One of the greatest gifts my mother ever gave me was teaching me how to survive and thrive when medical care is needed – with advocacy, exercising my rights as a patient, second opinions, research – and good manners.
My mom never allowed a doctor to be in complete control of her medical care decisions just because s/he had ‘MD’ behind his/her name.
When she was diagnosed with breast cancer and told she had to have a mastectomy and start chemo and radiation right away, she asked for a second opinion. She also went to the library and checked out every book on cancer treatment in print, as it was the 70’s and we didn’t have Google. She checked out medical journals and researched her options. She learned that they had a great and successful cancer treatment in Mexico that was illegal in the U.S. She learned how to eat and juice to combat cancer. She jumped through hoops until she was able to obtain the Mexico cancer treatment. She beat breast cancer without chemo, without radiation, without mastectomy. And without losing a single hair or ever being sick! Not one day was she sick! She was healthy through it all! Go figure!
I was only nine years old, but this spoke volumes to me.
My mom advocated for many friends and relatives over the years, demanding the medical care they needed when healthcare providers fell short.
I learned a lot from her example. Valuable lessons.
Never blindly trust a doctor or nurse. They are only human and they make mistakes.
Q. What do you call someone who graduated at the bottom of their class from medical school?
The Nurse from Hell: My Mom to the Rescue
With my third baby, I had placenta previa, where the placenta is born before the baby and both mom and baby bleed to death in seven minutes. I was scheduled for a c-section with orders to go to the nearest hospital by ambulance for an emergency c-section should my water break. And so my water broke and we called 911 and went by ambulance to the nearest hospital where the nurse wouldn’t allow me to see a doctor! I explained that I had placenta previa and needed an emergency c-section and she told me I would be giving birth naturally. Yes, she was the dingbat nurse from hell. And I was in no position to stand up and walk out and catch a ride to the next closest hospital. I had to stay prone. I was alone as my husband had to wait for our childcare provider to arrive before he could join me at the hospital. So I called my mom. It was around 4am. She was sound asleep but she managed to get dressed and to the hospital in less than a half-hour. And she advocated for me and quickly convinced those dingbat nurses that it was in their best interest to have me transferred by ambulance to a hospital that would provide proper medical care for me and not put my baby’s life and my life in danger for one more minute.
Had I listened to that nurse, my third and fourth sons and I probably wouldn’t be here.
My mom was the one to have in your corner if you needed an advocate for your medical care. But she also taught me how to advocate for myself and I’ve had to many times over the years.
They Told Me to Abort
When I was pregnant with my twins, I was told the pregnancy was causing my breathing issues and I needed to abort right away. But I had the breathing issues before I was pregnant so the pregnancy didn’t cause the problem and I surmised that an abortion wouldn’t solve the problem. They also said I needed to have a tracheotomy right away although my breathing crisis had passed a week prior and I was now breathing ok. I just got up and walked out of the room. Didn’t say a word. Just walked out. As I was walking away, I heard my husband tell those doctors, “well, looks like that’s a no, bye now.” I didn’t even say good-bye.
Had I listened to those doctors, my twins wouldn’t be here.
Another time I was hospitalized for days and never saw a doctor! They starved me everyday for procedures that were cancelled everyday. I asked to see a doctor everyday and they never came! I would call for a nurse when I needed a breathing treatment and wait forever while in respiratory distress. I was going downhill. I finally called my mom and my husband to come bust me out. I went to another hospital and got the medical care I needed.
And then last year my trachea was both collapsed and stenosed (inflamed and narrowed). The collapse was more than likely due to the years of stenosis and the hospital I was in wouldn’t do a procedure I needed called a tracheal dilation and insisted instead on a permanent tracheostomy which would render me mute for life. But I questioned them and I researched from my hospital bed thanks to Google and my smart phone and I made phone calls and sent emails to other doctors in other hospitals and got second and third opinions and there was a much better option –the dilation– and the good folks at Cleveland Clinic said, “we got this! Come to us!” But a psychopath quack at my current hospital lied to me and told me that the doctors in Cleveland agreed that tracheostomy/muteness was my only option of walking out of the hospital alive! But I had the emails from the doctors in Cleveland saying they could do the dilation and no way should I have the tracheostomy! I read the emails to them. You could have cut the air with a knife. So I busted outa that hospital with the help of my husband and two of my sons – and one son flew with me to Cleveland where they promptly fixed he problem and provided excellent medical care – after begging these other doctors to fix it for over two decades – before it was so severe.
I can breathe well now! And I can still talk!
Had I not done my research, had I not sought more opinions, and had I listened to those doctors, I wouldn’t be able to talk and I’d have a permanent tracheostomy.
Recently, a nurse called to schedule gallbladder removal surgery for me. But I questioned her and as she looked over the doctor’s notes, she gushed an apology, she had read the doctor’s notes wrong! She’s a good nurse, but she’s human, she made a mistake! I’ve been symptom-free for over a year, not needing my gallbladder removed!
Had I blindly gone along and not asked questions, I would have had the unnecessary surgery and lost an organ.
Ask questions! Advocate for yourself!
I used acupuncture and herbs to resolve my gallstone issues!
Another Example of Human Error
My latest example of why it’s so important to advocate for yourself. I’ve started back at physical therapy because I have adhesive capsulitis, aka frozen shoulder, thanks to medication side effects. So my first few sessions, I felt like they weren’t really addressing my shoulder issues, so I spoke up and found out my order was written wrong! Somehow my shoulder issues weren’t on my requisition. So she worked on my shoulder for about a half-hour and added exercises specific to my shoulder issues. And my shoulder was much improved after just one session! Speak up when things seem amiss.
