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6/27/12 12:32 Phpm - Healthcare Social Media Transcript

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FMDGirl Hi everyone, this is Kari- RN and e-patient, also have fibromuscular dysplasia. Palliativemed important to those affected by FMD #hpmWed Oct 12 18:03:16 PDT 2011

AfternoonNapper @KathyKastner Welcome to the chat! #hpmWed Oct 12 18:03:32 PDT 2011

AfternoonNapper @FMDGirl Wonderful to see you, Kari! #hpmWed Oct 12 18:03:45 PDT 2011

authordhallman David, author of palliative care memoir "August Farewell" Sorry for missing last 2 weeks.#hpmWed Oct 12 18:03:56 PDT 2011

KathyKastner Thanks. Want to learn more about #FMD RT @AfternoonNapper : @KathyKastner Welcometo the chat! #hpmWed Oct 12 18:03:59 PDT 2011

KathyKastner @authordhallman Hi David! #hpmWed Oct 12 18:04:10 PDT 2011

FMDGirl @AfternoonNapper Thank you Sarah for hosting! #hpmWed Oct 12 18:04:22 PDT 2011

AfternoonNapper @authordhallman Hello, David - glad you can join us! #hpmWed Oct 12 18:04:35 PDT 2011

KathyKastner +1RT @FMDGirl : @AfternoonNapper Thank you Sarah for hosting! #hpmWed Oct 12 18:04:38 PDT 2011

SML_Singletary Hello. Friend & coworker of @AfternoonNapper . Looking forward to sharing & learning fromeveryone. #hpmWed Oct 12 18:04:52 PDT 2011

FMDGirl @KathyKastner http://t.co/4pt49NBd #hpmWed Oct 12 18:05:09 PDT 2011

AfternoonNapper @KathyKastner (We FMD patients are always willing to share!) #hpmWed Oct 12 18:05:11 PDT 2011

AfternoonNapper @SML_Singletary Welcome to the chat! #hpmWed Oct 12 18:05:33 PDT 2011

AfternoonNapper As a patient w/ chronic & incurable illness, I have made advance directives for long term
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care & EOL/funeral plans, bringing us to T1. #hpmWed Oct 12 18:06:02 PDT 2011

FMDGirl @SML_Singletary Nice to meet a friend of Sarah's- must be awesome to work with her :)#hpmWed Oct 12 18:06:15 PDT 2011

nursefriendly RT @AfternoonNapper : As a patient w/ chronic & incurable illness, I have made advancedirectives for long term care & EOL/funeral plans, bringing us to T1. #hpmWed Oct 12 18:06:32 PDT 2011

schwartzbrown Hi, Mindy here. Social Worker from NJ #hpmWed Oct 12 18:06:42 PDT 2011

AfternoonNapper @schwartzbrown Glad to see you, Mindy. #hpmWed Oct 12 18:07:08 PDT 2011

nursefriendly @AfternoonNapper Wish more people would make up Living Wills and #advancedirectivesearly #hpmWed Oct 12 18:07:12 PDT 2011

KathyKastner TY (will save 4 after chat :)RT @FMDGirl : http://t.co/aIefrWLc #hpmWed Oct 12 18:07:14 PDT 2011

AfternoonNapper T1 What have been your experiencespersonally and/or professionallywith funeralplanning? #hpmWed Oct 12 18:07:16 PDT 2011

FMDGirl This topic is one we will be address in the spring at our support group- I know it is importantbut it scares me! #hpmWed Oct 12 18:07:37 PDT 2011

authordhallman We planned Bills funeral during his last 2 weeks. He was involved. Provided poignantdistraction for me. #hpmWed Oct 12 18:07:45 PDT 2011

nursefriendly RT @AfternoonNapper : T1 What have been your experiencespersonally and/orprofessionallywith funeral planning? #hpmWed Oct 12 18:08:25 PDT 2011

FMDGirl Personally- planning my uncle's funeral. He lived with me during his bout with cancer, I washis caregiver. #hpmWed Oct 12 18:08:40 PDT 2011

SML_Singletary My experiences have been for family members. The hospice & funeral home staffs make allthe difference. #hpmWed Oct 12 18:09:30 PDT 2011
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nursefriendly @AfternoonNapper It's a topic that brings out some explosive emotions if not handled verycarefully #hpmWed Oct 12 18:09:33 PDT 2011

nursefriendly RT @FMDGirl : This topic is one we will be address in the spring at our support group- Iknow it is important but it scares me! #hpmWed Oct 12 18:09:44 PDT 2011

FMDGirl T1. I learned not all family members were comfortable with his wishes. #hpmWed Oct 12 18:09:49 PDT 2011

nursefriendly RT @authordhallman : We planned Bills funeral during his last 2 weeks. He was involved.Provided poignant distraction for me. #hpmWed Oct 12 18:09:50 PDT 2011

AfternoonNapper @authordhallman I like your wording "poignant distraction." Did you find any solace in theprocess? #hpmWed Oct 12 18:09:51 PDT 2011

KathyKastner Have u planned yrs? @authordhallman : We planned Bills funeral during last 2 wks.He wasinvolved. Provided poignant distraction 4 me. #hpmWed Oct 12 18:09:59 PDT 2011

nursefriendly @authordhallman Aside from knowing what funeral home would be handling thearrangements, years in advance, little was planned #hpmWed Oct 12 18:10:28 PDT 2011

