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19/12 #hpm - Healthcare Social Media Transcript

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#hpm transcript

Healthcare Social Media Transcript

From: Wed Jul 18 18:00:00 PDT 2012

To: Wed Jul 18 19:15:00 PDT 2012

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rfberry Hi & Welcome to the #hpm TweetChat about #hospice & #palliative care, please takea minute to introduce yourself & where youre from

Wed Jul 18 18:00:07 PDT 2012

rfberryRene Berry here, hosting tonight in Menlo Park, CA @goBeMoRe, passionate aboutearly #palliative care & advance care planning #hpm

Wed Jul 18 18:01:34 PDT 2012

Roaaary @rfberry Hi I'm Rory a pallia tive care nurse in the UK #hpmWed Jul 18 18:01:52 PDT 2012

JenLBose Hi! Jen here- marketing coordinator @aahpm. All tweets are my own #HpmWed Jul 18 18:02:23 PDT 2012

BillPfohlHello #hpm-ers I'm Bill Communications Officer at Hospice of Central New York...#hpm

Wed Jul 18 18:02:26 PDT 2012

rfberry welcome, thanks for joining! We're going to wai t a few minutes before T1 RT@Roaaary: Hi Im Rory a palliative care nurse in the UK #hpm

Wed Jul 18 18:02:56 PDT 2012

aliciabloom for the next hour, i'll be participating in the weekly #hpm tweetchat and thereforeflooding your twitter feed :)

Wed Jul 18 18:03:08 PDT 2012

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rfberry Great to have you Bill! RT @BillPfohl: Hello #hpm-ers Im Bill Communications Officerat Hospice of Central New York... #hpm

Wed Jul 18 18:03:16 PDT 2012

rfberry great to see you Jen! RT @JenLBose: Hi! Jen here- marketing coordinator @aahpm.All tweets are my own #hpm

Wed Jul 18 18:03:31 PDT 2012

rfberry RT @aliciabloom: for the next hour, i'll be participating in the weekly #hpm tweetchatand therefore flooding your twitter feed :)Wed Jul 18 18:03:44 PDT 2012

aliciabloom hi all! alicia bloom, msw lsw from philadelphia (via upstate NY) practicing in #hpm.passionate about improving patient access #hpm

Wed Jul 18 18:04:06 PDT 2012

_lizzy_ Hi! Lizzy Miles, MSW, researcher, advocate, volunteer. hosting 1st death cafe in UStomorrow night #Hpm

Wed Jul 18 18:04:23 PDT 2012

rfberry We'll get started wi th T1 in just a few minutes! Excited about our topics tonight! #hpmWed Jul 18 18:04:42 PDT 2012

IM4PBS Hi Deb Boyce, palliative care champion #hpmWed Jul 18 18:05:02 PDT 2012

aliciabloom RT @rfberry: Well get started wi th T1 in just a few minutes! Excited about our topicstonight!

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rfberry @IM4PBS Hi Deb & Hello Lizzy!! @_Lizzy_, great to see you tonight @PamRessler!#hpm

Wed Jul 18 18:06:21 PDT 2012

IM4PBS :-) agreed! RT @aliciabloom: RT @IM4PBS: Hi Deb Boyce, palliative care champion

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JenLBose Because every moment of your life is worth living to its fullest #HpmWed Jul 18 18:09:30 PDT 2012

jfclearywisc @rfberry: T1 Why should you demand palliative care? because when I demand it, itwill be the care I need!! #hpm#hpmglobal

Wed Jul 18 18:10:24 PDT 2012

rfberry @equijada hi Earl, we just started with T1, how do you answer the question "Whyshould you demand palliative care" #hpm

Wed Jul 18 18:10:26 PDT 2012

SteveBednarski @rfberry#hpm the moment a physician dx's with an incurable ds or pt refusestreatment.

Wed Jul 18 18:10:35 PDT 2012

rfberry RT RT @JenLBose Because every moment of your life is worth living to its fullest#hpm

Wed Jul 18 18:10:37 PDT 2012

pamressler @jfclearywisc Thanks, Jim -- great tip #hpmWed Jul 18 18:10:39 PDT 2012

IM4PBS @rfberry T1 Its your right to determine the type of care you choose and yourguardian/advocate's responsibility is to ensure that care #hpm

Wed Jul 18 18:10:42 PDT 2012

aliciabloom Answer the question with a question- why SHOULDN'T you demand palliative care? Ican't think of a single reason! #hpm

Wed Jul 18 18:10:50 PDT 2012

equijada @rfberry perhaps the question before the question is who should demand.. aspalliative care is broad and unscaled. #hpm

Wed Jul 18 18:11:11 PDT 2012

aliciabloom people should demand #palliative care because everyone deserves to have symptomcontrol, quality of life & self-determination #hpm

Wed Jul 18 18:11:34 PDT 2012

rfberry @aliciabloom haha well, lets take this opportunity to produce a great list of all thereasons! #hpmWed Jul 18 18:12:21 PDT 2012

equijada @equijada (if you're thinking in terms of product) #hpmWed Jul 18 18:12:23 PDT 2012

kilani19 @rfberry pc will allow augmentation of medical care for those w serious illness,focusing on qol, psych-soc & spiritual healing #hpm

Wed Jul 18 18:12:30 PDT 2012

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_lizzy_ T1. I would demand palliative care because #hpm MDs, nurses, & pharm arespecialists in pain control. I don't like pain. #Hpm

Wed Jul 18 18:12:34 PDT 2012

rfberry @equijada go for it! I'd like this to be time for clarifying, simple language, & helppeople understand why/how to access --> #hpm

