This week I got a surprise dividend from all the time I’ve spent thinking about;
1) how I’d like to die, and
2) how to explain it to a loved one making choices for me.
But in order to explain the dividend I have to go back to the beginning of the year.
As I relayed in False Positives Are The Tenth Circle of Hell, starting in January the hubster and I endured four stressful months of an unnecessary prostate cancer scare. What I didn’t mention in that post was that, during Month Three of this ordeal, I went in for my first mammogram in eight years and afterwards received a call back informing me that I needed to come in for further scans. The radiologist had questions and wanted a second look.
I felt like I’d just been slugged. I was already grappling with the onset of a depressive episode because of the fear and uncertainty surrounding the hubster’s prostate scare and I quickly realized there was no way I could simultaneously navigate the stress of a second scare without going down for the count. I decided to postpone dealing with mine until I found out what was going on with the hubster’s.
Which was easier said than done. The aggressive barrage of phone calls and letters that followed
pressuring reminding me to schedule an appointment for further treatment only pressed me deeper toward the depressive episode I was fighting to stay out of. (What’s up with that anyway? People with real cancer don’t get that level of follow-up.)
Finally, we received the news that in spite of an elevated PSA, the hubster’s prostate was actually perfectly healthy. The last four months were “just” a scare. As I described in my post about the incident at the time, I didn’t feel relieved. I felt conned. Not by any of the people we dealt with…everyone was genuinely concerned and trying to help…but rather by a system that had gone horribly wrong for us.
Clearly, I needed to understand how it went wrong so I could navigate my own health scare differently. I started researching. What I discovered dismayed me. First, I learned that the PSA test isn’t even FDA-approved for cancer screening, and the fact that it’s been widely deployed for that purpose has been the subject of controversy for over twenty years. The jury is still out on whether the benefits of mass testing justify the resulting high rates of over-diagnosis, false positives, and over-treatment.
Then I moved on to mammograms and found some equally disturbing news. Mammography neither prevents nor cures breast cancer and, while there does seem to be a modest benefit in decreasing mortality, the length of time screening actually extends lives has yet to be determined. Yet estimates for false positives run anywhere from a conservative 60% to a radical 90% of all callbacks, and some say over-diagnosis of breast cancers that would have regressed on their own may run as high as one in three. Over-treatment is rife. But the harm caused by all this is only just beginning to be studied.
Now, there are a lot of people who feel that if even one life is saved by all this over-doing, then any harm it causes is worth it. And I really appreciate the fact that they value life that highly. Because I do, too.
However, being one of the harmed myself now, I can’t help but feel some reluctance to continue the project. While I’d dearly love to help save that one life, too, I can’t afford a descent into depression every time the system makes one of these frequent mistakes.
So with all this on my mind, for the last six months I’ve been considering what other course I could chart for myself; researching, sifting, weighing, and waiting for the voices battling in my head to reach some kind of consensus. On the one shoulder I’ve had all the aggressively pro-mammogram voices screaming, Go for the call back, woman! You could die! You could DIE!! While on the other shoulder I’ve had my own voice warning, Careful Dia. You could easily slide into a depressive episode here that you can’t climb back out of.
(BTW, for those of you who asked what I meant by exercises for developing emotional endurance, this is an example. I had to sit and hold hands with some incredibly uncomfortable, even frightening emotions while waiting for my eventual answer to put in an appearance.)
Then this week, I suddenly remembered a choice I made seven or eight years ago about dying that immediately and completely put all the voices to rest. In her book Talking About Death Won’t Kill You (great title, no?) Virginia Morris offered a question to use when trying to talk to elderly parents about end-of-life choices. She suggested we ask them:
If something happens and I wind up having to make medical choices for you, would you rather I erred on the side of doing too little or doing too much?
First let me say, this question is worth its wait in gold. I kid you not. I’ve posed it to a lot of different people over the years and the answers I received have frequently surprised me. I think this one question alone could save a boatload of suffering, if everyone only knew and asked it.
But back to what my own personal answer would be if I was asked, the instant I heard the question it was a no-brainer. If anyone ever asked me, I’d tell them to definitely err on the side of doing too little. Always. I’m just not wired for the game of brinksmanship involved in trying to grab as many extra moments as possible at the risk of getting hopelessly entangled in the medical interventions that make them possible. While that kind of extra time is worth the risk for some (particularly those with small children or other dependents who still need them) at this point in my life it certainly isn’t worth it to me.
It’ll be enough for those who love me to know that I have no qualms about giving up extra time…years if necessary…if it means being able to live a full and vibrant life, journey through a meaningful dying time, and then die a peaceful, simple death at home surrounded by people that I love.
So. What does this understanding I’ve come to about the end of my life have to do with the current choice I’m facing in the middle of it? Well, as you’ve probably figured out by now, it’s essentially the same question, only in a different situation.
