A place to talk death and dying issues
Comments
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Jaycee, that really is a wonderful letter you wrote. I agree with KBL about sharing it with family and friends. You explained our experience very well.
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Jaycee, that's your most powerful letter so far. It details so much of the thought process a person with terminal illness goes through and makes many great points.
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Thank you for all your kind words. I'm learning a lot. I used that "easy way out" phrase because in a previous committee meeting, one of the opponents used that as a reason to vote against the bill. The arguments against it were absurd. One guy said that if the patient doesn't use the meds, a kid could get them and kill themselves. He may have introduced an amendment for that. (I need to watch the recording again.) One woman was really worried about doctors' liability. ??? The bill is very clear that doctors are protected whether they participate or not.
I need to make the emails shorter. The legislators looked really busy. At least they tried to. One guy just sticks in my mind. He wore a very spiffy three-piece suit and stood up with this hands in his pockets and spoke like the world depended on his words. He voted against the bill.
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Jaycee, you have all the support here, please let us know what we can do for you. Those idiots must understand that what is the point of keeping a human in too much pain while there is no cure or some sort of stability (qol) afterwards, many real life examples are available to support this argument. I started thinking they must make $ from hospice/ care facilities??? what I see especially recently every baseless disagreement comes from a specific group who feel they know better- like that 3-piece-suit guy! why? Money, power?? Besides all of this, interesting to learn about heritage land story in NM.
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The easy way out? That's a laugh. Easy for that guy to say! He's in favor of people suffering? "You just need to stand a little more pain. Come on you can do it!" Why? It's not a contest of who can stand the most pain. The same ridiculous arguments were made here in Colorado, and none of those fears have been realized to my knowledge.
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Jaycee49, that was a great email, and I echo everyone's support for all the hard work you're doing. My husband, who is dying from mesothelioma, wants to utilize the End of Life Option (that's what it's called in CA) when he's ready, and there is of course NOTHING easy about any part of it. It's so insulting that anyone would think that choice is easy. To HAVE the choice is the point!
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Jaycee -can you potentially bold the really critical bits? I do that on a lot of documents/presentations I give to more senior people so folks can scan and quickly get the gist of what I am trying to communicate.
I would hate to lose the length as you write well and passionately, but it would give the key bits some pop!
Alternatively, look to breaking up the paragraphs into 2 or 3 lines (max), similar to a sales letter, could also work.
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These ideas are good and were suggested to me along the way. I am long-winded. Can't help it. The lawyer asked for photos and sub-headings. I did some. Email#2 went out to most with a photo of me at the end. (God forbid) I have not had a haircut since the beginning of the pandemic. I look 100. I will consider the bolding idea. I may have somewhere. We start a new round with the senate soon. I will be reworking the emails then.
I just listened to the recording of the House debate. They need one of those hook things to remove people from the room. Or put them in a closet. I took notes. There were some good ideas. Maybe a mental health consult on all cases which is not a provision now. Only MDs, PAs, and NPs are included as providers. As we know, some of them are idiots.
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Good job Jaycee. Love your work
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Jaycee, I just wanted you to know you have our support. I think your fighting for a good thing. I found out in my state the bill which has been introduced 3 times since 2016 was put on the back burner because of covid. I hope they will take it up again. Some people arguing against it view it as suicide. I do not. The person requesting it is already dying naturally, this just gives control over how it plays out.
SF-cakes, I'm so sorry for what you and your husband are going through. I agree with you there is nothing easy about making the choice.
Easy way out? Wow, just wow. Those are the words of an ignorant person. Also, that argument they used about someone getting the meds like a kid if the person didn't take them and the kid found them. Remember that video of that woman i shared who did DWD in california, the medication had a 2 week shelf life that she took. Is there anyway to know whether the type of medication they allowed to do DWD would make a difference getting it passed? (Just thinking out loud).
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The first senate committee meeting is tomorrow. My three emails went to all members of that committee over this past week. I wanted to write a new one but lost motivation. I realized that all the debates (lots of op-eds and opinion pieces in all the NM papers) are between those opposed (who are not dying) and those in support (who are not dying). I feel like I am on the outside looking in, a true outsider. Why would they listen to me? No member of the legislature is dying. They keep telling these stories about holding their mother's hand while she died. That's not the same as dying yourself. It would piss some people off if I said any of this to them. I have empathy but I feel like I am on a different planet, of a different species. They are ignorant of the whole medical system mess and it cannot be explained in a short email. I'll keep sending these three emails I have already written and hope for the best, whatever that is. At least tomorrow will be exciting. Another vote.
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Jaycee, fingers crossed for a good result in the senate committee. I bet you are exhausted talking to their brick wall, but so be it if you piss someone off. Anyone offended deserves it IMO! They need to walk in our shoes.
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The committee didn't finish meeting and voting until about 9:30 PM. I watched a recording of it this morning. The bill passed this committee, 5 for, 3 against. The senate committees are smaller (8 members) and this was tight. For some reason, voting groups are always an even number (house committees were 12, senate committees are 8, the full house is 70, and the full senate is 42) so the possibility of a tie is always there. I asked how ties are broken but got a very nebulous answer so I let it go. No ties so far. The opponents give their reasons for voting against and it is always obvious that they have no experience with the healthcare system. It is very hard to explain all the things we know from experience. Like how doctors, nurses, PA's, and NP's can be jerks. I could tell them stories but have refrained so far. Maybe that is not the best approach. Many doctors support the bill. I wouldn't want to alienate them. One more senate committee then the full senate.