Wed Jul 18 18:12:56 PDT 2012

aliciabloom ;) RT @rfberry: @aliciabloom haha well, lets take this opportunity to produce a greatlist of all the reasons! #hpmWed Jul 18 18:13:18 PDT 2012

kilani19 @IM4PBS@rfberry yes! Self determination! Self advocacy! #hpmWed Jul 18 18:13:36 PDT 2012

rfberry RT @_lizzy_: T1. I would demand palliative care because #hpm MDs, nurses, &pharm are special ists in pain control. I don't like pain. #Hpm

Wed Jul 18 18:13:43 PDT 2012

aliciabloom #palliative care is about making sure the plan of care aligns with the person's wishes#hpm

Wed Jul 18 18:14:09 PDT 2012

JenLBose agreed! MT @_lizzy_: T1. demand pallia tive care because #hpm MDs, nurses, &pharm are special ists in pain control. I dont like pain. #Hpm

Wed Jul 18 18:14:38 PDT 2012

rfberry T1 I want pallia tive care for myself & family so that a team is there to advocate for mygoals at all phases of my illness #hpm

Wed Jul 18 18:14:44 PDT 2012

doctatum @rfberry@JenLBose@aahpm phone dying but please look at aahpm website about#PCHETA bill and send letter to your rep and senators for #hpm

Wed Jul 18 18:14:49 PDT 2012

kilani19 @rfberry and not to mention the team approach proves to be effective and beneficial.#hpm

Wed Jul 18 18:15:08 PDT 2012

jfclearywisc@rfberry: T1 "Why should you demand palliative care?" Shouldn't have to demand.Skills should be integrated into all health care. #hpm

Wed Jul 18 18:15:15 PDT 2012

pamressler @rfberry I think it is important to define pallia tive care as comprehensive teamcentered care #hpm

Wed Jul 18 18:15:16 PDT 2012

aliciabloom people with serious illness should demand #palliative care because all deservesymptom control, quality of life & self-determination #hpm

Wed Jul 18 18:15:17 PDT 2012

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equijada @rfberry trying to put self in pt's shoes. What would I want when first dx with a seriousillness? #hpm

Wed Jul 18 18:15:17 PDT 2012

rfberry @aliciabloom I'm going to play devil's advocate for a second & say, does allhealthcare do that? ;) #hpm

Wed Jul 18 18:15:27 PDT 2012

SteveBednarski @_lizzy_#hpm T1 and to Lizzy's pt, we should advocate for our pt's to seek outexperts in sx control, incl'd pain mgmt.

Wed Jul 18 18:15:32 PDT 2012

equijada @jfclearywisc yes! agree. #hpmWed Jul 18 18:15:50 PDT 2012

pamressler @doctatum I have contacted my representative and senators to sign on to PCHETAand encourage others to do the same #hpm

Wed Jul 18 18:16:36 PDT 2012

JenLBose I'd demand it for my family so I don't have to see them suffer #HpmWed Jul 18 18:16:54 PDT 2012

kilani19 @rfberry@aliciabloom no. #hpm the rest of healthcare is focused on their area ofspecialty. No big picture approach.

Wed Jul 18 18:17:04 PDT 2012

aliciabloom @rfberry i think it wants to, but doesn't always know how. palliative care steps awayfrom numbers & disease to look at the patient #hpm

Wed Jul 18 18:17:04 PDT 2012

jfclearywisc @equijada But I don't want #palliative care specialist tomorrow when I have an MItomorrow. Skils yes. Specialist no!!! Honest. .... #hpm

Wed Jul 18 18:17:08 PDT 2012

rfberry T1 Sometimes people assume pain will be naturally taken care of, it's not always clearabout the need until you experience it #hpm

Wed Jul 18 18:17:21 PDT 2012

jfclearywisc RT @kilani19: @rfberry@aliciabloom no. #hpm the rest of healthcare is focused on

their area of specialty. No big picture approach.Wed Jul 18 18:17:22 PDT 2012

equijada @equijada@rfberry the thing I want most when I'm dx with a serious illness is thething I'll demand. #hpm

Wed Jul 18 18:17:49 PDT 2012

equijada @jfclearywisc agree. #hpmWed Jul 18 18:18:04 PDT 2012

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rfberry @kilani19 agree :) #hpmWed Jul 18 18:18:05 PDT 2012

rfberry RT @JenLBose Id demand it for my family so I dont have to see them suffer #hpmWed Jul 18 18:18:12 PDT 2012

sethholman RT @c_hol3221: The first Dumbledollars being spent on #HPM 2 Callback #: 419-

348-3811 http://t.co/m52hMUjzWed Jul 18 18:18:23 PDT 2012

IM4PBS good pt @pamressler! @rfberry@aliciabloom but team-centered healthcare is notmainstream standard of care in my area of the country #hpm

Wed Jul 18 18:18:25 PDT 2012

aliciabloom need to remember that #palliative care is about more than just pain & symptomcontrol. it addresses psychosocial needs & distress, too! #hpm

Wed Jul 18 18:18:33 PDT 2012

kilani19 @rfberry and that's what #hpm folks do is process the big pix to allow pt/familyunderstanding of what to expect and how to heal.

