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#BTSM Transcript

Healthcare social media transcript of the #BTSM hashtag.
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See #BTSM Influencers/Analytics.

ProfileTweet
NCI Cancer Stats @NCICancerStats
12.7% of all #BrainCancer cases occur in people under the age of 20. Get more stats here: https://t.co/Cde67D0Mpf #BTSM https://t.co/jcXdYuR1Kx
Lisa O'Leary @lisaoleary524
Lisa here, GBM widow, NBTS advocate. Hi friends. #btsm
Enlightening Results 💡 @GraceCordovano
Hi #btsm! Grace, private cancer patient advocate, joining in from NJ. Kudos for tackling such an important topic tonight!
Charlie Blotner @CBlotner_
@BTSMchat Hi all! Charlie in Seattle, here. MSW student interested in #hpm, and 5 years post awake cranio for grade II astrocytoma. #btsm
Harley Helping Hands @HarleyHelps
@BTSMchat Here to listen....#BTSM Happy 2018 everyone!
Janet Freeman-Daily @JFreemanDaily
Hi all! Janet in Seattle, metastatic lung cancer patient/activist and a big believe in advance planning while we're healthy and happy #btsm
Liz Salmi @TheLizArmy
Liz here! Excited to join tonight's #BTSM chat. 9 year survivor or grade 2 astrocytoma. 2 craniotomies. 24 months Temodar. Seizures. Awesomeness. High-fives and dimples. https://t.co/2kZ6d8JSmU
Erica Robinson @eleighrobs
@BTSMchat Hey everyone! Erica here. Brain tumor survivor, @NBTStweets Advocate #BTSM
Dr. rer. pol.Sabine Schwab @Sabine_NJ
RT @BTSMchat: Welcome to #BTSM chat! Please remember to use the hashtag (#BTSM) in order to take part in tonight’s conversation.
Sean Sachdev, MD @SeanSachdevMD
@BTSMchat Hi all, radiation oncologist from Chicago #btsm
Advance Care Planning Australia @ACPAustralia
Hello from across an ocean or two :-) #btsm
Dr. rer. pol.Sabine Schwab @Sabine_NJ
RT @BTSMchat: #BTSM (brain tumor social media) is a patient-run, grassroots Twitter community and is not owned by any organization.
Charlie Blotner @CBlotner_
@JFreemanDaily So glad that you're joining us tonight, Janet! Always excited to see #lcsm and other community crossover, here. #btsm
Enlightening Results 💡 @GraceCordovano
@JFreemanDaily Hi Janet! Happy New Year! Yes, couldn't agree with you more! #btsm
Chloe Drew @ChloeDrew8
@BTSMchat Chloe here from Perth Australia here to listen and learn. Hello and warm wishes to all coping with brain cancer. Both carers and patients and all involved. Sending strength for 2018. #btsm
Enlightening Results 💡 @GraceCordovano
@CBlotner_ @BTSMchat Hi Charlie! Looking forward to a great discussion tonight. #btsm
Liz Salmi @TheLizArmy
@JFreemanDaily Great to see you here, Janet! #BTSM
Susan Hoffman @SusanHo96190170
@BTSMchat #btsm
St_Molly_AgentofChaos @Lifeiskitsch
@BTSMchat Molly. Grade 3, Anaplastic Astrocytoma. Left temporal craniotomy 10/16. Radiation 11-12/16. Chemo 1/17-12/17. Now (see pic). #BTSM https://t.co/2Kwea04Llw
National Brain Tumor Society @NBTStweets
#btsm NBTS is here.
Liz Salmi @TheLizArmy
@ACPAustralia Extra credit if you are from Australia! ;) #BTSM
Enlightening Results 💡 @GraceCordovano
@TheLizArmy Hi Liz! Great to see you here tonight. Happy New Year! #btsm
Liz Salmi @TheLizArmy
@GraceCordovano Glad you made it! #btsm
Matt Cotcher @MLCotcher
Happy New Year, y'all! Matt Cotcher here - 10 year ependymoma veteran (surgery in '07, surgery & radiation in '17). #btsm
Liz Salmi @TheLizArmy
@NBTStweets Aw, you guys are the best. *heart* #btsm
Charlie Blotner @CBlotner_
@ACPAustralia Very cool to have you here! What time is it over there in Australia right now? #btsm
Liz Salmi @TheLizArmy
@Sabine_NJ Dr. Sabine is in the house! #btsm
Harley Helping Hands @HarleyHelps
@BTSMchat Absolutely why I’m here. #BTSM
Enlightening Results 💡 @GraceCordovano
@TheLizArmy @ACPAustralia Don't you just love twitter?! #btsm
Amanda Nottke @amanda_nottke
Hi everyone, Amanda here. I'm an ASK Scientist with Cancer Commons, based in SF #BTSM
Charlie Blotner @CBlotner_
@WDMunn Hey, Doug! How's he doing these days? Tolerating Temodar ok? #btsm
Advance Care Planning Australia @ACPAustralia
@CBlotner_ It is 1pm Monday here in Melbourne. #btsm
Guy Lipof - גיא @Project2Program
@BTSMchat I'm Guy, husband of Susie who is a long term survivor of 19 years (G3 OA and G4 Secondary #Glioblastoma, #IDH1). I work on #IBMWatson. #BTSM
Dr. rer. pol.Sabine Schwab @Sabine_NJ
I'll be participating in the #BTSM tween chat tonight in case you wonder about my increased tweet volume ;-)
Liz Salmi @TheLizArmy
@sean_sachdev Thanks for coming back, Dr. Sachdev! Always look forward to your tweets. #btsm
Dr. Rebecca B. Riggins 🇻🇮👩🏻‍🔬⛵️ @Prof_Riggins
Becca from @LombardiCancer , GBM researcher #BTSM
Claire Snyman @clairehsnyman
@BTSMchat Wishing everyone a happy & healthy New Year! #btsm
RichVsMultMyeloma @richvsmm
Hai! Wrong cancer but interesting topic so hope you don't mind me lurking. #BTSM
Lung Cancer Sux @LungCancerSux
RT @JFreemanDaily: Hi all! Janet in Seattle, metastatic lung cancer patient/activist and a big believe in advance planning while we're healthy and happy #btsm
Dr. rer. pol.Sabine Schwab @Sabine_NJ
Hi All! I'm Sabine - AA3 survivor of 3.75 years and ABTA volunteer advisory council member. In 2018, I tweet daily about the life of a bt patient using #sabine365 #btsm
Advance Care Planning Australia @ACPAustralia
@GraceCordovano @TheLizArmy Yes, yes, yes! Twitter is an amazing platform. #btsm
Liz Salmi @TheLizArmy
I always dig it when @NCICancerStats rolls in to #BTSM with a PSA. (Just enough to be helpful without spamming.) https://t.co/49OOtTtEHt
Amanda Haddock 🧬 @AmandaHaddock
@BTSMchat A little late... my son , David passed from GBM. Now I run @DragonMasterFdn to help find better treatments and cures. #btsm
m bsmith @mbbsmith
#BTSM - committee member raising $$$ for brain tumor research #marklinderwalkforthemind
Charlie Blotner @CBlotner_
@richvsmm Advanced care planning is for everyone! We're glad to have you joining us tonight. #btsm
Enlightening Results 💡 @GraceCordovano
Did you know 👇👇 #btsm https://t.co/fCgRaw8zgr
Hold Your Head Up 💎 @HYHUTriangle
Hello, I will be listening in............. A great topic giving peace of mind for me and my family with "Advance Care Planning" This means dignity for me and having a voice if unable to speak. @KickBrainTumors #BTSM #BTSMchat Rachel🧠 👩🏾‍💻
Harley Helping Hands @HarleyHelps
RT @NCICancerStats: 12.7% of all #BrainCancer cases occur in people under the age of 20. Get more stats here: 12.7% of all #BrainCancer cases occur in people under the age of 20. Get more stats here: https://t.co/Cde67D0Mpf #BTSM https://t.co/jcXdYuR1Kx
National Brain Tumor Society @NBTStweets
Happening now, the #btsm chat on advance care planning. Check out this resource, even if you don't join our friends' discussion. https://t.co/BgSV8hb8f2
Liz Salmi @TheLizArmy
@AmandaHaddock @BTSMchat @DragonMasterFdn Glad you are hear, and doing amazing things in honor of David. #BTSM
Amanda Haddock 🧬 @AmandaHaddock
RT @NCICancerStats: 12.7% of all #BrainCancer cases occur in people under the age of 20. Get more stats here: 12.7% of all #BrainCancer cases occur in people under the age of 20. Get more stats here: https://t.co/Cde67D0Mpf #BTSM https://t.co/jcXdYuR1Kx
Kendra K @KMJtravels
RT @NBTStweets: Happening now, the #btsm chat on advance care planning. Check out this resource, even if you don't join our friends' discussion. https://t.co/BgSV8hb8f2
St_Molly_AgentofChaos @Lifeiskitsch
@CBlotner_ @richvsmm Yeah! @richvsmm is awesome! #btsm
Probably Dale @ProudJeremyI
#BTSM
Lisa O'Leary @lisaoleary524
T1 When you need to make those decisions, you might not be in a position to participate. Have a say. And relieve your loved ones. #btsm
Dr. Rebecca B. Riggins 🇻🇮👩🏻‍🔬⛵️ @Prof_Riggins
@AmandaHaddock @BTSMchat @DragonMasterFdn Hi Amanda! #btsm
National Brain Tumor Society @NBTStweets
RT @lisaoleary524: T1 When you need to make those decisions, you might not be in a position to participate. Have a say. And relieve your loved ones. #btsm
Dr. rer. pol.Sabine Schwab @Sabine_NJ
I'd want to share my personal preferences with my loved ones. #btsm
Heather 🇺🇸 @ZHeatherChamp
Hey. Am I late? What did I miss? #btsm
I Live Now Rachel 💎 @KickBrainTumors
RT @HYHUTriangle: Hello, I will be listening in............. A great topic giving peace of mind for me and my family with "Advance Care Planning" This means dignity for me and having a voice if unable to speak. @KickBrainTumors #BTSM #BTSMchat Rachel🧠 👩🏾‍💻
Lisa O'Leary @lisaoleary524
T1 My husband Patrick had no will, nothing set up when dx with GBM. Caused endless problems in family and arguments about his wishes. #btsm
Janet Freeman-Daily @JFreemanDaily
T1: Evidence shows majority of us will have gradual decline of health in later years, and will eventually require care from others. #btsm
