I've been dancing up to this but still don't know what I can say.
When my husband was diagnosed with terminal cancer, I went into a strange hyperdrive. Unfortunately that state didn't help much. I became obsessive about learning about his cancer- what therapies had been tried, what new therapies were being considered, why those therapies might be helpful, what the nature of his disease was and what we were reasonably facing.
Let me take a moment and be explicit. The people with the healthcare organization we were dealing with were never once willing to deal with the slice of hell we were dealing with. To be plain, my husband's diagnosis has a 99.6% death rate in the first 12 months of diagnosis. We got 13 months nearly to the day.
I was lucky enough to assume that my husband's doc was an idiot. I researched his disease instead of considering his doctor's pronouncements. In short, I learned truth to contrast the fiction I was being fed. At the same time, I was being told that the "internet" would only confuse me. Really?
At last check I am able to tell the difference between speculation and science and I don't recall needing permission to clarify this.
Unfortunately his doctors assumed that they could say what they wished and no one would question it. Except me. I questioned whenever I thought it reasonable or relevant to do so. This won me no points.
It doesn't require huge cranial skills to Google "non small cell lung cancer" and get a clear understanding of what you're up against. The love of my life was going to die and I could do nothing about it- even while his doctors were telling him he could live for years.
Thirteen months.
My research was the only reason we had direction to manage our legal affairs, or to consider how he would like to die- or where- or how. It was the basis of several discussions about what he wanted and how he wanted to be remembered. It was the foundation of trying to fill his bucket list. In truth it was the foundation of acknowledging that he HAD a bucket list.
I was there in his last days. I was there when he took his last breath. As a nurse, I had to fight the wish to try however vainly to keep him alive. As his wife, I had to fight even harder- I knew he was dying, I knew why- I would have killed for one minute more... in complete selfishness.
My wonderful husband died on 4 September 2010.
The crushing grief that I have been trying to deal with has, in it's own way, been the foundation of this blog.
I tend to be forgiving of doctors to a point - I've read a lot of articles and blogs written by oncologists, and most of the patients who "do their research" tend to come up with extremely unrealistic information. It's not necessarily their fault - quacks are very, very good at manipulating search engines, and that gets them clicks, which pretty much guarantees that unless you're really, really specific about your search terms and know how to sniff out pseudoscience, you won't find anything valid in the first 20 pages.
ReplyDeleteThere's also a phenomenon among relatives of terminal patients to want - no, INSIST - on being told the best-case scenario. Doctors who are honest and recommend palliative care rather than a cancer treatment for patients they know are not going to recover tend to get a really bad rep among patients (and therefore potential patients.) So they get stuck between a rock and a hard place, knowing that telling a relative, "no, there's no hope" and not being able to provide the care the patient actually needs, and telling the relative "we might be able to prolong his life," knowing it's really going to be more like prolonging the agony for a few more months.
This is not to say that your assessment of your husband's doctor was incorrect. Are there idiot doctors out there? Yes. They don't even all have TV shows. Many of them are actually just trying to figure out whether it's going to be better in the end to be called idiots for telling the truth to naive people or be called idiots for sugar-coating things for rational people.
No matter what, it's a situation that doesn't work out for the best for anyone.
For my own part, I'd rather have the truth, all the information, whether it's good or bad, because I'll pick realistic expectations over false hope any day.
You did what was right for you and your husband, and that's really the most important thing about that whole chapter of your life.
You speak to another issue I am pretty passionate about- unreasonable expectations and how they end up damaging everyone around them.
DeleteI do feel for docs who are up against the unsolvable. They never know if the patient in front of them is going to accept the truth or wants to be fed a lie. So they dodge and hope that they have gone in the right direction. I get that.
What I don't get is healthcare providers who- knowing that the patient prefers truth- insist on perpetrating the lie.
I was flatly told that I was "killing" my husband because he and I chose to take on the reality of his illness and its terminal nature. The theory presented to me was that, by not playing the sugar coated game, I was enabling him to accept death.
Are you f-ing kidding me? These are healthcare providers?
I caught a blog recently that noted an interview between Dr Oz- who I believe to be an *ss- and Larry King. In that interview, King asks Oz about "never telling the terminal patient the truth and presenting the optimistic view. Oz seemed to think that being overly optimistic was the best plan. I no longer wonder why I can't stand the man.
I get the idea that optimism can be good and has a place. What I don't get is the idea that lying to a patient and that patient's family is in any way functional.
We currently have a healthcare system that is seriously broken. Part of that broken is that we refuse to be realistic about what doctors are for and how to use them properly. What has resulted is a system where we are treated inappropriately on the CYA plan so docs don't end up fighting malpractice cases. They don't dare speak truth and we the patients demand the impossible.
It's a no win.
This is why I weep over standardized education. A little instruction in critical thinking would go a long way to getting people to understand that not everything is a clear-cut dichotomy, and that sometimes "I don't know" is a perfectly reasonable answer.
DeleteExactly!
DeleteWhat no one seemed to be able to understand is that I was perfectly capable of distinguishing between real science and hogwash. I never thought I was terribly unique, but evidently I am.
As far as "I don't know" is concerned, see several blogs back. I think it was my celebration of National Honesty Day.