Wed Jul 18 18:18:45 PDT 2012

hospiceman RT @_lizzy_: Hi! Lizzy Miles, MSW, researcher, advocate, volunteer. hosting 1st deathcafe in US tomorrow night #Hpm

Wed Jul 18 18:18:46 PDT 2012

rfberry @equijada but you're a MD, you're very aware of what you'd want most, how can youtranslate that to someone w/no clinical knowledge #hpm

Wed Jul 18 18:18:59 PDT 2012

rfberry @IM4PBS I think in many areas of the country! :) #hpmWed Jul 18 18:19:25 PDT 2012

aliciabloom i'll demand pall iative care for me/loved ones in the face of serious illness because ican have it WITH disease directed treatment #hpm

Wed Jul 18 18:19:56 PDT 2012

SteveBednarski @rfberry#hpm. I thin pt's expect sx's to be controlled by their physician. The PCP orattending needs to make the consult. #hpm

Wed Jul 18 18:20:00 PDT 2012

BillPfohl @rfberry why am I demanding this? Why do I have to demand it? #hpmWed Jul 18 18:20:15 PDT 2012

rfberry @jfclearywisc it "Should" (key word) be integrated in all heal thcare, but what aboutnow? #hpm

Wed Jul 18 18:20:28 PDT 2012

equijada @rfberry i haven't been seriously ill so I'm not sure what I would want...I can onlyassume #hpm

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Wed Jul 18 18:21:40 PDT 2012

rfberry @BillPfohl maybe you don't. Do all the healthcare systems in your area make areferral to palliative care at onset of serious illness? #hpm

Wed Jul 18 18:21:46 PDT 2012

kilani19 @aliciabloom yes & that's nice bc #hpm can run parallel or transition into pure hospiceonce it's more terminal and eol. Help along the way!

Wed Jul 18 18:22:05 PDT 2012

pamressler We haven't done a great job in educating publ ic: all palliative care is NOT hospicecare but all hospice care IS palliative care #hpm

Wed Jul 18 18:22:16 PDT 2012

aliciabloom in a very specialized medical world, it helps to have a team of palliative care clinicianswho don't miss the forest for the trees #hpm

Wed Jul 18 18:22:58 PDT 2012

_lizzy_ @aliciabloom yes, of course the psychosocial, but for me, pain comes before brain#HpmWed Jul 18 18:22:59 PDT 2012

rfberry @equijada true, if one of your frnds is dx'd with a serious illness tmr, would youassume they would want to be aware of palliative cr? #hpm

Wed Jul 18 18:23:14 PDT 2012

IM4PBS Gr8 pt! MT @pamressler: We need to educate public: all pal liative care is NOT hospicecare but all hospice care IS palliative care #hpm

Wed Jul 18 18:23:38 PDT 2012

aliciabloom @_lizzy_ i appreciate that, but i think we forget there are many domains of sufferingoutside of physical pain. #hpm

Wed Jul 18 18:23:53 PDT 2012

kilani19 @pamressler yes that's the biggest thing I contend w in hospital setting - educatingfellow MDs and staff! #hpm

Wed Jul 18 18:23:59 PDT 2012

SteveBednarski @kilani19@aliciabloom#hpm I agree Kilani, and we need to provide our pt's anopportunity to bridge to hospice as a part of the POC. #Hpm

Wed Jul 18 18:24:20 PDT 2012

rfberry We're going to move to T2, which is actually very related to T1, please share anyclosing thoughts about demanding palliative care. #hpm

Wed Jul 18 18:24:21 PDT 2012

BillPfohl @rfberry Does serious illness automatically demand palliative treatment? #hpmWed Jul 18 18:24:42 PDT 2012

aliciabloom i often say: #hospice is a way that we can provide #palliative care to people in the veryadvanced stages of their illness #hpm

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Wed Jul 18 18:24:43 PDT 2012

equijada @rfberry If I was diagnosed with a life threatening illness, the thing I would want mostis to live no matter what (just being honest) #hpm

Wed Jul 18 18:25:13 PDT 2012

kilani19 @SteveBednarski@aliciabloom I think pall care bridges nicely Steve! ;) #hpm thanks!Wed Jul 18 18:25:48 PDT 2012

aliciabloom @BillPfohl i think people l iving with serious illness can often benefit from #palliativecare intervention regardless of plan of care #hpm

Wed Jul 18 18:25:56 PDT 2012

equijada Paul Rosseau, a PC physician who I have tons of respect for, describes hisexperience on the patient end http://t.co/V2gOq8mw#hpm

Wed Jul 18 18:26:00 PDT 2012

pamressler @_lizzy_ As we learn more about pain, it is not only a bio logical process but veryrelated to psychosocial as well #hpm

Wed Jul 18 18:26:04 PDT 2012

kilani19 @BillPfohl@rfberry I agree w bil l, I wish our pts didn't have to "demand" palliativecare! #hpm

Wed Jul 18 18:26:31 PDT 2012

IM4PBS @aliciabloom many choose #hospice too late at #eol and may have sufferedneedlessly for far too long #hpm

Wed Jul 18 18:27:06 PDT 2012

Kamiyamay @equijada@rfberry#hpm Different desires for different people, I would want to finishup some things and l ive comfortably for time left

Wed Jul 18 18:27:12 PDT 2012

Kamiyamay RT @kilani19: @BillPfohl@rfberry I agree w bil l, I wish our pts didn't have to "demand"palliative care! #hpm

Wed Jul 18 18:27:24 PDT 2012

rfberry @kilani19 totally agree, but want to give people language to advocate until it becomesnormal/mainstream #hpm

Wed Jul 18 18:27:33 PDT 2012

BillPfohl @aliciabloom I'm looking at this thru the consumer lens...give me options. let mechoose. #hpm

Wed Jul 18 18:27:37 PDT 2012

rfberry T2 What are ways individuals can advocate to receive palliative care (if they want it)for themselves or family early in their illness? #hpm

Wed Jul 18 18:27:42 PDT 2012

kilani19 @equijada@rfberry and that's what a proper palliative care team should support!#hpm how is it u want to live!

