For this month's chat, Palliative Care - When and Why, we welcomed guest Christian Sinclair (@ctsinclair), a palliative care and hospice physician, editor of Pallimed and founder of the #hpm community on Twitter. Fifty-four participants made over 2.3 million impressions during the hour chat. You may find more analytics here and the transcript here.
Here is a sampling of responses. Please scroll down for Resources.
What do you think of when you hear the term "palliative care"? What does it mean to you?
- PalliativeCare is symptom management offering emotional support, to patient and family. At any time during Cancer dx not just eol.
- Living life on your terms with the help of team of healthcare professionals who support the patient and family
- Palliative care-I think of a critical piece of overall care during serious illness, pain, and end of life.
- I think of palliative care as an opportunity for someone to receive whatever support (pain management, counseling, home care, accessing info/resources, etc.) they may need when progressing through a health problem that may be life limiting #gyncsm
- Palliative care should be available at any age and any stage. The goal is support.
- We #hpm docs spend quite a bit of time clarifying perceptions of the field (ie. its not just end of life care). Our #PalliativeCare thermometer highlights the domains of a person's care that may be of importance to them! #Palliative Care is whole person care!
When do cancer patients tend to get referred to a palliative care specialist? Do you find this to be a tricky conversation? Patients - Did anyone on your care team discuss palliative care with you?
- ASCO recommends PalliativeCare is offered within 8 weeks after dx
- We are seeing more family and patient-initiated #pallaitive care referrals. As they realize they can have more support, they are starting to ask for it and our oncologists are open to collaborating with us. Caveat: I am in an academic med center in a metro area.
- Patients with advanced cancer should be referred to #pallativeCare early and it should be an integral part of treatment, not just something added on near the end of life
- I see them referred too late. Palliative care is still associated with end of life & have been told “they aren’t ready for that”. Who’s not ready for patient centered care that views the whole person not the illness & manages all symptoms physical, emotional, etc.?!
Why is knowledge of and
access to palliative care throughout cancer treatment important? Does
Medicare/Insurance cover palliative care? Are there specialists in rural areas?
- For this chat I found this @ASCO Connection article : Telemedicine has been used for those in rural areas.https://connection.asco.org/blogs/telemedicine-palliative-and-supportive-care-continuing-conversation
- Looking at symptom management by a specialist in the field offers a complementary approach to managing the disease itself by treating the patient as a whole being. Services are covered but often require copay. Rural areas often lack service
- Medicare covers PalliativeCare for symptom management in some extent Improving Quality of Life and prolong survival.
- #Telehealth show great promise is rural settings, along w/ patients' willingness to engage. Telehealth reduce travel needs, removing physical and financial burdens associated with travel. Telehealth utilization for #pallativeCare is emerging rapidly
What are medical and
advocacy organizations doing to promote palliative care for cancer patients?
How can patients advocate for themselves?
- NCI, NHPCO. SWHPN. GetPalliativeCare. org Be more proactive
- I do appreciate the statement from @SGO_org on the importance of #palliative care in #gyncsm #openaccess https://www.sgo.org/wp-content/uploads/2015/05/Palliative-Care-published-May-2015-Gyn-Onc.pdf
- Random, but I tell patients to grab one of every brochure at their Onc office and look through to find the things you might need and then ask with the brochure. It’s crazy how many supports exist that I’ve only found out about that way. They always make a brochure!
What do
you wish you knew about palliative care at the beginning of your experience
with a cancer-related diagnosis? For those who have worked with a palliative
care specialist, what was most helpful? most challenging?
- I think more and more patients appear to be more empowered to not just get the latest greatest cutting edge research treatment, but to make sure they get all their needs met. Aiming for whole person care. To be fair though, advocating for yourself is really hard work
- Considering how much time we have to spend talking through acute issues with my GynOnc since I’ve been terminal, it’s not surprising we don’t talk about palliative care. I’m focused on getting more Oncs to have this talk when cases aren’t as complicated.
- I wish I had known when my dad was diagnosed that pts in #palliativecare can still go to PT and OT to help them gain the strength to return home for EOL. It would have saved so much pain for him while he tried to get strong enough to return home.
If you are a caregiver or patient you may continue this discussion online on the Smart Patients platform at https://www.smartpatients.com/gyncsm .
Be sure to check our resources below.
Join us next month on June 9th for Let's Discuss Value of Care.
See you then.
Dee
#gyncsm Co-founder
Perceptions of #palliative care by people with adv cancer and their caregivers
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4938707/
Association between a name change from palliative to supportive care and the timing of patient referrals at a comprehensive cancer center.
https://www.ncbi.nlm.nih.gov/pubmed/21212438
Predictors of high symptom burden in gynecologic oncology outpatients: who should be referred to outpatient palliative care?
https://www.ncbi.nlm.nih.gov/pubmed/24472408
Practice Patterns, Attitudes, and Barriers to Palliative Care Consultation by Gynecologic Oncologists. https://www.ncbi.nlm.nih.gov/pubmed/28783424
Economics of Palliative Care for Hospitalized Adults With Serious Illness https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2678833?utm_source=twitter&utm_campaign=content-shareicons&utm_content=article_engagement&utm_medium=social&utm_term=050818&redirect=true#.WvJSZ-FbZeU.twitter
Palliative Care in the Global Setting Resource-Stratified Guideline
https://www.asco.org/practice-guidelines/quality-guidelines/guidelines/supportive-care-and-treatment-related-issues?et_cid=40284775&et_rid=977394059&linkid=Palliative+Care+in+the+Global+Setting%3a+A+Resource-Stratified+Guideline_link#/31016
@theNCI Palliative Care in Cancer Care
https://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet
@Cancerdotnet Caring for the symptoms of cancer and its treatment
https://www.cancer.net/navigating-cancer-care/how-cancer-treated/palliative-care/caring-symptoms-cancer-and-its-treatment
@SGO_org
https://www.sgo.org/newsroom/position-statements-2/delivery-of-palliative-care-services/
Dana Farber
How Does Palliative Care Help Cancer Patients? | Dana-Farber ...
ASCO Connection: Telemedicine in Palliative and Supportive Care: A Continuing Conversation
https://connection.asco.org/blogs/telemedicine-palliative-and-supportive-care-continuing-conversation
Links to Palliative Care Graphics Shared:
https://twitter.com/skochb/status/994387131161366528
https://twitter.com/IshwariaMD/status/994387821770297344
https://twitter.com/IshwariaMD/status/994388792747360256
https://twitter.com/skochb/status/994387131161366528
https://twitter.com/skochb/status/994387131161366528
httpwitter.com/skochb/status/994387131161366528
