Being Your Own Health Advocate!

[2BNTV]

I just wanted to start an informal poll on:

I was wondering how many people really believe in being their own health advocate?

I'm not saying doctors are not necessary and that we shouldn't listen to their recommendations, but how many people go to their appointment with questions written down, so all questions, can be answered?

[rubicon]

Hi 2B: I have been a long time health advocate for myself. My brother is even more proactive than me. If I listened to doctors advice without question my son would have died at age 12. Also i spent my career in insurance and had heavy exposure to the medical field and the legal field and it creates a gun shy approach for both disciplines. You are wise to be proactive. In addition the requirements under ACA are such that it is even going to be more essential to pay close attention to your records.

[Madelaine Amee]

I just wanted to start an informal poll on:

I was wondering how many people really believe in being their own health advocate?

I'm not saying doctors are not necessary and that we shouldn't listen to their recommendations, but how many people go to their appointment with questions written down, so all questions, can be answered?

I do. His nurse asks for any problems, I give her my notes, she reads the notes and enters them into the computer. He comes in, has already seen my notes on his computer, and takes it from there. I don't want to waste his time and he does not want me wasting his time ............... all good.

[Laurie2]

Whoops!

All 2B did was ask a simple question. And I stepped right up on my soapbox and went into quite the soliloquy about believing in being our own advocate and advocating for those we love. And then I started advocating for nurses -- who I know can save lives -- and end up too often being treated like you-know-what by some patients.

And then I was trying to look at what I had written so far and was planning to continue and say how I have always thought there needed to be people who could be hired to help those who have no one who can be with them while at the hospital or important doctor appointments. And how I hope if someday our family cannot help each other, we can find good people to hire.

And on and on I had gone and had planned to go and THEN I hit 'submit' instead of 'review' and there it was. But only part and then I took it out and put in this. Because I gotta stop.

Can you tell I am supposed to be working on taxes?

[graciegirl]

2B,

I always write down those questions.

Also, we never leave a family member alone in a hospital. Not only for medical reasons and to be there to ask questions and hear answers when a doctor is there, but also for the comfort of the patient.

We can do small things that can make a big difference, like getting water or food, or helping to adjust pillows or blankets. We can see that personal needs are taken care of where possible. When bedridden, sometimes just getting the stuff gathered up for teeth-brushing can be the highlight of a patient's day. And anyone who has ever been confined to a hospital bed knows that getting a bath can seem like it takes an Act of Congress.

Too many hospitals are understaffed. RNs are the frontline in patient care, but RNs are now being required to do more and more with less and less help. The days of RNs and LPNs and nurses' aides all being available to help patients are long gone. It is a fact. Staffing will not get better.

Many hospitals are paying fortunes to CEOs. And don't let the word 'non-profit' fool you. And then there are hospitals who have stockholders to pay, too.

I have great respect for good RNs. RNs save lives. But they are being exhausted by understaffing.

I agree with every word of this. People in pain and on medication need to be watched at all times by someone who cares deeply, no matter how good the professional staff is. We took turns staying with a divorced person who used to be part of our family because he had no one.

I have spent weeks and weeks with our Helene in hospitals. Not very many screw ups at the wonderful second best Children's Hospital in the whole country, Cincinnati Childrens. But once I stopped an incorrect medication from being administered.

Also people in pain or in stress or worried about themselves are often not coherent or using the best judgment.

Ask any nurse or doctor.

[Laurie2]

I agree with every word of this. People in pain and on medication need to be watched at all times by someone who cares deeply, no matter how good the professional staff is.

I have spent weeks and weeks with our Helene in hospitals. Not very many screw ups at the wonderful second best Children's Hospital in the whole country, Cincinnati Childrens.

Oh, gracie, you are a fast one, you are. I had hit the wrong button. You captured it before I could regroup.

Go back and take a look at what my Post #4 says now -- completely different. (You see, I knew I could preach all day and I was stopping myself by getting rid of the part you caught. -- though I stand by every single word of it. I just knew it would turn into a book.) Hey, it's OK, and it is funny to me to see this happen to my post. -- You sure are fast. :)

And, now, I really, really, really must stop this and get something done.

[Laurie2]

////////

[queasy27]

Not sure about being my own advocate, but I do know I only follow through with about half of what my doctor tells me. Non-compliant patient is me (and Elaine Benes).

