#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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Becky Brandt RN @bbhomebody
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat here: https://t.co/LKgjwgkw6n
Patient Chat @patientchat
Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients
Patient Empowerment @power4patients
RT @patientchat: Here’s a handy article on participating in tweet chats: https://t.co/5JyoTGvZvH #patientchat
Patient Empowerment @power4patients
RT @patientchat: Learn more about the Empowered #patientchat series and how to participate here: https://t.co/IqBQ0maGJ7
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Patient Chat @patientchat
I’m Kara from @power4patients and I'm looking forward to chatting with you all today #patientchat
Mighty Casey Quinlan @MightyCasey
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of…
Becky Brandt RN @bbhomebody
Happy Friday everyone. I'm Becky from smokey WA state, RN #RareDisease patient, and advocate. #patientchat https://t.co/q5d6XjWEJE
HealthSparq @HealthSparq
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of…
Patient Chat @patientchat
Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of…
Jeremy Murphy @jeremypmurphy
RT @patientchat: Join us in a few minutes for the Empowered #patientchat. Info/Topics: https://t.co/LKgjwgkw6n https://t.co/W4w3KOVsaK
Vera Rulon FAHIMA @vrulon
Vera here from NY. I have some direct experience in #palliativecare several years ago when my mother became terminally ill.#patientchat
Kevin Freiert @K_SalemOaks
@K_SalemOaks from Salem CT here. Looking forward to a great chat. #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
Hi @patientchat I'm Lucy, from the UK. I have a life-limiting condition which is a very complex, progressive neuromuscular disease & I have received palliative care for over 7 years. I've exceeded my prognosis too. #PalliativeCare has transformed my life. #PatientChat
Inspire @teaminspire
Hi everyone, Eric Taylor, Marketing Manager at Inspire here. Happy to join the #patientchat today!
Patient Chat @patientchat
@K_SalemOaks Hi Kevin! Great to have you here - don't forget to use #patientchat in all your tweets
Katie @katie5280
@patientchat Hello! I'm Katie, an 8 year breast cancer survivor and t2 diabetic! #patientchat
Mighty Casey Quinlan @MightyCasey
Greetings, all. Casey Quinlan here, professional loudmouth on #openscience #opendata #rightcare and participatory med. #patientchat
Mighty Casey Quinlan @MightyCasey
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat here: https://t.co/LKgjwgkw6n
Patient Chat @patientchat
You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat
HealthSparq @HealthSparq
Hi everyone! So glad I could finally make it to #patientchat! Been a while, super busy summer so far! Looking forward to a really important discussion this morning on #chronicillness & #palliativecare
STTR Cancer @sttrcancer
@STTRCancer represents cancer clinicians and researchers across our 4 institutions and will be joining in on the Empowered #patientchat this morning at 10am. Make sure to tune in! #TweetChat #PalliativeCare
Mighty Casey Quinlan @MightyCasey
RT @LucyAlexandria: Hi @patientchat I'm Lucy, from the UK. I have a life-limiting condition which is a very complex, progressive neuromusc…
HealthSparq @HealthSparq
Hey @Cambia & @CambiaGrove great topic to join in on this morning! #PatientChat
Patient Chat @patientchat
Today's #patientchat topic is Palliative Care and Chronic Illness https://t.co/LKgjwgkw6n https://t.co/PLTiL6N4uk
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: Today's #patientchat topic is Palliative Care and Chronic Illness https://t.co/LKgjwgkw6n https://t.co/PLTiL6N4uk
ShereeseM, MS/MBA @ShereesePubHlth
Hello all. I'm Shereese, healthcare strategist & patient advocate from Maryland's Eastern Shore #patientchat https://t.co/X5tkkrYVoa
Lisa Davis Budzinski @lisadbudzinski
Hello everyone! Lisa here from Florida. #intractablepain patient Central Pain Syndrome post-#stroke Co-founder @Cpnervecenter #patientchat
Patient Chat @patientchat
Today's #patientchat was influenced by the recent passing of the Palliative Care and Hospice Education and Training Act (PCHETA) in the House. Learn more about PCHETA here: https://t.co/5bI768qaow https://t.co/INBE06Ba1s
Patient Chat @patientchat
I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat
Patient Empowerment @power4patients
RT @patientchat: Today's #patientchat was influenced by the recent passing of the Palliative Care and Hospice Education and Training Act (P…
Lisa Davis Budzinski @lisadbudzinski
RT @patientchat: Today's #patientchat was influenced by the recent passing of the Palliative Care and Hospice Education and Training Act (P…
Patient Chat @patientchat
Time to start our topics. Here comes T1: #patientchat
Patient Chat @patientchat
T1: What are your thoughts on palliative care? How do you define it? #patientchat https://t.co/N6LbNjkWPO
Patient Empowerment @power4patients
RT @patientchat: T1: What are your thoughts on palliative care? How do you define it? #patientchat https://t.co/N6LbNjkWPO
Suzie Siegel @SuzieSiegel
#Sarcoma patients: If you're interested in learning more about #palliative care, please follow today's #patientchat. (Just keep refreshing #patientchat & jump in with comments or questions.)