KathyKastnerHow'd u handle that RT @FMDGirl : T1. I learned not all family members were comfortablewith his wishes. #hpmWed Oct 12 18:10:28 PDT 2011

nursefriendly RT @FMDGirl : Personally- planning my uncle's funeral. He lived with me during his boutwith cancer, I was his caregiver. #hpmWed Oct 12 18:11:11 PDT 2011

nursefriendly @FMDGirl It makes a very big difference, if you can see the "need" for planning a funeralcoming #hpmWed Oct 12 18:11:49 PDT 2011

nursefriendly @FMDGirl It makes a very big difference, if you can see the "need" for planning a funeralcoming #hpmWed Oct 12 18:11:49 PDT 2011

authordhallman T1 Planning Bill's funeral during the 2 weeks of his dying was stress relief/avoidance for me,not really solace. #hpmWed Oct 12 18:12:03 PDT 2011
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FMDGirl @KathyKastner I respected his wishes, it was easy for me because I understood - havesome of the same wishes for myself- hard 4 my mom #hpmWed Oct 12 18:12:23 PDT 2011

nursefriendly @FMDGirl In a terminal, chronic illness, bringing the topic up, while not easy, is expected#hpmWed Oct 12 18:12:41 PDT 2011

nursefriendly See a lot of that in #hospitals RT @FMDGirl : T1. I learned not all family members werecomfortable with his wishes. #hpmWed Oct 12 18:13:11 PDT 2011

KathyKastner @FMDGirl Is it rude to ask what wishes were same for two of you? #hpmWed Oct 12 18:13:18 PDT 2011

nursefriendly @FMDGirl Not having wishes "spelled out" and respected can tear a family apart at theworst possible time. #hpmWed Oct 12 18:13:50 PDT 2011

KathyKastner @nursefriendly How do U deal w family members not comftable w pts eolwishes? #hospitals #hpmWed Oct 12 18:14:17 PDT 2011

FMDGirl @KathyKastner He wanted to be cremated. That was difficult for family to understand.#hpmWed Oct 12 18:14:35 PDT 2011

KathyKastner @nursefriendly (forgot to say a proper hi. HIi) #hpmWed Oct 12 18:14:51 PDT 2011

nursefriendly Not agreeing with final wishes is one thing, disobeying them completely and doing theopposite, is another @FMDGirl #hpmWed Oct 12 18:15:10 PDT 2011

KathyKastner TY 4 sharing. Same as my wishes :)RT @FMDGirl : @KathyKastner He wanted to becremated. That was difficult for family to understand. #hpmWed Oct 12 18:15:12 PDT 2011

AfternoonNapper @schwartzbrown In your line of work, do you deal with disagreements/misunderstandingsregarding EOL issues much? #hpmWed Oct 12 18:15:27 PDT 2011

FMDGirl Also- the decision for hospice was very difficult. It is a day I will never forget. #hpmWed Oct 12 18:15:33 PDT 2011

nursefriendly RT @authordhallman : T1 Planning Bill's funeral during the 2 weeks of his dying was stressrelief/avoidance for me, not really solace. #hpm
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Wed Oct 12 18:15:47 PDT 2011

nursefriendly RT @FMDGirl : @KathyKastner I respected his wishes, it was easy for me because Iunderstood - have some of the same wishes for myself- hard 4 my mom #hpmWed Oct 12 18:16:03 PDT 2011

SML_Singletary I think hospice is a wonderful service. #hpmWed Oct 12 18:16:33 PDT 2011

nursefriendly @FMDGirl It is so important to have a responsible person handling your affairs #hpmWed Oct 12 18:16:41 PDT 2011

KathyKastner Why?Isn't hospice a more caring RT @FMDGirl : Also- the decision for hospice was verydifficult. It is a day I will never forget. #hpmWed Oct 12 18:17:03 PDT 2011

nursefriendly Very carefully . . . RT @KathyKastner : @nursefriendly How do U deal w family membersnot comftable w pts eol wishes? #hospitals #hpmWed Oct 12 18:17:23 PDT 2011

FMDGirl I have realized that personally I do not want a grave site etc... I really don't want by childrento feel the guilt of not visiting #hpmWed Oct 12 18:17:38 PDT 2011

AfternoonNapper Kari's mention of her own final wishes moves nicely into our second topic of the evening...#hpmWed Oct 12 18:18:09 PDT 2011

nursefriendly @KathyKastner Need to remind them what "the patient" would have wanted, acknowledgetheir concerns #hospitals #hpmWed Oct 12 18:18:23 PDT 2011

KathyKastner and to think, last week's #hp topic = guilt RT @FMDGirl : II really don't want by children tofeel the guilt of not visiting #hpmWed Oct 12 18:18:37 PDT 2011

KathyKastner Nice RT @nursefriendly : @KathyKastner Need to remind them what "the patient" wouldhave wanted, acknowledge their concerns #hospitals #hpmWed Oct 12 18:18:52 PDT 2011

AfternoonNapper T2 Have you contemplated or made funeral/burial plans for yourself and/or immediate lovedones? Why or why not? #hpmWed Oct 12 18:18:57 PDT 2011

authordhallman @FMDGirl With all due respect, don't close the door to a grave site. Your children might infact treasure such a place to 'visit'. #hpmWed Oct 12 18:19:15 PDT 2011
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FMDGirl @KathyKastner It was admitting defeat in some ways. I am the nurse in the family, thecaretaker- I could not care for him in death #hpmWed Oct 12 18:19:16 PDT 2011

nursefriendly @KathyKastner Often it is best to let the families work it out for themselves #hospitals #hpmWed Oct 12 18:19:23 PDT 2011

nursefriendly Not a problem :) RT @KathyKastner : @nursefriendly (forgot to say a proper hi. HIi) #hpmWed Oct 12 18:19:49 PDT 2011

nursefriendly RT @AfternoonNapper : @schwartzbrown In your line of work, do you deal withdisagreements/misunderstandings regarding EOL issues much? #hpmWed Oct 12 18:20:06 PDT 2011

KathyKastner T2 My hub's bot plots, paid 4 arrangements. He'll hve to change that cuz I want 2 becreamated (and hve verrry detailed AD) #hpmWed Oct 12 18:20:08 PDT 2011

SML_Singletary I haven't made official plans, but I want to look fabulous. Pink, glitter, sparkles, etc. Thencremation. #hpmWed Oct 12 18:20:08 PDT 2011

FMDGirl T2- I have made my wishes clear, but have not formally written any thing down. I know theimportance of it, but difficult to do #hpmWed Oct 12 18:20:15 PDT 2011

