#BCSM transcript

Healthcare Social Media Transcript

From:Mon Nov 26 18:00:00 PST 2012
To:Mon Nov 26 19:15:00 PST 2012

What is #BCSM? Who were the influencers during this time period? #BCSM analytics


Healthcare Conference  - Healthcare Tweet Chats  -  Healthcare Analytics

fischmd
Good evening! It is nice to be with this inspiring group. This is my first tweet chat. #rookie #bcsm
AileenGraef
Evening, evryone. Not a cancer patient but my mom was and experienced the hospice/palliative care with her #bcsm
chemobrainfog
@colleen_young **waving to you** #bcsm
jodyms
Hi everyone, I'm Jody Schoger - welcome to our weekly chat. I'm co-moderating along with @drattai and @stales. #bcsm
KathyKastner
Good evening @jodyms @ctsinclair @fischmd : how could I resist a chat with #hpm in it?#bcsm
jodyms
I'm going to make a few announcements before we start officially:) #bcsm
ReadEatWriteRun
This is fantastic. MT @jodyms: hat cancer is really like:The Back Story http://t.co/4rty8cdt via @NancysPoint (is author on Twitter?) #bcsm
chemobrainfog
@fischmd Welcome! #bcsm
jodyms
We usually take a few minutes to introduce ourselves. While you're doing that I want to make a special welcome to our guests... #bcsm
brevagen
Hi folks! Great to be back after - hope you all had a great Thanksgiving (if you celebrate) #bcsm
fischmd
@chemobrainfog Big smile. Thank you! #bcsm
MDAnderson_POE
Good evening. This is my first #bcsm tweet chat. Not a cancer patient, but have many loved one's who have been through palliative care.
jodyms
Two wonderful physicians @fischmd, an oncologist at MDAnderson w/specialties in palliative medicine & survivorship and #bcsm
ctsinclair
Good evening all #BCSM
DrAttai
hello everyone, especially first-timers! Deanna Attai, breast surgeon in LA, co-moderating with @jodyms and @stales #bcsm
ThisKatieNow
Hey all! Can't stay around tonight, but wanted to say howdy. Enjoy the chatty chat and I'll look for the transcript tomorrow. PEACE #bcsm
BreastCaUnder40
Thanks all, glad you liked it and hello #bcsm chat tonight! @ReadEatWriteRun @jodyms @NancysPoint
a4breastcancer
Hi Donna, AnneMarie, Jody..... Just got off flights Dr Attai..AliciaHi Everyone #bcsm
obogler
Hi everyone - cool to have Dr. Fisch on tonight - a colleague and friend of mine at MD Anderson #bcsm
jodyms
@CTSinclair, a palliative medicine physicians & advocate, editor of @pallimed & #HPM co-founder. We're lucky to have them tonight. #bcsm
DrAttai
@ctsinclair @fischmd thank you so much for joining us tonight for such an important topic #bcsm
ctsinclair
Hello everyone, glad to be invited to join this very active tweetchat. Have been listening in the last few weeks. #BCSM
jodyms
Welcome @drattai @fischMD @ctsinclair @colleen_young - and welcome all:) #bcsm
DrAttai
@ThisKatieNow we will definitely post the transcript - thanks for stopping by! #bcsm
stales
Hi everyone! #bcsm
KathyKastner
intro: developed BestEndings .com result of learning from #hpm and @ctsinclair #bcsm
stales
Welcome to tonight's chat! Looking forward to tonight's chat! #bcsm
FightingFancy
know any ladies going through chemo under 40 who need a Fighting Fancy bag? Mailing them out daily! RT and help me spread the word! #bcsm
colleen_young
Hi Colleen here, community manager and moderator for @VirtualHospice. #bcsm
ChapmandeRojas
Hanging out at #BCSM chat this evening for first time. Beloved family member currently undergoing chemo for breast cancer.
ctsinclair
@DrAttai @jodyms @stales Thank you very much for the invite. I love to connect with other health care tweetchat groups. #BCSM
annwax
Hi to everyone. Glad to make the chat tonite. Nurse, author, consultant speaker on health and wellness. #bcsm
xeni
#BCSM Hi everyone, Xeni from @BoingBoing. I was dx'd w/Stage2 IDC on 12/01/2011. I'm honorary aunt of @AileenGraef; was there with her mom.
jodyms
Tonight's topic -- palliative care & hospice - has been on my mind for a long time. The mopre we know, the less fearful we are. #bcsm
CJMeta
Hi! Hope everyone had a wonderful Thanksgiving! I'm CJ .. Pres of METAvivor & living 6 yrs with MBC to lung. #bcsm
AdvancedCancerA
Advanced #Holistic & Medical treatments in #Scottsdale AZ 480-240-2600; Breast Cancer Cause and Consequences >> http://t.co/tGbHBya3 #BCSM
brevagen
@ctsinclair welcome! glad you're joining in. #bcsm
xeni
Non-cancer peeps: for the next hour, I'll be participating in the weekly Breast Cancer Social Media chat (#BCSM). Mute if you like. or STFU.
AdvancedMedAZ
Advanced #Holistic & Medical treatments in #Scottsdale AZ 480-240-2600; Breast Cancer Cause and Consequences >> http://t.co/IUAOaTi0 #BCSM
thatdrew
RT @xeni: Non-cancer peeps: for the next hour, I'll be participating in the weekly Breast Cancer Social Media chat (#BCSM). Mute if you like. or STFU.
brevagen
@ChapmandeRojas Wonderful that you're here as a supporter - awareness is an amazing gift. #bcsm
jodyms
My mother died of cancer when I was 32; she had beautiful care. I have a special place in my heart for professionals in this field. #bcsm
catpaw
RT @xeni: Non-cancer peeps: for the next hour, I'll be participating in the weekly Breast Cancer Social Media chat (#BCSM). Mute if you like. or STFU.
VirtualHospice
Tonight #bcsm is talking palliative and hospice care. We'll be participating for the next hour. @colleen_young tweeting.