I'm told I need X, Y, and Z. Eh, I dunno. It's mostly endless tests and prescriptions that may or may not help prevent a condition I may or may not get. My primary care doctor's first inclination is to refer me to a specialist for every dratted thing. Mostly I decline. There's so much health information available online now that I'm done taking any doctor's one-size-fits-all word for anything. It's my decision to make, not theirs.

I honestly think a lot of doctors have gotten carried away with "preventive" measures (in quotes on purpose) and shielding themselves from lawsuits by testing and over-prescribing.

[sunny46]

I definitely think you need a health advocate. My husband and I go to all appointments together and hope at least on of us catches everything that is said. After both of us have been given so many different meds, I now question EVERYTHING!

[Barefoot]

I was wondering how many people really believe in being their own health advocate? I'm not saying doctors are not necessary and that we shouldn't listen to their recommendations, but how many people go to their appointment with questions written down.

I would think that in a retirement community, the answer probably is 100% of people that believe in being their own health advocate.
All of us have lived and learned and seen medical mistakes and problems.
It would be prudent for all of us to keep written records of all visits to medical personnel, a list of any tests done with results, plus a list of any medications taken.

[Bizdoc]

I have a brief medical history, list of doctors, list of current meds and a list of surgeries for both Betsy and myself as a .pdf file on my cell phone. I also keep medical and financial POAs, advance medical directives, HIPPA designations, and several other legal documents on my phone. Why? In an emergency you will forget to bring along a large file folder with all of that stuff with you. I bet that you will grab your cell phone.

Password protect it if you feel it is necessary.

I learned from Betsy's hospitalizations that you never want to leave decisions in the hands of the folks at the hospital. They may be nice, but they don't have as much at stake as you do. Also keep in mind that in the middle of the night, you are likely to encounter the least experienced (and most overworked) medical staff. I have stopped nurses (and doctors) from doing very dumb things and have demanded that nursing supervisors and doctors be called, even if it is 3 am.

Before I get the medical folks upset, I worked as a medical surgical tech (including ICU and ER) in an inner city hospital for 5 years, flew medivac in the Coast Guard, and did a tour as a medical administrator. I have a great deal of respect for medical folks. But I also know some are better than others.

Oh yeah - have a full and complete discussion with the folks who are your medical powers of attorney about what you do and don't want. If they can't support your wishes, they are the wrong folks.

If you are a medical POA, keep one or more people on speed dial who you trust and discuss what you are doing to do - they can't make decisions for you, but having a sounding board will help you make better decisions.

If things start to get to you, go in the chapel and pray, cry, or whatever. Then go back and be strong for your loved one. Much of the time Betsy was in a coma, I kept singing "Just Keep Swimming" from Finding Nemo - The Musical to her. She doesn't remember it, but it helped me to keep from going crazy.

[NYGUY]

YOU know your body better than anyone else....YOU are the best doctor you will ever see!!! Yes it is good to consult with someone else (a Doctor), but never forget what I just told YOU.

[Barefoot]

I have a brief medical history, list of doctors, list of current meds and a list of surgeries for both Betsy and myself as a .pdf file on my cell phone. I also keep medical and financial POAs, advance medical directives, HIPPA designations, and several other legal documents on my phone. Why? In an emergency you will forget to bring along a large file folder with all of that stuff with you. I bet that you will grab your cell phone.

Password protect it if you feel it is necessary.

I learned from Betsy's hospitalizations that you never want to leave decisions in the hands of the folks at the hospital. They may be nice, but they don't have as much at stake as you do. Also keep in mind that in the middle of the night, you are likely to encounter the least experienced (and most overworked) medical staff. I have stopped nurses (and doctors) from doing very dumb things and have demanded that nursing supervisors and doctors be called, even if it is 3 am.

Before I get the medical folks upset, I worked as a medical surgical tech (including ICU and ER) in an inner city hospital for 5 years, flew medivac in the Coast Guard, and did a tour as a medical administrator. I have a great deal of respect for medical folks. But I also know some are better than others.

Oh yeah - have a full and complete discussion with the folks who are your medical powers of attorney about what you do and don't want. If they can't support your wishes, they are the wrong folks.

If you are a medical POA, keep one or more people on speed dial who you trust and discuss what you are doing to do - they can't make decisions for you, but having a sounding board will help you make better decisions.

If things start to get to you, go in the chapel and pray, cry, or whatever. Then go back and be strong for your loved one. Much of the time Betsy was in a coma, I kept singing "Just Keep Swimming" from Finding Nemo - The Musical to her. She doesn't remember it, but it helped me to keep from going crazy.