AfternoonNapper RT @SML_Singletary : I havent made official plans, but I want to look fabulous. Pink, glitter,sparkles, etc. Then cremation. #hpmWed Oct 12 18:20:35 PDT 2011

FMDGirl @SML_Singletary LOVE IT!!!! #hpmWed Oct 12 18:20:49 PDT 2011

nursefriendly @AfternoonNapper Deal with "DNR" and #hospice conversations almost every week, verytricky conversations #hpmWed Oct 12 18:20:51 PDT 2011

RossJeanette Hi all sorry I'm joining late. HPM doc in Texas. #HpmWed Oct 12 18:21:12 PDT 2011

nursefriendly @AfternoonNapper Takes an awful lot of "care conferences" and "family meetings" to clear#hpmWed Oct 12 18:21:40 PDT 2011

AfternoonNapper @RossJeanette Good evening! You're always welcome to join. #hpmWed Oct 12 18:21:55 PDT 2011
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schwartzbrown @AfternoonNapper I have not encountered a lot of disagreement in EOL issues in my workamong the patients & families #hpmWed Oct 12 18:21:58 PDT 2011

FMDGirl I told my boys the other night to throw my ashes with all of our pets ashes together and I willbe happy :) #hpm

Wed Oct 12 18:22:01 PDT 2011

KathyKastner @RossJeanette Hallo Jeanette! #HpmWed Oct 12 18:22:04 PDT 2011

FMDGirl They said they drop me from a plane! :P #hpmWed Oct 12 18:22:05 PDT 2011

FMDGirl @FMDGirl My ashes that is- he he #hpmWed Oct 12 18:23:09 PDT 2011

AfternoonNapper In making my plans, I found a form that made it "easier" to answer the required questionsrather than come up w/ questions myself. #hpmWed Oct 12 18:23:30 PDT 2011

SML_Singletary LOL @FMDGirl that's too funny! #hpmWed Oct 12 18:23:33 PDT 2011

KathyKastner T2 I have a box w my clothes that girls want, labelled: when I die. It's now part of our regularconvos (Mom cn I have this..when u die) #hpm

Wed Oct 12 18:23:36 PDT 2011

RossJeanette T2 not made specific plans but contemplated cremation. Undecided about what to do withashes. Spread in a beautiful place vs an urn. #HpmWed Oct 12 18:23:44 PDT 2011

nursefriendly Very misunderstood service, concept. Takes lotsa #education RT @SML_Singletary : I think#hospice is a wonderful service. #hpmWed Oct 12 18:23:54 PDT 2011

KathyKastner LOLRT @FMDGirl : @FMDGirl My ashes that is- he he #hpmWed Oct 12 18:23:58 PDT 2011

nursefriendly RT @KathyKastner : Why?Isn't hospice a more caring RT @FMDGirl : Also- the decision forhospice was very difficult. It is a day I will never forget. #hpmWed Oct 12 18:24:05 PDT 2011

schwartzbrown My hub and i have plan that whoever dies first gets cremated and stuffed in my stuffed frogand the second gets buried with the frog #hpm
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Wed Oct 12 18:24:22 PDT 2011

KathyKastner T2 making my plans, realized how much I didn't know abtt repercussions of medical options.#hpm now developing app 4 eol decisionsWed Oct 12 18:24:45 PDT 2011

authordhallman T2 We have a double niche. Bill's ashes are there already. Mine will be. #hpmWed Oct 12 18:24:56 PDT 2011

kdhoffman2 Hi all, just got here. #hpmWed Oct 12 18:24:57 PDT 2011

AfternoonNapper I go through & check my form every few months. Update it if I need to & date it "current asof..." so that those who need it will know. #hpmWed Oct 12 18:25:03 PDT 2011

nursefriendly @KathyKastner For those in #denial , discussing #hospice can be seen as "giving up allhope" accepting #death , hard to accept #hpmWed Oct 12 18:25:07 PDT 2011

nursefriendly RT @FMDGirl : I have realized that personally I do not want a grave site etc... I really don'twant by children to feel the guilt of not visiting #hpmWed Oct 12 18:25:24 PDT 2011

AfternoonNapper @kdhoffman2 So glad you could join us! Welcome to the chat. #hpmWed Oct 12 18:25:29 PDT 2011

SML_Singletary @KathyKastner an EOL App? NEAT! #hpmWed Oct 12 18:25:49 PDT 2011

nursefriendly RT @AfternoonNapper : T2 Have you contemplated or made funeral/burial plans for yourselfand/or immediate loved ones? Why or why not? #hpmWed Oct 12 18:25:49 PDT 2011

KathyKastner @kdhoffman2 Hi Kathy (didja see my comment on yr gr8 post about health lit? #hpmWed Oct 12 18:25:58 PDT 2011

KathyKastner Thanks. I have a wiki if you wanna see it to date RT @SML_Singletary : @KathyKastner anEOL App? NEAT! #hpmWed Oct 12 18:26:22 PDT 2011

aliciabloom as a society, seems more natural to make decisions about their funeral arrangements thantheir end of life healthcare wishes. #hpmWed Oct 12 18:26:31 PDT 2011

nursefriendly @AfternoonNapper T2 No arrangements yet, my wife and I are both under 50, having said
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that, we both have #livingwills #trusts #hpmWed Oct 12 18:26:34 PDT 2011

AfternoonNapper @KathyKastner Do you have more information about the EOL app that's being developed?#hpmWed Oct 12 18:26:44 PDT 2011

