My first ever conscious foray into the concept of minimal medical invasiveness was when I first found out I was pregnant with Mia (our first) back in 1999. At the time I was working for the natural history museum, and one of the curators at the time, also a friend of Brett's and mine, was married to a woman who was a midwife (not an at home midwife, but a bona fide staff member and head of the Midwifery Department at the Cleveland Clinic). I had talked to her at length about her profession before even becoming pregnant, and I was thoroughly intrigued by the approach.
Later, when I did become pregnant, I sought her out. Unfortunately, due to insurance stipulations and mandates (that's another heated topic for another day, though it does have a lot to do with the whole concept of medicine and the way things are conducted here in the United States), I was not able to seek support care from the Cleveland Clinic's midwife staff at the time (things have changed somewhat since then). I did however find out that my husband's employer, who has it's own medical center on staff, also included a midwife. I attended one of her meetings, and fell in love with her philosophy. She stressed, first and foremost that "pregnancy is NOT an illness" and should not be managed medically from that stand point. I went on to have both my daughters with her as my primary care specialist, backed by a OB/GYN should any issues arise. The only time I had contact with a regular doctor was once when I had abnormal bleeding, and when I arrived in the delivery room for Jaina, who was coming so fast an on call doctor started to take over until my midwife arrived. The difference between the two worlds was staggering. I won't go into the details, as it could take all day and I'm not sure I'd be able to keep your attention long enough as this post is sure to become epic.
So. Those experiences taught me to question the necessity of medical procedures, and the importance of reading and educating one's self so that you can make informed decisions about one's own care. As Greg Anderson writes in this chapter: "Who is the most important person on your medical team? . . . Understand this clearly: the most important person . . . is you. Your health is at stake. You are the central character. You are in charge." I think this is a very powerful statement.
Now...flash forward to the present. I am now faced with a family member (who is actually a canine), Guinness, who has just gone through surgery to remove a leg that was ravaged by bone cancer. We elected to do this because to not meant him facing a very rapid and inconceivably painful end. That was a no brainer decision. From there we were faced with either no further treatment, vs. chemotherapy vs./or in combination with natural remedies.
Anderson also states in this chapter "One of your most important challenges is to ensure that your medical treatment is as minimally invasive as possible while still being appropriate." The past several months have been a series of hard choices I have been faced with, so this statement really hit home with me. Each decision I have had to make involved me weighing the benefits of treatment vs. how it made him feel here and now in the present, and how much time the treatment could possibly buy him. It's one thing to make choices for yourself, but to make them for a creature that can't verbalize what they are feeling and wanting and needing is another ball game entirely. Thanks to an amazing support team of doctors, specialists, family and friends I have been lucky enough to find guidance, become educated about the illness Guinness has, and make choices that I hope to be the best choices I can make for him. I feel like it's like walking a tight rope, shift a little too much in this direction and you will fall, shift a little that way and you're balanced just right.
Last night I had a discussion with Dominique (in person I am so happy to say!) about Guinness and the whole concept of making difficult choices in the medical arena. From her own personal experiences, she gave me this analogy: not unlike the concept of gambling, making medical decisions has a lot to do with risk assessment. You weigh your odds, what the probable outcome could be, and weigh that against your choices. Hopefully the choice you make pays off. Sometimes you lose, and have to deal with it, but you hope most of the time you make the right choice. This hit home with me because, as I've been learning, even though medicine is a "science" I'm learning it is just as much an art. There are no absolutes, and it's not black and white. Every patient, every illness, every doctor and every suggested treatment is different, so you must risk assess at every turn.
Finally, Anderson says that he encourages us "to see yourself as the manager of a baseball team...your wellness team" which he includes doctors, specialists, technicians, family and friends. I have had the pleasure of discovering that sometimes you seek out your support group (family, friends and doctors) and other times you just sort of fall into finding them. Sarah, I'm talking about you! (side note: Sarah and I met through a mutual friend while playing a game based on Survivor, and when I first met her she had gone through the same thing with her dog, Indy, as I would later go through with Guinness...to say we bonded immediately is an understatement!) I am also talking about all of you wonderful Go Getters that even before I actually met you and became friends, you were strong supporters of Guinness. And undoubtedly I'm talking about family and the rest of my friends as well. I just have to say again to all of you . . . thank you again from the bottom of my heart and the tips of my toes (sorry if they're stinky) for all the love and support through Guinness' ordeal, it's truly what's kept me going.