Some excellent advice here.
The last paragraph is very moving.
Biz doc, you're a good guy!

[graciegirl]

YOU know your body better than anyone else....YOU are the best doctor you will ever see!!! Yes it is good to consult with someone else (a Doctor), but never forget what I just told YOU.

There was no lump to feel when I had cancer. I had no symptoms of hyperthyroidism but if left untreated it could cause dangerous arrhythmias of the heart.

Only the nice tech who is wonderfully non hurtful at taking blood at the Quest lab can send your doctor the results of the blood tests that to my eye only look dark red.

I thought I knew my body pretty well, but it wasn't telling ME what the experts knew how to find out.

If you decide you don't want a colonoscopy then you have to live with the lack of knowledge about your innards.

I question my doctor, and sometimes I doubt him, but he is better at what he does than I am in figuring out what is happening.

But oh how I miss my doctors from Ohio.

[Wandatime]

In advance, sorry for the long post!

Advocate, advocate, advocate! Do your own research. Ask questions. If you have cancer or any other life threatening chronic illness, make lifestyle changes to your diet and exercise and take appropriate supplements. If something sounds wrong, ask for another opinion. And another.

Why? Doctors mess up sometimes. Sometimes more than one doctor messes up with the same patient. Like this:

1. So sorry, Sheldon you have stage IV lung cancer and only six weeks to six months
2. Oh, no our mistake, it is fast growing stage IV mantle cell lymphoma, we'll stick with the six months to maybe two years
3. Oops, never mind, it is B cell lymphoma, we may be able to fix that. Boy, we sure are glad the chemo treatment is the same as for the other two misdiagnoses
4. You are in complete remission! Yay!
5. Oh, sorry, you are not in remission, your cancer metastisized into brain tumors
6. We can fix that with gamma knife!
7. Oh, sorry, we can't fix that with gamma knife, you need whole brain radiation
8. You may never walk or talk again because the tumors were so large

The times he was in the hospital I moved in too. I stopped a nurse from mixing two chemo drugs in his IV line that would have killed him. I hunted down nurses, and sometimes doctors. I asked questions, and more questions. I said no a lot. I said he needs help a lot. I cried a lot. I got mad a lot. I was in the cafeteria and saw the doctor that said Sheldon had stage IV lung cancer and I managed not to choke him. I told some nurses to leave his room and never come back. I brought some nurses gifts, they were so angelic. It was a long roller coaster ride and I hated every second of it. But if I hadn't been on that ride with Sheldon I can say beyond a shadow of a doubt he would be dead.

It took Sheldon six months to go from using a wheelchair for taking more than fifteen steps clutching the wall to running up our long driveway with a twenty pound sledgehammer. He worked his ass off to get there.

He ate so clean he lost forty pounds. He quit drinking, quit eating sugar of any kind, quit eating any meat except organic chicken and fish, did yoga, meditated, drank tons of water and carrot juice, and took supplements, lots of supplements. He learned to juggle scarves to train his eyes to work right again. He did Lumosity games to train his brain. The sledgehammer was to help with his balance issues. So was the Bosu ball. The doctors recommended NONE of this, despite us asking numerous times if there was anything we could do to help fight the cancer and its effects. The closest they came was saying that sometimes a plant based diet seems to help.

If you don't advocate for yourself, learn for yourself, take care of yourself, you are putting yourself at the mercy of people. Fight for your health! It is your most precious asset.

[JoMar]

My wife and I are our health advocates, including for each other. It's important to do some online research and then discuss with the doc. Knowing that online information is "general" and does not apply to specific cases, we use it as a starting point for our discussions. If you don't ask the questions, or question the treatment you are giving up control....not something either of us want to do. Of course the downside is that if you refuse to see a recommended specialist, not follow the docs plan of treatment.....when things go south you don't get a do over.

[Jerseygirl08]

Thank you, 2BNTV, for starting this thread. I have been a certified Psychiatric/Mental Health Nurse for a long time. I have some specific med/surg background also. I love to teach patients, help guide them and educate them about their options. But my main enjoyment in nursing is being a patient advocate.