KathyKastner RT @aliciabloom : as a society, seems more natural to make decisions about their funeralarrangements than their end of life healthcare wishes. #hpmWed Oct 12 18:26:49 PDT 2011

kdhoffman2 Yes, Kathy, Thank you so much for that comment. It was so generous. #hpmWed Oct 12 18:27:13 PDT 2011

nursefriendly @AfternoonNapper T2 #death has a very strong #stigma attached to it, most people won'taddress it till they have to #hpmWed Oct 12 18:27:16 PDT 2011

nursefriendly RT @authordhallman : @FMDGirl With all due respect, don't close the door to a grave site.Your children might in fact treasure such a place to 'visit'. #hpmWed Oct 12 18:27:28 PDT 2011

nursefriendly RT @FMDGirl : @KathyKastner It was admitting defeat in some ways. I am the nurse in thefamily, the caretaker- I could not care for him in death #hpmWed Oct 12 18:27:40 PDT 2011

aliciabloom as a society, seems more natural to make plans about funerals than about end of lifehealthcare wishes. #hpmWed Oct 12 18:28:00 PDT 2011

authordhallman #HPM T2 http://t.co/oHBssvO4Wed Oct 12 18:28:03 PDT 2011

nursefriendly RT @KathyKastner : T2 My hub's bot plots, paid 4 arrangements. He'll hve to change thatcuz I want 2 be creamated (and hve verrry detailed AD) #hpmWed Oct 12 18:28:04 PDT 2011

AfternoonNapper Does waiting to address death until it is "needed" make it harder to do vs. addressing itwhen it is not on the imminent horizon? #hpmWed Oct 12 18:28:17 PDT 2011

nursefriendly RT @SML_Singletary : I haven't made official plans, but I want to look fabulous. Pink, glitter,sparkles, etc. Then cremation. #hpmWed Oct 12 18:28:19 PDT 2011

RossJeanette @KathyKastner Interesting let us know when the EOL app is ready #HpmWed Oct 12 18:28:22 PDT 2011
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FMDGirl @nursefriendly Agreed! #hpmWed Oct 12 18:28:29 PDT 2011

nursefriendly RT @FMDGirl : T2- I have made my wishes clear, but have not formally written any thingdown. I know the importance of it, but difficult to do #hpmWed Oct 12 18:28:32 PDT 2011

kdhoffman2 Kathy, I am so impressed that you are taking care to help your children by letting themchoose before. #hpmWed Oct 12 18:28:41 PDT 2011

EOLnavigator Hey...sorry I'm late! #hpmWed Oct 12 18:28:43 PDT 2011

aliciabloom perhaps it's easier to acknowledge the reality of death, than to consider how we get there.#hpmWed Oct 12 18:28:52 PDT 2011

KathyKastner @EOLnavigator Oh boy. gr8 to see you. #hpmWed Oct 12 18:29:09 PDT 2011

AfternoonNapper @EOLnavigator Welcome! Thanks for joining in. #hpmWed Oct 12 18:29:13 PDT 2011

FMDGirl RT @aliciabloom : perhaps its easier to acknowledge the reality of death, than to considerhow we get there. #hpmWed Oct 12 18:29:28 PDT 2011

nursefriendly @FMDGirl T2 We never know when we'll wish, we had written down all our wishes. #hpmWed Oct 12 18:29:28 PDT 2011

KathyKastner TY :) RT @kdhoffman2 : Kathy, I am so impressed that you are taking care to help yourchildren by letting them choose before. #hpmWed Oct 12 18:29:32 PDT 2011

AfternoonNapper @aliciabloom Thank you for joining in the discussion! #hpmWed Oct 12 18:29:35 PDT 2011

nursefriendly @FMDGirl T2 If you loved ones are aware, that will help the process, aware and respectfulof your wishes #hpmWed Oct 12 18:29:50 PDT 2011

aliciabloom @AfternoonNapper happy to be here! sorry to be late. #hpmWed Oct 12 18:30:01 PDT 2011
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nursefriendly RT @schwartzbrown : @AfternoonNapper I have not encountered a lot of disagreement inEOL issues in my work among the patients & families #hpmWed Oct 12 18:30:21 PDT 2011

KathyKastner Here's wiki http://t.co/ZIUNMRDs RT @RossJeanette : @KathyKastner Interesting let usknow when the EOL app is ready #HpmWed Oct 12 18:30:22 PDT 2011

kdhoffman2 One of the worse things that my sisters and I went through was dealing with our parent'shouse. #hpmWed Oct 12 18:30:34 PDT 2011

KathyKastner RT @kdhoffman2 : One of the worse things that my sisters and I went through was dealingwith our parent's house. #hpmWed Oct 12 18:30:52 PDT 2011

nursefriendly @schwartzbrown Wow, I want to work with more of your #patients and #families #hpmWed Oct 12 18:31:04 PDT 2011

KathyKastner RT @nursefriendly : @KathyKastner Often it is best to let the families work it out forthemselves #hospitals #hpmWed Oct 12 18:31:15 PDT 2011

nursefriendly RT @FMDGirl : I told my boys the other night to throw my ashes with all of our pets ashestogether and I will be happy :) #hpmWed Oct 12 18:31:18 PDT 2011

AfternoonNapper @kdhoffman2 Legally, emotionally, physically - or all three? #hpmWed Oct 12 18:31:21 PDT 2011

nursefriendly @FMDGirl Personally, want my ashes spread in my mom's garden. #hpmWed Oct 12 18:31:52 PDT 2011

hollyby Also arriving late! Holly Yang, doc w/ @SanDiegoHospice . All tweets are mine. Next 30 minon the #hospice & #palliative med chat! #hpmWed Oct 12 18:31:59 PDT 2011

nursefriendly RT @AfternoonNapper : In making my plans, I found a form that made it "easier" to answerthe required questions rather than come up w/ questions myself. #hpmWed Oct 12 18:32:13 PDT 2011

kdhoffman2 emotionally and physically. #hpmWed Oct 12 18:32:18 PDT 2011

AfternoonNapper @hollyby Wonderful to have you here. Welcome to tonight's chat! #hpmWed Oct 12 18:32:28 PDT 2011
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nursefriendly @KathyKastner T2 #Death has become a #taboo topics with a tremendous #stigma , it is alarge part of life, should be a table topic #hpmWed Oct 12 18:34:58 PDT 2011

kdhoffman2 my youngest sis had a dx of bone ca at age 30. just after the dx she told us what shewanted (thankfully she is over 10 yr survivor) #hpmWed Oct 12 18:35:02 PDT 2011

hollyby T2: Thought about it for myself, I would want a funeral mass and then a paddle out (amemorial service of sorts for surfers). #hpmWed Oct 12 18:35:09 PDT 2011

nursefriendly RT @RossJeanette : T2 not made specific plans but contemplated cremation. Undecidedabout what to do with ashes. Spread in a beautiful place vs an urn. #HpmWed Oct 12 18:35:09 PDT 2011