HealthSparq @HealthSparq
RT @patientchat: T1: What are your thoughts on palliative care? How do you define it? #patientchat https://t.co/N6LbNjkWPO
Jeremy Murphy @jeremypmurphy
RT @patientchat: T1: What are your thoughts on palliative care? How do you define it? #patientchat https://t.co/N6LbNjkWPO
Kevin Freiert @K_SalemOaks
@patientchat I learned from a Palliative Care specialist at @westchesterbiotechproject that it is simply the treatment/management of symptoms for any patient. #patientchat
Mighty Casey Quinlan @MightyCasey
RT @SuzieSiegel: #Sarcoma patients: If you're interested in learning more about #palliative care, please follow today's #patientchat. (Just…
Becky Brandt RN @bbhomebody
T1-Palliative means " Treating pain without curing it". Everyone deserves #PalliativeCare #patientchat
Lisa Davis Budzinski @lisadbudzinski
T1 “#Palliativecare is specialized medical care for people with serious illness. It is appropriate at any age and at any stage in your illness” #patientchat
Patient Empowerment @power4patients
T1: To me, #pallative care is all about preserving/protecting/enhancing/ensuring quality of life #patientchat
Mighty Casey Quinlan @MightyCasey
RT @patientchat: Today's #patientchat was influenced by the recent passing of the Palliative Care and Hospice Education and Training Act (P…
Mighty Casey Quinlan @MightyCasey
RT @power4patients: T1: To me, #pallative care is all about preserving/protecting/enhancing/ensuring quality of life #patientchat
Mighty Casey Quinlan @MightyCasey
RT @lisadbudzinski: T1 “#Palliativecare is specialized medical care for people with serious illness. It is appropriate at any age and at an…
Vera Rulon FAHIMA @vrulon
T1: #palliativecare meant to ease the burden of terminal illness in all respects for the person - pain, spiritual, etc. #patientchat
Tricia Chaney @TRCWriter
Hi all. I'm a freelance writer from the Atlanta area and a believer in #palliativecare and the importance of those who provide that care. #patientchat
Inspire @teaminspire
RT @lisadbudzinski: T1 “#Palliativecare is specialized medical care for people with serious illness. It is appropriate at any age and at an…
ShereeseM, MS/MBA @ShereesePubHlth
@MightyCasey Near Ocean City. That's the 119th St pier #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
T1: #palliativecare is a holistic pathway of care that manages symptoms & quality of life, incorporating medical, psychosocial, emotional, spiritual & physical needs. It's life-changing & can extend life (has for me!). It's also a human right -https://t.co/ORU3cxd1JT #PatientChat
Jeremy Murphy @jeremypmurphy
@patientchat A1: Palliative care is very important and helpful for helping patients and families with limited time left. It includes hospice care but not limited to that. How do we suggest it to families/friends who might need it? #patientchat
Inspire @teaminspire
RT @power4patients: T1: To me, #pallative care is all about preserving/protecting/enhancing/ensuring quality of life #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
RT @LucyAlexandria: T1: #palliativecare is a holistic pathway of care that manages symptoms & quality of life, incorporating medical, psych…
Vera Rulon FAHIMA @vrulon
Actually a correction - not necessarily a terminal illness - #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @bbhomebody: T1-Palliative means " Treating pain without curing it". Everyone deserves #PalliativeCare #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @K_SalemOaks: @patientchat I learned from a Palliative Care specialist at @westchesterbiotechproject that it is simply the treatment/man…
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @lisadbudzinski: T1 “#Palliativecare is specialized medical care for people with serious illness. It is appropriate at any age and at an…
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @power4patients: T1: To me, #pallative care is all about preserving/protecting/enhancing/ensuring quality of life #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @vrulon: T1: #palliativecare meant to ease the burden of terminal illness in all respects for the person - pain, spiritual, etc. #patien
lillian lake @llake
@ShereesePubHlth I didn't realize where you're from. We used to summer in St. Michaels. Beautiful area. #patientchat
HealthSparq @HealthSparq
RT @power4patients: T1: To me, #pallative care is all about preserving/protecting/enhancing/ensuring quality of life #patientchat
Rev. Dr. Duke @revdrduke
T1: Palliative Care is the management of pain and other disease symptoms. It is not only for end-of-life but is for any stage of treatment. #patientchat #PalliativeCare
Patient Chat @patientchat
Topic 2 (T2:) coming up...https://t.co/q24OWvXPPM #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @jeremypmurphy: @patientchat A1: Palliative care is very important and helpful for helping patients and families with limited time left.…
Lisa Davis Budzinski @lisadbudzinski
@patientchat T1 With an intractable Pain condition like Central Pain Syndrome I think palliative care would be a good fit but most centers shy away from conditions that aren’t cancer related #patientchat
Tami Dew Rich @bostonheartmom
Hi #PatientChat Tami here from o/s Boston #MedicalMama #ePatientFamilyCaregiver Just out of the PT Pool (RotatorCuff Repair Wk16) Really missing my late mom-in-law Millie today 355 days ago @ 98 she had a bad fall with multiple fx that led to her #STRehab #PalliativeCare #Hospice
Patient Chat @patientchat
T2: Who should receive palliative care? When is it appropriate? #patientchat https://t.co/HpMHxLS6NF
Tami Dew Rich @bostonheartmom
