Thread Drift

[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

[Wahine]

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

Thank you for that link. It was hard for me to read having gone through end of life decisions with several family members. But it also made me feel really good that I never let people skirt around the reality. I was the only one that my father spoke to straight up about dying. It was because I didn't avoid the topic. I had a cousin whose children did not want me around because my realistic "views of her cancer were not helping" and yet it was me that my cousin most wanted to discuss things with. I hope that someday we can all face our mortality in a way that let's us choose how hard we want to fight.

ETA: I have a patient right now who seems to be stuck in the denial of death and is being swept up in the forces of intervention. That article makes me want to call her up and ask her what she really wants. What does she really see happening? I know her family won't do it. They are way to invested in the idea that accepting terminal illness is failure somehow.

[Crankin]

While I am pretty sure I wouldn't get mad if someone asked about this stuff if I had a terminal illness, I will be blunt and come out and say that I hate even thinking about death. It scares the sh!t out of me, even just normal die of old age death. I don't even want to get old, frankly.
I come from a family of hypochondriacs and I've dealt with this by ignoring death completely. Most people on both sides of my family die at around 90. There's been few "bad" diseases, save for my mom. My dad has had prostate cancer for 25 years. He's 87 and still quite active. On the other hand, I've dealt with death of others (including my first baby) stoically and been fine. In fact, people accuse me of being "cold" about the subject.
I've had some tell me I have this attitude because of my religion.... sigh. Like if I was waiting for my eternal reward, I would welcome death.
In the end, I doubt I would want heroic measures if I was in the state of the people in the article. I know my DH has strong feelings about no intervention.
I hated that article when I read it in the magazine and I didn't like re-reading it, either. But, I read it.

[shootingstar]

I knew my partner's mother well for over 16 years before she died.

At her wishes, she was cremated. So when my partner had to transport his mother's ashes to her desired resting spot in Ontario....he packed his panniers and included the urn of ashes. He rode up a 10% long hill and another hill to get to the airport to fly from Vancouver.

It was appropriate and poignant ....son-cyclist riding with the care and final weight of his mother's ashes on a long hill in a journey.... Ride with me in my journey, all the way to say good-bye.

I do have the photo of him climbing the hill on a sunny fall day on his way to the airport. I hope as cyclists here you are not freaked out.

[Amira]

I knew my partner's mother well for over 16 years before she died.

At her wishes, she was cremated. So when my partner had to transport his mother's ashes to her desired resting spot in Ontario....he packed his panniers and included the urn of ashes. He rode up a 10% long hill and another hill to get to the airport to fly from Vancouver.

It was appropriate and poignant ....son-cyclist riding with the care and final weight of his mother's ashes on a long hill in a journey.... Ride with me in my journey, all the way to say good-bye.

I do have the photo of him climbing the hill on a sunny fall day on his way to the airport. I hope as cyclists here you are not freaked out.

Freaked out? No, that is so beautiful and appropriate and loving. My 48 year old brother passed away very unexpectedly in March 2011. He was a professional snowboarder and adventurer and he was living and training and coaching in Tahoe at the time of his death. We had him cremated; in part, my sister and I were sure that was what he would have wanted and, second, in more practical terms it was the most reasonable and economical way to handle things. He was a free spirit and, while I know this was unconventional to my 80-something parents, we divided up his ashes and gave small amounts to many of his friends, who have taken him to all the mountains he loved and the beaches he surfed all along the Pacific Coast. Friends took him to special, meaningful places they shared and a few took him to places he wanted to go - including Alaska, New Zealand and the summit of Mt. Kilimanjaro (on his 49th birthday). I had a friend take some to the first place he loved in the mountains - Philmont Scout Camp in New Mexico. He's at Mt. Hood, in the terrain park they named for him. He's at Vail, in an out of bounds area we ski by and 'talk' to him. I 'took' him to the snowboard nationals (two weeks after he died) and again this year, leaving some ashes at the finish line of his favorite event and under the podium. I'll take him back next year, as his friends will compete in his favorite event to mark the last year he would have been eligible to race in that age class and he'll be at the start line, finish line and podium. He even rode around Tahoe with my sister and I two weeks ago (in our seatbags) and, knowing he never met a finish line he didn't like, we left him at the finish and in the lake. I still have ashes that will go on 'adventures' with us for a long time. It may seem weird, but honestly, it's been pretty cathartic to think of him out there in the places he loved. I hope someone will do that for me one day. I cannot imagine a conventional funeral any longer.

[zoom-zoom]

He even rode around Tahoe with my sister and I two weeks ago (in our seatbags) and, knowing he never met a finish line he didn't like, we left him at the finish and in the lake. I still have ashes that will go on 'adventures' with us for a long time. It may seem weird, but honestly, it's been pretty cathartic to think of him out there in the places he loved. I hope someone will do that for me one day. I cannot imagine a conventional funeral any longer.

I love knowing that you guys did that, after the fact. What a beautiful day it was to honor your brother's life like that.

I also plan to be cremated. Hopefully my loved-ones who are here after I pass will do something cool and meaningful like you guys have done for your brother.