DrAttai
@FightingFancy thanks for letting us know we're trying to keep the tweets relevant to tonight's topic of hospice & palliative medicine #bcsm
ctsinclair
Great to see some familiar faces from #hpm chats here. Looking forward to making some new friends tonight and learn from each other #BCSM
stales
@xeni HA HA. Love that disclaimer #bcsm
CJMeta
RT @jodyms: Tonights topic -- palliative care/hospice. The more we know, the less fearful we are. #bcsm
ctsinclair
@xeni I love your disclaimer for flooding your tweetstream. #BCSM
stales
RT @jodyms: Tonights topic -palliative care & hospice has been on my mind for a long time. The more we know, the less fearful we are #bcsm
jodyms
I have two more announcements then I'll start the questions! 1) Please keep your RT volume down. This leaves room for more convo:) #bcsm
KathyKastner
RT @CJMeta: RT @jodyms: Tonights topic -- palliative care/hospice. The more we know, the less fearful we are. #bcsm
best_endings
RT @CJMeta: RT @jodyms: Tonights topic -- palliative care/hospice. The more we know, the less fearful we are. #bcsm
NancysPoint
Good evening all. Nancy here. Writer, blogger, advocate, 2 1/2 yrs post bc dx. welcome to guests. #bcsm
stales
Great to see so many people here tonight! #bcsm
annwax
@ChapmandeRojas You will meet amazing ppl in this #BCSm chat. Also you will gather a gr8t deal of information
ageekmom
RT @xeni: Non-cancer peeps: for the next hour, I'll be participating in the weekly Breast Cancer Social Media chat (#BCSM). Mute if you like. or STFU.
fischmd
My Mom was diagnosed with #breastcancer when I was 11 yrs old, was treated and recurred on the other side #bcsm
CJMeta
Homecared my father-in-law for his last yr - lung cancer. Hospice was a great help. #bcsm
uvmer
Hello to everyone. I'm a lurking #fearlessfriend. #bcsm
ctsinclair
RT @jodyms: Tonights topic-palliative care & hospice - has been on my mind for long time. The more we know, the less fearful we are. #BCSM
jodyms
2) I'll pose questions to @fischmd and @ctsinclair then open up the forum for questions and sharing. How's that? #bcsm
BreastCaUnder40
,@ReadEatWriteRun @jodyms @NancysPoint Yes #bcsm is a great group as I have recently had the privilege to learn!
CJMeta
Helped my mom homecared my dad ... he died Alzheimers age 73. She had no help. It was pretty rough. Hospice wld've been such a help. #bcsm
DrAttai
Hospice / palliative care is such an important topic - and not well understood by patients and physicians #bcsm
fischmd
My Mom survived breast cancer and lived long enough to develop 2 additional cancers. I'm grateful.. #bcsm
chemobrainfog
I just held my best friend's hand. Her dad died last week. In home hospice was incredible. #bcsm
best_endings
RT @DrAttai: Hospice / palliative care is such an important topic - and not well understood by patients and physicians #bcsm
jodyms
@fischmd @ctsinclair Q1: Let's start with clear distinctions between palliative care and hospice. Many lump these together. #bcsm
jhjones
Following http://t.co/ot5YuZNH Breast Cancer Social Media 6-7 Pacific, 9-10 Eastern right now.Subject Palliative Care tonight #BCSM
drseisenberg
Dr. E, breast cancer medical oncologist and co-songwriter with breast cancer patients. #bcsm
brevagen
Ditto --> RT @stales: Great to see so many people here tonight! #bcsm
DrAttai
glad to see you tonight - lurkers always welcome! RT @uvmer: Hello to everyone. Im a lurking #fearlessfriend. #bcsm
stales
RT @jodyms: 2) Ill pose questions to @fischmd and @ctsinclair then open up the forum for questions and sharing. Hows that? #bcsm
stales
Welcome to all the #fearlessfriends tonight. #bcsm
fischmd
T1: #HPM features: comprehensive, interdisciplinary, pts & families, context is serious illness, goal is prevent/relieve suffering #bcsm
CJMeta
RT @jodyms: @fischmd @ctsinclair Q1: Lets start with clear distinctions between palliative care and hospice. Many lump these together. #bcsm
uvmer
@DrAttai (: #bcsm
JBaldwinGlenn
Hi All; Newby to Twitter. 2nd #BCSM tweetchat. Stage 1A bc diagnosis 12/16/11. Grndfther had wonderful hospice care 25 yrs ago. #BCSM
SFVMathTutor
RT @xeni: Non-cancer peeps: for the next hour, I'll be participating in the weekly Breast Cancer Social Media chat (#BCSM). Mute if you like. or STFU.
ABHuret
Hi All -- not home so will try my best via mobile. Hugs! #bcsm
ctsinclair
T1: I like to tell it as an origins story. Palliative care has really sprung from the hospice movement... #BCSM
jodyms
My tweetchat is moving particularly slow this evening. #bcsm
ctsinclair
...to take the patient/family centered approach to symptom control, instead of disease focus. But with less focus on the prognostics #BCSM
jodyms
RT @ctsinclair: T1: I like to tell it as an origins story. Palliative care has really sprung from the hospice movement... #bcsm
hey_leia
I went through the hospice experience when my dad died in 2007 (cholangiocarcinoma) - I'm an only child and very grateful for hopsice #bcsm
drseisenberg
Hospice peeps are the best on the planet! #bcsm
CJMeta
Definitions pls. #bcsm
jodyms
@ctsinclair @fischmd a patient/family centered approach with less focus on prognostics. I like that! #bcsm
stales
RT @jodyms @fischmd @ctsinclair Q1: Let's start with clear distinctions between palliative care and hospice. Many lump these together #bcsm
ctsinclair
Hospice and palliative care share a lot of themes: as @fischmd noted. Big difference is the hospice benefit is defined by prognosis. #BCSM
best_endings
RT @jodyms: @ctsinclair @fischmd a patient/family centered approach with less focus on prognostics. I like that! #bcsm
fischmd
T1: Good info about #HPM from NCI & ASCO (definitions, podcasts, clinical opinions) http://t.co/aNpleZWM http://t.co/kfSLok1b #bcsm
NancysPoint
@danceswithpens hi donna. great to see you here. #bcsm
annwax
@ctsinclair When I first started oncology nursing Hospice and palliative care were only at talking stages re cancer. #bcsm
jodyms
@CJMeta which part, CJ? They are defining what palliative care is now. #bcsm
TimAllenMDJD
RT @obogler: RT @DrAttai: 30 minutes until #BCSM - tonights chat - @fischmd & @ctsinclair on palliative care/hospice cc: @jodyms @st ...