So....now that I have stood up here on a soap box and chatted everyone's ears off (yawn, sorry, coffee anyone?) . . .
what does Minimal Medical Invasiveness mean to you?
What experiences have you had with the medical world, and what are your thoughts. Do you take it upon yourselves to question and research treatments offered and suggested to you? Do you prefer to let someone else take the reigns? Do you ever read up on illnesses you have been diagnosed on the internet and find yourself in even more of a mess because of the sometimes unmonitored posting and un-verified info that can scare the pants out of you (I was guilty of that when I was diagnosed with mitral valve prolapse years ago...ask my mom, I did a little too much reading and ended up in a panic attack thanks to the Merck Manual that I will never open again because every illness ends with the disclaimer "may result in death"!) In short, what is your approach?
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12 comments:
Shannon- I think you are right about all of it. I'm glad you put Anderson's idea of managing your health like a baseball team. My favorite analogy in the book. We are our manager and the doctors are the team. But we are always the one in charge. Do you remember the agony we went through for Beckett's test when he was two. We could have skipped it, he was fine. But like Dominique said to you-- you need to weight the cost and benefit and then hope it pays off. If I hadn't done it I'd still be scared that Beckett was going to get sick again. So, I guess it's perhaps about balance. Knowing when to use the advances in medicine and when to not. How much will it help? HOW MUCH WILL IT HURT? Sometimes the risk is just too much for what we hope to gain.
I do remember the agony Adrienne, and that is a great example of making an informed decision to go ahead and have a procedure done.
I guess my post falls heavy on the side of the minimal invasiveness, but I should have quoted the part where he says the law doesn't mean not visiting a doctor or no medical care, just making well informed decisions. I totally would have done the same in your shoes, it took a lot of grief and worry off your mind, and now it's not something you'll ever need to consider as a possibility of happening.
It's such a tight rope walk all the time, it makes my head spin sometimes!
I didn't mean that we should have things done. I guess I should have been more detailed.
We spent weeks researching Beckett's procedure. We spent hours on the phone with the Doctors. We were on the fence the night before. We were told that if we didn't have it done, and it were in fact something that needed to be looked at he would have serious health issues in the future.
Then we stumbled upon a medical journal that said family history plays into his situation.
He had a bladder infection that was pretty heavy when he was 2. Since boys don't often get them, the medical world jumps all over boys. He had to have an ultrasound of his kidneys but the procedure was a (I don't even remember the name anymore) but he had to have radioactive dye put into his pee pee with a catheter- he's two and wait! ! They actually fill the bladder until the person can no longer take it and they have to pee the catheter out on the table. Now just imagine a poor little boy who has been recently potty trained trying his absolute best not to pee his pants and then have this happen. It was horror.
So we tried to avoid it.
We found out that John's second cousin died from a kidney-ureter abnormality at age 7. The same thing they were searching for in Beckett. We had to do it. It was awful. It set potty training back 9 months. Uggg.
I wish we could have skipped the procedure in hindsight, but how were we to know? How could we take that chance?
Just do your research.
Be informed. Especially about using pharmaceuticals.
Shannon,
I am glad I fell into finding you too. It was meant to be with our doggie troubles. I am glad I can be part of your support network for Guinness.
I enjoyed reading this chapter and hearing what you had to say about it. I was raised by a mother who could have written a book on this topic, so I can have mixed feelings. I completely agree that there are way too many tests done, we are over medicated (especially kids), and that we have to be involved in our own medical decisions and not just trust the drs. I love your experience with the midwife and I will be talking to you about that when and if the time comes for me!
However, I also have the mom who had to have her homeopathic dr MAKE her go to a regular md for her asthma, who won't take medication or have surgery for bladder issues even though it causes problems in her daily life, and who thought I should "wait and see what happens" before using my epipen the last time I got stung by a bee. I'M ALLERGIC!
So I really related to the analogy that we are the managers of our wellness team. We are not the only person on the team. Sometimes we need those drs and specialists, but we have to be informed enough to know when and where it is necessary. Yes, I am guilty of reading too much on the internet, but I would rather be overinformed or even misinformed than not informed at all. As I have found with Indy, all that information just allows me to ask lots of questions and then make the best decisions. Hopefully, right?
Sarah, I agree, it was meant to be for us to find each other! :) You've been a tremendous help through all of this. I look to you and Indy as a sort of crystal ball for Guinness, I can see what good can come out of sticking by him and providing the best care possible.