I so love what many of you said. Notably:

"Never leave a family member alone in the hospital. RN's save lives but they are exhausted (know that firsthand). Patients in pain or experiencing stress are not able to use their best judgment".
"Keep an ongoing health care/medical notebook. Write everything in it".
"Staff are nice but they don't have as much at stake". You ARE a good guy, Bizdoc!! JUST KEEP SWIMMING! Love it.
"If you decide not to have . . . you have to live without the knowledge of your innards". Great one, Graciegirl.
Wandatime: Good thing Sheldon had you to advocate and watch over him. "Nurses and doctors make mistakes, they are tired and overworked".
And the best one: JoMar said, "When things go south - you don't get a DO-OVER!"

I have always wanted to be a nurse consultant and have searched my soul for a few years over what kind of consulting would please me the most. And this thread validates my thoughts and hunches.

I'd like to know if y'all think there is a market in TV for a nurse advocate/consultant? A professional advocate to be at the bedside, monitor medications for interactions, research and educate her patient, step in and advocate as a son/daughter would if they could only be there.

We Americans spend lots of time and energy - and money - buying a big screen TV or new car or building a house. We need to devote as much or more of our energies to our health, or lack of it, and only then will we be proactive health care consumers.

What do you think? I'd love some feedback!

[Wandatime]

Jerseygirl08 -- YES! YES! YES! PLEASE!

[dbussone]

There are many who would benefit from your services. I know of one other patient advocate who frequents TOTV. It could be of benefit to both of you, and all of us, if you two connected.

[Laurie2]

Thank you, 2BNTV, for starting this thread. I have been a certified Psychiatric/Mental Health Nurse for a long time. I have some specific med/surg background also. I love to teach patients, help guide them and educate them about their options. But my main enjoyment in nursing is being a patient advocate.

I so love what many of you said. Notably:

"Never leave a family member alone in the hospital. RN's save lives but they are exhausted (know that firsthand). Patients in pain or experiencing stress are not able to use their best judgment".
"Keep an ongoing health care/medical notebook. Write everything in it".
"Staff are nice but they don't have as much at stake". You ARE a good guy, Bizdoc!! JUST KEEP SWIMMING! Love it.
"If you decide not to have . . . you have to live without the knowledge of your innards". Great one, Graciegirl.
Wandatime: Good thing Sheldon had you to advocate and watch over him. "Nurses and doctors make mistakes, they are tired and overworked".
And the best one: JoMar said, "When things go south - you don't get a DO-OVER!"

I have always wanted to be a nurse consultant and have searched my soul for a few years over what kind of consulting would please me the most. And this thread validates my thoughts and hunches.

I'd like to know if y'all think there is a market in TV for a nurse advocate/consultant? A professional advocate to be at the bedside, monitor medications for interactions, research and educate her patient, step in and advocate as a son/daughter would if they could only be there.



We Americans spend lots of time and energy - and money - buying a big screen TV or new car or building a house. We need to devote as much or more of our energies to our health, or lack of it, and only then will we be proactive health care consumers.

What do you think? I'd love some feedback!


I think the answer to your question is yes. It certainly would be a noble calling. But also, you would need to be paid and to be aware of and prepared for issues that could/would most certainly arise.

For a long time, I have thought this would be an excellent thing for retired nurses to do. Highly experienced nurses can get to the point where the physical demands of patient care become impossible or ridiculous. (NPR recently did a series on back problems resulting from lifting patients because hospitals will not spring for that thing -- can't remember what it is called -- that will assist in the lifting.)

Also, good nurses can get pretty fed up with the demands of understaffed hospitals. They can feel like it is not possible to do the job they want to do because they are required to do things that they should not be doing.

And also, let's admit it. Women born early in the baby boom and called to the medical profession mostly became nurses. Born later in that big boom, they might have become doctors. There is a lot of knowledge out there in that ageing boomer population. (I bet there are some lovely, hard-earned, nurses' caps sitting up high on closet shelves right here in The Villages.)

Well, it looks like I got up on my soapbox again when all I intended to do was pass along some information which I think might give you a good starting point in finding out what it would take to do the kind of work you are thinking about now.

This is a link to an organization, The Alliance of Professional Health Advocates. You will see that there is membership information, but there is also a lot of information you can get to without being a member. There are bloggers connected to the site and bibliographies that will take you to books that might help. -- Lots of paths to more knowledge about what you are thinking of doing.

Here's the link that can get you started maybe.

Homepage - The Alliance of Professional Health Advocates (http://aphadvocates.org/)


I wish you the best.

Reference Desk Laurie

[dbussone]

Well said Laurie.

[Jerseygirl08]

Wow, sounds like a resounding YES to the question about a need in TV for nurses as patient advocates.