FMDGirl@EOLnavigator I could have my boys drop your ashes from a plane like mine! he he #hpmWed Oct 12 18:35:13 PDT 2011

AfternoonNapper @FMDGirl Children represent a unique challenge as do parents when the patient is youngand will most likely die first. #hpmWed Oct 12 18:35:21 PDT 2011

nursefriendly @RossJeanette Remember last #funeral arrangments, the director explained how #ashescould be launched into #orbit :) #HpmWed Oct 12 18:35:50 PDT 2011

KathyKastner Yay hurray RT @kdhoffman2 : (thankfully she is over 10 yr survivor) #hpmWed Oct 12 18:35:59 PDT 2011

EOLnavigator @FMDGirl That would feel liberating to my particles! #hpmWed Oct 12 18:36:03 PDT 2011

nursefriendly RT @schwartzbrown : My hub and i have plan that whoever dies first gets cremated andstuffed in my stuffed frog and the second gets buried with the frog #hpmWed Oct 12 18:36:12 PDT 2011

FMDGirl RT @EOLnavigator : Interesting how people frame the conversations in ways that aretolerable. #hpmWed Oct 12 18:36:16 PDT 2011

AfternoonNapper @EOLnavigator Framing discussions about death so that they are tolerable is indeed hardbut having the discussion is so important! #hpmWed Oct 12 18:36:23 PDT 2011
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FMDGirl @EOLnavigator LOL! Thank you for making me giggle! #hpmWed Oct 12 18:36:44 PDT 2011

FMDGirl RT @AfternoonNapper Framing discussions about death so that they are tolerable isindeed hardbut having the discussion is so important #hpmWed Oct 12 18:37:06 PDT 2011

authordhallman T2 I was at event in San Diego w 275 widows/widowers many in their 30s & 40s. Never tooearly for eol convos but v challenging for kids #hpmWed Oct 12 18:37:07 PDT 2011

kdhoffman2 a v. difficult. convo./ our parents were alive then and she told us not to let them bury her.She wanted cremation. #hpmWed Oct 12 18:37:10 PDT 2011

nursefriendly RT @KathyKastner : T2 making my plans, realized how much I didn't know abttrepercussions of medical options. #hpm now developing app 4 eol decisionsWed Oct 12 18:37:15 PDT 2011

aliciabloom @FMDGirl opportunity 2 discuss death as part of life in non-personal, non-threateningways. The Fall of Freddie the Leaf = amazing book #hpmWed Oct 12 18:37:18 PDT 2011

EOLnavigator @AfternoonNapper I agree...& you never know how a comment here, or a joke there can beso meaningful in the end. #hpmWed Oct 12 18:37:21 PDT 2011

nursefriendly RT @AfternoonNapper : I go through & check my form every few months. Update it if I needto & date it "current as of..." so that those who need it will know. #hpmWed Oct 12 18:37:38 PDT 2011

nursefriendly RT @AfternoonNapper : @kdhoffman2 So glad you could join us! Welcome to the chat.#hpmWed Oct 12 18:37:49 PDT 2011

KathyKastner Someone (with a sense of humor) called my #eol app: Dying for Dummies. #hpmWed Oct 12 18:38:01 PDT 2011

nursefriendly RT @KathyKastner : @kdhoffman2 Hi Kathy (didja see my comment on yr gr8 post abouthealth lit? #hpmWed Oct 12 18:38:04 PDT 2011

AfternoonNapper As we talk about what is hard about having EOL discussions, let's also talk about what canbe done to make it less difficultT2 coming. #hpmWed Oct 12 18:38:04 PDT 2011

AfternoonNapper RT @KathyKastner : Someone (with a sense of humor) called my #eol app: Dying for
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Dummies. #hpmWed Oct 12 18:38:28 PDT 2011

nursefriendly RT @aliciabloom : as a society, seems more natural to make plans about funerals thanabout end of life healthcare wishes. #hpmWed Oct 12 18:38:54 PDT 2011

hollyby Agree! MT @aliciabloom : @FMDGirl ...The Fall of Freddie the Leaf = amazing book #hpmWed Oct 12 18:39:02 PDT 2011

AfternoonNapper Correction: T3 coming! T2 wrapping up... #hpmWed Oct 12 18:39:15 PDT 2011

aliciabloom sometimes the hardest part of a difficult conversation is the anticipation of starting it. #hpmWed Oct 12 18:39:20 PDT 2011

EOLnavigator @KathyKastner I know someone who wrote a proposal for that exact book. #hpmWed Oct 12 18:39:46 PDT 2011

hollyby RT @aliciabloom : sometimes the hardest part of a difficult conversation is the anticipation ofstarting it. #hpmWed Oct 12 18:39:48 PDT 2011

nursefriendly @aliciabloom Many people are very sure, they would prefer to die at home in their ownbeds, vs #hospital or #nursinghome #hpmWed Oct 12 18:39:53 PDT 2011

AfternoonNapper RT @aliciabloom : sometimes the hardest part of a difficult conversation is the anticipation ofstarting it. #hpmWed Oct 12 18:39:54 PDT 2011

nursefriendly RT @AfternoonNapper : Does waiting to address death until it is "needed" make it harder todo vs. addressing it when it is not on the imminent horizon? #hpmWed Oct 12 18:40:12 PDT 2011

AfternoonNapper T3 In what ways can hospices & healthcare providers help patients & families make funeralplans? #hpmWed Oct 12 18:40:16 PDT 2011

KathyKastner Did it ever get published?RT @EOLnavigator : @KathyKastner I know someone who wrotea proposal for that exact book. #hpmWed Oct 12 18:40:21 PDT 2011