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Wed Jul 18 18:28:02 PDT 2012

jfclearywisc @rfberry If we create system to correct the now, we risk creating a system that is notthe best for the future......But we need change #hpm

Wed Jul 18 18:28:07 PDT 2012

rfberry @jfclearywisc what do you think is the best system for the future? How do we need tochange hpm? #hpm

Wed Jul 18 18:29:07 PDT 2012

aliciabloom @BillPfohl and that's what palliative care clinicians do. empower patients tounderstand treatment options so that they can choose. #hpm

Wed Jul 18 18:29:07 PDT 2012

Kamiyamay @rfberry#hpm Advance directives- but family, physicians etc need to have these aswell as patient

Wed Jul 18 18:29:18 PDT 2012

BillPfohl @rfberry What healthcare gulag are you from? "Demand" - "advocate"? #hpm

Wed Jul 18 18:29:35 PDT 2012

Roaaary Is palliative care not automatically offered when someone is diagnosed with a terminalillness? #hpm

Wed Jul 18 18:30:06 PDT 2012

JenLBose T2 Ask for it, demand it, don't take no for an answer! Talk about it so that everyoneknows that it's available. #Hpm

Wed Jul 18 18:30:36 PDT 2012

aliciabloomnot in the US, sadly. RT @Roaaary: Is palliative care not automatically offered whensomeone is diagnosed with a terminal illness? #hpm

Wed Jul 18 18:30:37 PDT 2012

kilani19 @rfberry very simply, I would have pts ask their primary MDs to refer to a pall careteam. If md says no, well, that's another story! #hpm

Wed Jul 18 18:30:40 PDT 2012

rfberry @BillPfohl I've personally experienced on more than one occasion clinicians puttingup roadblocks to accessing the palliative care team #hpm

Wed Jul 18 18:30:59 PDT 2012

rfberry @BillPfohl so those words feel very relevant to me. #hpmWed Jul 18 18:31:14 PDT 2012

equijada @BillPfohl good point. hear hear. #hpmWed Jul 18 18:31:18 PDT 2012

pamressler @Roaaary No, it is not in the United States..what about in the UK? #hpmWed Jul 18 18:31:27 PDT 2012

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jfclearywisc @rfberry In USA Integration of #palliative care into Universal Health care withunbundlling of hospice Medicare benefit. #hpm

Wed Jul 18 18:31:45 PDT 2012

equijada @rfberry good point. hear hear. #hpmWed Jul 18 18:31:59 PDT 2012

kilani19@Roaaary nope so sad! #hpm

Wed Jul 18 18:32:06 PDT 2012

aliciabloom patients should be empowered to ask. sometimes physicians/healthcare providershesitate to offer #palliative care for fear of reaction #hpm

Wed Jul 18 18:33:04 PDT 2012

Kamiyamay #hpm T2- Self advocate. hmmm Speak up, have advance directives on fileWed Jul 18 18:33:44 PDT 2012

pamresslerWe also need to remember that palliative care teams are not available to many

patients in smaller hospitals #hpmWed Jul 18 18:33:45 PDT 2012

kilani19 @rfberry@billpfohl me too. It's really pathetic. "oh they're not ready for pall care"!#hpm

Wed Jul 18 18:33:51 PDT 2012

equijada @jfclearywisc what do you mean by unbundling hospice medicare benefit? does thatmean reforming it? #hpm

Wed Jul 18 18:33:53 PDT 2012

IM4PBS @equijada@BillPfohl I've witnessed families having to repeatedlyreiterate/advocate/demand of HC team "comfort care only!" no heroics #hpm

Wed Jul 18 18:34:21 PDT 2012

rfberry true RT @pamressler We also need to remember that palliative care teams are notavailable to many patients in smaller hospitals #hpm

Wed Jul 18 18:34:40 PDT 2012

BillPfohl @rfberry I believe we have to educate pts about choices. Once MD's realize pts aremaking informed choices hurdles will come down #hpm

Wed Jul 18 18:34:41 PDT 2012

JenLBose @aliciabloom Agreed! We have to get rid of the stigma associated with palliative care#Hpm

Wed Jul 18 18:34:49 PDT 2012

kilani19 @pamressler very true. It will come! Just as it was found that having a diab educ isimportant. #hpm

Wed Jul 18 18:35:03 PDT 2012

SteveBednarski @BillPfohl@rfberry#hpm re: Bill's question on demands, etc. Many clinicians don't

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believe pt's want hospice/ PC as an option, only cures.

Wed Jul 18 18:35:07 PDT 2012

rfberry RT RT @JenLBose@aliciabloom Agreed! We have to get rid of the stigma associatedwith palliative care #hpm

Wed Jul 18 18:35:39 PDT 2012

Kamiyamay @pamressler#hpm shouldn't case managers be able to inform, or yet a consult calledfor "education only" on palliative -been there & done it

Wed Jul 18 18:35:44 PDT 2012

kilani19 @JenLBose@aliciabloom Jen, at our health system we are trying to work on that.#hpm

Wed Jul 18 18:36:14 PDT 2012

rfberry @SteveBednarski I think there's much confusion there though, you can have#palliative care & pursue curative treatments. #hpm

Wed Jul 18 18:36:18 PDT 2012

equijada @rfberry PC needs to be moved way upstream. Might have to mortage hospice for that- but hospice benefit is archaic and needs reform #hpm

Wed Jul 18 18:36:19 PDT 2012

BillPfohl RT @rfberry: RT RT @JenLBose@aliciabloom Agreed! We have to get rid of thestigma associated with pal liative care AND HOSPICE #hpm

