Thread Drift

[goldfinch]

It still is all about the science and the evidence. Yes, there have been strides in the last 50 years, especially with heart disease. There are many, many examples. Surgery has progressed with less invasive procedures with even hysterectomies done laparoscopically or rendered unnecessary by other medical treatment. Look at diabetes. My spouse is Type 1. In the 50 years he has had the disease there have been huge strides in treatment. New forms of Insulin. New delivery systems. Injections of Glucagon to rescue him from an insulin reaction. And maybe most valuable of all, the ability to test your blood sugar. Science brought this about, tradition did nothing. Show me the strides in altmed. I see none. Put it to the test. Otherwise it is meaningless or worse when people forgo what works or gives them better odds for what does not work at all. I know a woman who died of breast cancer. Breast cancer often can be treated successfully. Chemo is poison but the harm can outweigh the risks. She instead delayed standard treatment for a so called natural cure. She died what I believe was a needless death.

I too am critical of drug companies. I used to lobby for various health care reforms. Not all lobbyists are industry shills. I strongly supported the registration of all drug trials. I pushed for the funding and publication of replication studies. I believe that all data that comes from government funded research should be public. I supported government funding of research as it tends to have less bias than industry funded research. I like Ben Goldacre. He criticizes what needs to be criticized. Including altmed.

The goal is to improve medicine, not throw it away.

[OakLeaf]

Show me someone who is immortal as the result of north/western medicine before claiming anyone's death was needless or preventable. Every death is necessary. No death is preventable. Many deaths are unpleasant, but it's insane to intentionally make death more protracted and more unpleasant. And I am not throwing away one nanosecond of quality of life in the quest for miserable, debilitated immortality that is invasive medicine.

[Catrin]

Show me someone who is immortal as the result of north/western medicine before claiming anyone's death was needless or preventable. Every death is necessary. No death is preventable. Many deaths are unpleasant, but it's insane to intentionally make death more protracted and more unpleasant. And I am not throwing away one nanosecond of quality of life in the quest for miserable, debilitated immortality that is invasive medicine.

Hear ye, hear ye! I second this heartily.

[goldfinch]

Show me someone who is immortal as the result of north/western medicine before claiming anyone's death was needless or preventable. Every death is necessary. No death is preventable. Many deaths are unpleasant, but it's insane to intentionally make death more protracted and more unpleasant. And I am not throwing away one nanosecond of quality of life in the quest for miserable, debilitated immortality that is invasive medicine.

So would you forgo chemo if you got breast cancer?

We don't need the strawman of immortality.. Did I say anything about the quest for miserable, debilitated immortality? I too do not want a treatment that is unlikely to work and will give me lots of pain. But my friend who died without treating her cancer easily could have had 20, 30 or more years. Another friend who did have a double mastectomy and went through a year of chemo and radiation now has lived 10 years and has a very low chance of her cancer reoccurring. She certainly has no regrets of using unpleasant, invasive, treatment.

My father had unpleasant and invasive treatment for TB in the 1920s, pre-antibiotics. He survived and lived for many more years with no regrets about having a lung removed, his ribs around that lung removed, and living in a Sanitarium through his teenage years.

Some treatments are unpleasant yet yield good results.

But I do agree with Oakleaf's dismay over end of life care. There is lots to be done on that level. There is a mix of family needs and denial with the drive to do something that can end up with the system doing too much at great economic and personal cost. A study was done looking at how doctors die and far less "state of the art" care was done. We can learn from that work. End of life choices need to be carefully thought out ahead of time. It isn't easy. For example, you likely want to be ventilated if you have pneumonia, waiting for the antibiotics to work, are are expected to survive. But you might not want to be ventilated if you are dying and the pneumonia may simply hasten your death by a bit.

[OakLeaf]

I would 100% forego chemo. And surgery. And I've already made the decision never to be screened and, should I find something "suspicious," never to have it investigated, except for skin lesions that can be removed very simply. Take a look at the rates of "complications," i.e., the permanent devastation to quality of life. Everyone has to make her own decision, obviously, but people need to make informed decisions, and when information about complications is so diffuse, that's extremely time-consuming, technical and difficult.

If a treatment truly yielded good results, then obviously I would weigh the duration of the impairment of quality of life, against the likelihood of good quality of life returning in the near future. But most invasive treatments at best substitute one impairment for another.

Diabetes is a perfect example. Yes, treatments have gotten ever more convenient - and ever more expensive - and ever more toxic to liver and kidneys. At the same time, diabetes rates continue to skyrocket, and no serious efforts are being made toward prevention. If medicine were truly divorced from its profit motive, the situation would be reversed - fewer and fewer people would get diabetes, even if it were at the cost of poorer treatments for those who still did.

[redrhodie]

I would have surgery and radiation again in a heart beat. It wasn't that bad. I'm doing really well, and feeling great. Knowing there was this thing growing inside me, and not removing it, would have been way more stressful. My bf's mom had a double radical mastectomy 40 something years ago, and is still living.

My friend's mom's breast cancer was stage 4 when she found it. It had already spread to her bones. She's lost her lower teeth and part of her jaw. She is no longer able to sing (she was an opera singer). She is in a lot of pain. She still has life left in her, but is beginning to suffer. She can't do most of the things she loves anymore, but she is not ready to die. She still has a positive outlook and loves life. She wishes she had caught it sooner.