Had I not said anything, my shoulder issues would have continued to go unaddressed.
And it’s Important to Teach our Kids to Advocate for Themselves
My youngest son had a skiing accident which required stitches. The ski lodge medic butterflied it. He skied all day with his injury. And at the end of the day when he got his stitches at an urgent medical care facility, he advocated for himself, refused unnecessary vaccinations and educated the nurses on vaccinations and the laws regarding vaccinations, which he knew more about than they did! Every time I felt like I needed to speak up and defend his rights, he did it himself! And he did it very respectfully. He informed them that he would need to research the vaccine before allowing it. At barely fifteen years old! I was so proud of him!
Mom or dad wont always be there, it’s important that our kids know their medical care rights and how to advocate for themselves.
Firing Medical Professionals
There’s been times that I’ve been in the hospital and had to fire a doctor or nurse or respiratory therapist due to shoddy care.
Refusing Tests and Procedures
I’ve questioned and refused unnecessary procedures and medications. Including some blood draws because every four hours isn’t always necessary, sometimes it is but not always, and if you don’t ask, they just do it. I want an explanation.
Know your rights
- It’s your right to refuse anything when you’re a patient.
- It’s your right and responsibility to ask questions.
- It’s your right to fire folks and have them replaced.
- It’s your right to second and third and even more opinions.
- It’s your right to contact doctors at other hospitals.
- It’s your right to leave a hospital without discharge.
- It’s your right to go to another hospital, even out-of-state. See how-to here.
- It’s your right to ask to be transferred to another hospital – they may not comply – in which case you do it yourself with the help of friends or family.
- It’s your right to request an advocate.
There are advocate agencies, but they are usually pretty pricey. But you can call around your area. Some hospitals provide professional patient advocates and you can request one, contact patient services. If a professional is unavailable and you’re struggling with advocating for yourself, call a friend or family member.
Last year I was hospitalized 200 miles from home and there were meetings with doctors that required I have an advocate other than myself, my son was living in the area and got off work several times to attend these meetings with me.
When there are “meetings“ you definitely need an advocate other than yourself.
I would highly recommend recording said meetings and other talks with doctors because it’s hard to remember everything and it’s in your best interest to do so. All smart phones have “tape-recording” capabilities.
Take notes and write down questions to ask when the doctor/team of doctors come in. Ask for paper and pen.
Healthcare Providers as Advocates
Many times my nurses, respiratory therapists, and doctors, have stepped up to the plate and advocated for me when things were amiss! Love them!
Friends and Family
If you have a loved one in the hospital, try to be there as much as possible to advocate for them. And keep them company! It’s great to have a friend or family member advocate for you.
“One thing I tell people is if you have a sick family member, don’t leave them alone in the hospital. Even when there are visiting hours where you’re supposed to go home, I’ll tell people, find any way that you can to stay anyway, because when you’re sick is the last moment when, as a patient, you’re able to fend for yourself.” – Dr Atul Gawande
Be at the hospital with loved ones as much as possible. When you have to leave, try to arrange for someone else to be there. Attend doctor appointments with loved ones who need an extra set of ears or advocacy. For follow-up appointments after a hospitalization, having an extra set of ears or someone who can help describe your symptoms/progress is valuable.
And when there’s no one who can advocate for you, you absolutely must advocate for yourself. I’ve had to many times. Remember to hit record when talking to doctors.
I’ve also learned to ask for stuff they don’t prescribe or offer. Such as vitamins and probiotics! They don’t prescribe them but if you ask, you get them! If they stock them.
Most hospitals have items to borrow or check out such as laptops – but if you don’t ask, it’s not always offered. Ask for volunteer services or patient services. They’ve brought me coloring pages and markers! (I’ve included links at the end for a wonderful adult coloring book, good to take with you, or take to a loved one in the hospital, they help pass the time and really help alleviate anxiety!) They have books and magazines and other things to make your stay more pleasant. But you have to ask or it seems they don’t show up until you’re being discharged. They are volunteers so be kind.
And When You Have Good Care, Say Thank You!
My nurses, doctors, housekeeping staff, food service staff, et al, are amazed when I thank them! They rarely get thanked! Are you kidding me?! Another thing my mom taught me was good manners! Good manners and treating my medical care providers with respect has gained me private rooms, extra pillows, extra chairs for my visitors, over the limit of visitors, musician visitors and other perks!
I had a nurse tell me I was bumped up on the waiting list and got a private room because I was such a pleasant and nice person. One nurse even referred to me as ‘lovely’ and we are friends to this day! I’ve had great nurses request me because I’m respectful and friendly and I say thank you. It’s really nice to have a great nurse request you instead of getting the luck of the draw nurse.
Show some respect and appreciation for these people who devote their lives to caring for others. They want to be at home with their families or outside enjoying nature, but they are devoted to helping others achieve health and wellness. It’s not just a job, it’s their calling, they are worth their weight in gold and they deserve our gratitude. I greet them when they come in and thank them when they leave and strike up conversations whenever I can. I even thank phlebotomists… they’re just doing their job in an effort to help you.
So I want to pass along to you the valuable gifts my mother passed along to me and I’m passing along to my kids: Patient self-advocacy, knowing and exercising your rights, the importance of research – and second, third, fourth opinions. And saying thank you!
Here’s to surviving as a patient ♥️
Reference: My mom, Bonnie Purington Conlow Graig, in loving memory, thanks mom ♥️