Wed Jul 18 18:36:26 PDT 2012

aliciabloom sharing T2 again, i think it got lost in the shuffle of excitement of T1. . . #hpmWed Jul 18 18:36:30 PDT 2012

Kamiyamay @SteveBednarski@BillPfohl@rfberry#hpm True Steve "well the family...Wed Jul 18 18:36:34 PDT 2012

jfclearywisc @equijada YEs. Reform. Not prognosis related. In Australia, govt supports theservices and those who need it, get it. #hpm

Wed Jul 18 18:36:50 PDT 2012

rfberry @BillPfohl agree though I believe the MD's should help facilitate informed decisions, ifnot all options are on the table, that's hard #hpm

Wed Jul 18 18:36:58 PDT 2012

aliciabloom T2 What are ways individuals can advocate to receive palliative care (if they want) forthemselves/family early in their illness? #hpm#hpm

Wed Jul 18 18:36:59 PDT 2012

kilani19 @Kamiyamay@pamressler oh I like that - info session only! Not necessarily a fullevaluation. #hpm

Wed Jul 18 18:37:09 PDT 2012

pamressler @kilani19 Agreed, it may also change w/ shift away from fee for servicereimbursement and toward ACO (accountable care organizations) #hpm

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Wed Jul 18 18:37:43 PDT 2012

JenLBose @kilani19 That's great! It's something we all should be doing. 4 years ago I had noidea this field existed. #Hpm

Wed Jul 18 18:37:53 PDT 2012

aliciabloom #hospice & #palliative care are like peanut butter & jelly-- often associated with oneanother, but don't always have to go together #hpm

Wed Jul 18 18:38:01 PDT 2012

Kamiyamay @kilani19@pamressler#hpm Absolutely - just there to educate not to admit or signWed Jul 18 18:38:22 PDT 2012

Roaaary @pamressler it's always offered... patients can opt to be nursed at home or inHospices. Do hospices run as charities in the US? #hpm

Wed Jul 18 18:38:26 PDT 2012

equijada @jfclearywisc yes, agree. US has to move in that direction. I don't think we have achoice but to change #hpm

Wed Jul 18 18:38:28 PDT 2012

rfberry T2 I think if people ask about palliative care they open a lot of doors (though I amcurious MD's thoughts about when MD's say not yet) #hpm

Wed Jul 18 18:38:30 PDT 2012

_lizzy_ Last week I heard aide say she wanted to send pt to hospital against his wishes. Hesaid, "I am dying. Let me die." & he did. #Hpm

Wed Jul 18 18:38:33 PDT 2012

kilani19@aliciabloom I love #pbj! #hpm

Wed Jul 18 18:39:20 PDT 2012

BillPfohl The problem maybe short lived. Pall Care wi ll see tremendous growth in the next 15years. #hpm

Wed Jul 18 18:39:22 PDT 2012

Kamiyamay @Kamiyamay@kilani19@pamressler#hpm and most hospices happy to obligebecause keeps good relations with referral sources and paitents

Wed Jul 18 18:39:35 PDT 2012

kilani19 @Roaaary@pamressler they can as a nonprofit. Not too many though where I live.#hpm

Wed Jul 18 18:40:07 PDT 2012

aliciabloom in my experience, physicians say "not yet" because they assume pall iative careintervention will lead to hospice (teachable moment!) #hpm

Wed Jul 18 18:40:15 PDT 2012

rfberry agree, though I feel it's so urgent RT @BillPfohl The problem maybe short lived. PallCare will see tremendous growth in the nxt 15 yrs #hpm

Wed Jul 18 18:40:21 PDT 2012

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jfclearywisc @equijada I worry when you and I are agreeing :-) #hpmWed Jul 18 18:40:29 PDT 2012

_lizzy_ sadly, he only was referred to hospice in last few days. Seems like guardians neededucation too. #Hpm

Wed Jul 18 18:40:41 PDT 2012

doctatum Need to bui ld workforce see PCHETA http://t.co/PnMuUF9h include NP PAs MT@pamressler pallcare not available in smaller hospitals #hpm

Wed Jul 18 18:40:49 PDT 2012

Kamiyamay @_lizzy_#hpm I deal with this constantly - aides or caregivers making decisions thatare theres to make based on emotion and lack of edu

Wed Jul 18 18:40:54 PDT 2012

aliciabloom @kilani19 me too! but sometimes, just pb on a cracker or jelly on toast is the right thing;) #hpm

Wed Jul 18 18:40:55 PDT 2012

pamressler @Roaaary Hopices in the U.S. are both non-profit and for-profit, also our term hospicealso refers to having care at home #hpm

Wed Jul 18 18:40:58 PDT 2012

aliciabloom RT @jfclearywisc: @equijada I worry when you and I are agreeing :-) #hpmWed Jul 18 18:41:03 PDT 2012

equijada @jfclearywisc haha. Come to the dark side. #hpmWed Jul 18 18:41:34 PDT 2012

SteveBednarski @Kamiyamay@kilani19@pamressler#hpm I find if I can meet with pt's!family, theyare more open to #hospice or #palliative care.

Wed Jul 18 18:41:45 PDT 2012

Kamiyamay @Kamiyamay@_lizzy_#hpm are "not" theirs to make - long day!Wed Jul 18 18:41:48 PDT 2012

kilani19 @aliciabloom I love when I can prove them wrong - we get the pt comfy and sign off!#hpm that way hospice isn't nec part of plan!

