Be An Empowered Patient

Long Distance Caregiving

2009-09-23T17:15:00.003-05:00

Caregiving is often times a long distance task. What do you do when you have a parent or close family member who lives miles away that become ill and need your assistance. How does one manage the daily demands, small and large of another persons health care crisis?

No matter the distance, you can be a good caregiver and manage the stress that accompanies it. Here are some tips I adapted from a NIA booklet called So Far Away: Twenty Questions for Long Distance Caregivers:

1. Seek out help from people in the community: the next door neighbor, an old friend, the doctor. Call them and tell them what is going on and make sure they know how to reach you.

2. If there is already an on-site caregiver, identify options to help them if a crisis occurs. Making prior arrangements can make things easier when a crisis does occur.

3. Get a directory of resources and services from a local library or social service provider, and check for updates on these resources. This helps everyone know what is available and you can begin plugging into networks.

4. Pull together a list of the persons prescriptions and over-the-counter medicines, including doses and schedules. This is essential in emergencies and keep the list updated regularly.

5. Discuss and advance directive that states your loved-ones wishes regarding health-care treatment preferences. If he or she does not have one, talk about getting one set-up. Make sure you keep a copy and you know where the original is kept. You should also provide a copy to the physician.

These are a few tips that should help you manage the storm or long distance caregiving. Be gentle and forgiving with yourself and always remember the ultimate goal is to be helpful to the person you love.

If you have tips you would like to share please feel free to leave those in the comments or email me directly.

NY Times Article: Bridging Cultural Gap

2009-07-17T10:44:00.001-05:00

I enjoyed reading this article published in the New York Times regarding how culture can affect health disparities, communication and interactions in the doctor-patient relationship, the illness experience and health care outcomes. This is a must read for health care professionals and advocates alike.

http://www.nytimes.com/2009/07/16/health/16chen.html?hpw

Google Syndrome - Patient's Beware

2009-06-03T13:18:00.004-05:00

With so much information at our fingertips these days with the internet, even a well educated and self empowered patient can get caught up in what I call "Google syndrome". Google syndrome can be summed up by this defnition "a well intentioned effort to educate one self regarding health problems, prognosis, symptoms and potential outcomes through the search engine Google to the point where everything you read you believe and take to heart as being the truth because you found the information through Google".

Okay, I made up that definition and the term Google syndrome, but I think it illustrates a point I am trying to make. Not everything you read in the press, magazines, or even on the internet can be taken as being the God's honest truth about anything. That is why many organizations such as the Oklahoma Brain Tumor Foundation, American Cancer Society and other health advocacy organizations will typically provide you a list of suggested websites you can visit to find good, reliable information regarding your health.

Please don't listen to just any Tom, Dick or Harry regarding your health. Be selective and use only credible sites that are known to provide reliable and accurate information. There are many good sites avialable for you to use and there are many sites that aren't. You must be selective in what you allow yourself to read and who you allow to influence your health care decisions.

Lesson 3: Go with your Gut!

2009-03-11T14:43:00.002-05:00

We all have that small still inner voice that speaks to us when things are wrong. We hear it and feel it but we don't always listen to it. Sometimes we put it off as we are imagining things, worrying or being a hypochondriac. The fact is that voice is our body and spirits way of warning us and all we have to do is listen. You can call it mothers intuition or whatever you want but we have all experienced it at one time or another and didn't listen to it and thought later "I should have gone with my gut feeling".

When my son Cade was diagnosed with a brain tumor he was only 12 weeks old, fortunately we had 9 good months with Cade before the tumor began to spread. It was right before Cade's first birthday and his tumor had been stable for 9 months. We had the monthly MRI performed. I always required the doctor to show me the MRI scans and explain them to me. So I had seen the previous scans and knew very well what the tumor had looked like to this point. The MRI report said that the tumor was still stable and had not changed. But when you looked at the tumor on the MRI film it looked different than it had previously. Previous MRI's the tumor had been kinda fuzzy around the edges and an oblong shape. But this time the tumor was clearly defined around the edges and perfectly round. It looked like someone had inserted a green pea into his brain it was so perfectly round and defined. I questioned the doctor about the difference in appearance and how could he say the tumor had not changed when clearly it had changed. The answer I received was the size of the tumor had not changed it had not gotten any larger. I still questioned the doctor and we went back and forth for 2 weeks until finally they convinced me that nothing was wrong and not to worry. Two weeks later my son Cade began having some symptoms and another MRI was performed but this time the tumor had tripled in size and spread down his spine.