Patti & Ron Gauvin @pattigauvin
Patti here spouse of 26 year survivor we have had the discussion of advance care planning many many times #btsm
Charlie Blotner @CBlotner_
T1. Having preemptive conversations about, and instructions for loved ones regarding health decisions is the best gift you can give./1 #btsm
National Brain Tumor Society @NBTStweets
RT @CBlotner_: T1. Having preemptive conversations about, and instructions for loved ones regarding health decisions is the best gift you can give./1 #btsm
Liz Salmi @TheLizArmy
@BTSMchat Real talk. The default in medicine is to "do everything" to a person to try to save them or keep them alive, even if doing everything is not what you'd want. It's a good idea to talk about the "what ifs" w/loved ones. #BTSM
Janet Freeman-Daily @JFreemanDaily
T1: Loved ones need to what's important for good life should we find ourselves unable to live independently. Do it while life is good. #btsm
Advance Care Planning Australia @ACPAustralia
RT @CBlotner_: T1. Having preemptive conversations about, and instructions for loved ones regarding health decisions is the best gift you can give./1 #btsm
St_Molly_AgentofChaos @Lifeiskitsch
@BTSMchat T1: sometimes bad stuff just happens. Sometimes it happens all at once. #BTSM
Charlie Blotner @CBlotner_
T1. These allow for avoiding extra stressors and panicked/confused decisions to be made by others when you might not be able to make them yourself in an emergency or otherwise. /2 #btsm
Matt Cotcher @MLCotcher
T1: The question is why *wouldn't* you talk about ACP with loved ones? Even if you don't do it for yourself, you relieve a huge burden from loved ones. #btsm
Amanda Haddock 🧬 @AmandaHaddock
RT @TheLizArmy: @BTSMchat Real talk. The default in medicine is to "do everything" to a person to try to save them or keep them alive, even if doing everything is not what you'd want. It's a good idea to talk about the "what ifs" w/loved ones. #BTSM
Liz Salmi @TheLizArmy
@Prof_Riggins Thanks for joining us again! #BTSM
Amanda Haddock 🧬 @AmandaHaddock
RT @Lifeiskitsch: @BTSMchat T1: @BTSMchat T1: sometimes bad stuff just happens. Sometimes it happens all at once. #BTSM
Liz Salmi @TheLizArmy
RT @lisaoleary524: T1 My husband Patrick had no will, nothing set up when dx with GBM. Caused endless problems in family and arguments about his wishes. #btsm
Lisa O'Leary @lisaoleary524
T1 An opportunity to decide what your wishes actually are when you're not driven solely by fear. #btsm
Liz Salmi @TheLizArmy
RT @JFreemanDaily: T1: T1: Evidence shows majority of us will have gradual decline of health in later years, and will eventually require care from others. #btsm
Tami Dew Rich, MBA @bostonheartmom
Hi all, Tami here from v chilly metroBoston! ❤️mom former caregiver to my now YA son Jameson. This is 1/3 advocacy missions focused on #howmightwe improve advance care planning, making it user-friendly & accessible to all Pts & families #btsm #hcldr
Erica Robinson @eleighrobs
@BTSMchat T1. I didn't want to have someone else make certain decisions if I could help it. #btsm
RichVsMultMyeloma @richvsmm
T1: Making your caregivers have to make those decisions solo is a pretty heavy load, as well. #BTSM
Janet Freeman-Daily @JFreemanDaily
T1: Having to make end of life decisions about care for a loved one is difficult and painful when you don't know what they want. #btsm
Claire Snyman @clairehsnyman
@BTSMchat T1: because when that moment arrives, often the ‘clear head’ scenario you would like to have had, is engulfed with emotion and other challenges. Planning ahead allows a more objective view. #btsm
Liz Salmi @TheLizArmy
@pattigauvin How many times have you and Ron talked about advance care plans over the last 26 years? #BTSM (Hi Ron!)
Heather 🇺🇸 @ZHeatherChamp
A1: Are we talking about ourselves (persons w brain tumors) or family members? This topic all around makes me very uneasy. #btsm
Amanda Haddock 🧬 @AmandaHaddock
RT @clairehsnyman: @BTSMchat T1: @BTSMchat T1: because when that moment arrives, often the ‘clear head’ scenario you would like to have had, is engulfed with emotion and other challenges. Planning ahead allows a more objective view. #btsm
Amanda Haddock 🧬 @AmandaHaddock
RT @JFreemanDaily: T1: T1: Having to make end of life decisions about care for a loved one is difficult and painful when you don't know what they want. #btsm
Janet Freeman-Daily @JFreemanDaily
T1: Especially tough to make difficult decisions when facing impending loss of loved one. Advanced planning removes that challenge. #btsm
Amanda Haddock 🧬 @AmandaHaddock
RT @eleighrobs: @BTSMchat T1. I didn't want to have someone else make certain decisions if I could help it. #btsm
Liz Salmi @TheLizArmy
That's funny @CBlotner_, because I'm giving you a copy of my advance directive for your birthday. #BTSM https://t.co/YCMIo8sUqi
Claire Snyman @clairehsnyman
RT @JFreemanDaily: T1: T1: Evidence shows majority of us will have gradual decline of health in later years, and will eventually require care from others. #btsm
Lisa O'Leary @lisaoleary524
@ZHeatherChamp I think one of the largest barriers to discussing is that it makes ppl uneasy - but either way, it's necessary. #btsm
Liz Salmi @TheLizArmy
RT @MLCotcher: T1: T1: The question is why *wouldn't* you talk about ACP with loved ones? Even if you don't do it for yourself, you relieve a huge burden from loved ones. #btsm
Enlightening Results 💡 @GraceCordovano
T1: We need to normalize the conversation about ACP. I've witnessed too many situations where decisions were made on assumptions, out of fear, in a high-stress environment in the ER or ICU. We must have the conversation earlier, as a matter-of-fact. #btsm
Amanda Haddock 🧬 @AmandaHaddock
RT @lisaoleary524: T1 An opportunity to decide what your wishes actually are when you're not driven solely by fear. #btsm
Charlie Blotner @CBlotner_
RT @TheLizArmy: That's funny @CBlotner_, because I'm giving you a copy of my advance directive for your birthday. #BTSM https://t.co/YCMIo8sUqi
Heather 🇺🇸 @ZHeatherChamp
@lisaoleary524 Agreed. But is the topic focusing on family members (or ourselves with brain tumors)? #btsm
Erica Robinson @eleighrobs
@pattigauvin @TheLizArmy Love you both. #btsm
Advance Care Planning Australia @ACPAustralia
RT @GraceCordovano: T1: T1: We need to normalize the conversation about ACP. I've witnessed too many situations where decisions were made on assumptions, out of fear, in a high-stress environment in the ER or ICU. We must have the conversation earlier, as a matter-of-fact. #btsm
Liz Salmi @TheLizArmy
@ZHeatherChamp What is it about advance care planning conversations that makes you feel uneasy? #BTSM
Amanda Haddock 🧬 @AmandaHaddock
RT @lisaoleary524: T1 My husband Patrick had no will, nothing set up when dx with GBM. Caused endless problems in family and arguments about his wishes. #btsm
Liz Salmi @TheLizArmy
RT @GraceCordovano: T1: T1: We need to normalize the conversation about ACP. I've witnessed too many situations where decisions were made on assumptions, out of fear, in a high-stress environment in the ER or ICU. We must have the conversation earlier, as a matter-of-fact. #btsm
Charlie Blotner @CBlotner_
@TheLizArmy I'm screaming!!! 😂🧠❤️ (And, please do) #btsm
Debi Cirasole @DebiCasserole
@BTSMchat Sorry, I'm late. I'm Debi, glioma farmer - R frontal lobe and lumbar + thoracic. #btsm
Enlightening Results 💡 @GraceCordovano
RT @TheLizArmy: @BTSMchat Real talk. The default in medicine is to "do everything" to a person to try to save them or keep them alive, even if doing everything is not what you'd want. It's a good idea to talk about the "what ifs" w/loved ones. #BTSM
Janet Freeman-Daily @JFreemanDaily
T1: I had to make choices for both parents (dementia). I still second-guess my choices because my family didn't "talk" about it. #btsm
Amanda Haddock 🧬 @AmandaHaddock
Discussion happening now. #btsm https://t.co/livUPxgMWs
Liz Salmi @TheLizArmy
@ZHeatherChamp @lisaoleary524 The first question was broad, meaning anyone regardless of health status. #BTSM
Lisa O'Leary @lisaoleary524
@ZHeatherChamp T1 didn't specify - think it's more general, but discuss however applicable to you! #btsm
Guy Lipof - גיא @Project2Program
@BTSMchat T1: My father-in-law recently passed. There’s nothing quite like having one’s wishes in black and white; especially when they can no longer express themselves. #BTSM
Heather 🇺🇸 @ZHeatherChamp
@TheLizArmy I'm single. Limited family. Where do I start? hehe J/K #btsm
Enlightening Results 💡 @GraceCordovano
@TheLizArmy @BTSMchat Majority of people don't realize what "do everything to save" their loved one means. By having the conversations earlier & more often, we get an understanding of the options, the choices, & align w/personal values. #btsm
