The option of Doing Nothing or Doing Less

[natnnnat]

I made a comment elsewhere [ http://ihatedialysis.com/forum/index.php?topic=29419.msg464000#msg464000 ] about being wary of surgery.  MissJazzyEmily called me on it, and I thought I'd better make a new thread as the comments here are not relevant to that thread. 
I said,

RM, re Australian health care:  I hear you, and [we would think carefully about] ever moving to the US unless we had very good insurance.  But Australian healthcare isn't free of this kind of mishap.   One thing I'm starting to think is, if at all possible, avoid surgery.

MissJM replied

Wait--are you saying not to go through with her transplants surgery?

I replied,

No way.  My husband has had two transplants and is much better off for them, he far prefers the transplant life to the dialysis life even though both have their own challenges.
Moreover, I don't know much about Jennifer's situation, so I would be mad to make such a statement. No no.  My comment to Richard was definitely NOT about Jenn.

So what did I mean?  I guess my comment was addressed to RM's more general remarks about health systems, and I had in mind not so much the question of whether renal patients should have surgery, so much as whether anyone should have surgery as a first option.  I guess sometimes I hear that people had surgery when maybe things could have been dealt with in other ways.  For instance, my father in law, an otherwise fit and healthy pensioner, had his gall bladder out many years ago, and the only explanation I can find for it is that he was burping a lot, and had heartburn.  I notice now that he lives with us, that he gobbles his food down, often chokes on it a bit because he talks with his mouth full, doesn't seem to swallow before the next forkful, wants to get up from the table before he's finished chewing.  I wonder if he did that way back when, and if that's why he burps (still) and had heartburn.  Surgery is meant to be a fix, and it can be a wonderful fix (Gregory for example) but sometimes I think, if you ask a surgeon what to do, all they will suggest is surgery, it can be useful to ask other specialists. Give a man a hammer and everything will look like a nail.  Sometimes there is no time to waste, and particular kinds of surgery can be a great fix; but I think surgery is an option which carries inherent risk, and being done by humans on humans, things are bound to go wrong from time to time.  The implications can be dreadful in a small number of cases.  Acquiring infections from surgery, for example, I just keep coming across that one. It happened to my mother in law and recently Gregory acquired a cracker from having a urinary catheter put in (but putting in the catheter solved a whole lot of other problems).  Probably my perspective is very much informed by my mother in law's story, during her last years she had bowel cancer, each surgical intervention seemed to make the situation more distressing, and each was an attempted fix in a situation where perhaps she might have preferred to stop the heroics a little sooner.   So all of this forms part of my comment - if I was facing surgery, and I had time to find other options, and if there were other options, or if doing nothing was an option, I personally would avoid surgery.

I tentatively (because it is not only about surgery) note publications like this recent commentary from the Mayo Clinic in the US, in which the value of "doing nothing" is discussed. See excerpt and URL below if you are interested.

In the case of my father in law, would changes in the way he ate have been tried before the surgical intervention?  I'm not sure they were.   BUT people don't always have many options.  My mother in law didn't have many good options, that's for sure. In the case of renal failure, often surgeries more or less have to happen.  For example, a fistula or PD tube both require surgery.  A transplant, you can't get one without surgery, and once you have one, sometimes you need more surgery to fix issues with settling the kidney in.  But then when its all working, its all worth it. 

And most surgeries go without a hitch. 

Anyway here is the start of the commentary I recently encountered, which is an example of a larger discussion I perceive going on in health, about the risks of causing harm to patients by over-enthusiastic interventions.

http://www.mayoclinicproceedings.org/article/S0025-6196%2813%2900403-5/fulltext#.Ufe7Wvmc-A8.twitter
How Many Contemporary Medical Practices Are Worse Than Doing Nothing or Doing Less?
John P.A. Ioannidis, MD, DS
How many contemporary medical practices are not any better than or are worse than doing nothing or doing something else that is simpler or less expensive? This is an important question, given the negative repercussions for patients and the health care system of continuing to endorse futile, inefficient, expensive, or harmful interventions, tests, or management strategies. In this issue of Mayo Clinic Proceedings, Prasad et al1 describe the frequency and spectrum of medical reversals determined from a review of all the articles published over a decade (2001-2010) in New England Journal of Medicine (NEJM). Their work extends a previous effort that had focused on data from a single year and had suggested that almost half of the established medical practices that are tested are found to be no better than a less expensive, simpler, or easier therapy or approach.