Thanks Laurie2 for the reference. I think I've been on that site before but I'll go back on there again. Thanks.

Yes, nurses have been beat up over the years. Many retire with back problems, anxiety due to job/life stresses, knee problems, etc. Nursing has turned into a business of dollars rather than patients. We are no longer encouraged to be compassionate, rather . . . cost effective. We have become human capital in a corporate environment. I don't like it, not many nurses who do like it, only the ones who enjoy working overtime, 50-60 hrs. a week - for the money! The corporate managers would be the first ones to throw you under the bus should you make a mistake (give the wrong meds, for example) related to exhaustion.

Anyway, enough of that. I refuse to be negative - I have choices!!!!!!!

dbussone, would you mind PM'ing me the name of the person in TV who works as a patient advocate, if you have it. I actually wouldn't mind teaming up with someone. Or at best, we could help each other work better. Thanks.


Would still love to hear from others on this subject of marketability of a nurse patient advocate. And yes, Laurie2, there would be some "issues" to be prepared for should I venture out on my own; professional liability insurance (have it), advanced CPR training (have it), business plan (working on it), many hugs and smiles to go around (still have them!!). Thank you.

[NotGolfer]

Good poll....while I have several health issues and visit doctors to monitor and/or treat them I feel that I need to be my own advocate. I try to educate myself as much as possible re: my issues and the medications (if any) that I should take for them.

This may open a "can of worms" but I don't take statin drugs though my primary tries to encourage me to take them and prescribes them. Fortunately for me my meds are mail-order so I tell those folks not to send the statins to me. You can do your own research on these particular drugs and the side-effects that come from them. At any rate...I try to find practitioners who aren't "dictators" but work with me as on a team approach. Any others I will "fire"...we hire them and not the other way around.

[Barefoot]

Thank you, 2BNTV, for starting this thread. I have been a certified Psychiatric/Mental Health Nurse for a long time. I have some specific med/surg background also. I love to teach patients, help guide them and educate them about their options. But my main enjoyment in nursing is being a patient advocate.

I so love what many of you said. Notably:

"Never leave a family member alone in the hospital. RN's save lives but they are exhausted (know that firsthand). Patients in pain or experiencing stress are not able to use their best judgment".
"Keep an ongoing health care/medical notebook. Write everything in it".
"Staff are nice but they don't have as much at stake". You ARE a good guy, Bizdoc!! JUST KEEP SWIMMING! Love it.
"If you decide not to have . . . you have to live without the knowledge of your innards". Great one, Graciegirl.
Wandatime: Good thing Sheldon had you to advocate and watch over him. "Nurses and doctors make mistakes, they are tired and overworked".
And the best one: JoMar said, "When things go south - you don't get a DO-OVER!"

I have always wanted to be a nurse consultant and have searched my soul for a few years over what kind of consulting would please me the most. And this thread validates my thoughts and hunches.

I'd like to know if y'all think there is a market in TV for a nurse advocate/consultant? A professional advocate to be at the bedside, monitor medications for interactions, research and educate her patient, step in and advocate as a son/daughter would if they could only be there.

We Americans spend lots of time and energy - and money - buying a big screen TV or new car or building a house. We need to devote as much or more of our energies to our health, or lack of it, and only then will we be proactive health care consumers.

What do you think? I'd love some feedback!

For many with no children or siblings, or with families that live elsewhere, I think a paid Patient Advocate would be a godsend.

[Jerseygirl08]

Yes NutGolfer, good for you - that you are informed and do your own research so that you can be at the center of your decision making for your healthcare issues. Statins definitely come with a boatload of problems. For instance, my brother took them and wound up with a ruptured deltoid muscle. Statins weaken tendons. End of that soapbox.

I am amazed at the amount of people I meet who just do whatever their provider tells them to do . . . no questions asked, they just seem to trust the provider and go from there. Many people don't even suspect they are having problems because of the side effects of medications, for example. Or, some people don't understand how important it is to take care of things before they become problematic, life threatening even.

But, I understand totally. I'm that way about . . . many things. Don't want to know, trust the professional. Well, a few things!!!

Thank you Laurie2 for mentioning the Alliance of Professional Health Advocates website. I re-visited it and ordered a book from it. Great site.

Let's keep this going, I'd like to hear more folks opinions on the matter of hiring a Health Advocate - to assist with navigating through the murky scary waters of complexities in healthcare decisions.