Wed Jul 18 18:41:54 PDT 2012

rfberry @doctatum (you're getting to a pre-t3 :) #hpmWed Jul 18 18:42:05 PDT 2012

aliciabloom RT @equijada: @jfclearywisc haha. Come to the dark side.

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profit & non-profit Hospice? #hpm

Wed Jul 18 18:42:53 PDT 2012

_lizzy_ @Kamiyamay Yes! For the aide it was personal...she cared for him. We need to thinkabout all staff when we talk about education #Hpm

Wed Jul 18 18:42:56 PDT 2012

aliciabloom amen! RT @kilani19: @aliciabloom love when I can prove them wrong - we get ptcomfy & sign off! that way hospice isnt nec part of plan! #hpm

Wed Jul 18 18:43:05 PDT 2012

Roaaary @pamressler the idea of a for-profit hospice is new to me! #hpmWed Jul 18 18:43:14 PDT 2012

SteveBednarski @_lizzy_#Hpm This is a good example that we need to educate all care givers andsupport them and pt's for a peaceful EOL. #hpm

Wed Jul 18 18:43:25 PDT 2012

doctatum@aliciabloom T2 build regional pall care education centers. Train mid career

providers. Its in #PCHETA for #hpm. 2 B Introduced tomorrowWed Jul 18 18:43:40 PDT 2012

rfberry very common in US, I think both models can learn from each other RT @Roaaary@pamressler the idea of a for-profit hospice is new to me! #hpm

Wed Jul 18 18:43:54 PDT 2012

kilani19 @BillPfohl@pamressler I guess just purely the business model. Kind of like a hospitalcan be. #hpm

Wed Jul 18 18:43:57 PDT 2012

equijada @aliciabloom haha :) #hpmWed Jul 18 18:44:10 PDT 2012

rfberry We're about to move to T3, please share final thoughts on ways individuals canaccess palliative care early. #hpm

Wed Jul 18 18:44:33 PDT 2012

BillPfohl AMEN RT @SteveBednarski:@_lizzy_ This is a good example that we need toeducate all care givers & support them & pts for a peaceful EOL #hpm

Wed Jul 18 18:44:59 PDT 2012

kilani19 @rfberry unfortunately docs feel that once pal l care involved that we either want tocomp extubated or send to hospice. #hpm

Wed Jul 18 18:44:59 PDT 2012

_lizzy_ @SteveBednarski yes, because if residence is nursing home then majority of carecomes from nh aides. Prob not lot of eol training #Hpm

Wed Jul 18 18:45:02 PDT 2012

aliciabloom really just tax status RT @kilani19: @BillPfohl@pamressler I guess just purely thebusiness model. Kind of like a hospital can be. #hpm

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Wed Jul 18 18:45:04 PDT 2012

pamressler @BillPfohl similar to how other healthcare institutions function -- mainly in how theyare organized and who the stakeholders are #hpm

Wed Jul 18 18:45:16 PDT 2012

Kamiyamay #hpm Sometimes wish we could do away with word hospice all together - and callpalliative. Peeps believe hospice last 3 days & miss Pall

Wed Jul 18 18:45:24 PDT 2012

rfberry @kilani19 agree, though I think it's because they're not introducing pall iative careearly enough to know the full extent of the team #hpm

Wed Jul 18 18:46:29 PDT 2012

jfclearywisc RT @LDMatters: @pamressler So true. So we need to teac generalist to integrate a#palliative approach, and request consult as needed. #hpm

Wed Jul 18 18:46:43 PDT 2012

equijada @rfberry t3 make palliative care more accessible. Remove language barriers. Sellattending to illness not disease. #hpmWed Jul 18 18:46:45 PDT 2012

BillPfohl @aliciabloom I would say for profit answers to investors. Non profits answer to thecommunity they serve. Where would you go? #hpm

Wed Jul 18 18:47:08 PDT 2012

rfberry RT @equijada: @rfberry t3 make palliative care more accessible. Remove languagebarriers. Sell attending to illness not disease. #hpm

Wed Jul 18 18:47:29 PDT 2012

rfberry T3 How are you going to help advocate for the #Palliative Care & #Hospice Education& Training Act (PCHETA)? http://t.co/s99Klplq#hpm

Wed Jul 18 18:47:49 PDT 2012

aliciabloom @BillPfohl i actually think that's a common misconception. remember, for a non-profit:no margin, no mission. #hpm

Wed Jul 18 18:48:34 PDT 2012

rfberry (side note) that @AAHPM advocate for #PCHETA is (newly) on Twitter @PCHermes#hpm

Wed Jul 18 18:49:35 PDT 2012

pamressler @rfberry T3 I have contacted my legislators but I would like to see the final bil lexpanded to include training and ed for RNs as well #hpm

Wed Jul 18 18:49:42 PDT 2012

rfberry @pamressler You're on it Pam, that's awesome, I am going to write & make phonecalls tomorrow! #hpm

Wed Jul 18 18:50:19 PDT 2012

kilani19 @rfberry I would like to forward the information to all that I know in the healthcare

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setting. I hope they would advocate for us! #hpm

Wed Jul 18 18:50:28 PDT 2012

aliciabloom RT @rfberry: How are you going to help advocate for #Palliative Care & #HospiceEducation & Training Act (PCHETA)? http://t.co/em9c2Zb2#hpm

Wed Jul 18 18:50:29 PDT 2012

SteveBednarski @BillPfohl@aliciabloom#hpm I've worked for both profit and non. The profit couldafford to take pts with increased needs more freely.