[Jean]

Last Nov. I was in the hospital because of severe stomach pain. I could barely walk. A CT scan showed diverticulitis and it had eaten a hole in my intestines and pus was running out of it . The surgeon wanted me to have a colostomy put in that very day. I asked if there was anything else that could be done. So, she wrote me up as refusing surgery and I laid there for 2 days with nothing by mouth, 3 more days with only ice and finally the next two days with some broth. It was agony but I just felt I did not want the surgery. I have since had a colonoscopy and all is healed. My Primary Dr. also said he thought I had done the right thing since this was the first time I had it. And, so far, so good, no more pain. So, in that case for sure, better to do nothing at all!!

[willowtreewren]

I agree, Nat. A few years ago I was having trouble with my rotator cuff. Surgery was suggested, but I asked if physical therapy would work. It did, and I now have no problem. I also had knee surgery many years ago. Later I learned that physical therapy would have probably worked for that as well. Grrr.

Aleta

[KarenInWA]

I have a different story. Back in 2004 I started noticing that everytime I ate, I didn't feel good. I'd get an upset stomach. I went to the dr and discovered it was my gall bladder (it was tender to the touch) so an ultrasound was ordered. That showed that my gall bladder was fulll of "sludge". I had an appt w/a general surgeon who recommended surgery, and he told me why he recommended it. It could turn into an emergency situation later. I decided to do it. I was 30 at the time. The anasthesiologist saw that I was on a BP med and ordered an EKG before the surgery. I was on the BP med due to my kidneys. The EKG showed I had a congenital heart defect! They proceeded with the surgery, which had no complications. I had an easy recovery. I was referred to a cardiologist, then an "electro" carditologist (forgot the real term) who then did radio-frequency ablation to fix my heart. I had WPW - an accessory pathway in the heart, which has the ability to up and kill you with no notice! I am very thankful that my gall bladder decided to give out when it did and that I decided to get it removed. I don't miss it!

KarenInWA

[MooseMom]

This is why it is important for patients to educate themselves and ASK about alternative treatments

Two stories:

1.  My father, when he was about 75, was diagnosed with prostate cancer.  He was given all of his options, and his doctor told him that this was a slow growing cancer and that he would probably die from something else before he'd die of prostate cancer.  Well, my father didn't like the idea of having cancer inside of him (and I can understand that sentiment), so he opted to have radiotherapy.

While he did seem to be cured of cancer, the radiotherapy ended up weakening the vessel walls of his urinary tract, so for the rest of his life, he had a chronic UTI.  He seemed to almost always be on antibiotics.  He was told over and over and over and over and over and over again to keep well hydrated, but I swear to God that the only liquid I ever saw him drink was one cup of coffee and two small glasses of milk a day, both with meals.  I never saw that man drink a glass of water.  My son and I happened to be visiting my parents when my dad finally succumbed to an overwhelming infection and died from sepsis after three horrible days in the hospital. 

So, my dad died of doing too much, all by his own choosing.

2.  My mother found out she had an aortic aneurysm.  She had no choice but to have surgery to repair it.  When she was in recovery, her hemoglobin kept dropping, and the surgeon had to go back in to remove her spleen which he had nicked during the first op.  One of the two procedures resulted in loss of profusion to her kidneys, so she ended up on dialysis for the final 5 years of her life.  And like my dad, she, too, died of sepsis due to a UTI.

Both of my parents died from complications from some sort of medical procedure.  As natnnat says, we really need to make sure we have as much information as possible before we make our decisions.  And we need to consider the source.  If you go to see a surgeon, know that you will probably be advised to have surgery!