Now my gut/spirit had told me that something was not right with that scan. I am not a radiologist or a doctor but I knew something was wrong. And had I listened to my gut and required the doctors to explore this further with different and more advanced diagnostic testing maybe we could have identified the changes in cell structure within the tumor and maybe we could have prevented it from spreading. MAYBE, MAYBE, MAYBE, who knows?

The lesson I learned from this was to always listen to my gut instincts, my spirit person, my mother's intuition. Who knows your child better than you? Who knows your body better than you? Who knows your husband or wife better than you? The answer is no one knows you better than you, and that is something years of medical training and experience cannot give your doctor.

Lesson 2: Communicate Better with Your Doctor

2009-02-25T10:29:00.004-06:00

At the Oklahoma Brain Tumor Foundation I spend quite a bit of time with our patients and caregivers addressing problems they have talking with their doctors. Especially when dealing with a brain tumor you have vocabulary barriers that sometimes make it difficult to understand what your doctor is telling you. Sometimes your physician may talk over your head without realizing it. However, there are things you can do to improve your relationship with your doctor and medical staff that will help them communicate with you more effectively. The following are some tips:

If you have several health concerns to discuss, let the receptionist know ahead of time when booking the appointment so they can allow more time in the doctor's schedule for you.
Be sure to tell your doctor about any current and past health care issues or concerns. It's important to share any information you can, even if you're embarrassed.
Create a “health journal” for yourself on paper or in a notebook, and bring it to your appointments. Keep track of problems you are having, the time of day they occur, did you eat before and what did you eat, etc. This will help your doctor when making a diagnosis.
Bring any medicines you are taking with you or create a list of all your medicines. Include information about when and how often you take the medicine and the strength. If you are experiencing side effects from your medicine(s), especially if it makes you feel sick or if you think you may be allergic to it. Be sure to include any vitamins or supplements you take.
If you are being seen for a life threatening illness it is always recommended that you never attend an appointment alone. You should always take a family member or friend along with you.
Take notes at your appointment or have your family member/friend take notes for you.
If you have to go alone to an appointment, take a tape recorder to record the conversation with your doctor so you can listen to it as many times as necessary for instructions and information.
If you are having problems understanding your doctor, let them know that you need further clarification. Tell them you don't understand what they are talking about.
Never ever leave an appointment feeling lost and not understanding what was said and what the next steps are in your health care.

Understanding the Patient - Lesson 1 - Be there

2008-12-10T11:03:00.009-06:00

If you are a friend to someone who has cancer it is your job to help them have a better chance of succeeding in the fight against their disease. In order to do this you have to understand, as much as you possibly can, what they are going through in order to help them. This is going to be the first in a series of lesson blogs regarding Understanding the Patient.

Lesson 1 - Be There!

One common complaint I hear from patients and caregivers is that their friends have abandoned them. They don't call or come by and they just never hear from them at all. Don't be one of these type of friends. Be there!

As much as it may make you feel uncomfortable, and you don't know what to say or how to say it you must be there. You may not like the reality that slaps you in the face but deal with it and be there for your friend. Trust me if you don't you will feel guilt for the rest of your life over it.

You are not expected to have some words of wisdom that will miraculously fix everything or make them feel better about the situation. You are only expected to be emotionally and physically available for your friend. Just be there...tell them you love them, you are scared too, you don't know what to say, is there anything I can do to help you in anyway....be there to hold their hand, lend a shoulder to cry on, take food, go grocery shopping and pray with them.

Just simply be there!

HOPE FLOATS, Again!

2008-11-07T16:52:00.003-06:00

We are definitely in a time of change. I have a new found sense of hope for our future, our children's future. I feel like for the first time I can exhale....breathe. Hope is not sinking into a pit of despair any longer....we have been thrown a life vest and HOPE FLOATS!!!! Maybe I am thinking a little to naively, but I really feel as though we have definitely taken a step in the right direction for cancer patients, health care...all of the above.I am working on developing a new Patient's Bill of Rights to send to our new President Barack Obama. I would like your input, comments, thoughts, and suggestions. Please get involved and let's help HOPE FLOAT! Let's give our new President the tools he needs to make sure the health care crisis is rectified, that patient centered care is a priority, a right and no longer a privilege for the financially wealthy.

Send your thoughts and let's get started! YES WE CAN!!!

I'm Afraid to Ask for a Second Opinion

2008-10-24T13:46:00.003-05:00

You wouldn't believe how many times I hear my patients say they are afraid to tell their doctor they want a second opinion for fear of making them mad. Really, quite frankly I always have the same response...they will get over it. They can get glad in the same pants they got mad....that is something my Grandma always used to say. But really it is the truth, they will get over it.