Wed Jul 18 18:50:58 PDT 2012

doctatum Ask local rep and senators to be cosponsors! RT @rfberry T3 How are you going tohelp advocate for #PCHETA ? http://t.co/OzMzlSf9 #hpm

Wed Jul 18 18:51:19 PDT 2012

rfberry @kilani19 that's amazing!! I agree, this is such a huge step, education is key, &helping others understand is huge! #hpm

Wed Jul 18 18:51:28 PDT 2012

IM4PBS @pamressler excellent! Hope RNs are included in #Palliative Care & #HospiceEducation & Training Act (PCHETA)? http://t.co/bPprfhna#hpm

Wed Jul 18 18:51:41 PDT 2012

BillPfohl @aliciabloom That depends on where the margin is coming from. #hpmWed Jul 18 18:51:44 PDT 2012

Kamiyamay @pamressler@rfberry#hpm T3 so therefore not only contact legislators but thegroups that move them ANA, TNA, AMA etc etc.

Wed Jul 18 18:51:57 PDT 2012

_lizzy_ t3 Time to hit the social networks and ask people to tell their stories about #hospice. Iknow i've got some too! #Hpm

Wed Jul 18 18:51:58 PDT 2012

kilani19 @doctatum@rfberry can we get a form email or letter to send to our local medicalassociations as well!? #hpm

Wed Jul 18 18:52:23 PDT 2012

aliciabloom RT @SteveBednarski: I've worked for both profit and non. The profit could afford totake pts with increased needs more freely.

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BillPfohl @SteveBednarski I hope that's the norm and not the exception. #hpmWed Jul 18 18:53:24 PDT 2012

_lizzy_ @BillPfohl@aliciaboom I have worked at both... IMHO differences were more for staffthan for pts. #Hpm

Wed Jul 18 18:53:55 PDT 2012

rfberry @kilani19 AAHPM has a letter here: http://t.co/OySLFaML maybe you could use thatas a starting point to send to other associations. #hpm

Wed Jul 18 18:53:59 PDT 2012

kilani19 @rfberry nice! Thanks! #hpmWed Jul 18 18:54:47 PDT 2012

aliciabloom @BillPfohl it's important to do research on individual providers & understand how theyoperate, not assume based on for profit or not #hpm

Wed Jul 18 18:55:20 PDT 2012

SteveBednarski @BillPfohl#hpm I wish I could say that, but there are some for simply don't want pt'sthat will live more than a week. Very sad.

Wed Jul 18 18:55:40 PDT 2012

doctatum RT contact others #hpm thx 4 great letters of support already 4 Pcheta from@AmerGeriatrics@AmericanCancer and hospice pall med coalition!

Wed Jul 18 18:55:53 PDT 2012

rfberry We're getting up to our last 5minutes, please share any closing thoughts about any

topics from tonight's chat #hpmWed Jul 18 18:56:14 PDT 2012

kilani19 @aliciabloom@billpfohl I think it's important to match the pt up with the appropriatehospice too. #hpm each has something special to offer

Wed Jul 18 18:56:48 PDT 2012

doctatum Good idea. @aahpm RT @kilani19@doctatum@rfberry can we get a form email orletter to send to our local medical associations as well!? #hpm

Wed Jul 18 18:57:29 PDT 2012

rfberry @doctatum would be awesome if @AmerGeriatrics & @AmericanCancer &@AmerMedicalAssn supported @AAHPM's advocacy http://t.co/OySLFaML #hpm

Wed Jul 18 18:57:36 PDT 2012

aliciabloom yes! RT @kilani19: I think its important to match the pt up with the appropriate hospicetoo. #hpm each has something special to offer #hpm

Wed Jul 18 18:57:45 PDT 2012

_lizzy_ @equijada Change is what I am hoping for! "Talking about sex wont get you pregnant,and talking about death wont kill you." #Hpm

Wed Jul 18 18:57:49 PDT 2012

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jgrennan RT @CompAndChoices: With palliative care, you have more time with patient toaddress the patient's holistic heal th #HPM#pallitive... http://t.co/n1FDWOxm

Wed Jul 18 18:57:53 PDT 2012

BillPfohl Compare your database with Representatives funders...if they have been served byHPM have them write the letter or make the call... #hpm

Wed Jul 18 18:58:11 PDT 2012

doctatum Contact patrick @aahpm too RT @rfberry@kilani19 AAHPM letter here:http://t.co/hmsneIbx starting point to send to other associations. #hpm

Wed Jul 18 18:58:32 PDT 2012

kilani19 @rfberry what an excellent discussion! Let's share this info w as many people aspossible. #hpm

Wed Jul 18 18:58:35 PDT 2012

IM4PBS @rfberry#hpm education is key! pts/caregivers/HC team need to be aware of optionsand not see choices as being mutually exclusive.

Wed Jul 18 18:58:49 PDT 2012

equijada Thinking of the word "demand". Demand what you really want, top priority. Is PC a toppriority for a newly dx seriously ill person? #hpm

Wed Jul 18 18:58:58 PDT 2012

pamressler @rfberry Take away point,don't assume that MDs or RNs are aware of what palliativecare is...need to educate is not just for the public #hpm

Wed Jul 18 18:58:59 PDT 2012

kilani19 @BillPfohl oh that's excellent! Will let our hospice folks know! #hpmWed Jul 18 18:59:23 PDT 2012

equijada @_lizzy_ yup. I hear you. #hpmWed Jul 18 18:59:25 PDT 2012

aliciabloom RT @_lizzy_ Change is what I am hoping for! "Talking about sex wont get youpregnant, and talking about death wont kill you."

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kilani19 @doctatum@aahpm@rfberry I know our calif med assoc is very active (cma). #hpm Iknow a rep from there.