NatriceR RT @KathyKastner : Someone (with a sense of humor) called my #eol app: Dying forDummies. #hpmWed Oct 12 18:40:32 PDT 2011
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EOLnavigator RT @aliciabloom : sometimes the hardest part of a difficult conversation is the anticipation ofstarting it. #hpmWed Oct 12 18:40:33 PDT 2011

hollyby RT @AfternoonNapper : T3 In what ways can hospices & healthcare providers help patients& families make funeral plans? #hpmWed Oct 12 18:41:02 PDT 2011

nursefriendly @AfternoonNapper Planning #death is much harder when done unexpectly, vs if planned.Advanced Directive, Wills are same #hpmWed Oct 12 18:41:11 PDT 2011

SML_Singletary T3: The hospice staff let me know it was ok to cry. #hpmWed Oct 12 18:41:32 PDT 2011

aliciabloom @nursefriendly and yet, almost 50% of chronically ill patients die in the acute care setting.we've got to do a better job. #hpmWed Oct 12 18:41:34 PDT 2011

kdhoffman2 Back to trouble of dealing w/going thru stuff is that my m-in-law knows how upsetting it was& she's letting family know who gets what #hpmWed Oct 12 18:41:36 PDT 2011

EOLnavigator @KathyKastner No...the dummies considered it too risky and it wasn't likely to be a bestseller #hpmWed Oct 12 18:41:48 PDT 2011

nursefriendly @AfternoonNapper If done before hand (planning death), issues can be hashed out, all willknow exactly what you wanted #hpmWed Oct 12 18:41:52 PDT 2011

KathyKastner RT @SML_Singletary : T3: The hospice staff let me know it was ok to cry. #hpmWed Oct 12 18:42:03 PDT 2011

nursefriendly @AfternoonNapper You have lots more flexibility in planning for #death when you thinkabout it beforehand. #hpmWed Oct 12 18:42:28 PDT 2011

schwartzbrown I have worked with lots of families on funeral plans. Much easier than health decisions #hpmWed Oct 12 18:42:30 PDT 2011

nursefriendly @AfternoonNapper In planning #death , not everyone will agree, but if given time, earlydiscussion avoids a lot of hard feelings #hpmWed Oct 12 18:43:16 PDT 2011

KathyKastner T3 isn't it ironic that we have most control over health stuff at #eol but don't 'take advantage'#hpm
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Wed Oct 12 18:43:19 PDT 2011

nursefriendly RT @kdhoffman2 : Kathy, I am so impressed that you are taking care to help your childrenby letting them choose before. #hpmWed Oct 12 18:43:34 PDT 2011

AfternoonNapper @schwartzbrown Very interesting that funerals are easier than healthcare decisions! #hpmWed Oct 12 18:43:59 PDT 2011

aliciabloom the more clinicians can normalize discussions about end of life care & make it part of thecontinuum of medical management, the better #hpmWed Oct 12 18:43:59 PDT 2011

nursefriendly Not easier, not a choice RT @aliciabloom : perhaps it's easier to acknowledge the reality ofdeath, than to consider how we get there. #hpmWed Oct 12 18:44:14 PDT 2011

FMDGirl RT @AfternoonNapper : @schwartzbrown Very interesting that funerals are easier thanhealthcare decisions! #hpmWed Oct 12 18:44:21 PDT 2011

AfternoonNapper MT @aliciabloom : the more clinicians can normalize discussions abt EOL care & make itpart medical management, the better #hpmWed Oct 12 18:44:51 PDT 2011

nursefriendly @aliciabloom When you are forced to deal with #death , it is not easier, it simply is. #hpmWed Oct 12 18:45:10 PDT 2011

KathyKastner Interesting. RT @EOLnavigator : @KathyKastner No...the dummies considered it too riskyand it wasn't likely to be a best seller #hpmWed Oct 12 18:45:15 PDT 2011

EOLnavigator I've never felt prepared enough culturally to feel like I'm helpful with funeral arrangements.Always feel like an outsider. #hpmWed Oct 12 18:45:26 PDT 2011

RossJeanette T3 educate healthcare providers on basics of funeral plans. Have brochures with tips forpatients and families. #HpmWed Oct 12 18:45:40 PDT 2011

aliciabloom @nursefriendly i'm not sure i follow... #hpmWed Oct 12 18:45:47 PDT 2011

schwartzbrown I don't think clinicians can compensate for what's not done in families, tho #hpmWed Oct 12 18:45:50 PDT 2011
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AfternoonNapper RT @RossJeanette : T3 educate healthcare providers on basics of funeral plans. Havebrochures with tips for patients and families. #hpmWed Oct 12 18:46:09 PDT 2011

nursefriendly RT @kdhoffman2 : One of the worse things that my sisters and I went through was dealingwith our parent's house. #hpmWed Oct 12 18:46:21 PDT 2011

FMDGirl I have to say good night, time 4 the kiddos to get to bed. Thank you all! @AfternoonNapperyou rock as always! Lots of love #hpmWed Oct 12 18:46:35 PDT 2011

KathyKastner T3 Just attended workshop on cultural differences. Totally relevant t o #hpmWed Oct 12 18:46:42 PDT 2011

EOLnavigator @AfternoonNapper Are there uniform guidelines that you know of? #hpmWed Oct 12 18:46:52 PDT 2011

hollyby T3: Start the convo w/ them re: @aliciabloom : sometimes the hardest part of a difficultconversation is the anticipation of starting it #hpmWed Oct 12 18:47:01 PDT 2011

aliciabloom @nursefriendly i'm not suggesting there's anything easy about dealing with death. wassimply talking about funeral plans vs. ADs. #hpmWed Oct 12 18:47:07 PDT 2011

nursefriendly @kdhoffman2 The more you can plan, make known to family about your wishes, even if notwritten down or formalized, the better #hpmWed Oct 12 18:47:08 PDT 2011