Wow, so you have experiences to the extreme opposite of over care! Which, in a way could be looked at as a good thing in the long run, right (even if it means being flabbergasted that someone would suggest not using the epipen)? Because I bet it's taught you how to find balance between the two worlds. Even though you don't agree with taking that chance, and you were able to make an educated decision to use it, the realm of not using it was thrown out as a possibility, which made you probably think about it. (Maybe I'm just waxing poetic here! :D)
Adrienne, I still think you made the best choice for Beckett, and I watched you weigh your odds and really mull them over rather than blindly accepting it, you made yourself comfortable and in accord with the suggested treatment, rather than just being scared, and yet still marching into the hospital with him petrified and in the dark about it.
I'm definitely not saying that I think all medical procedures are evil, and I hope I did't come across as being that way in my initial post. I think the biggest point Greg Anderson makes is that people need to be making informed choices, which means doing just what you did...really educating yourself and going from there. He definitely doesn't seem to be recommending that people avoid going to doctors or deny medical care. I really like his approach.
For Beckett, A, what other choice was there? You needed to have a test done to LOOK at something that needed to be confirmed or denied. I don't think there was any other less invasive or "natural" option out there (x-ray vision perhaps?), and the outcome was knowledge about him physically that will be helpful throughout his lifetime.
To me minimal medical invasiveness means to learn about what the illness, disease or problem is, weigh your options, and try to make informed choices using all of your resources so that you can make the best possible decisions. Many times that means going a natural route, or sometimes it means tough it out, let your body heal itself and reap the benefits of over coming something without antibiotics. But often that isn't enough, so then there is the option of traditional Western medicine. I think that having many options only broadens our possibilities of recovery and maintaining overall health.
Such was with the case for Guinness. I chose to start with chemotherapy, very Western medicine, and used it to the best I could hoping to really pounce on Guinness' cancer. Once it became apparent that it was doing more harm than good in the long haul, I have now decided to move on to something less aggressive, but still effective, and definitely alternative.
(I'm getting cut off here...to be continued)
I think that really finding a doctor that has a similar approach to what you need as a patient is very important. I really try hard to find a doctor that won't throw every medication at me as the only treatment option, or one that will only tell me to take an obscure herb (over generalizing here) but one that will really try to get to the root of the problem, and offer a blend and a variety of options. One that will say something like oh, you have a sinus infection, use this nasal spray, but also try inhaling salt water, take steam baths, avoid dairy, take advil if necessary, and call me if it doesn't go away in x days, and then we'll try antibiotics.
Same with my choice in midwife. I didn't feel comfortable using an at home midwife for a home birth, I chose one that was linked to a hospital system, to an OB/GYN, in the event the pregnancy and delivery didn't go the way it should.
Sarah, yeah, you're right about reading as much as possible, even if it means being over or mis informed rather than uninformed. I get nervous about being misinformed, but you're right, that is what allows you to ask so many questions. I guess all the way around being UNINFORMED is the worst possible thing one can be.
(You can definitely pick my brain about midwifes and my experience by the way!)
Sheesh, I'm over talking my alloted space oops!
Wow. Great discussion...
I don't even know where to begin. I have had a few knee surgeries, usually waiting until my quality of my life depended upon them. I tried cortisone shots and Synvisc wanting very much to avoid surgery. My first was in high school. They didn't have the technology back in 1967, so they had to cut. Thank God, for all of you guys, arthroscopic surgery is available. So much less invasive, done under a local, piece of cake.... had 3 of those in the last 20 years. Then the time came to decide.... do I get a knee replaced or walk in pain. BIG surgery. BIG time rehab. I was told by the surgeon, it would be the most painful surgery that I would probably ever have. I weighed all my options, and went for it. I faithfully did all the rehab, much of it in tears. I LOVE my new knee. I can walk without pain (well at least in that knee). Thank God I could do it.
I have a nephew, by marriage, who has leukemia. He has spent the better part of 2 summers in the hospital getting chemo, being irradiated, bone marrow transplant. He went the distance, a very painful trip both physically and mentally. At 37 and with 2 baby boys, I don't think he had a choice. We all hope and pray that he will never have to go through any of this again. Then there are also the financial costs, had to be exorbitant, but I think he has great insurance, and a great boss. I know he has great friends who helped to make life a little less complicated for my niece.