Wed Jul 18 19:00:15 PDT 2012

aliciabloom thanks to @rfberry for facilitating a really great discussion! #hpmWed Jul 18 19:00:16 PDT 2012

rfberry @equijada (for me) to be pain free & have the highest quality of life possible for as

long as possible. #hpmWed Jul 18 19:00:44 PDT 2012

JenLBose RT @aliciabloom: thanks to @rfberry for facilitating a real ly great discussion! #HpmWed Jul 18 19:00:55 PDT 2012

pamressler @rfberry Thanks for hosting a wonderful discussion tonight! Thanks to everyone for agreat chat...good night all. #hpm

Wed Jul 18 19:01:03 PDT 2012

IM4PBS +1 RT @aliciabloom: thanks to @rfberry for facilitating a really great discussion! #hpmWed Jul 18 19:01:11 PDT 2012

rfberry @aliciabloom was super fun, great chat, appreciated everyone's perspective!! Coldsome of you help me spread the word about... #hpm

Wed Jul 18 19:01:39 PDT 2012

doctatum Local letters/connections matter. Please contact your legislators for #PCHETA#hpmWed Jul 18 19:01:45 PDT 2012

rfberry Why You Should Demand Pal liative Care (Next Wednesday in #SanFrancisco )http://t.co/Tt4b8qbn#sf#hpmWed Jul 18 19:01:56 PDT 2012

BillPfohl @rfberry Great job...And thanks for putting up with me! #hpmWed Jul 18 19:02:01 PDT 2012

equijada @rfberry Devils advocate: are you sure? If you were dx with colon CA stage 2tomorrow, what would you want? #hpm

Wed Jul 18 19:02:35 PDT 2012

kilani19 @rfberry@pamressler@BillPfohl@doctatum@aliciabloom@jfclearywisc thanks youguys! This is always fun! #hpm

Wed Jul 18 19:02:39 PDT 2012

scottyoung6 @OrtizAndrew Looks like I'm going to be come back to Wakonda for at least 1 weekthis summer. #familycamp2#HPM

Wed Jul 18 19:02:47 PDT 2012

rfberry @BillPfohl absolutely! Different perspectives make for GREAT discussions! You'rewelcome any time! #hpm

Wed Jul 18 19:02:53 PDT 2012

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rfberry RT @doctatum Local letters/connections matter. Please contact your legislators for#PCHETAhttp://t.co/OySLFaML via @AAHPM#hpm

Wed Jul 18 19:02:56 PDT 2012

rfberry @equijada palliative care. Immediately! #hpmWed Jul 18 19:03:15 PDT 2012

equijada I think when we talk about terminal illness, we can frame it with pain free and bestpossible QOL. #hpm

Wed Jul 18 19:03:34 PDT 2012

rfberry @equijada (be sure to notice I'm not saying hospice immediately :) #hpmWed Jul 18 19:03:42 PDT 2012

melee_me RT @equijada: I think when we talk about terminal i llness, we can frame it with painfree and best possible QOL. #hpm

Wed Jul 18 19:03:47 PDT 2012

equijada but...with a serious illness, I'll exchange pain for cure. #hpmWed Jul 18 19:04:12 PDT 2012

rfberry agree (&serious illness) RT @equijada I think when we talk abt terminal illness, wecan frame it with pain free and best possible QOL. #hpm

Wed Jul 18 19:04:19 PDT 2012

rfberry why do you have to choose, palliative care you can have both. RT @equijadabut...with a serious illness, Ill exchange pain for cure #hpm

Wed Jul 18 19:04:51 PDT 2012

aliciabloom @rfberry@equijada me too! i'd want pallia tive care to help navigate options, providesupport & symptom control; wouldn't want hospice #hpm

Wed Jul 18 19:05:12 PDT 2012

IM4PBS @rfberry exactly! the choices are not mutually exclusive! RT @equijada but...with aserious illness, Ill exchange pain for cure #hpm

Wed Jul 18 19:05:34 PDT 2012

equijada at my age, with 3 kids, i'll take lousy QOL for length. I'll just reframe lousy QOL over

time. #hpmWed Jul 18 19:05:59 PDT 2012

aliciabloom +1! RT @kilani19: @rfberry@pamressler@BillPfohl@doctatum@aliciabloom@jfclearywisc thanks you guys! This is always fun! #hpm

Wed Jul 18 19:06:47 PDT 2012

equijada i can't reframe time. #hpmWed Jul 18 19:06:54 PDT 2012

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BillPfohl Quote of the night! RT @_lizzy_: "Talking about sex wont get you pregnant, and talkingabout death wont kill you." #Hpm

Wed Jul 18 19:07:06 PDT 2012

rfberry @equijada & that is your choice... ESPECIALLy as someone that understands fullywhat your options are! #hpm

Wed Jul 18 19:07:10 PDT 2012

hpmmsudo RT @doctatum: Local letters/connections matter. Please contact your legislators for#PCHETA#hpm

Wed Jul 18 19:07:38 PDT 2012

equijada Thanks for hosting @rfberry Great job!!! #hpmWed Jul 18 19:07:40 PDT 2012

JenLBose @doctatum I contacted my reps this evening! #HpmWed Jul 18 19:09:38 PDT 2012

equijada @rfberry agree so we have to define PC as something different than pain free andbest QOL. Perhaps calling it "giving best options" #hpm

Wed Jul 18 19:09:40 PDT 2012

JoanneKenen #hpm and #palliative tweeps, this one for you too RT @ezraklein: This, from@EbertChicago, is beautiful: http://t.co/cFH0Rg51

Wed Jul 18 19:14:32 PDT 2012