Debi Cirasole @DebiCasserole
RT @TheLizArmy: @BTSMchat Real talk. The default in medicine is to "do everything" to a person to try to save them or keep them alive, even if doing everything is not what you'd want. It's a good idea to talk about the "what ifs" w/loved ones. #BTSM
St_Molly_AgentofChaos @Lifeiskitsch
RT @CBlotner_: T1. Having preemptive conversations about, and instructions for loved ones regarding health decisions is the best gift you can give./1 #btsm
St_Molly_AgentofChaos @Lifeiskitsch
RT @CBlotner_: T1. These allow for avoiding extra stressors and panicked/confused decisions to be made by others when you might not be able to make them yourself in an emergency or otherwise. /2 #btsm
Janet Freeman-Daily @JFreemanDaily
@ZHeatherChamp @lisaoleary524 Topic is both benefit to patient of making wishes known, AND giving gift of that knowledge to loved ones #btsm
Liz Salmi @TheLizArmy
RT @Project2Program: @BTSMchat T1: @BTSMchat T1: My father-in-law recently passed. There’s nothing quite like having one’s wishes in black and white; especially when they can no longer express themselves. #BTSM
St_Molly_AgentofChaos @Lifeiskitsch
RT @clairehsnyman: @BTSMchat T1: @BTSMchat T1: because when that moment arrives, often the ‘clear head’ scenario you would like to have had, is engulfed with emotion and other challenges. Planning ahead allows a more objective view. #btsm
Heather 🇺🇸 @ZHeatherChamp
A2: Fear. Lack of knowledge. Fear. Lack of understanding. Fear. #btsm
Debi Cirasole @DebiCasserole
RT @JFreemanDaily: T1: T1: Evidence shows majority of us will have gradual decline of health in later years, and will eventually require care from others. #btsm
Lisa O'Leary @lisaoleary524
T2 our culture does not discuss death and dying. We learn to fear it, though no one gets out of here alive. #btsm
Janet Freeman-Daily @JFreemanDaily
T2: Starting advance planning discussions means accepting fact that we don't live forever. Some people don't want to face it. #btsm
Erica Robinson @eleighrobs
@AmandaHaddock @TheLizArmy @CBlotner_ Same! 😂 #btsm
Charlie Blotner @CBlotner_
@pattigauvin Has the ease of having these conversations changed over time? Who initiated them at first (one of you, a provider, etc.)? #btsm
Amanda Haddock 🧬 @AmandaHaddock
A valid question for all. If you haven’t had an advanced care planning conversation with a loved one, why not? #btsm https://t.co/GyraFblWUx
Enlightening Results 💡 @GraceCordovano
@Project2Program @BTSMchat So sorry for your loss. Thank you for sharing the importance of personally knowing the answers to a loved one's wishes. #btsm
Dr. rer. pol.Sabine Schwab @Sabine_NJ
RT @lisaoleary524: @ZHeatherChamp I think one of the largest barriers to discussing is that it makes ppl uneasy - but either way, it's necessary. #btsm
Dr. rer. pol.Sabine Schwab @Sabine_NJ
RT @lisaoleary524: T1 An opportunity to decide what your wishes actually are when you're not driven solely by fear. #btsm
Amanda Haddock 🧬 @AmandaHaddock
RT @JFreemanDaily: T1: T1: I had to make choices for both parents (dementia). I still second-guess my choices because my family didn't "talk" about it. #btsm
Enlightening Results 💡 @GraceCordovano
@cherimarsocci @BTSMchat Important to note that wishes must be in writing and shared/accessible by point-of-care team and #carepartners. #btsm
Charlie Blotner @CBlotner_
Happening right now: a fantastic conversation about advanced care planning, ft. @TheLizArmy sharing her upcoming birthday present to me: a copy of her advanced directive. Join us! #btsm #hpm #meded
Liz Salmi @TheLizArmy
1/2: 3 major court cases would have been averted had there been an advance directive: Karen Ann Quinlan, Nancy Cruzan and Terri Schiavo. What was remarkable about all 3 is that they were not about people in old age... #BTSM
Lisa O'Leary @lisaoleary524
T2 When Patrick was DX, we feared discussing it meant that we were giving up hope. #btsm
Liz Salmi @TheLizArmy
2/2: ... they were about young women in their 20’s who ended up in serious medical situations where they were unable to speak for themselves. #BTSM
Dr. rer. pol.Sabine Schwab @Sabine_NJ
RT @JFreemanDaily: T2: Starting advance planning discussions means accepting fact that we don't live forever. Some people don't want to face it. #btsm
Janet Freeman-Daily @JFreemanDaily
T2: Some people put off advanced planning because they think it's only about finances, and they don't have enough resources to worry. #btsm
Heather 🇺🇸 @ZHeatherChamp
@JFreemanDaily Makes sense to me. #btsm
Janet Freeman-Daily @JFreemanDaily
T2: Some patients react negatively to any suggestion of advanced planning because they think doc is giving up on them #btsm
Charlie Blotner @CBlotner_
@lisaoleary524 I think that this is a super common concern, both for patients, and for providers. Can any providers chime in on this? #btsm
Dr. rer. pol.Sabine Schwab @Sabine_NJ
RT @BTSMchat: //T2 What do you think prevents people from having advance care planning (ACP) conversations and creating an advance directive? #BTSM
Amanda Haddock 🧬 @AmandaHaddock
RT @JFreemanDaily: T2: T2: Starting advance planning discussions means accepting fact that we don't live forever. Some people don't want to face it. #btsm
RichVsMultMyeloma @richvsmm
T2: I'd guess fear that talking about it makes it more "real" while you are still trying to get an initial grasp on the fact that you may be needing it shortly? #btsm
Debi Cirasole @DebiCasserole
RT @JFreemanDaily: T2: T2: Starting advance planning discussions means accepting fact that we don't live forever. Some people don't want to face it. #btsm
Patti & Ron Gauvin @pattigauvin
Advance care planning helped with making sure both parents died with their wishes honored #btsm
Liz Salmi @TheLizArmy
@ZHeatherChamp Thank you for being honest about the fear. I think most people relate to that. #BTSM
St_Molly_AgentofChaos @Lifeiskitsch
@BTSMchat T2: not knowing how to start (me). I think a large part is everyone wanting to avoid that... part... including medical professionals. Because we just want to... put it off. As if it can hold off the inevitable (for all of us)— truly. #BTSM
Charlie Blotner @CBlotner_
RT @Project2Program: @BTSMchat T1: @BTSMchat T1: My father-in-law recently passed. There’s nothing quite like having one’s wishes in black and white; especially when they can no longer express themselves. #BTSM
Advance Care Planning Australia @ACPAustralia
T2: People often associate advance care planning with aging and palliative care. And they don't think about what could happen tomorrow (e.g. accidents, disease). So, they don't plan ahead. #btsm
Liz Salmi @TheLizArmy
RT @JFreemanDaily: T2: T2: Starting advance planning discussions means accepting fact that we don't live forever. Some people don't want to face it. #btsm
Janet Freeman-Daily @JFreemanDaily
T2: Many of my friends that are 50+ are spurred to advanced planning when a family member dies without having talked about it. #btsm
Matt Cotcher @MLCotcher
Clarification question......doesn't thorough ACP prevent much of the need for an Advance Directive? If you have conversations and put your ACP wishes in writing, you shouldn't have to worry about naming someone to make decisions for you. #btsm
St_Molly_AgentofChaos @Lifeiskitsch
RT @JFreemanDaily: T2: T2: Starting advance planning discussions means accepting fact that we don't live forever. Some people don't want to face it. #btsm
St_Molly_AgentofChaos @Lifeiskitsch
RT @lisaoleary524: T2 our culture does not discuss death and dying. We learn to fear it, though no one gets out of here alive. #btsm
Claire Snyman @clairehsnyman
Have you thought of any advance care planning for you or your partner? Important for any body to think of #btsm https://t.co/DDzFYriwZW
Guy Lipof - גיא @Project2Program
@BTSMchat T1: This is especially important for spouses dealing with extended family, like sister/ brother-in-laws, who do not respect patient wishes. #BTSM
Heather 🇺🇸 @ZHeatherChamp
@TheLizArmy I think being single and alone exacerbates my fear of my future. My home. My whole being. #btsm
St_Molly_AgentofChaos @Lifeiskitsch
RT @Sabine_NJ: RT @lisaoleary524: RT @lisaoleary524: T1 An opportunity to decide what your wishes actually are when you're not driven solely by fear. #btsm
Charlie Blotner @CBlotner_
T2. I think that there's a lot of fear regarding the timing of these conversations, and that they need to happen when someone is sick. #btsm
Enlightening Results 💡 @GraceCordovano
@BTSMchat Seems it is socially taboo to talk about death. There are also cultural & spiritual traditions or beliefs that may hinder the conversation. Fear. Lack of awareness of how the conversation should be started. #btsm