Why doctors get mad about this is really far beyond me, maybe it is just above my pay grade to understand. But it really makes no sense whatsoever. You need to make sure that you are making the best decision for you and your loved one. How can you be certain you are doing that when you haven't gotten even a second opinion? I have always said I want a consensus of opinion regarding which direction I should go, which treatment I should receive, whether I should have surgery or not. I want a bunch of specialists saying this is what I believe you should do....period.

Unfortunately, many times patients do not have health insurance and your options for second opinons are fairly limited or nonexistant. There are places you can go to get a second opinon depending on your situation. For example, if you have a brain tumor and you have no health insurance you can be seen at the National Cancer Institute in Maryland and they will give you their opinion for free. And, if you qualify for a study they are sponsoring you can receive treatment, surgery, etc for free.

Doctors cannot know about every latest research advance, treatment option or new diagnostic procedure available. It is literally impossible for them to keep up on everything. But, if you are talking to several different physicians for opinions they will have a broader knowledge base than simply one physician by themselves. Statistically it just increase your chances.

I promise you that doctors get second opinions when it comes to their own health care. And, so should you!!!

I am not a pin cushion!

2008-10-06T16:57:00.009-05:00

I apologize for not posting for nearly a month. My father has been in the hospital and my time has been very limited. Daddy has had six heart attacks in the last six months and two in the past two (2) weeks. My father is a retired dairy farmer and is 83 years old. He is a man's man, tough and strong. His arms are weathered and worn to say the least. He also has had severe vein damage due to all the IVs and medical procedures, medicine, etc. Lately we have been dealing with the problem of getting an IV or drawing blood from him.

It is the hardest thing to watch someone you love who is already in pain and not feeling well be used as a pin cushion. They have stuck and prodded daddy for blood over 50 times in the last month. And, they always have problems.

I ran into this same problem when my son Cade was diagnosed with brain cancer at the age of 12 weeks. He was a fat healthy looking little boy, full of life and laughter. But after the diagnosis we had to take Cade for monthly MRI's. The very first time we went they stuck Cade 13 times in his fat little arms before they finally got a vein on him. I swore at that time I would never let him go through that unnecessary pain again. I called the Radiologist and requested that he give Cade something to knock him out before the IV. His response was that is not standard procedure. But you know me....I am persistent and unrelenting when it comes to the people I love. I am fiercely protective. So, I then called the hospital administrator and told him what had happened. He said "well what do you want me to do about it?" and I said I want an anesthesiologist to put the IV in and for Cade to be given a sedative. The hospital administrator just said okay, I will have someone contact you with the arrangement information. From that day forward we went to the hospital at 5:00 a.m. to have the anesthesiologist put the IV in and you know what, he got it every time on the first try.

Most recently with my father I have insisted that a specially skilled nurse put the IVs in and do the drawing of blood. This has saved daddy numerous unnecessary pokes and pain. I have also insisted that if the blood is not absolutely necessary that we do not draw it. I have found that sometimes doctors will request blood without necessarily needing it at that time. Lack of Coordination between doctors often results in blood being drawn a couple times one after the other because one doctor didn't know the other was requesting blood.

You are probably asking what you can do about it yourself when you encounter this situation. My answer is simply this.....expect the best and don't settle for less. There are always alternatives to situations you just have to ask and demand that those alternatives be explored. Insist that the person drawing blood is specially trained or licensed in that area. Try neonatal nurses, Medi-flight nurses and sometimes even anesthesiologists can be used. You have to demand that they do whatever is necessary to make these procedures as little traumatic as possible.

Most hospitals also have new devices that can locate veins and arteries by ultrasound that can help them locate good veins more efficiently.

Do you have all your cards on the table?

2008-09-02T17:00:00.002-05:00

In my work I believe the most important job I have is to help patients and caregivers make sure they have all their cards on the table. What do I mean you ask.....

Do you know what all your options are and have you had a second opinion?

The very most important thing you can do for yourself or your loved one is make sure you have had a second opinion. As patients we sometimes are afraid to tell our doctor we want a second opinion for fear of them getting made or offended. HOGWASH!! (that's okie talk for BULL) if they get mad or get offended, move on! Find another doctor. There is no reason they should get offended or mad....trust me they are getting second opinions if it has something to do with them or their loved one. If they won't help you get a second opinion you have one option, get copies of your medical records, cat scans, MRI's, pathology reports, surgery reports, doctors notes, etc. and contact the institutions you would like to review your case and send them copies of your records. Sometimes, you may have to pay for this but most of the time you will not have to pay. Hospitals must give you a copy of your medical records one time for free, if you ask again they may charge you.