RT @patientchat: Today's #patientchat was influenced by the recent passing of the Palliative Care and Hospice Education and Training Act (P…
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @revdrduke: T1: Palliative Care is the management of pain and other disease symptoms. It is not only for end-of-life but is for any stag…
STTR Cancer @sttrcancer
T2. In a #palliativecare summit, we learned that many patients don't know palliative care is available unless they are dying. This is not the case; more education & access needs to be offered to patients in active treatment. https://t.co/EFky40TIPD #patientchat
Kevin Freiert @K_SalemOaks
True. But there recently was a study that showed #palliativecare early on in treatment resulted in better outcomes. I'll look for reference. #patientchat
lillian lake @llake
@patientchat A1 It appears to be different everywhere. My experience is it is helpful for those with long-term chronic illness before, but perhaps as a lead-in to hospice care. They are powerfully helpful when done well. #patientchat
Mighty Casey Quinlan @MightyCasey
T1: Important distinction not made clear enuf yet in public discussion of #palliativecare is that it is for SERIOUS, not solely terminal, illness. #patientchat
Patient Empowerment @power4patients
@jeremypmurphy @patientchat Having been through hospice care with my Mom, I can't say enough about what a compassionate, empathetic, supportive experience it was. Hospice care providers are the rockstars of healthcare #patientchat
lillian lake @llake
RT @patientchat: Today's #patientchat was influenced by the recent passing of the Palliative Care and Hospice Education and Training Act (P…
Mighty Casey Quinlan @MightyCasey
RT @sttrcancer: T2. In a #palliativecare summit, we learned that many patients don't know palliative care is available unless they are dyin…
Jeremy Murphy @jeremypmurphy
RT @patientchat: T2: Who should receive palliative care? When is it appropriate? #patientchat https://t.co/HpMHxLS6NF
Patient Empowerment @power4patients
RT @sttrcancer: T2. In a #palliativecare summit, we learned that many patients don't know palliative care is available unless they are dyin…
ShereeseM, MS/MBA @ShereesePubHlth
T1 Often #pallativecare gets confused w/ other types of care, like #hospice. But it is actually the management of symptons and side effects for conditions #patientchat https://t.co/TIQ9vh8XuJ
Mighty Casey Quinlan @MightyCasey
RT @ShereesePubHlth: T1 Often #pallativecare gets confused w/ other types of care, like #hospice. But it is actually the management of symp…
Rev. Dr. Duke @revdrduke
T2: Anyone suffering from pain or discomfort from disease should receive #palliativecare It is appropriate whenever the patient and her doctor determine it is needed. #patientchat
Tricia Chaney @TRCWriter
A1: #palliativecare provides relief enough to let people have quality time with the people around them. It made a big QOL difference for my family and reduced ER trips because of better symptom management. #patientchat
Vera Rulon FAHIMA @vrulon
T2: #PalliativeCare is for people who are having a particularly difficult time with pain, side effects of tx, spirit, etc. #patientchat
lillian lake @llake
Hi everyone! Tweeting from gorgeous New England. I'm a caregiver advocate, as well as carer to a Type I #diabetic spouse owner of a compassion consultancy. #patientchat
Karen Galler @Karenrosegt
RT @SuzieSiegel: #Sarcoma patients: If you're interested in learning more about #palliative care, please follow today's #patientchat. (Just…
lillian lake @llake
RT @revdrduke: T1: Palliative Care is the management of pain and other disease symptoms. It is not only for end-of-life but is for any stag…
Lucy Watts MBE MUniv FRSA @LucyAlexandria
T2 Anyone who has a life-limiting or terminal condition, as well as those with a chronic, life-altering condition that have a great symptom/disease burden. It should start from diagnosis or as soon as need for it develops. It relies on HCPs recognising & referring #PatientChat
Patient Empowerment @power4patients
@MightyCasey Agreed. I think this is one of the greatest myths/misperceptions about #pallativecare and perhaps why more people aren't receiving it #patientchat
Vera Rulon FAHIMA @vrulon
@power4patients @jeremypmurphy @patientchat I completely agree having experienced home hospice with my mom, as well #patientchat #palliativecare
Becky Brandt RN @bbhomebody
T2 Anyone who has a chronic or #intractablepain condition and needs assistance with pain management, psychological issues, and ADL's (activities of daily living.) #patientchat
Suzie Siegel @SuzieSiegel
RT @revdrduke: T2: Anyone suffering from pain or discomfort from disease should receive #palliativecare It is appropriate whenever the pati…
Jeremy Murphy @jeremypmurphy
@patientchat A2: If we’re told we only have weeks or months to live, we should pursue palliative holistic options like hospice. Some patients will rally with more health/home support and care. #patientchat
Mighty Casey Quinlan @MightyCasey
RT @power4patients: @MightyCasey Agreed. I think this is one of the greatest myths/misperceptions about #pallativecare and perhaps why more…
Inspire @teaminspire
RT @revdrduke: T2: Anyone suffering from pain or discomfort from disease should receive #palliativecare It is appropriate whenever the pati…
Patient Empowerment @power4patients
RT @patientchat: T2: Who should receive palliative care? When is it appropriate? #patientchat https://t.co/HpMHxLS6NF
Becky Brandt RN @bbhomebody
@LucyAlexandria YES! Life altering condition! Great definition! #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @TRCWriter: A1: #palliativecare provides relief enough to let people have quality time with the people around them. It made a big QOL di…