EOLnavigator @FMDGirl Nice chat! Good night. #hpmWed Oct 12 18:47:14 PDT 2011

AfternoonNapper @FMDGirl Thank you for being with us this evening! #hpmWed Oct 12 18:47:15 PDT 2011

AfternoonNapper @EOLnavigator Uniform guidelines would imply that there are uniform people, I think...#hpmWed Oct 12 18:47:44 PDT 2011

aliciabloom @hollyby one of the best, and most important parts of our jobs as #palliative care clinicians.#hpmWed Oct 12 18:47:53 PDT 2011

AfternoonNapper @hollyby Have you found any "best practices" for starting that conversation? #hpmWed Oct 12 18:48:56 PDT 2011
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hollyby Agreed RT @aliciabloom : @hollyby one of the best, and most important parts of our jobs as#palliative care clinicians. #hpmWed Oct 12 18:49:15 PDT 2011

RossJeanette T3 funeral planning brochure http://t.co/2aug4cPb #HpmWed Oct 12 18:49:27 PDT 2011

EOLnavigator @hollyby Sounds like fun for a bunch of ashes! #hpmWed Oct 12 18:49:51 PDT 2011

nursefriendly @kdhoffman2 Distribution of assets, who gets what, so much easier when you have a will,advanced directive spelling it out #hpmWed Oct 12 18:50:05 PDT 2011

AfternoonNapper RT @RossJeanette : T3 funeral planning brochure http://t.co/g82tCyTw #hpmWed Oct 12 18:50:36 PDT 2011

nursefriendly RT @hollyby : Also arriving late! Holly Yang, doc w/ @SanDiegoHospice . All tweets aremine. Next 30 min on the #hospice & #palliative med chat! #hpmWed Oct 12 18:50:39 PDT 2011

aliciabloom sometimes, something as simple as acknowledging that we have difficult stuff to discuss ishelpful. #hpmWed Oct 12 18:50:48 PDT 2011

nursefriendly RT @KathyKastner : T2 I have tequila and dark chocolate with almonds in my AD. #hpm#eolchatWed Oct 12 18:50:51 PDT 2011

kdhoffman2 @nursefriendly I agree the more you make known the better. I need to think of it myself,have a will, haven't decided about the rest #hpmWed Oct 12 18:50:52 PDT 2011

EOLnavigator @AfternoonNapper Right! Was wondering what the basic funeral plan would be that can beinterpreted uniformly....as a guide. #hpmWed Oct 12 18:50:53 PDT 2011

EOLnavigator @RossJeanette Thanks! #hpmWed Oct 12 18:51:56 PDT 2011

nursefriendly Makes it easier RT @FMDGirl : @nursefriendly Yes- Important that my boysunderstand,they are young a lot to handle mom with #raredisease #hpmWed Oct 12 18:52:06 PDT 2011

nursefriendly RT @SML_Singletary : My grandmother has been gone almost 9 months. I still haven't setfoot in her room. It's very hard. #hpmWed Oct 12 18:52:28 PDT 2011
http://twitter.com/9169562/status/124301443963428866http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/SML_Singletaryhttp://www.twitter.com/nursefriendlyhttp://twitter.com/22638297/status/124301352439513089http://www.symplur.com/healthcare-hashtags/hpm/http://www.symplur.com/healthcare-hashtags/raredisease/http://www.twitter.com/nursefriendlyhttp://www.twitter.com/FMDGirlhttp://www.twitter.com/nursefriendlyhttp://twitter.com/43230251/status/124301309523402753http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/RossJeanettehttp://www.twitter.com/EOLnavigatorhttp://twitter.com/43230251/status/124301047572344832http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/AfternoonNapperhttp://www.twitter.com/EOLnavigatorhttp://twitter.com/398495039/status/124301043751329793http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/nursefriendlyhttp://www.twitter.com/kdhoffman2http://twitter.com/22638297/status/124301037761855488http://www.symplur.com/healthcare-hashtags/eolchat/http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/KathyKastnerhttp://www.twitter.com/nursefriendlyhttp://twitter.com/24399366/status/124301026563067904http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/aliciabloomhttp://twitter.com/9169562/status/124300989586079744http://www.symplur.com/healthcare-hashtags/hpm/http://www.symplur.com/healthcare-hashtags/palliative/http://www.symplur.com/healthcare-hashtags/hospice/http://www.twitter.com/SanDiegoHospicehttp://www.twitter.com/hollybyhttp://www.twitter.com/nursefriendlyhttp://twitter.com/346151348/status/124300975208017920http://www.symplur.com/healthcare-hashtags/hpm/http://t.co/g82tCyTwhttp://www.twitter.com/RossJeanettehttp://www.twitter.com/AfternoonNapperhttp://twitter.com/22638297/status/124300844228288512http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/kdhoffman2http://www.twitter.com/nursefriendlyhttp://twitter.com/43230251/status/124300784774021120http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/hollybyhttp://www.twitter.com/EOLnavigatorhttp://twitter.com/117435341/status/124300683565465600http://www.symplur.com/healthcare-hashtags/Hpm/http://t.co/2aug4cPbhttp://www.twitter.com/RossJeanettehttp://twitter.com/32316055/status/124300634223673344http://www.symplur.com/healthcare-hashtags/hpm/http://www.symplur.com/healthcare-hashtags/palliative/http://www.twitter.com/hollybyhttp://www.twitter.com/aliciabloomhttp://www.twitter.com/hollyby

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KathyKastner RT @hollyby : @AfternoonNapper It all starts w/ coming to a shared understanding of wheresomeone is in the disease process & a trusting relationship #hpmWed Oct 12 18:55:15 PDT 2011

nursefriendly We all have comfort zones RT @EOLnavigator : Interesting how people frame theconversations in ways that are tolerable. #hpmWed Oct 12 18:55:31 PDT 2011

nursefriendly RT @kdhoffman2 : my youngest sis had a dx of bone ca at age 30. just after the dx she toldus what she wanted (thankfully she is over 10 yr survivor) #hpmWed Oct 12 18:55:47 PDT 2011