Janet Freeman-Daily @JFreemanDaily
T2: Sometimes a patient fears raising the topic of advanced planning because the caregiver wants to believe a cure is possible. #btsm
Charlie Blotner @CBlotner_
@JFreemanDaily Precisely! #btsm
Kendra K @KMJtravels
RT @JFreemanDaily: T2: T2: Starting advance planning discussions means accepting fact that we don't live forever. Some people don't want to face it. #btsm
💧marie🐨🍃 @pas64
RT @ACPAustralia: T2: T2: People often associate advance care planning with aging and palliative care. And they don't think about what could happen tomorrow (e.g. accidents, disease). So, they don't plan ahead. #btsm
Amanda Haddock 🧬 @AmandaHaddock
@BTSMchat T2: I think people always believe there will be time later. Life doesn’t always wait for us to grow old, though. #btsm
Choi-Fong Cho, PhD @DrFongCho
#btsm listening in
Liz Salmi @TheLizArmy
I tried to bring up advance care planning with an oncologist and they told me I was too healthy and didn't need to worry about it. OMG. #BTSM #HPM (gender neutral language) https://t.co/BgZLDwD0MS
Dr. rer. pol.Sabine Schwab @Sabine_NJ
I'd say a big part is general nescience about what it is and what is needed to set it up #btsm
Heather 🇺🇸 @ZHeatherChamp
@AmandaHaddock Well said. #btsm
𝖉𝖆𝖛𝖊 𝖋𝖚𝖑𝖑𝖊𝖗 @cd_fuller@med-mastodon.com @cd_fuller
RT @TheLizArmy: I tried to bring up advance care planning with an oncologist and they told me I was too healthy and didn't need to worry about it. OMG. #BTSM #HPM (gender neutral language) https://t.co/BgZLDwD0MS
Lisa O'Leary @lisaoleary524
@JFreemanDaily T2 Agree. Patrick may have been more willing to discuss than me. Talking about it made it more real than I could bear. #btsm
St_Molly_AgentofChaos @Lifeiskitsch
@BTSMchat before I inevitably forget, will you have a transcript of this #BTSMchat today? Want to send to my HF team. @HenryFordNews #btsm
Advance Care Planning Australia @ACPAustralia
RT @JFreemanDaily: T2: T2: Some people put off advanced planning because they think it's only about finances, and they don't have enough resources to worry. #btsm
Lisa O'Leary @lisaoleary524
RT @AmandaHaddock: @BTSMchat T2: @BTSMchat T2: I think people always believe there will be time later. Life doesn’t always wait for us to grow old, though. #btsm
St_Molly_AgentofChaos @Lifeiskitsch
RT @Sabine_NJ: I'd say a big part is general nescience about what it is and what is needed to set it up #btsm
Kendra K @KMJtravels
RT @AmandaHaddock: @BTSMchat T2: @BTSMchat T2: I think people always believe there will be time later. Life doesn’t always wait for us to grow old, though. #btsm
Debi Cirasole @DebiCasserole
@BTSMchat T2: People avoid discussing illnesses and death. It's taboo, even after diagnosis. 😧 It's frustrating and lonely, when no one else accepts/stands beside you, in your reality. #btsm
Erica Robinson @eleighrobs
@cherimarsocci #BTSM
Sean Sachdev, MD @SeanSachdevMD
@CBlotner_ @lisaoleary524 Can only imagine in that moment that feeling must instinctually right. One hopes that with time and open discussion about the unkown (future/possibilities) that becomes uncoupled #btsm
Tami Dew Rich, MBA @bostonheartmom
T1 While sad to consider, one day I might be unable to communicate my wishes. We've faced this with our son who was born with complex congenital heart disease #chd (and is now well-ish) and it eventually happened with both his grandmas. So, #DoingACPisOnlyNatural #btsm #hcldr
Liz Salmi @TheLizArmy
@MLCotcher Not necessarily true... Physicians need to know WHO speaks for you. Healthcare proxy automatically goes to closest family member. Does that person know what you want? What if they are not available? Can they follow through with your wishes? #BTSM
Enlightening Results 💡 @GraceCordovano
@MLCotcher AD needs to be accessible by care team. For example, what if you are traveling and a medical emergency occurs? What if you are unconscious? #btsm
Dr. rer. pol.Sabine Schwab @Sabine_NJ
RT @BTSMchat: //T3 Have you had an advance care planning (ACP) conversation with your loved ones? Why or why not? #BTSM
Heather 🇺🇸 @ZHeatherChamp
A3: Don't know where/when/how/why/details on what to do. I also don't want to lay any more pressure on my fam. #btsm
Amanda Haddock 🧬 @AmandaHaddock
RT @JFreemanDaily: T2: T2: Some patients react negatively to any suggestion of advanced planning because they think doc is giving up on them #btsm
Liz Salmi @TheLizArmy
@ZHeatherChamp You being single and alone makes advance care planning even more important. Do you have a friend or neighbor you trust? If you are unconscious, who authorizes medication and treatment? #BTSM
Liz Salmi @TheLizArmy
@Project2Program @BTSMchat So true! #BTSM
Lisa O'Leary @lisaoleary524
T3 Yes. After Patrick died, I had 3 surgeries in 1 year. Before 1st I did an advanced directive. Didn't want anyone to ? what I want. #btsm
Janet Freeman-Daily @JFreemanDaily
Good book that shows joys and pitfalls of these discussions: "Final Gifts" by Callanan and Kelley #btsm
Matt Cotcher @MLCotcher
T2: Most patients I know are extremely comfortable talking about their condition/disease, as well as their ACP wishes. Even so, many family & friends find it difficult to broach either subject. #btsm
Dr. rer. pol.Sabine Schwab @Sabine_NJ
T3: I did have that conversation 2 days before my craniotomy. I made it a point to talk about my husband's preferences too, when I felt better post surgery. #btsm
Charlie Blotner @CBlotner_
@TheLizArmy Yikes. 🤦‍♂️ #btsm
Erica Robinson @eleighrobs
@BTSMchat T3. Yes. I wanted them to know what my wishes were, and vice versa. #BTSM
Patti & Ron Gauvin @pattigauvin
T3 as I stated before 2 many times. But my reason is I took care of too many patients who were in coma who had not had the discussion #btsm
Enlightening Results 💡 @GraceCordovano
@JFreemanDaily This can be so mentally & emotionally draining for a patient to refrain from expressing their wishes. #btsm
Heather 🇺🇸 @ZHeatherChamp
@TheLizArmy I think it's my mother at this time. #btsm
Amanda Haddock 🧬 @AmandaHaddock
It is VERY sensitive, but if a patient brings up advance care planning, medical professionals should take the opportunity to advance the topic. #btsm https://t.co/jcXvbGJXMm
Liz Salmi @TheLizArmy
The more "normal" we make it to start talking about advance care planning, the less it will be associated with illness/death/dying. I'm hoping to host an ACP session at my gym with @ChristiBarnas in 2018! #BTSM https://t.co/RP1JpN9y32
RichVsMultMyeloma @richvsmm
T4: Yeah ... oddly enough given the previous question, my fear of dealing with it was trumped by the perceived feeling at the time to get my paperwork in order, especially since I had a 2-year-old when diagnosed. #BTSM
Patti & Ron Gauvin @pattigauvin
T3 It is now a question on Home heath assessments but only for patients 65+ #btsm
Amanda Haddock 🧬 @AmandaHaddock
RT @TheLizArmy: The more "normal" we make it to start talking about advance care planning, the less it will be associated with illness/death/dying. I'm hoping to host an ACP session at my gym with @ChristiBarnas in 2018! #BTSM https://t.co/RP1JpN9y32
Liz Salmi @TheLizArmy
@cherimarsocci @BTSMchat Woah! Multitasker! #BTSM
Heather 🇺🇸 @ZHeatherChamp
A3b: I have so much guilt about my fam having to support me I guess I feel I don't to add any more burdens to them. #btsm
Kendra K @KMJtravels
@BTSMchat yes before dx, now need to update post-dx. #NewPerspective #btsm
Debi Cirasole @DebiCasserole
@BTSMchat T3: Yes, but it resulted in platitudes. I eventually just asked for a ride to a lawyer's office. #btsm
Advance Care Planning Australia @ACPAustralia
@ZHeatherChamp We hear people say that they are afraid of burdening their loved ones with this, but over and over families report less stress and anxiety when a person has an advance care plan. People that love you want the best for you and they want to do right by you. #btsm
Erica Robinson @eleighrobs
@TheLizArmy OMG #BTSM
Janet Freeman-Daily @JFreemanDaily
T3: Husband and I did financial pieces years ago. Only started discussing emotional pieces after attending class at local hospital. #btsm
Debi Cirasole @DebiCasserole
@TheLizArmy 😲 Wow. #btsm
Lisa O'Leary @lisaoleary524
@WDMunn @JFreemanDaily I'm so glad you did. By the time I could, Patrick had so many cognitive difficulties. Very fast progression. If I could change one thing, I'd have wanted to talk about it more, so I didn't wonder where he would stand on my life going forward once he was gone. #BTSM
Enlightening Results 💡 @GraceCordovano
@AmandaHaddock @BTSMchat Coming to terms with one's mortality is definitely not in the forefront of every person's daily to- do list. But, making ACP the norm would make it an obligation such as renewing one's license, or paying taxes. A regular task, not a scary, taboo talk. #btsm