ShereeseM, MS/MBA @ShereesePubHlth
T2 Those individuals whose lives and ADLs are being negatively impacted by symptoms of serious conditions should receive palliative care. #patientchat https://t.co/X2U7ETSnHe
lillian lake @llake
@patientchat A. B. It has definitely evolved in this area. Frankly, it started as a nuisance but has improved to be invaluable in negotiating the care of families and individuals afflicted with an illness. #patientchat #PalliativeCare
Jeremy Murphy @jeremypmurphy
@patientchat For example, I have a close relative with cancer who was told she had possibly only weeks left. She would be a prime candidate who could benefit from palliative/hospice care. #patientchat
Patient Chat @patientchat
Topic 3 (T3:) coming up...https://t.co/q24OWvXPPM #patientchat
Becky Brandt RN @bbhomebody
@ShereesePubHlth Great Homer Simpson Gif Shereese! 😀 #patientchat
Mighty Casey Quinlan @MightyCasey
RT @ShereesePubHlth: T2 Those individuals whose lives and ADLs are being negatively impacted by symptoms of serious conditions should recei…
Tricia Chaney @TRCWriter
A2: It's appropriate for serious illness. I think many ppl don't realize you can receive palliative care and continue your regular treatment. It's not end of life care, although it can be a component of that. #patientchat
lillian lake @llake
RT @bbhomebody: T2 Anyone who has a chronic or #intractablepain condition and needs assistance with pain management, psychological issues,…
Patient Chat @patientchat
T3: What services and benefits can palliative care specialists provide to chronic disease patients and their families? #patientchat https://t.co/tfeiT6d3ht
Rev. Dr. Duke @revdrduke
@bbhomebody @LucyAlexandria I totally agree! Great terminology, making clear it’s not just for terminal cases or end-of-life. #patientchat
Mighty Casey Quinlan @MightyCasey
RT @TRCWriter: A2: It's appropriate for serious illness. I think many ppl don't realize you can receive palliative care and continue your r…
lillian lake @llake
RT @patientchat: T2: Who should receive palliative care? When is it appropriate? #patientchat https://t.co/HpMHxLS6NF
Tami Dew Rich @bostonheartmom
T1 💞this whole-Person definition of #PalliativeCare @power4patients Kara #PatientChat With Millie my late MIL recovering after a fall w/fractures to L6 & C4, At first it was all about Recovery+Rehab Back + Neck brace were HELL; she could not eat... Quickly shifted to her #QOL
Mighty Casey Quinlan @MightyCasey
RT @patientchat: T3: What services and benefits can palliative care specialists provide to chronic disease patients and their families? #pa
lillian lake @llake
@patientchat A2 The families of those with a chronic illness - long-term or not. We think of the "patient" 1st, but the care should be overlapping. We're all caregivers, the needs shift. #patientchat
Lisa Davis Budzinski @lisadbudzinski
T2 Here’s a quick quiz: https://t.co/SVUbCTmT6l #patientchat
Mighty Casey Quinlan @MightyCasey
RT @lisadbudzinski: T2 Here’s a quick quiz: https://t.co/SVUbCTmT6l #patientchat https://t.co/qYH8norEYI
Rev. Dr. Duke @revdrduke
T3: I feel like I still have a lot to learn about what can be offered. Pain management, obviously, but I realize there’s so much more: physical therapy? occupational therapy? resources for emotional/mental/spiritual well-being? #patientchat #palliativecare
Lucy Watts MBE MUniv FRSA @LucyAlexandria
This! Often #palliativecare is seen as only end of life care, and synonymous with withdrawing treatment and "giving up". When actually, it can be used alongside active management or even curative treatment #PatientChat
Becky Brandt RN @bbhomebody
T3 Palliative services like Pain management, outpatient or home care services such as OT, PT, Nursing and CNA assistance for bathing, , and psych care if needed. #patientchat.
Lucy Watts MBE MUniv FRSA @LucyAlexandria
This! Often #palliativecare is seen as only end of life care, and synonymous with withdrawing treatment and "giving up". When actually, it can be used alongside active management or even curative treatment. great point @TRCWriter #PatientChat
Lisa Davis Budzinski @lisadbudzinski
This 👇! There needs to be more awareness on the difference between #PalliativeCare & #hospice end of life care #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @llake: @patientchat A2 The families of those with a chronic illness - long-term or not. We think of the "patient" 1st, but the care sho…
Jeremy Murphy @jeremypmurphy
RT @patientchat: T3: What services and benefits can palliative care specialists provide to chronic disease patients and their families? #pa
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @revdrduke: T3: I feel like I still have a lot to learn about what can be offered. Pain management, obviously, but I realize there’s so…
Patient Chat @patientchat
RT @sttrcancer: T2. In a #palliativecare summit, we learned that many patients don't know palliative care is available unless they are dyin…
Vera Rulon FAHIMA @vrulon
T3: #PalliativeCare services should include physical/pain mgt, psychological, social, spiritual, etc. in a team approach #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @bbhomebody: T3 Palliative services like Pain management, outpatient or home care services such as OT, PT, Nursing and CNA assistance f…
Tricia Chaney @TRCWriter
A3: Respecting patient wishes, values and goals and building treatment/symptom management around what makes life living for them. Giving caregivers tools to manage the bad times on their own. #patientchat
Penny Peters @8Penny8
RT @TRCWriter: A2: It's appropriate for serious illness. I think many ppl don't realize you can receive palliative care and continue your r…
