They recently changed breast cancer screening guidelines, reducing screening in areas where it hasn't been proven to reduce mortality.
What bugs me about this is they're only looking at mortality. The reason why I'd be particularly concerned about breast cancer as compared with other cancers is I don't want to lose my breasts. I like my breasts and I want to keep them. If I'm going to be moved to take any particular measures to avoid breast cancer, it's going to be because I want to keep my breasts, not to avoid dying. However, we don't have the information to make that decision. They didn't look at whether early detection reduces the need for mastectomies, or, for that matter, chemotherapy. (I'd also very much like to keep my hair and continue my 17-year non-vomiting record.)
This is similar to my attitude towards GERD. I've been thinking about it pretty much non-stop for the past three months, and I've concluded that I'd very much prefer being able to eat exactly what I want for 100% of my life, even if it means my life is much shorter. I'd rather die at 50 having eaten exactly what I want every single day than live to 100 without eating anything that makes me happy. (Unfortunately, this isn't quite an option, because the disease manifests itself as difficulty eating. If I get esophageal erosion or Barrett's esophagus or esophageal cancer, I will be physically incapable of eating pleasurably.) However, the general medical approach assumes that dietary restrictions are a perfectly reasonable first step in preventing what might ultimately develop into esophageal cancer, and I can't find any sign that medical science is even thinking about working to eliminate the need for dietary restrictions.
As a patient, I'd really like to have the option of choosing to have my medical care not focus on keeping me from dying, and instead prioritize getting the most out of whatever time I do have. (And I want to be able to define "getting the most out of" for myself, so that it includes such fripperies as pleasure and vanity.) This would require not only the consent and cooperation of my medical team, but also the consent and cooperation of medical science. My doctor can't change my breast cancer screening protocol to maximize my likelihood of being able to keep my breasts unless medical science does research into whether screening helps avoid mastectomies, not just prevent death.
At this point, some people reading this are probably thinking "But...I want to avoid death!" And I know that with breast cancer awareness specifically, some people are really bothered by campaigns that focus on the fact that breasts are awesome rather than the fact that cancer can be fatal. So I'm not saying that patients shouldn't be able to prioritize survival and longevity. I'm just saying that we should have a choice. If you want to live to 100 no matter what, medicine should help you. If I don't have a problem with dying younger because it will spare me Alzheimer's, medicine should help me get what I want out of life.
From a disgustingly pragmatic point of view, allowing patients to deprioritize longevity might also save the health system money. Why pour resources into extending the lives of people who don't care if their lives are extended? (You might say "To keep them from dying of something complicated and expensive," but who's to say they won't die of something complicated and expensive decades later anyway? (Someone really should do research on that.)) There's the potential to save a few patient-decades of care with the full consent of the patients, and actually make them happier while doing so.
8 comments:
This is a really brilliant post.
I think it might also help people (insurers, health care providers, friends and family of patients, etc.) take more seriously the effects of health issues that don't usually lead to death. For example, I have endometriosis that has not responded to a lot of standard treatments (surgery, pain relievers, various forms of birth control and other hormonal treatments, etc.). At this point, a fair number of people -- doctors and non-doctors -- have sort of shrugged and gone, "At least it isn't fatal," and have occasionally recommended against additional pain relieving techniques because they could cause complications (e.g., stomach bleeding, liver damage, tolerance/addiction, incontinence, osteoporosis) down the line.
Which, I mean, I understand that those are risks. But at the same time, I'm balancing those future risks against the certainty of present (and seemingly long-term) more or less daily pain. I just would like to be able to prioritize according to my actual priorities, is all.
At this point, a fair number of people -- doctors and non-doctors -- have sort of shrugged and gone, "At least it isn't fatal," and have occasionally recommended against additional pain relieving techniques because they could cause complications (e.g., stomach bleeding, liver damage, tolerance/addiction, incontinence, osteoporosis) down the line.
Tori, I hope you actively avoid those people and try to find practitioners who don't do that!
I have a condition that causes pain, but from what I understand, nowhere near the kind of pain that endometriosis causes - and no one says that to me. I am informed of the risks of treatment, and I choose treatment, end of. Plus there are various ways of minimizing those risks that you mentioned.
Some people think pain is good for you and treating pain is a sign of weakness. Those people suck.
People think tolerating pain is c
I totally agree with you in principle, because we should all have as much control over our own health decisions as possible. But I also think it's a perspective that has a great potential to change with age. Eating the foods you want and dying at 50 may look very different at 45.
As with anything, people could totally change their approach if they change their minds. I doubt that would happen in my case though, because I used to prioritize longevity more, and as I get older and more experienced I find it's less important to me. (Much like how I used to want children but that urge went away as it became less theoretical and more of an actual possibility.)
If I change the 50 to 35, my initial emotional reaction is "Cake for breakfast every day! A glass of wine in my hand at all times!" The problem with the restrictions is depriving myself for The Rest Of My Life, and basically the only reason I do deprive myself of anything by any measure is when it's likely to improve long-term quality of life (by my own definition of quality of life.) If long-term considerations were not longer a factor, I'd find it liberating and would much rather enjoy the time that remains guilt-free rather than making myself miserable fighting my own mortality.
But I do respect the fact that not everyone has the same priorities, which is why I want patients to be able to define their own priorities.
As with anything, people could totally change their approach if they change their minds.
But only if their current priorities didn't foreclose on their possible future priorities. I guess that would mean regret, the way many people say "I choose to smoke cigarettes, hey, you gotta so sometime, what's the big deal"... then when they are older and get lung cancer or other smoking-related diseases, regret that choice and wish they'd been more future-minded.
I think that's the problem with longevity. Many people think they don't care about it until they don't have it.
That's why I agree with you on principle but don't think it would work in reality.
I find that very unconvincing because that sounds exactly like the arguments used by people who don't want me to be allowed to be sterilized.
Another thing about longevity specifically is, at least among the elders I know personally, people who live long enough to be called "elderly" all seem genuinely surprised that they've lived that long. My grandmothers are in their 80s, and if you'd asked them when they were younger how long they expected to live, they'd have said 60 or so. One of them did her retirement planning on the assumption that she wouldn't live to see 70, and it's becoming problematic now.
If this is indicative of a general pattern, it's possible that people who deprioritize longevity might end up living as long as they originally expected in the first place.
"I find that very unconvincing because that sounds exactly like the arguments used by people who don't want me to be allowed to be sterilized."
Yeah, I was trying to avoid that, but I suspected it would come out anyway. I never wanted children, and people always told me I'd change my mind... and I hated it, just like you. So I am sensitive to that, and I was trying not to go there.
I guess I view longevity - the mere fact of being alive - as a special case, since it is so final. If I had changed my mind about kids, I could have adopted (even though I knew I wouldn't change my mind).
Plus I just turned 50 and I've been utterly knocked out at how fast it came, how little I feel I have lived, how much more I still want to do and experience.
So that's colouring my response. But you're right. It's a personal choice and should be left up to each person, including the risk of regret.
Post a Comment