DrAttai
getting away from prognosis, focusing on what the patient and family need @jodyms: @ctsinclair @fischmd #bcsm
CJMeta
@jodyms Txs! ... was lost. #bcsm
ctsinclair
@CJMeta Palliative Care - is relieving the symptoms of a disease or disorder through a whole person approach not just disease focused #BCSM
stales
RT @ctsinclair: Hospice & palliative care share themes: as @fischmd noted. Big difference is hospice benefit is defined by prognosis. #bcsm
smerv
RT @obogler: RT @DrAttai: 30 minutes until #BCSM - tonights chat - @fischmd & @ctsinclair on palliative care/hospice cc: @jodyms @st ...
jodyms
RT @ctsinclair: Hospice & palliative care share a lot of themes: as @fischmd noted. Big dif: hospice benefit is defined by prognosis. #bcsm
DrAttai
RT @fischmd: T1: Good info about #HPM from NCI & ASCO http://t.co/LBvLea2E http://t.co/IFcS0xN1 #bcsm
stales
RT @fischmd: T1: Good info about #HPM from NCI & ASCO (defs, podcasts, clinical opinions) http://t.co/ooVGAf5G http://t.co/Kqh7cmc9 #bcsm
jodyms
Everyone - please remember to keep your RT's down for now so we can see the answers to the questions. #bcsm
fischmd
T1: Great answers to common questions about #palliative care and #hospice http://t.co/oh5yGCLl #bcsm
jodyms
RT @fischmd: T1: Great answers to common questions about #palliative care and #hospice http://t.co/pq15z9k6 #bcsm
annwax
@stales @ctsinclair @fischmd palliative care can be something as just checking on a homebound pt, just see if they r eating right. #bcsm
talkabouthealth
Excited about #hpm chat tonight on #bcsm! Murray here :) TY to @fischmd & @ctsinclair for sharing.
MDAndersonNews
RT @fischmd: T1: Great answers to common questions about #palliative care and #hospice http://t.co/hfIpO8vW #bcsm
VirtualHospice
On our forum member explained, Palliative care is where you get to give info about yourself, not only ask for info about the disease. #bcsm
ctsinclair
Palliative care is for anyone diagnosed w/ a serious illness. "At any age, at any stage a PC team can help your quality of life" #BCSM
jodyms
@fischmd T1a: from the links, what part do you like to emphasize with patients? Or someone new to the concept? #bcsm
DrAttai
MT @ctsinclair: @CJMeta Palliative Care -relieving the symptoms of a disease/disorder - whole person approach not just disease focused #bcsm
stales
RT @fischmd: T1: Great answers to common questions about #palliative care and #hospice http://t.co/MB6yds3I #bcsm
SurvivorRunner
#bcsm Here and lurking tonight:) Kind of nervous about the topic.
stales
RT @jodyms: Everyone - please remember to keep your RTs down for now so we can see the answers to the questions. #bcsm
DrAttai
@annwax that's correct even simple things count as palliative care. It's about comfort and addressing needs #bcsm
davidkroll
RT @jodyms: Everyone - please remember to keep your RT's down for now so we can see the answers to the questions. #bcsm
ctsinclair
@annwax We have come a long way. #BCSM
jodyms
@fischMD @ctsinclair T1a: my sense is that few of us are familiar w/palliative services or how to obtain them. #bcsm
VirtualHospice
What is palliative care? http://t.co/Tuj42G9r #bcsm
fischmd
@jodyms I emphasize that #HPM is centered on the person and family. To understand the person is key to relief of suffering #bcsm
uvmer
First heard the words palliative care in the very dire stages of partner's brain cancer...horrifying words to me. #bcsm
ctsinclair
@SurvivorRunner If anything we say makes you run the other way, DM me later and I'll make sure to clear up any confusion. #BCSM
jodyms
@SurvivorRunner That's why we are talking about it. Just learning a little bit helps, I've found. #bcsm
jodyms
RT @VirtualHospice: What is palliative care? http://t.co/SMoiMdoz #bcsm
annwax
@DrAttai Anyone can participate in comfort. I try to stress this with my patient's friends and family. Many feel they mst do something #bcsm
ctsinclair
T1a: Most access to palliative care is in the hospital with a PC team. But they are starting to move into clinics and outpatient #BCSM
DrAttai
@SurvivorRunner you'll be ok - you're among friends here! #bcsm
KathyKastner
RT @jodyms: @SurvivorRunner That's why we are talking about it. Just learning a little bit helps, I've found. #bcsm
ABHuret
Q1 the difference between the two has never been clear. #bcsm
SurvivorRunner
@jodyms I agree, just brings up fears that sometimes get buried I think. #bcsm
annwax
@ctsinclair We have come a long way. Hvr, more ppl are not aware of the benefits of hospice. #bcsm
jodyms
T1: When I was in treatment the palliative care services were WAY off the beaten path...it was frightening to me then. No more. #bcsm
BCSisterhood
Hello everyone. Brenda Coffee here. I will catchup with the conversation. So glad to see all of you. #BCSM
DrAttai
@ctsinclair important point as much care is being moved from the hospitals to outpatient settings #bcsm
VirtualHospice
.@jodyms You're right there. Not only what is pall care, but when can I get it and where and how are common questions. #bcsm
SurvivorRunner
@ctsinclair Thank you:) #bcsm
ctsinclair
T1a: Common misconception is palliative care is JUST another word for hospice (trying to dress it up, or deceive). #BCSM
Brandie185
Evening all ... just jumping in now! #bcsm
jodyms
@ctsinclair Q1b: are they readily identified as palliative care? I was wondering if wording varies. #bcsm