Rev. Dr. Duke @revdrduke
Support for the family of the patient? Resources for medical decision-making? Help with setting up home environment for accessibility? What else? #patientchat #palliativecare
Jeremy Murphy @jeremypmurphy
RT @patientchat: Today's #patientchat was influenced by the recent passing of the Palliative Care and Hospice Education and Training Act (P…
Dr Kate Cushing @KateCushing2
RT @TRCWriter: A1: #palliativecare provides relief enough to let people have quality time with the people around them. It made a big QOL di…
Becky Brandt RN @bbhomebody
@lisadbudzinski Yes! For sure! I was a home care RN and NEVER used the word Palliative! Yet, I could have ordered it for most of my patients! Times are a'changin! #patientchat
Vera Rulon FAHIMA @vrulon
My walking gallery jacket that depicts experience with my mom during home hospice #palliativecare #patientchat https://t.co/rav4bamC4n
Patient Chat @patientchat
T4: What are the differences, if any, between palliative care, supportive care, and hospice care? #patientchat https://t.co/bqLcYiULPj
Lucy Watts MBE MUniv FRSA @LucyAlexandria
T5 pain management, symptom management, counselling and psychological support, Physiotherapy, occupational therapy, complementary therapy, psychological support for family members and respite for family members/carers #PatientChat
STTR Cancer @sttrcancer
T4. We’ve found that many patients have misconceptions surrounding #palliativecare, and associate it with dying. Palliative care is for any stage of disease and aims to improve quality of life through emotional support, pain management, ect. https://t.co/GMVzrp84mU #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: T4: What are the differences, if any, between palliative care, supportive care, and hospice care? #patientchat https://t.c…
Vera Rulon FAHIMA @vrulon
I'm the one on the right #PatientChat #PalliativeCare
lillian lake @llake
RT @LucyAlexandria: T5 pain management, symptom management, counselling and psychological support, Physiotherapy, occupational therapy, com…
Tami Dew Rich @bostonheartmom
@lisadbudzinski @patientchat T1 😞That’s just WRONG Lisa! It shows that the definition, use, phrase, impact of just how much #PalliativeCareHasAPRProblem #HowMightFixPalliativeCaresImageProblem #PatientChat Even @ #HebrewSrRehab /Newbridge the @harvardmed Teaching Hospital staff were uneducated abt its use
Patient Chat @patientchat
RT @LucyAlexandria: T5 pain management, symptom management, counselling and psychological support, Physiotherapy, occupational therapy, com…
Mighty Casey Quinlan @MightyCasey
RT @vrulon: My walking gallery jacket that depicts experience with my mom during home hospice #palliativecare #patientchat https://t.co/rav…
lillian lake @llake
@patientchat A3 A voice in the dark. A liason from what is to what can be. A bullhorn of information, directive, and compassion. #patientchat
Mighty Casey Quinlan @MightyCasey
RT @TRCWriter: A3: Respecting patient wishes, values and goals and building treatment/symptom management around what makes life living for…
Mighty Casey Quinlan @MightyCasey
RT @vrulon: T3: #PalliativeCare services should include physical/pain mgt, psychological, social, spiritual, etc. in a team approach #patie
Mighty Casey Quinlan @MightyCasey
RT @lisadbudzinski: This 👇! There needs to be more awareness on the difference between #PalliativeCare & #hospice end of life care #patient
Vera Rulon FAHIMA @vrulon
@patientchat T4: Not an expert but suspect that #PalliativeCare is not necessarily for those who are terminal #PatientChat Is supportive care the same as palliative?
Becky Brandt RN @bbhomebody
T4 Hospice generally means 1 year or less to live. But, supportive & palliative are almost identical IMO, and could/should be ordered for anyone who needs assistance. #patientchat
Rev. Dr. Duke @revdrduke
T4: Hospice care is usually for end-of-life patients who are no longer seeking treatment to mitigate their disease. #palliativecare is for *anyone* in need of palliation of symptoms. #patientchat
Suzie Siegel @SuzieSiegel
T3. #Palliativecare can include surgery, radiation and chemo if the intent is to make a cancer patient more comfortable. #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
T5 pt 2:Also provide spiritual support/chaplaincy, support for 'difficult conversations' between patient & family members & between pts & HCPs, documenting of wishes/advance care planning, putting in place legal documents (wills, ACP, Lasting Power of Attorney) #PatientChat
Lisa Davis Budzinski @lisadbudzinski
@bostonheartmom @patientchat @harvardmed Exactly ✨ It’s frustrating when trying to seek treatment for better quality of life & the centers that can help aren’t even educated correctly #patientchat
Rev. Dr. Duke @revdrduke
A patient can receive #palliativecare even while pursuing treatment to cure disease or extend life. #patientchat
Suzie Siegel @SuzieSiegel
RT @sttrcancer: T4. We’ve found that many patients have misconceptions surrounding #palliativecare, and associate it with dying. Palliative…
Rev. Dr. Duke @revdrduke
I honestly don’t know how supportive care differs from #palliativecare. #patientchat
Becky Brandt RN @bbhomebody
@sttrcancer So true! Palliative has been used in conjunction with Hospice for a long time. Here we go changing things for the better😀 #patientchat
Inspire @teaminspire
RT @bbhomebody: T4 Hospice generally means 1 year or less to live. But, supportive & palliative are almost identical IMO, and could/should…
Kevin Freiert @K_SalemOaks
@revdrduke #patientchat #palliativecare I learned recently about families having to go through grieving twice in cases where the patient is non-responsive for extended time.
