead of a healthy patient.

Here are two additional statistics:

• One in four hospitalized patients are harmed by medical by a medical error
• 20-30% of medical care is unnecessary.

This all makes you stop and think. Let's look at each one individually.

Dangerous doctors are scary. They probably cause a good portion of the medical errors as well. These are the doctors who operate on the wrong body part or order wrong medications. They are really scary. And there is a code of silence reinforced by malpractice fears,

Out of date doctors who do not keep up to date on new treatment protocols and procedures. This is akin to learning from a history teacher who stopped learning in 1960 - and missed the whole Cold War, Vietnam, and a million other changes. They know they old stuff but not the advances since. What they have missed could kill you.

Any hospital and doctor who is not there for the patient and focuses on the bottom line should be avoided. There are for profit hospitals out there and you will never catch me in one. I know a couple around here and they aren't for me. And I don't recall them being on the top of any patient care list either.

The last statistic is the scariest and it cannot be blamed completely on the doctors. Yes there are doctors who are using the CYA approach to order more tests or procedures (see malpractice above). But there are also patients and their families demand procedures and surgeries to 'solve' their problems. 

How can we help solve these problems:

• Select your doctors carefully. Ask for referrals and do research. Don't stay with them if you don't like them and how they treat you. They don't need to be your best friend but you have to believe in them and feel comfortable with how they treat you.
• Educate yourself. Become the most educated patient you can. Research your ailments, ask questions, be assertive (in a very nice way).

We also need to call for transparency in our care. Why are procedures or medications ordered? If hospitalized, how many nurses are there to care for you? Who is in charge of your care while an inpatient? Speak up!

We are responsible for our care. We need to speak up and help break any code of silence.

When medical standards change and they don't tell the patients

Back when I had thyroid cancer in 1981, I was followed by an endocrinologist for more than a decade. Then my endo retired and I switched to a general internal medicine doctor for a primary care doctor. Some where during that time, standards for follow up to thyroid cancer patients changed. Ultrasounds become the standard for following up on potential residual tissue or recurrence and were ordered by endocrinologist. I just went along my merry way with out an endocrinologist not knowing that I should have one.

In 2008 I went to the Thyroid Cancer Survivor's Conference in Boston and found out that I had clearly missed something and should have an endo. Then I started seeing an endo twice a year for blood work and regular ultrasounds and am back on the program.

I had felt somewhere I should have been told that the standards are changed and endocrinologists follow thyroid cancer patients for life. There is no real way patients have for learning about changing standards in care over time. We assume our doctors will tell us.

My previous primary care never was a good communicator and I have switched from her to a new doctor. She really was a communication failure and I rarely saw her, mostly her nurse practitioner, which is why she is no longer my PCP. If this change happened sometime after the early 1990s she should have told me at some point.

I have now learned to be more proactive about asking about changes in treatment. I think my new primary care also does a better job of telling me about changes in standards so I feel more comfortable about it. And I can always hop on to Dr. Google and see what he tells me so I can ask about them.

Doctor burnout

Another study (because we need more studies - keep those researchers on their toes) says that more and more doctors are subject to burn out. Doctors are working harder and harder, spending less time with patients, and being pressured by increasing requirements. Hence burnout begins.

I don't think doctors are alone in experiencing burnout. Most professions have a level of burnout.But when its doctors who are burnt out, patient care and their health may suffer.

Now its my turn to play doctor and help with their burn out. My prescription for doctors who are burnt out:

• Go on vacation and cut the ties to your office. Find someone else to cover your patients.Do not contact your office - everything will be waiting for you when you return.
• Forget your watch and let your phone battery go dead (this is what we did and it was very relaxing).  You will quickly lose all sense of time.
• Ignore all work related things, unless someone is bleeding in front of you do not admit you are a doctor.
• Do the things you enjoy but never have time for - whether hiking in the wilderness, bungee jumping, or sitting on a beach with a cocktail topped with a little umbrella, or better  yet a tropical flower.
• Spend time with the people you care about and never have time for. 
• Repeat annually.