My mother and father both had illnesses after long healthy lives. My mother's Alzheimer's was a ghastly thing for her to live through. As her power of attorney, I was asked what should they do (at the facility where she finally had to live) if she had a heart attack. I had to say, with a heavy heart, please let her go. My father, who's mind was good, but his body not (he was wasting away in a bed, essentially) had to make his own decisions about his death. I know he fought with it, but ultimately, he asked that they not do any CPR, etc and let him go. Casey was with him when he died, Abbey was there with him that day too. (I was out of town and am so thankful that they were with him.)
His care at the end of his life was his decision to make, no one else's. He did what was right for him.
When we have to make these decisions in our lives, we can only hope that we do what is the right thing for ourselves. When we have to make these decisions for others, like with my mother, or our children, or our pets, it involves so much more.
I think from this discussion, this group of GGG, has a good handle on it. Risks v benefits, always. Quality of life should be as important. Do the best we can though wellness care. And take time to be still and listen to what our hearts tell us.
Robin, I knew you had knee replacement, I didn't know it was so many years of pain and struggle. I'm so happy for you that you were able to triumph. It's hard to make these decisions and feel informed. The medical realm can be so overwhelming. You are right though quality of life has to be assessed when making big decisions.
Cheers to good health, medical advances, and informed decisions!
Well, you all have me thinking about this more than I already was...and I didn't think that was possible!!
Really great discussion...
(Please keep in mind that the following is written by a single woman lucky enough to have a great job with health benefits and minimal expenses..otherwise I might not have the freedom to do all that I do in the name of wellness. I realize that I am lucky, at least in this case. Somehow, though, I still find a way to get anxious and stressed!)
WESTERN MEDICINE
I have been lucky and blessed enough to not have to deal with too many health issues. I deal just with this or that, like getting fillings in my teeth, a cold/flu/bronchitis, physical therapy after a horse accident, anxiety, hypothyroidism...nothing absolutely life-threatening...I suppose. Though, if I didn't take care of my teeth, I could become very sick (and pretty funny looking!) or if I don't take my thyroid meds, I could get very sick as well. Too much anxiety, you get the idea.
HOLISTIC MEDICINE
The other part of it is that I have, for the last 13 or 14 years, been involved in one way or another in the natural/holistic arena. I worked alongside a naturopathic doctor in Miami as a massage therapist. I now sell holistic skin care to spas and wellness centers. I've been surrounded by alternative approaches to health. I get acupuncture treatments, massages, I see the chiropractor and I have herbs and different teas in my kitchen...right alongside my doctor prescribed thyroid medication! It really is a balance!
TEAM EFFORT
I go to the doctor for my physical and to get my pap smear. I just had 2 wisdom teeth pulled yesterday. And, I also get massages, I'm doing a detox, and I just ran a race on Saturday. It is definitely a team effort. I love hearing the different opinions. I love that my doctor really talks with me. I love the way the massage therapist helps me keep my muscles long and the chiropractor aligns my skeleton and gets me orthodics so that I can keep running and maintain a strong heart and healthy cardiovascular system. Then the physician checks my blood pressure, my cholesterol, my cervix, etc to be sure all is still well. I try to do some yoga and meditation for my anxiety and I also go see a therapist. We all work together.
Barbara Close (the founder of Naturopathica..my employer) always says, "Everything in moderation, even moderation." Sometimes just enjoying an icecream sundae and loafing around on the couch is just as therapeutic! Laughing my butt off with girlfriends over a couple of beers is ESSENTIAL! It's always progress, NOT perfection. They often say that laughter is the best medicine of all.
I think by following the laws in this book we are taking great steps in the name of wellness. And, I agree with my mom when she says that we also have to listen to hearts.
You know, an after thought.... I have sometimes regretted doing what my mind told me to do, but I don't think I have ever regretted doing what my heart told me to do. Goes for most everything. Think I'll try to remember that when I gets to be my chapter (s).
Hey, BTW, I still have 2 chapters. Doesn't anybody, who doesn't have one, want one?
Great blog, Shannon, and great posts everyone. Be informed. When my mother was ill and could not be her own "facilitator", I had to be the one who did the research and made the decisions about her health. Even if things do not go well in the end, you at least know that you did your best.
I just want to post a salute to Guinness here, and to Shannon and Brett, who did their homework and the best they could do for a doggie they loved.
Debbie
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