Vera Rulon FAHIMA @vrulon
@revdrduke My question as well. Don't they refer to the same type of care? #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
T4 They are basically the same thing, under different titles. Hospice care for adults is mainly end of life care, whereas palliative & supportive care can go on for years, however in the UK this is changing & hospice care can be used earlier in patient's care #PatientChat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @bbhomebody: T4 Hospice generally means 1 year or less to live. But, supportive & palliative are almost identical IMO, and could/should…
Becky Brandt RN @bbhomebody
@lisadbudzinski @bostonheartmom @patientchat @harvardmed And even some doctors don't know the difference in terminology. But Insurance probably does! #patientchat
HealthSparq @HealthSparq
@sttrcancer So true - for a very long time I had only thought of #palliativecare this way - so glad to be learning even more every day! #PatientChat
Lisa Davis Budzinski @lisadbudzinski
T3 #PalliativeCare provides relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. #patientchat
HealthSparq @HealthSparq
RT @sttrcancer: T4. We’ve found that many patients have misconceptions surrounding #palliativecare, and associate it with dying. Palliative…
Mighty Casey Quinlan @MightyCasey
RT @bbhomebody: @lisadbudzinski @bostonheartmom @patientchat @harvardmed And even some doctors don't know the difference in terminology. B…
Kevin Freiert @K_SalemOaks
#patientchat @hcldr #hitsm @WTFix
Patient Chat @patientchat
T5: How can a patient ask or learn more about palliative care? HCPs: How can you approach patients about palliative care? #patientchat https://t.co/GPVGqmT4Om
lillian lake @llake
RT @patientchat: T4: What are the differences, if any, between palliative care, supportive care, and hospice care? #patientchat https://t.c…
Dr. Holly Harris @bluelobsta
RT @sttrcancer: T4. We’ve found that many patients have misconceptions surrounding #palliativecare, and associate it with dying. Palliative…
Vera Rulon FAHIMA @vrulon
@LucyAlexandria That's interesting. Are the terms converging then? #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: T5: How can a patient ask or learn more about palliative care? HCPs: How can you approach patients about palliative care?…
Mighty Casey Quinlan @MightyCasey
RT @lisadbudzinski: T3 #PalliativeCare provides relief from the symptoms and stress of a serious illness. The goal is to improve quality of…
Lucy Watts MBE MUniv FRSA @LucyAlexandria
T4 .2: In the UK in children's hospices & for some young adults who have access to young adult hospice care/services, the hospice support can extend for years from diagnosis through end of life, I am supported by a young adult hospice & have for over 7 years #PatientChat
Matthew Katz, MD @subatomicdoc
RT @SuzieSiegel: T3. #Palliativecare can include surgery, radiation and chemo if the intent is to make a cancer patient more comfortable. #…
STTR Cancer @sttrcancer
T5. The @theNCI offers excellent resources on #palliativecare (https://t.co/ciPmv1Vkr2) which are informative for both #patients and HCPs. We need to create more open dialogue between patients and HCPs surrounding palliative care to increase education and awareness. #patientchat
Lisa Davis Budzinski @lisadbudzinski
@revdrduke @bbhomebody @LucyAlexandria That’s still the problem nowadays. The misconception that it’s only for end of life conditions #patientchat
EjPB @EjPB2
RT @ShereesePubHlth: T1 Often #pallativecare gets confused w/ other types of care, like #hospice. But it is actually the management of symp…
Tami Dew Rich @bostonheartmom
T3 Palliative Care Specialists can help people develop realistic achievable goals around their #ADLs #QOL in balance with limiting factors such as #SDOH #PatientChat Although some say PC is “only for serious illness” it’s been useful in my son’s postOp Open♥️Surgical care #CHD
Vera Rulon FAHIMA @vrulon
@revdrduke @LucyAlexandria just mentioned that #hospice care is now starting to be practiced at any time during an illness in the UK... are the terms converging? #patientchat #PalliativeCare
Becky Brandt RN @bbhomebody
T5 Patients/caregivers can ask physicians for a Palliative care order. Also, make sure it's coded correctly in the chart so insurers understand the order & pay for it. #patientchat
Kevin Freiert @K_SalemOaks
@vrulon @LucyAlexandria An important question is how health insurers are defining the terms. #patientchat #palliativecare
Lucy Watts MBE MUniv FRSA @LucyAlexandria
@vrulon They're used distinctly in many ways, but can often be talking about the same thing & so sometimes the terms are used interchangeably. Before hospice care was care "in a hospice" but now we have hospice-at-home & thus it can be used synonymously, albeit some disagree #PatientChat
Rev. Dr. Duke @revdrduke
T5: A patient can learn more about #palliativecare through online research (as an e-patient, I always start with that!) and of course by asking her doctor. Patient navigators would also be a great resource. #patientchat
Suzie Siegel @SuzieSiegel
RT @sttrcancer: T5. The @theNCI offers excellent resources on #palliativecare (https://t.co/ciPmv1Vkr2) which are informative for both #pat
Lisa Davis Budzinski @lisadbudzinski
RT @bbhomebody: T3 Palliative services like Pain management, outpatient or home care services such as OT, PT, Nursing and CNA assistance f…
Suzie Siegel @SuzieSiegel
RT @revdrduke: T5: A patient can learn more about #palliativecare through online research (as an e-patient, I always start with that!) and…
Rev. Dr. Duke @revdrduke
@vrulon @LucyAlexandria I have seen this in the U.S. occasionally as well. People intentionally going into hospice care for only a brief time, for extra support and care during intense recovery or rehabilitation. Especially when there isn’t good home support. #patientchat