Why is this important? It is impossible for doctors to stay up to date with every clinical trial, research, or treatment option that is available. Not every hospital may have the tools, equipment or ability to offer you some of the latest and best diagnostic services, surgical tools or clinical trials available. I always said I wanted a consensus of opinion on what direction we should take....I wanted 3 or 4 doctors to tell me that was what I should do concerning care for my child.

A second opinion is imperative for making sure you have all the cards on the table and you know what all your options are. At the end of the day make sure you can feel confident that made the best decisions with the information and resources you have available.

Surviving a Hospital stay

2008-08-13T11:32:00.003-05:00

Based on a recent report on medical mistakes from the National Academy of Sciences' Institute of Medicine, the IOM estimates that 44,000 to 98,000 Americans die each year not from the medical conditions they checked in with, but from preventable medical errors.

That is alarming statistics and scary to think that could be you. There are steps you can take to cut-down on the chance that a medical mistake or error happens to your or someone you love.

Let me tell you a story that happened to me..

When my son Cade was battling brain cancer in 1999 he had a very severe seizure that put him into a coma. They intubated Cade in the emergency room and admitted him to ICU. In a couple days he came out of it and we were able to take him home. But he developed an infection in his throat from being intubated because he was going through chemo at the time. He began to have a very hard time breathing and we ended up back in the ER on Thanksgiving night. Of course they admitted him because his O2 saturation levels were around 80% or lower. They began giving Cade breathing treatments to open his throat and lungs and he was receiviing oxygen through a nose tube (we thought). The doctor came in at one point and said they didn't think he would make it through the night because nothing they were doing was helping. I remember sitting there in our usual rocking chair and holding him tight. We had called all the family in to see him because we thought we were going to lose him. I looked up at the oxygen hose connection to the wall and noticed that the tube wasn't connected to the oxygen side of the cannister but to air instead. (If you have ever been in the hospital you know that they have oxygen connections and air connections on the walls beside the beds.) I got up unplugged the hose from the connection that was clearly labeled air and connected it to the other side clearly labeled oxygen. Cade's oxygen saturation level immediately went up into the 90's. Cade was released to go home only 2 days later. They had him connected to the wrong side the whole time. Of course, the hospital and doctor were very apologetic but that was no consolation when we had thought he was going to die that night and he had suffered as bad as he suffered not being able to breathe. However, we were so happy that he was better that we never pursued the issue. We were just thankful. Thank God I looked up and knew enough to know that he should be on oxygen instead of air.....WOW, it still makes me shiver just thinking about it.

What can you learn from my mistake....

Okay, the point of that story is......stay involved, aware and educated about every part of your medical care. Ask questions, know how things are supposed to go and be done so you recognize it when it is wrong.

Tips to survive your hospital stay....

Here are a couple tips I learned while we battled my son's illness.

1. Ask questions, when they come in your hospital room to do a procedure, give you medicine or anything if you do not know what it is or why you are being given it then ASK!!!

2. Find out what medicine they are prescribing, how many times a day you should receive it, how should it be given (ie orally, injection, IV push) and time it should be given.

3. Write down all medicines you are given and the amounts and times they are given to you, verify it is correct, ask to look at the medicine and verify the amount, dosage and medicine before taking it. If you cannot do this for yourself make sure your caregiver or family member is doing this for you.

4. Verify doctors orders. Don't let a nurse or other medical personnel perform invasive procedurs or administer medicine that you are not aware is supposed to occur. Verify the orders with the doctor.

5. If you do not understand something then ask for it to be explained to you until you do understand.

6. Always verify the wrist band they put on you has your namely correctly spelled and all the information is correct. Sometimes one letter misspelled in a name can bring up someone who is not you (ie, Thomason, Thompson, Murrey, Murray). I think you see where I am going with that....dont' assume that they know it is you.

7. Always report all your symptoms. This way the doctors have all the information they need to make a correct medical diagnosis.

8. Always report all the medications you are taking. Sometimes there can be drug interactions that you are not aware of.

That is a few tips that I have learned and some others I picked up from other people that helped me while my son was battling cancer.

Ultimately, your medical care is your responsibility....now is not the time to sit back and let someone else steer the wagon! Take responsibility.

Suggested reading:

Cause of Medical mistakes

Make No Mistake Medical Errors Can be deadly

Are you a good patient?

2008-08-04T15:12:00.003-05:00

Time and time again I hear from my patients, clients, caregivers and family members "my doctor doesn't spend enough time with me, he/she doesn't take my questions and concerns seriously and then hastily leaves the room only for an assistant to come back in and I never see the doctor again".