Tami Dew Rich, MBA @bostonheartmom
T2 *We* were delayed / nearly derailed from helping our mother - a v difficult human - because our sibling relationships w/ea other & her were complicated. 1 sibling ~was punishing mom for past bad acts. Yup, brutal but got better in time #btsm #hcldr
Advance Care Planning Australia @ACPAustralia
RT @AmandaHaddock: It is VERY sensitive, but if a patient brings up advance care planning, medical professionals should take the opportunity to advance the topic. #btsm https://t.co/jcXvbGJXMm
Heather 🇺🇸 @ZHeatherChamp
A3c: I guess I don't really understand/know what it means, too. Just trying to be mindful and silent. #btsm
Guy Lipof - גיא @Project2Program
@lisaoleary524 I wish your experience was the exception. I know otherwise. #BTSM
Janet Freeman-Daily @JFreemanDaily
T3: I talked with hubby and sister about what's life means to me, what losses I would tolerate, when I'll be ready to go #btsm
Debi Cirasole @DebiCasserole
@GraceCordovano @AmandaHaddock @BTSMchat That is a fantastic idea! #btsm
Liz Salmi @TheLizArmy
Great point, @MLCotcher. I wonder if there are any generational differences in having advance care planning conversations? I find many younger Gen X-ers and Millennials are open to these convos. #BTSM https://t.co/IFS4RkXf9e
Debi Cirasole @DebiCasserole
RT @GraceCordovano: @JFreemanDaily This can be so mentally & emotionally draining for a patient to refrain from expressing their wishes. #btsm
Enlightening Results 💡 @GraceCordovano
@eleighrobs @TheLizArmy Good grief. Many doctors are uncomfortable with ACP discussions, with many saying that they were never taught how to have these conversations in med school. #btsm
St_Molly_AgentofChaos @Lifeiskitsch
@BTSMchat T3 No, mainly because I don’t know what to do or how to start. I really want to, though. Also my mom’s pancreatic cancer has mets now. We need all need to do this. #BTSM
Heather 🇺🇸 @ZHeatherChamp
@EmilySuess Send me your blog link please! #BTSM
Claire Snyman @clairehsnyman
@BTSMchat Yes, before my craniotomy, so more ‘last minute’ but now we know what my wishes are. And vice versa. It brings reality to the fore! #btsm
Enlightening Results 💡 @GraceCordovano
RT @AmandaHaddock: It is VERY sensitive, but if a patient brings up advance care planning, medical professionals should take the opportunity to advance the topic. #btsm https://t.co/jcXvbGJXMm
Matt Cotcher @MLCotcher
T3: I talked about ACP, my funeral, EOL issues, etc before surgery last year. The brain is precious real estate, and such matters shouldn't be left to chance. #btsm
Liz Salmi @TheLizArmy
@adamhayden You do you, Adam. #BTSM https://t.co/vfyxmA0lZF
Charlie Blotner @CBlotner_
T3. A family convo was really only had when I spoke at a @CoalitionCCC event. Previously it wasn't discussed, even pre brain surgery. #btsm
Lisa O'Leary @lisaoleary524
@adamhayden Welcome Adam! I would expect nothing but you and your amazing wife Whitney being on top of this. You're so inspiring. #btsm
Lisa (Loehr)Spaulding @leezawilllshe
RT @NCICancerStats: 12.7% of all #BrainCancer cases occur in people under the age of 20. Get more stats here: 12.7% of all #BrainCancer cases occur in people under the age of 20. Get more stats here: https://t.co/Cde67D0Mpf #BTSM https://t.co/jcXdYuR1Kx
Amanda Haddock 🧬 @AmandaHaddock
RT @GraceCordovano: @MLCotcher AD needs to be accessible by care team. For example, what if you are traveling and a medical emergency occurs? What if you are unconscious? #btsm
Advance Care Planning Australia @ACPAustralia
@TheLizArmy @MLCotcher The 'sandwich generation' - people caring for their children and their ageing parents also seem pretty open to advance care planning conversations. #btsm
Liz Salmi @TheLizArmy
@ZHeatherChamp How old is your mother? In your directive, you could name your mom, as well as a back up person. The advance directive would have the contact info of your healthcare proxies. #BTSM
Karl Steinberg MD CMD HMDC (he/him) @karlsteinberg
A3 I've had the conversation with my loved ones , especially the 3 agents I chose on my durable power of attorney for health care. #btsm
Liz Salmi @TheLizArmy
@richvsmm We will talk about paperwork soon! You don't need a lawyer to complete an advance directive. Simple form, make copies. #BTSM
Janet Freeman-Daily @JFreemanDaily
T3: One way to get started with ACP is to list things that bring you joy, that make life worth living (e.g., laughing with my kid) #btsm
Enlightening Results 💡 @GraceCordovano
T3: Yes! It's something I'm very passionate about. I've seen both sides of the coin & want my husband & family to know what I wish for if decisions need to be made. Eliminate the guess work. #btsm https://t.co/fA85K6Zn1u
Heather 🇺🇸 @ZHeatherChamp
@TheLizArmy She's actually getting up there... I do the advance directive at my doctor, right? #BTSM
Lisa O'Leary @lisaoleary524
T3 Also think that some people only think about the financial part, and if they don't have money, they don't see the need. #btsm
Karl Steinberg MD CMD HMDC (he/him) @karlsteinberg
A3 And as far as I know, I don't have a potentially life-limiting illness, beyond life itself. #btsm
St_Molly_AgentofChaos @Lifeiskitsch
@BTSMchat I wish I read what I write before posting. I hate my typos& double words. 😐 #btsm
Liz Salmi @TheLizArmy
FYI: You don't need a lawyer complete an advance directive. You just need two people to witness you signing it. #BTSM https://t.co/hhICvqejny
Janet Freeman-Daily @JFreemanDaily
T3: If you had list of 100 activities that define good life, how many could you lose before life would no longer be worth the fight? #btsm
St_Molly_AgentofChaos @Lifeiskitsch
@lisaoleary524 Yeeeahhhh this is me. #btsm
Erica Robinson @eleighrobs
@TheLizArmy @adamhayden I love me some Flava Flav during a @BTSMchat! #btsm
Lisa O'Leary @lisaoleary524
@ZHeatherChamp @TheLizArmy You can get blank advanced directives at doc or online. Doesn't have to be a particular format. #btsm
Heather 🇺🇸 @ZHeatherChamp
@lisaoleary524 Kinda yes on this. I am destitute and broke, what do I do? #btsm
Advance Care Planning Australia @ACPAustralia
RT @JFreemanDaily: T3: T3: One way to get started with ACP is to list things that bring you joy, that make life worth living (e.g., laughing with my kid) #btsm
Advance Care Planning Australia @ACPAustralia
RT @TheLizArmy: @richvsmm We will talk about paperwork soon! You don't need a lawyer to complete an advance directive. Simple form, make copies. #BTSM
St_Molly_AgentofChaos @Lifeiskitsch
RT @MLCotcher: T2: T2: Most patients I know are extremely comfortable talking about their condition/disease, as well as their ACP wishes. Even so, many family & friends find it difficult to broach either subject. #btsm
Kendra K @KMJtravels
@adamhayden, any resources/tips/best practices for other parents of tiny humans? That's where I'm struggling right now... #btsm
Liz Salmi @TheLizArmy
@lisaoleary524 @ZHeatherChamp Yes! We will be sharing a link to download basic forms for every state near the end of the chat. #btsm
Charlie Blotner @CBlotner_
RT @lisaoleary524: @ZHeatherChamp @TheLizArmy You can get blank advanced directives at doc or online. Doesn't have to be a particular format. #btsm
Advance Care Planning Australia @ACPAustralia
RT @JFreemanDaily: T3: T3: If you had list of 100 activities that define good life, how many could you lose before life would no longer be worth the fight? #btsm
Amanda Haddock 🧬 @AmandaHaddock
@BTSMchat T3: I’ve had the conversation with some but not all. Not all of my family is open to the idea of talking about it. #btsm
St_Molly_AgentofChaos @Lifeiskitsch
Yes! Yes! #BTSM @HenryFordNews https://t.co/tubmqTEx8G
Amanda Haddock 🧬 @AmandaHaddock
RT @GraceCordovano: @AmandaHaddock @BTSMchat Coming to terms with one's mortality is definitely not in the forefront of every person's daily to- do list. But, making ACP the norm would make it an obligation such as renewing one's license, or paying taxes. A regular task, not a scary, taboo talk. #btsm
Lisa O'Leary @lisaoleary524
T4 Someone who will respect my wishes. I designated my sister bc I know my parents would keep me on a machine forever if it came to it #btsm
Dr. rer. pol.Sabine Schwab @Sabine_NJ
RT @BTSMchat: //T4 What qualities do YOU look for in choosing someone to be your medical decision-maker/healthcare proxy? #BTSM
Karl Steinberg MD CMD HMDC (he/him) @karlsteinberg
A4 Be sure they will advocate for me, whether for more treatment or less treatment. Consider my situation, not their baggage #btsm
Liz Salmi @TheLizArmy
Janet is rocking it on the advance care planning tips... So glad we got her on loan from #LCSM tonight. ❤️ #BTSM https://t.co/4ctQsxiELA
Guy Lipof - גיא @Project2Program