Vera Rulon FAHIMA @vrulon
@LucyAlexandria Yes... my mother was in #homehospice I'm not so sure about terms as it's the care that people who need it that is most important #patientchat #palliativecare
lillian lake @llake
@patientchat @jeremypmurphy A5 Carers get caught up in "caring" & resistant to service - as though its a sign of failure or "the end".Community & healthcare can step up. Carers & patients can't know everything. Approach should be compassionate & not judgmental - allow for a feeling of success. #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
T5 The internet is great for information-sharing, as are other patients, however HCPs should be mentioning it to patients. Patients mustn't be afraid to ask for more info on palliative care or request a referral to palliative care/hospice services #PatientChat
Dolores Richards @joyfulkira
Hi Everyone! Jumping into the convo #PatientChat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @revdrduke: @vrulon @LucyAlexandria I have seen this in the U.S. occasionally as well. People intentionally going into hospice care for…
Vera Rulon FAHIMA @vrulon
T5: Our local health and social services were an excellent resource #palliativecare #patientchat
Tami Dew Rich @bostonheartmom
T2 YES @sttrcancer THIS! Coming up with operational definitions of #PalliativeCare & teaching ALL front line Pt Care/Pt Facing staff what it can look like will go a looonnng way to both fixing its image problem and helping MANY MORE People who can benefit from it #PatientChat
Rev. Dr. Duke @revdrduke
Yep! TBH, I still cringe when I hear that my #chemo is #palliative because I reflexively associate that with end-of-life/nothing more can be done, whereas I hope my treatments are extending my life. #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @revdrduke: T5: A patient can learn more about #palliativecare through online research (as an e-patient, I always start with that!) and…
Suzie Siegel @SuzieSiegel
T5. Because #palliativecare is a broad term, you also can ask for specific services, such as: Do you offer pet therapy? Is massage available? Do you have a pain management team? It's also good to ask about services earlier, if possible. #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
In the UK we have the fantastic charities @hospiceuk & @Tog4ShortLives who can signpost to sources of support #PatientChat
Patient Chat @patientchat
BONUS: As empowered patients and care partners, what can we do to move Palliative Care and Hospice Education and Training Act (PCHETA) along? #patientchat https://t.co/vcNpQjMCSf
Lisa Davis Budzinski @lisadbudzinski
@revdrduke And that in itself is stressful to a patient ✨ #patientchat
Patient Empowerment @power4patients
RT @patientchat: BONUS: As empowered patients and care partners, what can we do to move Palliative Care and Hospice Education and Training…
Inspire @teaminspire
RT @revdrduke: T5: A patient can learn more about #palliativecare through online research (as an e-patient, I always start with that!) and…
Vera Rulon FAHIMA @vrulon
@lisadbudzinski @revdrduke I so agree... #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: BONUS: As empowered patients and care partners, what can we do to move Palliative Care and Hospice Education and Training…
Vera Rulon FAHIMA @vrulon
@patientchat BONUS: Full disclosure - I haven't read PCHETA - I'd like to read it 1st before answering this question... #patientchat
Lisa Davis Budzinski @lisadbudzinski
T5 Here’s a printable that can be given to Drs, patients, caretakers, family: https://t.co/a8WW5sSeGG #patientchat
Vera Rulon FAHIMA @vrulon
@patientchat Although - education is paramount in #palliativecare #patientchat
Mighty Casey Quinlan @MightyCasey
RT @lisadbudzinski: T5 Here’s a printable that can be given to Drs, patients, caretakers, family: https://t.co/a8WW5sSeGG #patientchat http…
Mighty Casey Quinlan @MightyCasey
RT @patientchat: BONUS: As empowered patients and care partners, what can we do to move Palliative Care and Hospice Education and Training…
Mighty Casey Quinlan @MightyCasey
RT @SuzieSiegel: T5. Because #palliativecare is a broad term, you also can ask for specific services, such as: Do you offer pet therapy? Is…
Dolores Richards @joyfulkira
Care with Dignity #PalliativeCare #PatientChat
Becky Brandt RN @bbhomebody
Bonus-Even great docs and nurses need education sometimes. It's ok to gently direct them & ask for EXACTLY what you need. Check with your insurance & Bring teaching materials to help. And direct them to websites etc. #patientchat
lillian lake @llake
RT @revdrduke: Yep! TBH, I still cringe when I hear that my #chemo is #palliative because I reflexively associate that with end-of-life/not…
Patient Chat @patientchat
Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat
Becky Brandt RN @bbhomebody
@lisadbudzinski Great reference from my awesome partner @lisadbudzinski #patientchat
lillian lake @llake
RT @bostonheartmom: T2 YES @sttrcancer THIS! Coming up with operational definitions of #PalliativeCare & teaching ALL front line Pt Care/Pt…
Tami Dew Rich @bostonheartmom
RT @patientchat: BONUS: As empowered patients and care partners, what can we do to move Palliative Care and Hospice Education and Training…
lillian lake @llake
@bostonheartmom @sttrcancer Agree wholeheartedly. #patientchat
lillian lake @llake
RT @bostonheartmom: T3 Palliative Care Specialists can help people develop realistic achievable goals around their #ADLs #QOL in balance wi…
lillian lake @llake
RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT…
Tami Dew Rich @bostonheartmom
RT @LucyAlexandria: T5 The internet is great for information-sharing, as are other patients, however HCPs should be mentioning it to patien…
lillian lake @llake