stales
RT @ctsinclair: T1a: Common misconception is palliative care is JUST another word for hospice (trying to dress it up, or deceive). #bcsm
ctsinclair
T1a: But you will find most palliative care programs are attached/affiliated with hospice because of shared values and expertise. #BCSM
annwax
@BCSisterhood welcome! #bcsm
gmasandi1
@ctsinclair Hospice focuses on comfort when cure is not possible. Admission determined by Medicare guidelines #LCD #BCSM
jodyms
RT @ctsinclair: T1a: Common misconception is palliative care is JUST another word for hospice - obviously isn't tho, correct? #bcsm
KathyKastner
RT @ctsinclair: T1a: Common misconception is palliative care is JUST another word for hospice (trying to dress it up, or deceive). #BCSM
CJMeta
Have been reading link. Hve trouble w concept. Have had mets six yrs. Def defines my treatment as palliative. Do u agree? #bcsm
fischmd
@DrAttai It is so important to integrate #palliative care early into course of serious illness...outpatient access is key #bcsm
colleen_young
Also important to note that palliative care is not necessarily end-of-life care. Can you elaborate @ctsinclair @fischmd #bcsm
stales
RT @ctsinclair: T1a: you'll find most palliative care programs are attached/affiliated w/ hospice because of shared values & expertise #bcsm
BCSisterhood
@annwax Thanks:) #BCSM
stales
RT @fischmd: @DrAttai It is so important to integrate #palliative care early into course of serious illness...outpatient access is key #bcsm
ctsinclair
@jodyms T1b: Wording does vary 'Supportive Care' being the most common alternate name. http://t.co/lJx76Ms9 hasa good directory #BCSM
DrAttai
@fischmd agree - difficult sometimes to discuss - from all sides #bcsm
BCSisterhood
RT @ctsinclair: T1a: Common misconception is palliative care is JUST another word for hospice (trying to dress it up, or deceive). #BCSM
VirtualHospice
@ctsinclair In Canada we have home palliative care and home hospice care in many regions. Not so in US? #bcsm
ABHuret
@xeni love! Lol! #bcsm
a4breastcancer
I think friends and family misconceive because they both have to do with making the loved one as comfortable as possible #bcsm
NancysPoint
I wish I had understood the difference when my mom was ill a few years ago. #bcsm
mike_stellar
RT @xeni: Non-cancer peeps: for the next hour, I'll be participating in the weekly Breast Cancer Social Media chat (#BCSM). Mute if you like. or STFU.
jodyms
Great comments frm @ctsinclair & @fischmd: if anything discussed is anxiety provoking ask add'l questions & get the answers u need. #bcsm
miamicrime
#bcsm (breast cancer social media) until 10 pm. Joining in a little late #scary subject
uvmer
@colleen_young got the sense that palliative care and end of life care were pretty much the same...maybe stage we were in #bcsm
annwax
@gmasandi1 @ctsinclair Hvr, thr r some ppl that do get better on hospice and they get off hospice. #bcsm
talkabouthealth
RT @fischmd: @DrAttai It is so important to integrate #palliative care early into course of serious illness...outpatient access is key #bcsm
DrAttai
@CJMeta yes, you fit the definition of palliative - does it make sense to you? #bcsm
drseisenberg
RT @ctsinclair: T1a: Common misconception is palliative care is JUST another word for hospice (trying to dress it up, or deceive). #bcsm
jodyms
RT @stales: RT @fischmd: @DrAttai It is so imp to integrate #palliative care early into course of serious illness..outpt access is key #bcsm
fischmd
@colleen_young #palliative care is an approach to care that is valid for all serious illness, and into long-term survivorship too #bcsm
ctsinclair
Palliative Care teams in hospital can be called for in very complex situations like the ICU, but they can help upstream in care too. #BCSM
moyecome
RT @ctsinclair: T1a: Common misconception is palliative care is JUST another word for hospice (trying to dress it up, or deceive). #BCSM
jodyms
Q1: From my experience w/a friend? Supportive services should begin long before the patient is in terrible pain. That is unnecessary. #bcsm
stales
RT @fischmd: #palliative care is an approach to care that is valid for all serious illness, and into long-term survivorship too #bcsm
theSPEACHgal
Good Evening #BCSM'rs... joining in late but happy to be here now :)
colleen_young
@CJMeta That would be my understanding. You should be elligible for palliative care. #bcsm
drseisenberg
RT @fischmd: palliative care is an approach to care that is valid for all serious illness, and into long-term survivorship too #bcsm
BCSisterhood
@colleen_young #palliative care is an approach to care that is valid for all serious illness, and into long-term survivorship too #BCSM
jodyms
RT @fischmd: @colleen_young #palliative care is an approach that is valid for all serious illness & into long-term survivorship too #bcsm
DrAttai
@uvmer @colleen_young sometimes they are all the same - not always #bcsm
ctsinclair
@uvmer Palliative Care can handle EOL (end of life) situations and in hospitals this is often how they are used when starting up #BCSM
stales
@miamicrime Yes - it's a scary topic for many of us. Good to learn about it tonight from the experts. #bcsm
drseisenberg
It seems to me that every patient going through chemotherapy should have a palliative care team... #bcsm
ABHuret
@drseisenberg @ctsinclair #bcsm that's been my misconception too.