RT @GraceCordovano: @AmandaHaddock @BTSMchat Coming to terms with one's mortality is definitely not in the forefront of every person's daily to- do list. But, making ACP the norm would make it an obligation such as renewing one's license, or paying taxes. A regular task, not a scary, taboo talk. #btsm
Tami Dew Rich, MBA @bostonheartmom
T3 (1) No, then Kinda 2013: Mom dx lungCA. So much drama. Changed her mind abt what she did/didn't want, had inept PCP who promised 🌙💫 but wdn't call us back. Despite DNR/DNI in place, hosp put in PICC line. She said ✋🏻 Passed 36hrs later #btsm #hcldr
Charlie Blotner @CBlotner_
T4. Someone who will respect my wishes, even if they may disagree in a crisis situation. And, someone who will answer their phone! #btsm
Liz Salmi @TheLizArmy
@ZHeatherChamp Nope! You download a form, fill it out, get it signed by two witnesses, and then make copies, pass them out. #BTSM
Advance Care Planning Australia @ACPAustralia
@lisaoleary524 It's so important to be able to make that distinction. #btsm
Charlie Blotner @CBlotner_
@TheLizArmy My thoughts exactly! #btsm
Lisa O'Leary @lisaoleary524
T4 Someone who is an advocate and will insist on your best care whether it's convenient or not. Privilege of my life fighting for Pat. #btsm
Heather 🇺🇸 @ZHeatherChamp
@TheLizArmy Hmmm, really? My doctors always ask me if I have one; I think I signed something a few yrs ago post-op. #btsm
Patti & Ron Gauvin @pattigauvin
T4 Pose the question if I were to end up in the hospital on machines with no chance of meaningful life could you Follow my adv dir #btsm
Amanda Haddock 🧬 @AmandaHaddock
RT @JFreemanDaily: T3: T3: One way to get started with ACP is to list things that bring you joy, that make life worth living (e.g., laughing with my kid) #btsm
Amanda Haddock 🧬 @AmandaHaddock
RT @TheLizArmy: Janet is rocking it on the advance care planning tips... So glad we got her on loan from #LCSM tonight. ❤️ #BTSM https://t.co/4ctQsxiELA
Charlie Blotner @CBlotner_
RT @TheLizArmy: Janet is rocking it on the advance care planning tips... So glad we got her on loan from #LCSM tonight. ❤️ #BTSM https://t.co/4ctQsxiELA
Dr. rer. pol.Sabine Schwab @Sabine_NJ
This! RT @lisaoleary524: T4 Someone who is an advocate and will insist on your best care whether it's convenient or not. Privilege of my life fighting for Pat. #btsm
St_Molly_AgentofChaos @Lifeiskitsch
@BTSMchat T4: my bf & one of my sisters. They more or less know my wishes & will be able to make the calls I can’t make for myself. Now I just need it on paper. #btsm
Debi Cirasole @DebiCasserole
@TheLizArmy I did a medical power of attorney and will along with the advance directive. #btsm
Janet Freeman-Daily @JFreemanDaily
T4: Someone who will LISTEN to you and try to understand what's important to YOU, and capable of follow-thru in emotional time. #btsm
Charlie Blotner @CBlotner_
RT @lisaoleary524: T4 Someone who is an advocate and will insist on your best care whether it's convenient or not. Privilege of my life fighting for Pat. #btsm
Liz Salmi @TheLizArmy
T4: I have used @CoPractice "Hello" advance care planning game to go over what matters most to me. Played the game with my husband and his parents. It was fun! #BTSM https://t.co/ZfQAB5Fawb
Enlightening Results 💡 @GraceCordovano
@MLCotcher Yes, many of my conversation starters on ACP & EoL are frowned upon by family. I'm the black sheep at Thanksgiving and Christmas. #btsm https://t.co/9tr5PxYwer
Aju Mathew @ajumathew_
Advance planning often must begin when patient is at his/her better state of health. Ideally, not wait till last moment. Huge implication on quality of care. https://t.co/FH5XpC6Nd9
Matt Cotcher @MLCotcher
This is such an important truth. #btsm https://t.co/348tTncD8a
Advance Care Planning Australia @ACPAustralia
What to look for in a substitute decision-maker. #advancecareplanning https://t.co/XgWrHTGpxC
Claire Snyman @clairehsnyman
RT @JFreemanDaily: T3: T3: One way to get started with ACP is to list things that bring you joy, that make life worth living (e.g., laughing with my kid) #btsm
Janet Freeman-Daily @JFreemanDaily
Resources for Advance Planning and EOL discussions: Atul Gawande's "Seriously ill conversation guide" https://t.co/YjUs0WepF2 #btsm
St_Molly_AgentofChaos @Lifeiskitsch
@BTSMchat T4: I didn’t really answer the question. I guess I just want them to know ME well, know the reality of my situation, & my wishes. That is, I trust them. I don’t expect them to be addled. #btsm
Dr. rer. pol.Sabine Schwab @Sabine_NJ
RT @BTSMchat: RESOURCE: Download advance directive forms for all 50 U.S. states and Puerto Rico: https://t.co/XTYBSTeLEh #BTSM
Enlightening Results 💡 @GraceCordovano
@CBlotner_ That is such a great point! #btsm
Matthew Katz, MD 🟦 @subatomicdoc
@BTSMchat Really good question. Sorry to make it so late. Matt Katz, radiation oncologist in MA. Hi #BTSM community!
Charlie Blotner @CBlotner_
@MissusSel Thanks for popping in from New Zealand! #btsm
Amanda Haddock 🧬 @AmandaHaddock
RT @karlsteinberg: A4 Be sure they will advocate for me, whether for more treatment or less treatment. Consider my situation, not their baggage #btsm
Janet Freeman-Daily @JFreemanDaily
Resources for EOL/Advance Care Planning: The Conversation Project (great for families) https://t.co/ZaVGxeEkmy #btsm
Liz Salmi @TheLizArmy
If anyone is interested, you can see my complete advance directive online. I used the generic form for my state, and customized it to include specific things that matter to me: https://t.co/mfnrKH4FLZ. #BTSM
Matthew Katz, MD 🟦 @subatomicdoc
RT @JFreemanDaily: Resources for Advance Planning and EOL discussions: Resources for Advance Planning and EOL discussions: Atul Gawande's "Seriously ill conversation guide" https://t.co/YjUs0WepF2 #btsm
Debi Cirasole @DebiCasserole
@BTSMchat T4: Logic. I need to know that their own emotions won't interfere with my wishes. #btsm
Erica Robinson @eleighrobs
@imdoin_it @AmandaHaddock @BTSMchat Welcome @imdoin_it ! #BTSM
Janet Freeman-Daily @JFreemanDaily
Resources for EOL/Advance Care Planning: Five Wishes (a worksheet) https://t.co/TeHvtV3XHX #btsm
Heather 🇺🇸 @ZHeatherChamp
@EmilySuess Got it! Can i add you to my blogroll? #BTSM
Advance Care Planning Australia @ACPAustralia
And if anyone other than us happens to be in Australia ;-) you can your state forms here: https://t.co/Rxba5946ix #btsm
Karl Steinberg MD CMD HMDC (he/him) @karlsteinberg
If nobody has mentioned it yet, the Five Wishes is a nice #advancecareplanning tool. https://t.co/GlRSDE3bC4 #btsm
Lisa O'Leary @lisaoleary524
T4 Someone who isn't afraid to say no, ask questions, even if experts or insurance companies disagree #btsm
Enlightening Results 💡 @GraceCordovano
Add to your to-do list for this week! Fill out your advanced directive & have the conversation on advanced care planning. #hcldr #patientchat #wtfix @S4PM https://t.co/r7ICU2VChb
Christina Lizaso @btrfly12
RT @JFreemanDaily: Resources for Advance Planning and EOL discussions: Resources for Advance Planning and EOL discussions: Atul Gawande's "Seriously ill conversation guide" https://t.co/YjUs0WepF2 #btsm
Matthew Katz, MD 🟦 @subatomicdoc
RT @JFreemanDaily: Resources for EOL/Advance Care Planning: Resources for EOL/Advance Care Planning: The Conversation Project (great for families) https://t.co/ZaVGxeEkmy #btsm
Kendra K @KMJtravels
RT @JFreemanDaily: Resources for EOL/Advance Care Planning: Resources for EOL/Advance Care Planning: Five Wishes (a worksheet) https://t.co/TeHvtV3XHX #btsm
Janet Freeman-Daily @JFreemanDaily
T4: Someone who can handle pressure from family members who may not be ready to let you go #btsm
Amanda Haddock 🧬 @AmandaHaddock
@BTSMchat T4: Someone who is calm under pressure and who is able to separate their wishes from mine. It isn’t always easy to honor someone else’s decision, especially if it conflicts with your own beliefs. #btsm
Lisa O'Leary @lisaoleary524
@JFreemanDaily Hugely important point. #btsm
National Brain Tumor Society @NBTStweets
RT @TheLizArmy: If anyone is interested, you can see my complete advance directive online. I used the generic form for my state, and customized it to include specific things that matter to me: https://t.co/mfnrKH4FLZ. #BTSM
Karl Steinberg MD CMD HMDC (he/him) @karlsteinberg
To help start conversations with family members, even reluctant ones, the Conversation Project https://t.co/wxdQn2eRsp #btsm
Melanie Kabo @MelanieKabo
Sorry to join so late, been in bed sick from Temador all day (day 3). AA3, dx 2011, recurance last year, 5th surg last July. #btsm
Tahu Hikuroa FDTN @tahuhikuroafdn
#btsm @MissusSel here from The Tahu Hikuroa Foundation. We're new to #btsm, currently working through charitable registration to be able to support BT patients & whānau (family) here in New Zealand.