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Jaycee I appreciate your hardworking and thank you so much for letting the bco community know, difficult steps, continoushard working. did that mean -5 votes- one step closer to our goal? let’s be hopeful for the last committee voting. (((Hugsss)))
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The last committee vote was 5 to 3 for the bill. We still have one more committee and the whole senate. The whole senate is where it was defeated two years ago. NM does a very short legislative session in even years (2018, 2020, 2022) where they just do budget items. In even years, the session is longer (but not that long) and they do all kinds of items. Like this year.
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Last committee is scheduled for this weekend. I had no idea there was a time crunch. They have to finish by the end of the session on March 20. Whatever doesn't get heard by then is dead. They still have the full senate. That inspired me to write another email. And I finally got some sleep.
email#4
Hi. This is Janet Smith again, a stage IV cancer patient, supporting HB 47. I have been treated for cancer for seven years. I have been sitting in the "chemo suite" for a few hours at least once a month for SEVEN years. (Chemo suite. Sounds luxurious, right? It's not.) Sitting there is boring. I listen and I hear things. There are only curtains separating the patient areas so it is impossible not to eavesdrop on conversations among patients and their visitors. Several legislators who oppose HB 47 have brought up coercion by family members as an argument against the bill. Do I hear coercion? Yes, I do. But the coercion I hear is the family trying to convince the patient to try one more treatment. To hang on a little longer. To tough it out for THEM. Getting to six months to live is a battle in itself. (That is actually my biggest fear right now.) By the time you are in the final stages of a terminal disease, you have already suffered mightily. I've never heard a family member even hint at the idea that it was time to quit. So yes, there is coercion but not the kind opponents are suggesting.
And then there are my many many online friends. I talk to up to ten people per day, all stage IV cancer patients. I probably know close to 100. What is most unbelievable to me is the HOPE. There is so much hope. They always think there is another drug in the "pipeline" that will come along and save them or at least give them a few more years. Families don't discourage this idea. Doctors don't discourage this idea. And they shouldn't. But if a patient gets to the point where they are asking for the option to die in peace, they have already suffered enough. They have listened to the positive thinking for long enough. Now, the positive thinking is getting delusional. Patients know when it is time. Trust them. When they ask for this option, it needs to be available.
Please pass HB 47.
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Jaycee49, your email is beautiful. Crying here reading it.
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Jaycee, you represent us Stage IV well. Your email is 100% truth.
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Another great email, Jaycee.
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Jaycee49- more good truths. Fingers crossed
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Jaycee,
Superb.
Tina
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Wonderful, heartfelt insight into the realities of metastatic breast cancer. I hope it blasts the committee members off their endowed chairs of can kicking. We are behind you all the way.
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Powerful words, Jaycee! I hope they’re listening!
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Jaycee, another well-written email that expresses the truth exactly. I too hope they are listening!
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I've been putting this off but it looks like the bill will not be heard by the last senate committee and is going to die. There will probably not be time to hear it in one more committee and the full Senate floor. I had no idea that they could just run out of time. It seems that the committee chairs schedule what is heard in their committees. The chair of the last committee is actually from my area. We had the radio on one morning this week, maybe Tues, and I heard an interview with that chair. He was all excited about a bill on legalizing marijuana. Working very hard to pass it. No mention of the death with dignity bill. So, politics. At least (ironically), if I have pain in the dying process, I can use MJ products legally.
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I’m not much of a poster, however I have a few topics I follow and this is one of them.
I wanted to share a book that just read. That Good Night: Life and Medicine in the Eleventh Hour. I found it well written. I understand it may not be for everyone, but do feel it’s relevant considering some of the recent discussions on the thread. I am hoping my close family members will read it as well. I haven’t had end of life discussions with them yet, but am getting myself prepared to do so,and this book might help everyone involved to understand and respect my decisions.
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Thanks so much, MissMonty. I just bought it and it is in my Kindle library. The last one I read is called The Inevitable, kind of a history of the death with dignity movement. I'll look through my library and recommend some more but I am bad remembering titles.
I talked to my palliative care team this week and my doctor had some residents with her during the call. (It's a teaching practice.) They wanted me to explain why I support medical aid in dying. I did a quick summary and asked if they would like me to send them my emails to the legislators. Yes, they did. Finally, an audience who will actually read my emails.
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Jaycee, I hate politics, please do not give up, we are in this together, together, together
I love this from your writing:”the positive thinking is getting delusional“ . Every word of your email has deep meaning for us, I feel sorry for that little chairman for lack of understanding.
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Jaycee -I will check that one out. Thank you.
As I mentioned, I have been following along and I your advocacy is amazing. I hope the “powers that be” get get their act together. Good luck with everything.
I’m in Canada and we have a bill here, Medical Assistance in Dying. It is not perfect, but it is evolving for the better and allowing people to make their own decisions and the right to die with dignity on their own terms. It is something I am planning to put in place.
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How disheartening after all that effort to come to this end. With government so completely out of control we have little recourse to effect change, but you have certainly blazed a path. Well done.
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