Faced with a questionable mammogram but high rates of false positives, would I rather err on the side of doing too little or doing too much?
And as soon as I realized what the real question was, I immediately knew the answer. I’ll choose for the least medical intervention possible, because that’s who I am. It’s actually the same choice I’ve been making my whole life, only without realizing it. Clearly, it’s the one I’m most comfortable with.
It’s why I gave birth to both kids at home and navigated two decades of depression without antidepressants. It’s why, when dealing with any illness or injury, I start with the least invasive treatment first and then work my way up from there. It’s why I’ve spent so much time exploring less-invasive forms of medicine to supplement my use of modern medicine. And I think it may even be part of the reason why I was so drawn to work with hospice; because it’s the way to die that usually involves the least amount of intervention.
The whole realization was kind of blinding. I mean sure, I’d been hoping for some kind of resolution but I certainly wasn’t expecting an answer that big. Suddenly my entire life, as well as a huge chunk of medical decisions I’m going to have to make going forward, just got a lot simpler. And why? Because of something I learned about myself while considering how I want to die of all things.
That’s the surprise dividend I mentioned. Not bad, eh?
So what will I do about the current situation going forward? Well, I’ll practice weekly home breast exams and watchful waiting until my next check-up in December. Then I’ll discuss the whole thing with my doctor and get his input on where to go next.
And then (this is unrelated but something I’m kind of excited about)…if he’ll let me…I’d like to initiate our first conversation about how I want to eventually die a good death and see if I can get him on board with talking about the whole idea. (I don’t think it’ll be a big leap. Dying is totally the topic on the table as soon as you start talking cancer screening.) I like Dr. R. He’s a nice guy and a good doctor and if he’d be my primary till the day I died, I’d be happy. We’ll have to see if I scare him off though. I’ve never done this before and don’t really know what that kind of conversation is supposed to look like, but still. There’s no time like the present to try, y’know?
copyright Dia Osborn 2011
Update: 10/10/11 Looks like I’m not the only questioning what’s going on. New recommendations are being mulled over for PSA tests. See following article for details.
PSA Exams Should End in Men Without Cancer Symptoms, Panel Says:
A draft report, released today by the Health and Human Services Department’s Preventive Services Task Force, recommends against so-called PSA tests for men who don’t have symptoms that are “highly suspicious for prostate cancer.”
I’ve very recently gone through a cancer scare. I know where you are coming from.
In my case, the only real way to ensure the ‘lump’ wasn’t malignant and agressively spreading throughout my body was to have surgery to take it out – then have it biopsied.
I put this off for as long as possible until even I had to admit that it surgery was the only way forward. The pressure from loved ones was enormous and well meant but was an extra burden in a way. The NHS treatments, doctors, nurses, diagnostic system here were exemplary.
This whole thing is ultra personal to whomever it’s happening to and I never really knew how I’d react until doctors started talking about survival rates etc.
Half the doctors I saw were telling me the worst, the other half erring on the side of optimism. The whole thing was about as draining an experience I’ve ever been through (for the past 10 weeks) and it’s STILL draining even though the biopsy results showed the tumour to be benign and (short of a spherical part of me) I’m now clear.
I’m not the most jolly of chaps at the best of times and fight depressive phases regularly, but I’ve come to realise that, In my case, the whole experience has been a bit of a catlyst for some serious changes needed in my life (something quite common apparently).
I’m so glad your hubster got the all clear with his prostrate, even if you’re still angry about it. I’m sure the anxiety has taken its toll emotionally on the pair of you. I hope you get some good news re your mammogram (which I hope you go ahead with btw but ultimately all of that is up to you and no one else).
Wishing you all the best.
Wow, Dia. This post leaves me breathless with confusion and indecision. I value your perspectives about life/death more than anyone else I know. But I’ve never been good at acceptance, complacency, or patience, so it is hard for me to imagine your choice. I want to scream at you, because I don’t want to lose you…(strange since we’ve spent less than 6 hours in the same room together.) But I must respect your wisdom, you careful analysis, and your decision. I look forward to learning more from you as you negotiate the next stages….which will always go on and on…the next stages could last another 40 years…who knows? All I know is that I admire your honesty and your ability to articulate the process you’re going through.
I have nothing to offer you but my humble respect. Would that it were more.
It’s really hard, in an age of such massively standardized care, to carve out the necessary path that’s uniquely suited to each person. We all tend to get swept into the One current and once in, it can be near impossible to climb back out again. I think that was one of the greatest gifts (shit…I’m always saying that. There were so many great gifts!) I received from hanging around the dying. I got to see and compare the actual outcomes of a lot of past and current standardized medical recommendations. It was eye-opening to say the least and my perspective expanded considerably. Thanks for the respect, Linda. I’ve always traveled off-trail in my life, and I can’t turn into somebody else now just because of this. None of us can turn into somebody we aren’t. (And anyone who’s trying to, has a far bigger problem to deal with than just a health scare.)