Liz Salmi @TheLizArmy
@DebiCasserole @BTSMchat Truth! #BTSM
Janet Freeman-Daily @JFreemanDaily
T3: Conversations about end of life preferences is REALLY important, because paperwork can't cover all possibilities #btsm
Patti & Ron Gauvin @pattigauvin
T4 for those of us who have one let’s offer to have the discussion with others and start their discussion #btsm
Karl Steinberg MD CMD HMDC (he/him) @karlsteinberg
For those more seriously ill or nearing death, in states that have them, #POLST forms https://t.co/UDeBU3HNUV. @thelizarmy knows this! #btsm
Enlightening Results 💡 @GraceCordovano
Sharing a great resource: The Conversation Project https://t.co/PyIDawwdQ7 #btsm
Liz Salmi @TheLizArmy
@karlsteinberg I think you and @JFreemanDaily mentioned Five Wishes at the SAME TIME. Rock stars. #BTSM
Tami Dew Rich, MBA @bostonheartmom
T3 (2) Absolutely: Beloved 98yo MIL Millie passed 12/3/17 peacefully in hospice. Independent til bad fall 8/17 led to fx L6 C4, we had MOLST & DPOA in place since '14 (MA MedicalOrdersforLifeSustaining Treatment) We pine for her but wdn't change 1 thing. V fortunate #hcldr #btsm
Liz Salmi @TheLizArmy
@karlsteinberg Hey @ZHeatherChamp check out this resource! #BTSM
Claire Snyman @clairehsnyman
Just found similar resource for Canadians: https://t.co/p3byabzEmv #btsm https://t.co/54jpFAE3lv
Advance Care Planning Australia @ACPAustralia
When appointing a substitute decision-maker, remember that it's about your preferences and values. #advancecareplanning https://t.co/UVW9cC2lHa
Enlightening Results 💡 @GraceCordovano
@JFreemanDaily Very true! Better to be clear on your preferences, values, & definite do nots. #btsm
Matthew Katz, MD 🟦 @subatomicdoc
RT @GraceCordovano: @JFreemanDaily Very true! Better to be clear on your preferences, values, & definite do nots. #btsm
Liz Salmi @TheLizArmy
@karlsteinberg Yes! #POLST is important to know about if you are very sick. @bostonheartmom was mentioning this earlier! #BTSM
Janet Freeman-Daily @JFreemanDaily
@TheLizArmy Thanks @CBlotner_ and @TheLizArmy -- I've had a lot of time to think about this topic, and I'm patient advocate in initiatives that address this in my home state of Washington #BTSM
Lisa O'Leary @lisaoleary524
@adamhayden Yes - sadly, this was a central part of Patrick's care and the fight with his insurance company was endless. Glad I was up for the task but not everyone is. #BTSM
Charlie Blotner @CBlotner_
RT @JFreemanDaily: Resources for EOL/Advance Care Planning: Resources for EOL/Advance Care Planning: The Conversation Project (great for families) https://t.co/ZaVGxeEkmy #btsm
Charlie Blotner @CBlotner_
RT @karlsteinberg: If nobody has mentioned it yet, the Five Wishes is a nice #advancecareplanning tool. https://t.co/GlRSDE3bC4 #btsm
Melanie Kabo @MelanieKabo
RT @karlsteinberg: For those more seriously ill or nearing death, in states that have them, #POLST forms https://t.co/UDeBU3HNUV. @thelizarmy knows this! #btsm
Charlie Blotner @CBlotner_
@JFreemanDaily This is a reallllly important and great detail to mention here. #btsm
Liz Salmi @TheLizArmy
PRO TIP: Make copies of your advance directive. Give a copy to your decision-maker, other family members, and send a copy to your doctor to put in your medical record. If you email it to your doctor, it becomes part of your record. I tested this with Epic/MyChart. #BTSM https://t.co/qrfP88cf6o
Amanda Haddock 🧬 @AmandaHaddock
RT @JFreemanDaily: T4: T4: Someone who can handle pressure from family members who may not be ready to let you go #btsm
Jeffrey S. Weinberg @DrJeffWeinberg
Personally,my wife and I have our own advanced directives. But one issue care givers have is raising the issue of AD at or near time of dx. We have a problem across all cancers of pts not discussing AD early because it implies ‘not fighting’. Thoughts from the community? #BTSM
Amanda Haddock 🧬 @AmandaHaddock
RT @lisaoleary524: T4 Someone who isn't afraid to say no, ask questions, even if experts or insurance companies disagree #btsm
Guy Lipof - גיא @Project2Program
@Sabine_NJ @BTSMchat T3: We 1st setup Advance Directive and Will after recovery from first craniotomy (19 yrs ago) and revised during recurrence treatment (4 yrs ago) and other life events. #BTSM
Liz Salmi @TheLizArmy
@lisaoleary524 @adamhayden Lisa -- I am truly inspired by you, for becoming an advocate after so much loss. #BTSM
Enlightening Results 💡 @GraceCordovano
@TheLizArmy Any great resources for keeping it on a smart phone? #btsm
Charlie Blotner @CBlotner_
@karlsteinberg @JFreemanDaily I love My 5 Wishes+Voicing My Choices - used them w/ teens&parents re: my thesis with Duchenne MD teens. #btsm
Melanie Kabo @MelanieKabo
T3-My family knows my wishes, but I should write them down. I just feel like they can do with my what they want as I won’t care. #btsm
Enlightening Results 💡 @GraceCordovano
RT @TheLizArmy: PRO TIP: PRO TIP: Make copies of your advance directive. Give a copy to your decision-maker, other family members, and send a copy to your doctor to put in your medical record. If you email it to your doctor, it becomes part of your record. I tested this with Epic/MyChart. #BTSM https://t.co/qrfP88cf6o
National Brain Tumor Society @NBTStweets
Next Month's #btsm chat looks to be a doozy. We're looking forward to it! https://t.co/rRTMJsjTeR
Janet Freeman-Daily @JFreemanDaily
Thanks for inviting me to participate in this #BTSM chat on advance care planning--such an important topic, needs more awareness
Arif Nazir @Arif_Nazir_MD
RT @karlsteinberg: To help start conversations with family members, even reluctant ones, the Conversation Project https://t.co/wxdQn2eRsp #btsm
Charlie Blotner @CBlotner_
@JFreemanDaily @TheLizArmy You and I are definitely getting together to continue this conversation sometime soon! #btsm
Lisa O'Leary @lisaoleary524
@MelanieKabo Write them down - the end really tests people. Do it for them, even if you won't care. It's a huge gift to them. #btsm
Arif Nazir @Arif_Nazir_MD
RT @karlsteinberg: Will try to make this #advancecareplanning tweet chat this evening at 6 pm PST ! #BTSM @TheLizArmy @CBlotner_ https://t.co/2QHMSqx1qk
Liz Salmi @TheLizArmy
@DrJeffWeinberg How much easier would it be if the patient (and care partners) asked you about it first? #BTSM
Debi Cirasole @DebiCasserole
@BTSMchat If you're like me, and receive care out-of-state: AD/POA/Living Will should be able to cross state lines, but it doesn't hurt to look at the requirements per state, just in case. #btsm
Liz Salmi @TheLizArmy
RT @DrJeffWeinberg: Personally,my wife and I have our own advanced directives. But one issue care givers have is raising the issue of AD at or near time of dx. We have a problem across all cancers of pts not discussing AD early because it implies ‘not fighting’. Thoughts from the community? #BTSM
Timothy Craig Allen, MD, JD, FCAP @TimAllenMDJD
RT @JFreemanDaily: T3: T3: Conversations about end of life preferences is REALLY important, because paperwork can't cover all possibilities #btsm
Dr. rer. pol.Sabine Schwab @Sabine_NJ
RT @BTSMchat: Mark your calendars for next #BTSM chat: Sunday, February 4, 6pm PT/9pm ET. Special guest is Elizabeth B. Claus, M… https://t.co/eEOLox6LqO
Debi Cirasole @DebiCasserole
RT @JFreemanDaily: Resources for EOL/Advance Care Planning: Resources for EOL/Advance Care Planning: The Conversation Project (great for families) https://t.co/ZaVGxeEkmy #btsm
Sean Sachdev, MD @SeanSachdevMD
@JFreemanDaily Most of us stress importance of advance directives/planning in oncology but edifying to listen to different concerns/viewpoints tonight. It is said that you never stop learning as a physician. Tonight was no exception. #btsm
Tami Dew Rich, MBA @bostonheartmom
@TheLizArmy @karlsteinberg Here's an amazing graphic from https://t.co/z0mMZllI7F In MA the MOLST (m for medical orders) is hot pink, and kept in those long lit boxes you see in PCPs & Hem/Onc offices. Confusing to complete; I'd like to see more educ in community settings (libraries, SrCtrs) #btsm #hcldr https://t.co/4Ne5fTLw0h
Debi Cirasole @DebiCasserole
RT @JFreemanDaily: T3: T3: Conversations about end of life preferences is REALLY important, because paperwork can't cover all possibilities #btsm
Lisa O'Leary @lisaoleary524
@TheLizArmy @adamhayden I am inspired by survivors like you every day. You make staying in the fight so worth it. #BTSM
Liz Salmi @TheLizArmy
@GraceCordovano Looking to write a whole blog post about this soon. LOL #BTSM For now, my basics are on my blog: https://t.co/mfnrKH4FLZ My signed copies are on my Google Drive.