[OakLeaf]

(((((red))))) That's the thing - everyone does have to make her own decision, and the fact that my choice is different from yours is in NO WAY a judgment on your decision. I'm glad you had access to the treatments you chose, and although I'm sure we both wish they were more comfortable and less debilitating, I'm very glad that you're happy with your decision. I mean it. I think really, being comfortable with the decision is even more important than being comfortable with the treatment.

[Crankin]

I don't really want to get into this discussion, but I do mostly agree with Goldfinch. We have a lot to do in the area of end of life decision making/care. But, in the end, one may never know how you will feel. My mom had a DNR/living will, but in the end, every time my brother asked her if she wanted to keep going during her last crisis after a liver transplant, her answer was yes. She was 67 and she emphatically was not ready to die. Of course, when the last thing didn't work, my dad and brother made that decision for her.
And, yes, like Oak states, we wouldn't have to deal with a lot of these decisions, if we actually did preventative care. But, that extends to the consumers, too, not just medical professionals (disclaimer, I am one of them, though thankfully, not a doctor!). Many people just don't take responsibility for their health, even when they have insurance. We all know how hard it is to get people to exercise and eat healthily. I don't want to go off on that tangent, but at a certain level, if people refuse to use the things that we know will work to avoid actually getting diseases like diabetes in the first place, then I am not sure what we can do. This is an area that really interests me, because so many people have distortions about health, fitness, and just being overall well in mind and body. I see it every day in my work, even though I am dealing with mental health. For example, it's quite difficult for me to get people to actually use/practice things like breathing, visualization, muscle relaxation, or exercise that are proven empirically to reduce anxiety and depression. I tell them I am writing them a "prescription," just like the doctor who gives them medication, but this comes with no side effects. Let's just say, it's very hard to get this point across, even with people who are well educated. My own friends would rather take a pill.
I would never refuse treatment for anything, unless I was told I had like two days to live. However, I wouldn't be heroic, either, after a certain point.

Today is Yom Kippur and I decided to repent for my sins by going on a bike ride . I needed some space; I had to hospitalize a 6 year old last week and I have two teenagers who are suicidal/in crisis. I decided to make it a destination ride, but I did an 11 mile loop, then I went to Trader Joe's where I had a trauma, because they moved the nuts and cranberries! So, I rode 15.5 miles, I feel better and now I can relax.

[indysteel]

(((red))). Well put, Oak. I very much agree.

I often wonder if part of the difficulty for those with terminal illness or illness that ultimately progresses to terminal, is knowing how far down a certain treatment road they really want to go and how and when to make that decision. It often seems to me that medical intervention takes on a life of its own. Once you start, it's hard to know when or if to stop, even when the writing is more or less on the wall. My husband's friend's mother brings this to mind. She's been on some form of chemo and/or radiation for years and despite the fact that her prognosis has been bad for a long time, she kept with it, treatment after treatment. It wasn't until late last week--after a botched biopsy--that she reached the end of her rope. Sadly, I don't know that any of her doctors helped her navigate that decision anywhere along the way.

I may have linked to this before, but this article from the New Yorker gave me much food for thought when I read it.

[OakLeaf]

This goes more to my original observation than to where this thread has drifted to, but here it is, since I've been thinking about it all afternoon.

Of all the safe, effective, time-tested herbal medicines in use today, there is one that's way, way more likely to be prescribed by US doctors than any other one.

Under US federal law, that particular herbal medicine is illegal to buy, sell, or grow in one's own backyard.

And the reason it's the most likely to be prescribed is BECAUSE it's illegal, and because of that, the pharmaceutical companies haven't been able to isolate one or two of the compounds in it, separate them from the other compounds in the plant, synthesize them, and monetize them, then bribe doctors to prescribe it with branded geegaws and free CME.

If that isn't irony, I don't know what is.

[salsabike]

I may have linked to this before, but this article from the New Yorker gave me much food for thought when I read it.

I think that is the best and most thoughtful article I have ever read on this, and I've read many. Thank you, thank you, thank you. It is a very active topic in our house right now and this article is a huge help.

[jobob]

I think that is the best and most thoughtful article I have ever read on this, and I've read many. Thank you, thank you, thank you. It is a very active topic in our house right now and this article is a huge help.

ITA, this is an excellent article. I'll show it to Lee sometime soon, we've already started to grapple with some of these issues with his dad. Thank you for posting it, I think it'll be helpful.

[indysteel]

You're very welcome, salsa and jo. I'm glad you found it helpful.

[OakLeaf]

Indy, that is a really good article. I'm not sure reading it would've broken through my family's denial, but it's somewhat comforting to know that so many families are so deep in denial when they enter hospice.

For me a really important point is this one: "Can mere discussions really do so much?" - not only comfort patients, but extend their useful lives. Parallel that with the recent study on doctor empathy in diabetes care. Empathy and conversation, of course, are the most basic forms of energy healing.

[Sky King]

reeling, reeling Reading the New Yorker article flooded me with emotion and memories, thanks Indy (sorta )
The story of Sarah, for the most part, is the same story I experienced with my mom. My mom did not want her cancer to be her end. Her doctors were much like the Dr's in Sarah's story, wow.
Needless to say, my Mother refused to accept hospice because to her that meant she was giving up. She died in the hospital, which would have not been her original wish. She was in a morphine induced coma okay have to stop as it dredges up way to much.

Death and dying, can't be avoided but I have never met anyone who has said, "sure, I want to die a painful death from Cancer." Am sure Mimi would have many thoughts as well.
Thanks for all the great insights and opinions. What a great discussion.
stacy