annwax
@jodyms In this day and age, a person should not be in pain. #bcsm
jodyms
Q1: There are distinct differences; palliative services can be added at any time they are necessary in the course of survivorship. #bcsm
MDAnderson_POE
@fischmd: how does one, MD Anderson for example, integrate #palliative care early into course of serious illness? #bcsm
ctsinclair
Once a palliative care team is established they work hard to not just be the in-hospital EOL team. PC teams want to help earlier #BCSM
BCSisterhood
RT @drseisenberg: It seems to me that every patient going through chemotherapy should have a palliative care team... #BCSM
gmasandi1
@annwax @ctsinclair True we do "graduate" some when they no longer meet the Hospice guidelines #BCSM
colleen_young
@uvmer My understanding is that palliative is symptom management, which may be at end of life, but also may not be end stage. #bcsm
ctsinclair
RT @drseisenberg: It seems to me that every patient going through chemotherapy should have a palliative care team... "RTx1000" #BCSM
jodyms
@annwax I agree. But it happens. #bcsm
DrAttai
@annwax complete pain-free is not always a realistic goal. But it's a goal. #bcsm
NancysPoint
@drseisenberg I agree. it should at least be discussed as an option. #bcsm
miamicrime
@ctsinclair who are the members of a PC team? #bcsm
aliciabloom
@colleen_young #palliative care has been shown to improve QoL & positively impact survival when provided concurrently with cancer tx #bcsm
fischmd
@stales I appreciate how difficult (and confusing) this topic can be...it is often discussed during vulnerable times #bcsm
danceswithpens
some confusion exists also bc as stage 4 they tell us we are basically receiving palliative tx, which differs with the specialty #bcsm
colleen_young
@uvmer In other words, you may be discharged from a palliative unit. It's not the "death" place as it is often misconceived as. #bcsm
SurvivorRunner
@drseisenberg Really? I've never heard it in reference to me... #bcsm
jodyms
T2: So the question becomes, how/when does palliative care become part of the breast cancer discussion? #bcsm
drseisenberg
RT @fischmd: @stales I appreciate how difficult (and confusing) this topic can be...it is often discussed during vulnerable times #bcsm
DrAttai
@fischmd @stales unfortunately no one wants to talk about it when it's not a critical issue #bcsm
colleen_young
TY RT @fischmd: #palliative care is an approach to care that is valid for all serious illness, and into long-term survivorship too #bcsm
annwax
@DrAttai Many times simple hydration helps to relive pain. #bcsm. I find that many pt's r not well hydrated
danceswithpens
then when they say, donna, you should consult with palliative med, it is scary bc it feels like options are gone #bcsm
BCSisterhood
@danceswithpens So thrilled you're home! #BCSM
ctsinclair
@a4breastcancer The word "Comfortable" can be overused in healthcare and people only start to see it as a code-word for hospice. #BCSM
CJMeta
Haven't seen palliative care offered separate of hospice. With mets u get treatment only. Shortly before death-hospice + palliative. #bcsm
uvmer
@colleen_young I met the palliative care doc when I was taking my partner home from icu because we wanted to be home. #bcsm
cleo4muse
RT @breastcancerfnd: Now Undeniable: #BreastCancer That Comes With the Job. Jeanne Rizzo via @HuffingtonPost http://t.co/PdztNpLR #BCSM
fischmd
@colleen_young the goals of care for patients receiving palliative care vary, it depends on the individual situation #bcsm
DrAttai
@annwax yes, you're right #bcsm
BCSisterhood
RT @annwax: @DrAttai Many times simple hydration helps to relive pain. #bcsm. I find that many pts r not well hydrated #BCSM
jodyms
@ctsinclair @fischMD I don't understand why palliative/supportive therapies aren't introduced from the get-go. #bcsm
gmasandi1
@ctsinclair @uvmer Many of our Hospice patients begin in palliative care. #bcsm
KathyKastner
RT @jodyms: @ctsinclair @fischMD I don't understand why palliative/supportive therapies aren't introduced from the get-go. #bcsm
drseisenberg
@SurvivorRunner If symptoms out of control during therapy than totally appropriate... #bcsm
ctsinclair
T2: palliative care can be an important addition to a good oncology team when working with patients with breast cancer #BCSM
DrAttai
@danceswithpens no - it's about providing the best quality of life possible for you #bcsm
AdamsLisa
discussion of palliative care going on at weekly #bcsm (breast cancer social media) chat until 10 PM /EST.
DMWalsh618
@jodyms When? At the first visit. QOL and supportive care should be a part of treatment from day 1. #bcsm
moyecome
RT @ctsinclair: T2: palliative care can be an important addition to a good oncology team when working with patients with breast cancer #BCSM
fischmd
@CJMeta Ideally, palliative care is delivered concomitant with treatment to control the disease. They work hand-in-hand. #bcsm
stales
RT @ctsinclair: T2: palliative care can be an important addition to a good oncology team when working with patients with breast cancer #bcsm
jodyms
@danceswithpens That is understandable; but it's important to know what they are offering, I think. #bcsm
DrAttai
@danceswithpens working with you to allow you to be as comfortable and functional as possible #bcsm
drseisenberg
That's what it's all about, yes! RT @DrAttai: @danceswithpens no - its about providing the best quality of life possible for you #bcsm
CJMeta
When 1st DXd w mets, pts need palliative but don't get it. After they adjust, they don't need it until thgs get bad. #bcsm
colleen_young
@drseisenberg I would agree. A palliative referreral should be part of chemo. #bcsm Why is it not?
stales
RT @jodyms: T2: So the question becomes, how/when does palliative care become part of the breast cancer discussion? #bcsm
CJMeta
RT @fischmd: @CJMeta Ideally, palliative care is delivered concomitant with treatment to control the disease. They work hand-in-hand. #bcsm
stales
RT @jodyms: T2: So the question becomes, how/when does palliative care become part of the breast cancer discussion? #bcsm
CJMeta
RT @fischmd: @CJMeta Ideally, palliative care is delivered concomitant with treatment to control the disease. They work hand-in-hand. #bcsm
BCSisterhood
RT @fischmd: @CJMeta Ideally, palliative care is delivered concomitant with treatment to control the disease. They work hand-in-hand. #BCSM
jodyms
T2: A friend I was in treatment with received palliative services during treatment when her pain from radiation was terribly difficult #bcsm
drseisenberg