RT @patientchat: BONUS: As empowered patients and care partners, what can we do to move Palliative Care and Hospice Education and Training…
Tami Dew Rich @bostonheartmom
RT @LucyAlexandria: In the UK we have the fantastic charities @hospiceuk & @Tog4ShortLives who can signpost to sources of support #PatientC
Vera Rulon FAHIMA @vrulon
CT: When people are in agony, no matter at what stage or reason related to their illness, #PalliativeCare can make the difference in #QualityOfLife #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT…
Lucy Watts MBE MUniv FRSA @LucyAlexandria
CT: Thanks for a great chat. Nice to be in the company of so many like-minded individuals. Learnt a bit more about how #palliativecare & #hospicecare in the UK differs from the UK & enjoyed reading everyone's tweets. Thanks to @patientchat for your running this great #PatientChat
lillian lake @llake
RT @ShereesePubHlth: T2 Those individuals whose lives and ADLs are being negatively impacted by symptoms of serious conditions should recei…
Becky Brandt RN @bbhomebody
CT Great education today about Palliative vs. Hospice. It's ok to ask for what we need and direct our own care-or have a caregiver assist. Not all healthcare workers know specifics about Palliative care, so we can Teach them! #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
CT: Thanks for a great chat. Nice to be in the company of so many like-minded individuals. Learnt a bit more about how #palliativecare & #hospicecare in the US differs from the UK & enjoyed reading everyone's tweets. Thanks to @patientchat for your running this great #PatientChat
Lisa Davis Budzinski @lisadbudzinski
CT: #PalliativeCare is different from hospice. Hospice is end of life care. Palliative care is for a better quality of life. So #EOL is different than #QOL in terms of care✨ #patientchat
Vera Rulon FAHIMA @vrulon
Thank you for the great #patientchat on an important topic: #PalliativeCare
Becky Brandt RN @bbhomebody
Kudos! 👇👇👇 #patientchat
Suzie Siegel @SuzieSiegel
CT: I should make up a list of all the services & other things that "my" hospitals offer so that I don't forget. Their "palliative" teams may have a narrower focus. I'm also doing this for my home b/c when I'm in pain I may forget. #patientchat
Becky Brandt RN @bbhomebody
Have a beautiful day everyone! #patientchat https://t.co/mdk4LKfmK0
STTR Cancer @sttrcancer
CT: Thank you @PatientChat for hosting such a wonderful discussion #PatientChat
Patient Chat @patientchat
#patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime
Patient Chat @patientchat
Thanks to all for joining our Empowered #patientchat. I will tweet out the transcript about 15 minutes past the hour
Lisa Davis Budzinski @lisadbudzinski
Everyone have a wonderful weekend no matter where you are ✨ #patientchat
Becky Brandt RN @bbhomebody
@SuzieSiegel Excellent point! Pain makes me forgetful too! #patientchat
Joe Babaian @JoeBabaian
RT @revdrduke: T1: Palliative Care is the management of pain and other disease symptoms. It is not only for end-of-life but is for any stag…
Patient Empowerment @power4patients
RT @sttrcancer: T4. We’ve found that many patients have misconceptions surrounding #palliativecare, and associate it with dying. Palliative…
lillian lake @llake
RT @sttrcancer: T4. We’ve found that many patients have misconceptions surrounding #palliativecare, and associate it with dying. Palliative…
Patient Chat @patientchat
The next Empowered #patientchat will be Friday, September 7th https://t.co/fbCpGxhRhG Hope to see you there!
Patient Chat @patientchat
Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: The next Empowered #patientchat will be Friday, September 7th https://t.co/fbCpGxhRhG Hope to see you there!
Patient Chat @patientchat
@sttrcancer So glad you could join! #patientchat
Inspire @teaminspire
#patientchat
Patient Empowerment @power4patients
RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Parijat Deshpande @ParijatDesh
The worst advice anyone can give a couple going through #infertility, #fertilitytreatment or #highriskpregnancy is, "You have no control". It is unhelpful & just plain wrong. On this episode, I share with you exactly why and & what to do. https://t.co/W15bIb2j3K #patientchat https://t.co/l3WjOcLNub
Inspire @teaminspire
Thank you everyone for the great #patientchat today. Have a great weekend!
Patient Chat @patientchat
@beth_morton We missed you! Hopefully you ca make the next one on Sept. 7th! #patientchat
Terri A Lewis, PhD @tal7291
RT @lisadbudzinski: This 👇! There needs to be more awareness on the difference between #PalliativeCare & #hospice end of life care #patient
Richard Kreis @kreisr1
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of…
Tami Dew Rich @bostonheartmom
CT Gr8 #PatientChat I’ve learned so much! I know there’s a separate #PalliativeCareChat HT @rfberry but since my own #CaregiverX with palli care is limited, I like how this sort of overlapped (@Twitter #Healthcare #hcldr #s4pm #PtRevolution chats are where I learn the MOST😉)
Rev. Dr. Duke @revdrduke
CT: Even though I know that #palliativecare is for any stage of treatment, I still tend to reflexively associate it with end-of-life. I’m grateful for patients, advocates, caregivers, and others for helping me learn and grow in my understanding. #patientchat
Patient Health @MD4U
RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Clara Rose Crocker @ClaraRose23
RT @revdrduke: T1: Palliative Care is the management of pain and other disease symptoms. It is not only for end-of-life but is for any stag…
#DigitalHealth Futurist 👨‍💻 @ManeeshJuneja
RT @TRCWriter: A2: It's appropriate for serious illness. I think many ppl don't realize you can receive palliative care and continue your r…
Jeremy Murphy @jeremypmurphy
RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
#patientchat content from Twitter.