Well certainly this does not give you any peace of mind regarding your doctor or your health situation. And, certainly we do not want to continue to feel this way and should not accept this type of treatment by our doctors. HOWEVER, are you doing your part to be good patient? WOW, everyone hates it and sometimes gets offended when I ask this question. But quite frankly about 50% of the time the doctor is just as frustrated with you and your lack of preparedness for the appointment. Let me ask if you do the following:

1. Do you show up late for your appointment?
2. Do you write down your questions, symptoms, etc so you are ready to be seen by the doctor?
3. Have you brought a list of your current medications?
4. Do you have a room full of people attending the appointment with you and everyone has their own set of questions?
5. Have you bathed properly and paid attention to body oder, breath, cleanliness?
6. Did you follow your doctors advice from the last visit?

Depending on the question above and what your answer is you might be a lousy patient. Sorry to break it to you...but a fair deal of responsibility for your communication with your doctor is your responsibility.

Couple of rules to improve your communication with you doctor and become a good patient:

BE there Early!!!! Or at the very least on time in case you need to fill out more information. Make sure you have all the information, health insurance cards, health related information. If you have another appointment to attend after the current one, let the receptionist know when you get there so they are not delayed in getting you in and cause you to miss your other appointment.
Don't waste your doctors time, be prepared with your questions written down, list of current medications, symptoms, etc. Get straight to business don't expect them to listen to all your personal happenings like who got married, who had a baby, etc. They are very busy and you are there to discuss what your health situation is and not shoot the breaze. If you are that close to your doctor than you should call at a later time and make a date for lunch or dinner to get caught up. Right now lets focus on the business at hand.
Do not bring more than 2 people with you to your doctor appointments. There isn't enough room in the patient rooms for more than that and there isn't enough time to talk to each of you. Bring your caregiver, and another person who is informed and educated.
CLEAN YOURSELF BEFORE YOU GO! Don't go to your doctor appointments after you have mowed the yard in 100 degree heat and haven't taken a shower yet. Most people brush their teeth before seeing the dentist, well, you should also make sure you are clean when you see your doctor. I am sorry but that is just GROSS!
Follow the advice of your doctor. Otherwise, if you are not going to do what they recommend then don't waste your time or theirs and find a new doctor that you trust and will follow their recommendations. If your doctor tells you need to stop smoking to get rid of your bronchial infection and you continue to smoke, there isn't much your doctor can do for you if you don't take responsibily and follow their advice.

I hope this doesn't sound to harsh, but if you do your part to improve the communication with your doctor and they continue to dismiss your concerns, you still do not get questions answered and feel rushed, then you should look for another doctor. As long as you as doing your part to be a good patient than it is compeltely appropriate to expect the doctor to their job as well.

Good luck!!

How to deal with a financial crunch

2008-07-14T17:01:00.004-05:00

No matter what your financial situation before being diagnosed with a life threatening condition, you will experience a decrease in income. It is better to start planning for those situations now than to wait until you are feeling the stress. There are some things to think about and do now.

1. If you do not have a monthly budget, create one. There are some good financial planning software products you can use that will help you get an idea of your net worth and produce a cash flow statement. This is important because you need to know where you are right now in your finances.

2. Look at your income. Consider will your income be decreasing, how long is it anticipated to be decreased.

3. Look at your expenses. Are there areas you can cut-back now in order to save money. Start trimimg the fat off your expenses.

4. Do you have investments, or life insurance that you could borrow against if necessary? If so, get the paperwork and start getting it completed now in case you need it in the future.

5. Do you qualify for disability? Contact the Social Security Administation and get the paperwork filled out now. This process can take awhile, go ahead and get started.

6. Do you qualify for other types of state or federal assistance? Contact the Department of Human Services apply for food stamps, medical assistance, daycare assistance, etc.

7. Concentrate on your necessity bills and pay those first. In other words, prioritize your debts. First things, firs...... keep the mortgage or rent paid, utilities on, food and transporation needs covered. Then you pay what you can on other bills such as credit cards, medical bills, etc.

8. Contact creditors and see if they can give you an emergency extension. Sometimes they can post pone payments on mortgages, car payments, credit cards, etc for several months and tack them on the back of your loan. This helps buy you some time. Dont' wait until they have sent you to collections, go ahead and talk to them now. They are usualy willing and able to help if you will give them the opportunity.

9. Contact local agencies and organzations that may be able to provide financial assistance to help you. Your hospital Social Worker or Case Manager should have resources available to help you during this time. Aks for help.

10. If you are a member of a church, call and ask if they have any funds available to help members during crisis. Most times they have funds for these specific situations and are happy to help.

In later posts we will discuss how to negotiate with creditors, getting approved for Social Security Disability and others. Stay tuned!