we need to make comfort, peace and overall patient experience from and center once and for all... #bcsm
ctsinclair
@uvmer Your experience is not uncommon. If you went back to talk to that PC team, I bet they are working to not just be in the ICU. #BCSM
CJMeta
RT @colleen_young: @drseisenberg I would agree. A palliative referreral should be part of chemo. #bcsm Why is it not? #bcsm
NancysPoint
why is palliative care not being discussed early on? #bcsm
colleen_young
@aliciabloom Exactly. #bcsm
brevagen
@ChapmandeRojas @annwax @xeni Serendipity is a great thing - enjoy! #bcsm
annwax
@DMWalsh618 @jodyms QOL and supportive care is supposed to start on time before u sign up for treatment. #bcsm
MDAndersonNews
RT @fischmd: @CJMeta Ideally, palliative care is delivered concomitant with treatment to control the disease. They work hand-in-hand. #bcsm
chemo_babe
#bcsm good friend is palliative care doc. She says now that patient satisfaction getting emphasis oncologists now want her on team early on
fischmd
T2: #HPM is good medicine (pts feel better+avoid hospitals, it lowers costs). Dr. Tom Smith via youtube: http://t.co/z9yAfWOv #bcsm
ctsinclair
@uvmer Palliative Care teams see a lot of suffering from disease and symptoms in hospitals, and the system can be too afraid to use PC #BCSM
stales
RT @aliciabloom #palliative care has been shown to improve QoL & positively impact survival when provided concurrently with cancer tx #bcsm
VirtualHospice
Don't forget palliative care includes family and friends too, not just the patient. #bcsm
jodyms
@NancysPoint That IS the question to me as well. #bcsm
SurvivorRunner
@drseisenberg Maybe that's why I didn't hear about it? #bcsm
KathyKastner
RT @VirtualHospice: Don't forget palliative care includes family and friends too, not just the patient. #bcsm
ctsinclair
You may be surprised to hear that doctors and nurses have similar misconceptions about palliative care and underutilize it. #BCSM
DrAttai
are there enough PC teams for every patient undergoing chemo? not sure about that. usually falls on med onc to triage #bcsm
chemo_babe
@fischmd I would think it increases compliance and therefore outcomes too. #bcsm
CJMeta
RT @jodyms: T2: A friend received palliative services during treatment when her pain from radiation. Yes .they don't normally get it. #bcsm
drseisenberg
Y RT @chemo_babe: good friend is palliative care doc. She says now that patient satisfaction getting emphasis oncologists now want #bcsm
VirtualHospice
@danceswithpens Palliative care should not be presented at last option. #bcsm
stales
RT @chemo_babe good friend is palliative care dr. She says now that patient satisfaction getting emphasis oncs want her on team early #bcsm
jodyms
RT @ctsinclair: Palliative Care teams see a lot of suffering frm disease & symptoms & the system can be too afraid to use #bcsm
NancysPoint
@ctsinclair how do we change this? #bcsm
fischmd
One limitation to more ideal use and integration of palliative care is that the workforce (experts, teams) is too small. #bcsm
silkyd67
RT @xeni: Non-cancer peeps: for the next hour, I'll be participating in the weekly Breast Cancer Social Media chat (#BCSM). Mute if you like. or STFU.
gmasandi1
@NancysPoint It is all about educating the community about Palliative care. #BCSM
stales
RT @ctsinclair: @uvmer Palliative Care teams see lot of suffering from disease & symptoms in hosp, and system can be afraid 2 use PC #bcsm
ctsinclair
Palliative care teams often share a lot of values with the patient empowerment movement. Be informed, be involved. #BCSM
jodyms
@ctsinclair @fischMD I started to learn so much from the weekly #HPM chats. Extremely comfortating, as cancer pt: to learn abt it #bcsm
stales
RT @fischmd: One limitation to more ideal use and integration of palliative care is that the workforce (experts, teams) is too small. #bcsm
xeni
@drattai For many of us, palliative care ends up=prescriptions for pills. No broader discussion of other tools—massage, for instance. #BCSM
uvmer
@ctsinclair Thats why I always assumed PC was the same as EOL care....which was so terrifying. Didn't want to even say the words #bcsm
DrAttai
@fischmd yes - that was my point. Especially for all of the outpatient chemo patients #bcsm
stales
RT @ctsinclair: You may be surprised to hear that doctors & nurses have similar misconceptions about palliative care & underutilize it #bcsm
jodyms
Good point worth emphasizing: palliative care does not mean "the end of the road." #bcsm
CJMeta
Ha! Before treatment. It can take weeks to get first MD appt after DX w mets. No one helps. Office staff attitude: deal with it. #bcsm
ctsinclair
@NancysPoint PC teams do a lot to try and break down misconceptions in hospitals. Takes a lot of time and 1:1 convos. #BCSM
fischmd
To some extent, since the expertise is too scarce, PC tends to be offered closer to the end-of-life. That will change... #bcsm
jodyms
RT @ctsinclair: Palliative care teams often share a lot of values with the patient empowerment movement. Be informed, be involved. #bcsm
danceswithpens
@VirtualHospice I think it is more the perception by the patient perhaps than the reality. #bcsm
miamicrime
#bcsm things are getting good for me. Finished treatment Jan.26. On tamoxifen & pain is manageable. The idea that 1 day I may need PC is sad
stales
good pt RT @xeni: @drattai For many of us, palliative care = Rxs for pills. No broader discussion of other tools—massage, for instance #bcsm
chemo_babe
@xeni @drattai right: proven therapies like acupuncture for neuropathy not covered by insurance #bcsm
stales
RT @fischmd: To some extent, since the expertise is too scarce, PC tends to be offered closer to the end-of-life. That will change #bcsm
DrAttai
@xeni and that's too bad - many aspects to helping with comfort. Massage, discussing sleep patterns, eating habits, so many things #bcsm
BCSisterhood
RT @ctsinclair: You may be surprised to hear that doctors & nurses have similar misconceptions about palliative care & underutilize it #BCSM
jodyms
@CJMeta Or try a different referral network? Does that make sense? #bcsm
craftychicky
@chemo_babe I have clients that have done concurrent care w/oncology & palliative care for symptom mgmt. improved quality of life #bcsm
ctsinclair
@uvmer You are not alone. Even PC teams feel frustration that palliative care often equated with hospital EOL care. #BCSM
CJMeta
Never heard of a palliative team at the 3 diff cancer ctrs I've been to in yrs of mets. #bcsm
jodyms
Yes @danceswithpens @VirtualHospice I think it is more the perception by the patient perhaps than the reality. #bcsm