AfternoonNapper As this evening's chat winds to a close, please share with us some thoughts & ideas youare taking away from the discussion. #hpmWed Oct 12 18:55:59 PDT 2011

DrBeckerSchutte Okay all, #EOLChat is live in five minutes. Open to all! #hpm #EOLChatWed Oct 12 18:56:04 PDT 2011

JenMarsh2 See you all there! RT @DrBeckerSchutte : Okay all, #EOLChat is live in five minutes. Opento all! #hpm #eolchatWed Oct 12 18:56:48 PDT 2011

nursefriendly @kdhoffman2 So glad your sister didn't need the "end of life" planning, it is good that shemake her wishes known #eolchat #hpmWed Oct 12 18:56:53 PDT 2011

AfternoonNapper @DrBeckerSchutte I'll see you there! #EOLChat #hpmWed Oct 12 18:57:06 PDT 2011

nursefriendly RT @hollyby : T2: Thought about it for myself, I would want a funeral mass and then apaddle out (a memorial service of sorts for surfers). #hpmWed Oct 12 18:57:10 PDT 2011

hollyby @AfternoonNapper I often ask if they have any particular rites, rituals, or events that areimportant to them around end of life #hpmWed Oct 12 18:57:11 PDT 2011

hollyby Terrific group and discussion as always! Thanks @AfternoonNapper for moderating! #hpmWed Oct 12 18:57:43 PDT 2011

nursefriendly @hollyby T2 Having your ashes spread out to see is popular I've noticed, heard of manychoosing that option #hpmWed Oct 12 18:57:48 PDT 2011

Thanks friends for another good HPM tweetchat. #hpm
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authordhallman Wed Oct 12 18:58:01 PDT 2011

EOLnavigator Respect for people's wishes is paramount & knowing their wishes is a gift. #hpmWed Oct 12 18:58:03 PDT 2011

KathyKastner Great hosting. Terrific topic. Many thanks. @AfternoonNapper I'll see you at #EOLChat#hpmWed Oct 12 18:58:05 PDT 2011

nursefriendly RT @AfternoonNapper : @FMDGirl Children represent a unique challenge as do parentswhen the patient is young and will most likely die first. #hpmWed Oct 12 18:58:10 PDT 2011

AfternoonNapper @hollyby I very much like your phrasing of "rites, rituals, or events." Very respectful of allpersuasions and affiliations. #hpmWed Oct 12 18:58:11 PDT 2011

KathyKastner RT @AfternoonNapper : @hollyby I very much like your phrasing of "rites, rituals, or events."Very respectful of all persuasions and affiliations. #hpmWed Oct 12 18:58:24 PDT 2011

AfternoonNapper RT @EOLnavigator : Respect for peoples wishes is paramount & knowing their wishes is agift. #hpmWed Oct 12 18:58:30 PDT 2011

EOLnavigator Thanks @afternoonnapper #hpmWed Oct 12 18:58:32 PDT 2011

hollyby +1 RT @EOLnavigator : Respect for peoples wishes is paramount & knowing their wishes isa gift. #hpmWed Oct 12 18:58:34 PDT 2011

aliciabloom thanks, @AfternoonNapper for hosting! see you all next week. #hpmWed Oct 12 18:58:51 PDT 2011

nursefriendly @AfternoonNapper Thanks for hosting! Brought up a lot of great points, discussion :) #hpmWed Oct 12 18:58:58 PDT 2011

aliciabloom +1 more RT @hollyby : +1 RT @EOLnavigator : Respect for peoples wishes is paramount &knowing their wishes is a gift. #hpmWed Oct 12 18:59:02 PDT 2011

KathyKastner RT @nursefriendly : @AfternoonNapper Thanks for hosting! Brought up a lot of great points,discussion :) #hpmWed Oct 12 18:59:08 PDT 2011
http://twitter.com/101386174/status/124303124004478976http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/AfternoonNapperhttp://www.twitter.com/nursefriendlyhttp://www.twitter.com/KathyKastnerhttp://twitter.com/24399366/status/124303097739739136http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/EOLnavigatorhttp://www.twitter.com/hollybyhttp://www.twitter.com/aliciabloomhttp://twitter.com/22638297/status/124303080316612608http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/AfternoonNapperhttp://www.twitter.com/nursefriendlyhttp://twitter.com/24399366/status/124303052390936576http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/AfternoonNapperhttp://www.twitter.com/aliciabloomhttp://twitter.com/32316055/status/124302977812013056http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/EOLnavigatorhttp://www.twitter.com/hollybyhttp://twitter.com/43230251/status/124302972871114752http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/afternoonnapperhttp://www.twitter.com/EOLnavigatorhttp://twitter.com/346151348/status/124302962469240832http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/EOLnavigatorhttp://www.twitter.com/AfternoonNapperhttp://twitter.com/205752125/status/124302939224412160http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/hollybyhttp://www.twitter.com/AfternoonNapperhttp://www.twitter.com/KathyKastnerhttp://twitter.com/346151348/status/124302881594683392http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/hollybyhttp://www.twitter.com/AfternoonNapperhttp://twitter.com/9169562/status/124302880671940608http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/FMDGirlhttp://www.twitter.com/AfternoonNapperhttp://www.twitter.com/nursefriendlyhttp://twitter.com/205752125/status/124302858383409152http://www.symplur.com/healthcare-hashtags/hpm/http://www.symplur.com/healthcare-hashtags/EOLChat/http://www.twitter.com/AfternoonNapperhttp://www.twitter.com/KathyKastnerhttp://twitter.com/138204091/status/124302848786829313http://www.symplur.com/healthcare-hashtags/hpm/http://www.twitter.com/EOLnavigatorhttp://twitter.com/284885422/status/124302843363594240http://www.twitter.com/authordhallman

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BGlickstein @KathyKastner Love this idea of creating an app for EOL decisions #hpmWed Oct 12 18:59:13 PDT 2011

AfternoonNapper Very best wishes to all. Keep the discussion going i

#Hpm Tweet Chat 10:12:11

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