Once you return from your vacation, give yourself a break every week where you can take a step back and do something you enjoy with the people you care about that is not related to work. If you don't know how to do this, maybe find a life coach to help  you learn to adjust or just ask your spouse, kids, or friends how do this. I am sure they will have plenty of advice. If you do not have a spouse, kids or friends, join a club that will take you on a weekly adventure - hiking club, dinner club, wine tasting club, etc. Get a pet that you can't easily kill by ignoring it during long working hours. Make plans to relax. That is key. If you dont plan down time into your busy life, it will never happen.

See I can prescribe things to doctors. They prescribe things to me all the time. I know all about stress. Tell someone they have cancer and watch their stress level rise. Its payback time.

Dealing with test results

We all have medical tests and adventures that provide little insights into our health. Gone are the days where we are at the doctor's mercy for our results. But now with changes in legislation, both current and future, patients will be able to directly access their results.

This is good and bad. Yes there is a bad side to it. Go read this article on it and the one below it. I am all for patients getting their test results promptly. But the problem is understanding and coping with them.
Its fine to get results promptly when they are what is expected. Normal blood counts, benign biopsies, and the like. But what about when they are vague or are not as expected? And how to decipher the doctor shorthand?

This is the balance that we need to decode. When I use the word 'we' I am referring to both the patients and the medical profession. The doctor can not be expected to be able to access and review all test results and get back to the patients promptly. They would end up being buried in paperwork.

However a system needs to be developed where speed of response is included and deciphering of results made available. Part of this is the patient's responsibility. Before a test, ask the doctor and the technician when and how the results will be made available. Make sure you understand what they are trying to find out and what the options are for good and bad results.

If its your standard annual blood tests, maybe you are comfortable with not asking many questions. Or you get sent for a blood test for a possible new condition - what does a negative result mean vs. a positive result? If you have the ailment what is next? If you don't have the ailment, well great they ruled that out so what is next?

As a cancer patient, you get all sorts of wonderful medical adventures with complicated results. We need to know what they mean but we are not waiting for our results. Our cancer diagnoses gives us a special pass for speedy results. But we still need to have our little plan of action for each one. \

Speed here is essential but channels of communication need to be there so that the information can be digested and processed.

Doctor bias and experience

At one time there was the adage that you shouldn't get sick in July because that is when the new residents come out of medical schools and everyone is on vacation so you are stuck with the newbies. I have had my share of newbies. They are pretty recognizable. But what if lack of experience is not the problem for the established doctors but they can unconsciously be biased in their decisions.

I had never thought of this one but it is pretty clear from this article it can be a real problem. Read down to the second half of the article to see these:

"Anchoring bias, which causes doctors to lock onto a diagnosis early and disregard new and conflicting information. For example, a patient may be diagnosed with a quickly fatal cancer, but then ends up trying various (ineffective) herbal remedies and lives for 30 more years. Instead of considering whether the initial diagnosis was incorrect, the patient — and maybe even the doctor — may falsely assume that the herbal remedies cured the cancer.

Availability bias, when clinicians tend to think that the patient they are treating today has the same condition as the patient they treated last week. Imagine your doctor saw a rare, life-threatening illness last week that presented with a common symptom, such as belly pain. Today, you're in the doctor's office for belly pain, and your doctor may be unjustifiably concerned that you too have that rare life-threatening disease just because she's still thinking about it.

Confirmation bias, which causes doctors to believe evidence when it supports their pre-conceived opinion, while ignoring evidence that contradicts it. For example, let's say your doctor is pretty certain that you have an infection and orders a test to confirm the suspicion. The test is negative for infection, but she treats you for it anyway because she doesn't believe the test results; meanwhile, she disregards clues that point to another, correct diagnosis.

Commission bias, when doctors err on the side of doing something — like ordering a prostate biopsy — as opposed to watchful waiting because it seems that doing something is better than a doing nothing."

So what can you as the patient do? Ask questions, make sure things make sense to you. If you feel your doctor is biased discuss their diagnosis - ask why they think you have that ailment and what needs to be done. Why should or shouldn't you have that procedure or test? Its your job to speak up and talk to your doctor.

If you put this into context, we can all say we have had the same kind of bias in our decisions on a daily basis. But when its our health that is affected it can be a matter of life and death.