stales
RT @uvmer: @ctsinclair Thats why I always assumed PC was the same as EOL care....which was so terrifying. Didnt want to say the words #bcsm
danceswithpens
PC physician approached me w it's time for you to decide whether u want to keep treating or to do other things . . . scared me . . . #bcsm
CarlaMazzone1
Excellent book called The Best Care Possible by Ira Byock,MD. Great for clinical & lay persons. #bcsm
chemo_babe
@craftychicky it's amazing but I paid out of pocket $$ #bcsm
colleen_young
@ctsinclair Family member given 12 months, I asked for palliative referreral. Oncologist said "Why, he's not symptomatic yet." argh #bcsm
DrAttai
@chemo_babe @xeni unfortunately that's true. But slowly changing with more data. These therapies can be almost lifesaving #bcsm
drseisenberg
We have to think of palliative care not as "pre-hospice", but QOL care from day one. #bcsm
ctsinclair
Palliative care teams are probably the most open to CAM therapies in nearly all the specialties. @xeni @DrAttai #BCSM
xeni
@miamicrime so glad to hear! Do remember as discussed here earlier, "palliative care" does not equal "hospice/end of the road care." #bcsm
KathyKastner
RT @ctsinclair: Palliative care teams are probably the most open to CAM therapies in nearly all the specialties. @xeni @DrAttai #BCSM
danceswithpens
(cont) even tho my onc said i have more options; PC doc made it feel like I did not; maybe her style did not synch w me #bcsm
DrAttai
@danceswithpens not the best approach, that's for sure #bcsm
CJMeta
@jodyms Dif referral network? Just seems if available it shld be evident. Wasn't evident at Hopkins or Georgetown. #bcsm
fischmd
T2: #Palliative care (broadly defined) is valid for #breastcancer pts integrated throughout the course of illness #bcsm
chemo_babe
RT @drseisenberg: We have to think of palliative care not as "pre-hospice", but QOL care from day one. #bcsm
VirtualHospice
@DrAttai Unfortunately there is not equal access to palliative care and definitely not enough to hospice. At least not in Cda. #bcsm
ctsinclair
RT @CarlaMazzone1: Excellent book called The Best Care Possible by @IraByock MD. Great for clinical & lay persons. "I second!" #BCSM
stales
The word hospice used to scare me. Then my father-in-law got very sick and went into a hospice facility, now I understand the process #bcsm
lsihra
RT @LizSzabo: Tonight at 9pm ET #bcsm will explore palliative care w/ @fischmd @ctsinclair. RT @ctsinclair @VirtualHospice
BCSisterhood
RT@drseisenberg We have to think of palliative care not as "pre-hospice", but QOL care from day one. #bcsm #BCSM
GPille
RT @VirtualHospice: Don't forget palliative care includes family and friends too, not just the patient. #bcsm
ctsinclair
@colleen_young Sigh, I have sadly heard that story too many times. But an empowered patient can demand/seek out palliative care #BCSM
annwax
@danceswithpens it can be scary when a pc physician puts that in front of you and u hv to decide ur future. #bcsm
jodyms
@fischMD @CTSinclair One a pt's deepest fears? Abandonment. How does pt assure care is welll coordinated? #bcsm
a4breastcancer
not surprised doctors and nurses have misconceptions from experience of as patient and family member- #bcsm
uvmer
@ctsinclair where are PC people "housed"...how do they become integrated? Only brought in by docs who understand what PC really is? #bcsm
jodyms
@stales We can sharemore of these in a moment:) #bcsm
drseisenberg
Nobody ever wants to go through treatment for breast cancer or any cancer. But if one must, they must be comfortable throughout such. #bcsm
VirtualHospice
@danceswithpens You're right and we hope our website helps debunk the myths around palliative care and hospice. #bcsm
DrAttai
@stales sometimes it's hard to understand the process until you've been through it with a family member or friend #bcsm
jodyms
Please friends: we all know the chat is underway. No more need to RT announcements about tonight's chat. #bcsm
CJMeta
@ctsinclair Seek out palliative care? Only if they understd it. I bet almost none do. #bcsm
ctsinclair
Important point: Palliative Care teams love success/survivor stories too. I collect them. Not always about death and acceptance. #BCSM
fischmd
T3: "To prescribe pills is easy but to reach an understanding with people is very hard." -Franz Kafka #bcsm
DrAttai
excellent point RT @GPille: RT @VirtualHospice: Dont forget palliative care includes family and friends too, not just the patient. #bcsm
craftychicky
@chemo_babe @xeni @drattai some insurance plans (here in SD at least) are providing some acupuncture coverage. Nice change #bcsm
stales
RT @ctsinclair: Palliative Care teams love success/survivor stories too. I collect them. Not always about death and acceptance. #bcsm
ctsinclair
@uvmer Right now because of low workforce numbers, hospital based consults is where most PC exists. Funding for outpatient is weak. #BCSM
drseisenberg
@fischmd great one. #bcsm
fischmd
T3: No two people react the same to their illness or want the same exact things from their MD, nurse, family, friends.. #bcsm
feistybluegecko
Good morning all from Tuesday, sorry I am late again..... trying to find out the topic... #bcsm
jodyms
fischmd T3: "To prescribe pills is easy but to reach an understanding with people is very hard." -Franz Kafka #bcsm
drseisenberg
yay RT @craftychicky: @chemo_babe @xeni @drattai some insurance plans (here in SD at least) are providing some acupuncture coverage. #bcsm
ctsinclair
Hospice and Palliative Care is more than just opioids and pills (although important). Listening is our main tool. #BCSM
stales
RT @ctsinclair: @colleen_young I have sadly heard story too many times. But an empowered patient can demand/seek out palliative care #bcsm
xeni
Nothing if not Kafkaesque. RT @fischmd: "To prescribe pills is easy but to reach an understanding w people is very hard." -Franz Kafka #bcsm
jodyms
RT @fischmd: T3: No two people react the same to their illness or want the same exact things from their MD, nurse, family, friends.. #bcsm
DrAttai
how true RT @fischmd T3: "To prescribe pills is easy but to reach an understanding with people is very hard." -Franz Kafka #bcsm
BCSisterhood
@feistybluegecko Hello to the woman from tomorrow:) #BCSM
stales
@feistybluegecko hospice and pallative care #bcsm
drseisenberg
RT @ctsinclair: Hospice and Palliative Care is more than just opioids and pills (although important). Listening is our main tool. #bcsm
stales
RT @ctsinclair: Hospice and Palliative Care is more than just opioids and pills (although important). Listening is our main tool. #bcsm