Enlightening Results 💡 @GraceCordovano
@DrJeffWeinberg Have seen many positives of incorporating palliative care teams early, immediately following diagnosis, to help with the conversations. #btsm
Lisa O'Leary @lisaoleary524
@BTSMchat @JAMAOnc Thank you! Beautiful and poignant. #btsm
Liz Salmi @TheLizArmy
@CBlotner_ @JFreemanDaily Charlie and I are huge nerds on this topic. We could talk at length. #BTSM
Tami Dew Rich, MBA @bostonheartmom
@TheLizArmy @karlsteinberg Whoops that's https://t.co/FILfCY2WSU as I wrote on the graphic not my last tweet #btsm #hcldr
Enlightening Results 💡 @GraceCordovano
@TheLizArmy You must keep me posted as I’ve had a number of conversations on this with patients & their loved ones. #btsm
Janet Freeman-Daily @JFreemanDaily
@CBlotner_ @TheLizArmy Most definitely! Glad you're in my stomping grounds now! #BTSM
Liz Salmi @TheLizArmy
RT @sean_sachdev: @JFreemanDaily Most of us stress importance of advance directives/planning in oncology but edifying to listen to different concerns/viewpoints tonight. It is said that you never stop learning as a physician. Tonight was no exception. #btsm
Erica Robinson @eleighrobs
@BTSMchat @JAMAOnc Thank you #BTSM
Janet Freeman-Daily @JFreemanDaily
@TheLizArmy @CBlotner_ Maybe a recorded Zoom conversation on the subject is in our future? #btsm
Liz Salmi @TheLizArmy
@GraceCordovano OH YEAH, and I emailed PDF copies to my two health systems so that they are part of the medical record. Still not sure if there is a way to sort this info in Epic. #BTSM
Amanda Haddock 🧬 @AmandaHaddock
RT @TheLizArmy: @GraceCordovano Looking to write a whole blog post about this soon. LOL #BTSM For now, my basics are on my blog: https://t.co/mfnrKH4FLZ My signed copies are on my Google Drive.
Charlie Blotner @CBlotner_
@JFreemanDaily @TheLizArmy Most definitely! We've already had one on the topic related to what it means to die with brain cancer with @adamhayden and @MichaelDFratkin. #btsm
Amanda Haddock 🧬 @AmandaHaddock
RT @TheLizArmy: PRO TIP: PRO TIP: Make copies of your advance directive. Give a copy to your decision-maker, other family members, and send a copy to your doctor to put in your medical record. If you email it to your doctor, it becomes part of your record. I tested this with Epic/MyChart. #BTSM https://t.co/qrfP88cf6o
Janet Freeman-Daily @JFreemanDaily
Here's a blog I wrote on the subject almost four years ago: "Sharing End-of-Life Preferences" https://t.co/OCI2MjRg7w #btsm
Liz Salmi @TheLizArmy
@JFreemanDaily @CBlotner_ We're already doing this with @MichaelDFratkin! The more the merrier! #BTSM
Amanda Haddock 🧬 @AmandaHaddock
RT @JFreemanDaily: Here's a blog I wrote on the subject almost four years ago: Here's a blog I wrote on the subject almost four years ago: "Sharing End-of-Life Preferences" https://t.co/OCI2MjRg7w #btsm
Jeffrey S. Weinberg @DrJeffWeinberg
@TheLizArmy Much easier. My experience is that pts are reluctant to discuss AD when they are 1st learning of their disease, difficult information about prognosis & need for neurosurgical intervention. Difficult to discuss AD when we r educating pt re disease and how to fight. #btsm
Enlightening Results 💡 @GraceCordovano
@TheLizArmy Do patient portals have advanced directive sections? 🤔 #btsm
Tahu Hikuroa FDTN @tahuhikuroafdn
RT @GraceCordovano: Sharing a great resource: Sharing a great resource: The Conversation Project https://t.co/PyIDawwdQ7 #btsm
Tahu Hikuroa FDTN @tahuhikuroafdn
RT @karlsteinberg: For those more seriously ill or nearing death, in states that have them, #POLST forms https://t.co/UDeBU3HNUV. @thelizarmy knows this! #btsm
Lisa O'Leary @lisaoleary524
Looks like we are wrapping up - Happy New Year everyone! #btsm
Mary🦄 Gurney, RPh, PhD, BCPA, FAPhA @rphteach
RT @TheLizArmy: If anyone is interested, you can see my complete advance directive online. I used the generic form for my state, and customized it to include specific things that matter to me: https://t.co/mfnrKH4FLZ. #BTSM
Jeffrey S. Weinberg @DrJeffWeinberg
@GraceCordovano Agree. Culture change across entire oncology specialty. #BTSM
Enlightening Results 💡 @GraceCordovano
Thanks for an amazing & insightful hour #btsm! Until next time!
Erica Robinson @eleighrobs
@lisaoleary524 Happy 2018 everyone! See you Feb 4th! #BTSM
Melanie Kabo @MelanieKabo
Happy New Years!! See you next month and hopefully not on my worst chemo day. #btsm
St_Molly_AgentofChaos @Lifeiskitsch
RT @TheLizArmy: PRO TIP: PRO TIP: Make copies of your advance directive. Give a copy to your decision-maker, other family members, and send a copy to your doctor to put in your medical record. If you email it to your doctor, it becomes part of your record. I tested this with Epic/MyChart. #BTSM https://t.co/qrfP88cf6o
Tami Dew Rich, MBA @bostonheartmom
@DrJeffWeinberg ❤️ how @jamaOnc piece addresses: Yes it's hard to unpack all that nuance: fight metaphors; which choices at which time, etc... I believe it cd be presented as Menu: "Here are some things u may hear abt, be thinking or worried abt: Let's discuss when you're ready. #btsm #hcldr
Advance Care Planning Australia @ACPAustralia
Thank you, everyone. Have a good night! #btsm
Patti & Ron Gauvin @pattigauvin
@BTSMchat @YaleSPH @BrighamWomens @theIBTA Our amazing doctor. Looking forward to her discussion #btsm
Guy Lipof - גיא @Project2Program
@JFreemanDaily Thank you Janet! @Atul_Gawande is one of my favorite authors. His books and other published works are extremely valuable, whether we are a patient, care partner or provider. #BTSM
Karl Steinberg MD CMD HMDC (he/him) @karlsteinberg
RT @TheLizArmy: PRO TIP: PRO TIP: Make copies of your advance directive. Give a copy to your decision-maker, other family members, and send a copy to your doctor to put in your medical record. If you email it to your doctor, it becomes part of your record. I tested this with Epic/MyChart. #BTSM https://t.co/qrfP88cf6o
Guy Lipof - גיא @Project2Program
RT @JFreemanDaily: Here's a blog I wrote on the subject almost four years ago: Here's a blog I wrote on the subject almost four years ago: "Sharing End-of-Life Preferences" https://t.co/OCI2MjRg7w #btsm
Erica Robinson @eleighrobs
@BTSMchat @TheLizArmy @CBlotner_ @adamhayden Thank YOU, inspiring moderators! #BTSM
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