ctsinclair
Surgery is to a surgeon as a family meeting is to a palliative care team. #BCSM
miamicrime
@fischmd I can relate to Dr. Smith's commentary on patient's denial #bcsm
colleen_young
@ctsinclair Don't you worry. I demanded it and got a consult on the spot And I have the @VirtualHospice & #hpm teams at my fingertips #bcsm
jodyms
T3: It's so difficult for patients. No uniform services offered from one location to the next or even called the same thing. #bcsm
DrAttai
@feistybluegecko welcome - we're discussing hospice and palliative care with @ctsinclair and @fischmd #bcsm
drseisenberg
RT @stales: RT @ctsinclair: I have sadly heard story too many times. But an empowered patient can demand/seek out palliative care #bcsm
CJMeta
OK ... family & friends. But most don't think of it as palliative care. U get the same when u have 24 flu & we don't call P-care. #bcsm
NancysPoint
so impt!RT @ctsinclair: Hospice and Palliative Care is more than just opioids and pills Listening is our main tool. #bcsm
stales
@ctsinclair does pallative care differentiate between physical comfort and emotional comfort? #bcsm
hey_leia
I noticed today that the cancer center where I'm being treated offers #sonic healing classes http://t.co/RhhSE5mG #BCSM
chemobrainfog
Key point @fischmd: No 2 pts are the same. Must be difficult balancing act to determine what suits a particular pt/family. #bcsm
jodyms
Awesome @ctsinclair Surgery is to a surgeon as a family meeting is to a palliative care team. #bcsm
ctsinclair
@CJMeta We are making inroads. But culture change doesn't usually come fast. Unless you are technology. #BCSM
DrAttai
we have family meetings, too!! RT @ctsinclair: Surgery is to a surgeon as a family meeting is to a palliative care team. #bcsm
PracticalWisdom
RT @ctsinclair: Surgery is to a surgeon as a family meeting is to a palliative care team. #BCSM
MDAndersonNews
RT @jodyms: T3: No two people react the same to their illness or want the same exact things from their MD, nurse, family, friends.. #bcsm
stales
RT @jodyms: T3 Its so difficult for patients. No uniform services offered from one location to the next or even called the same thing #bcsm
jodyms
T4: Let's open this up - do some of you have experiences w/either palliative and/or hospice that you'd like to share? Or questions? #bcsm
miamicrime
@feistybluegecko palliative care and hospice #bcsm
fischmd
@miamicrime Denial is not a flaw, it is part of the process for many individuals. You are not alone... #bcsm
DrAttai
@jodyms that makes it very hard - like lots in oncology care - treatment patterns can vary tremendously #bcsm
ctsinclair
We could have a whole chat just about family meetings and goals of care. @jodyms @DrAttai @stales #BookmarkForFuture #BCSM
stales
RT @fischmd: T3: No two people react the same to their illness or want the same exact things from their MD, nurse, family, friends.. #bcsm
YvonFItz
RT @VirtualHospice: Don't forget palliative care includes family and friends too, not just the patient. #bcsm
annwax
Have to go. TY to everyone for allowing me to be connected to all of you. It is always a great chat #Bcsm
jodyms
@DrAttai That's because YOU are an amazing physican. Hour-long meetings with breast surgeon is not the norm. #bcsm
stales
RT @jodyms: T4: Lets open this up - do some of you have experiences w/either palliative and/or hospice that youd like to share? ques? #bcsm
fischmd
Holly Prigerson on grief: "the state of emotional unrest and frustration assoc with wanting what one cannot have http://t.co/crqxUVtO #bcsm
ctsinclair
@stales Yes if you seen palliative care in one place, you can easily say you have seen palliative care in one place. #BCSM
chemo_babe
@jodyms T4: I love hospice nurses. So much wisdom about #eol issues -- and pain management! #bcsm
jodyms
@ctsinclair Great idea - bookmarked as noted:)P #bcsm
VirtualHospice
@ctsinclair I won't clog up the chat, but at the end I'll share some wonderful threads from our discussion forums about hopsice & pc. #bcsm
DrAttai
@jodyms they are in my practice! #bcsm
feistybluegecko
@miamicrime thank you :) #bcsm
stales
@annwax good night, thanks for joining us #bcsm
jodyms
RT @fischmd: @miamicrime Denial is not a flaw, it is part of the process for many individuals. You are not alone... #bcsm
ABHuret
@fischmd It needs to -- and I hope it does. Survivorship is such a gray area and so many are uncomfortable with the term. #bcsm
danceswithpens
T4 How do i prepare for my PC OP consult? Husband and me #bcsm
stales
RT @chemo_babe: @jodyms T4: I love hospice nurses. So much wisdom about #eol issues -- and pain management! #bcsm
drseisenberg
BCSM = Because Comfort Serves Many #bcsm
eweysgrammy
RT @chemo_babe: @jodyms T4: I love hospice nurses. So much wisdom about #eol issues -- and pain management! #bcsm
fischmd
Recognizing and managing grief is a key part of #palliative care #bcsm
craftychicky
#bcsm I wish there were more honest discussions on #palliative care at the outset of treatment so patients know their options. QOL key
DrAttai
the whole PC / hospice care team - made up of amazing people unlike any you'll ever meet #bcsm
jodyms
@chemo_babe I agree - hospice nurses and pain management professionals that helped my mother were Godsends. #bcsm
VirtualHospice
@stales Palliative care includes both physical and emotional comfort. #bcsm
ctsinclair
@DrAttai Yes I think the family meeting has really been elevated in all specialties partly due to increase value on communication #BCSM
drseisenberg
The best. RT @chemo_babe: @jodyms T4: I love hospice nurses. So much wisdom about #eol issues -- and pain management! #bcsm
CJMeta
When father-in-law was dying in our home, social worker helped us all. I wasn't the patient but had palliative care from them. #bcsm
gmasandi1
@chemobrainfog @fischmd Meeting patient/family goals are important. #BCSM
drseisenberg
RT @fischmd: Recognizing and managing grief is a key part of #palliative care #bcsm
VirtualHospice
+1 RT @jodyms: Awesome @ctsinclair Surgery is to a surgeon as a family meeting is to a palliative care team. #bcsm
NancysPoint
Agree! RT @DrAttai: the whole PC / hospice care team - made up of amazing people unlike any youll ever meet #bcsm
DrAttai
@danceswithpens my suggestion - figure out what you want, what's realistic. Ask these questions. And see how they can help #bcsm
Essvari
RT @drseisenberg: BCSM = Because Comfort Serves Many #bcsm
aliciabloom
RT @ctsinclair: Surgery is to a surgeon as a family meeting is to a palliative care team. #BCSM

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