Wednesday, May 9, 2018

Palliative Care- When and Why - May 2018


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!
This first question also began a discussion regarding the term "Palliative care". Some felt that the term may actually turn patients off from getting the care they need. Some centers use the term Supportive care. Sinclair responded "There are lots of debate inside and outside the palliative care community about finding the best name. Ultimately it comes down to organizational/community culture, and making sure the clinicians feel comfortable introducing the concept as concurrent, not either/or".

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?

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



Resources
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

Friday, May 4, 2018

May 9th Chat: Palliative Care - When and Why



This month we will return to a topic we last covered in 2015 - Palliative Care. We will once again be joined by Christian Sinclair (@ctsinclair), a palliative and hospice medical care physician, editor of Pallimed and founder of the #hpm community on Twitter.

More people are familiar with palliative care now, although there is still confusion as to what palliative care is versus hospice. Did you know that some are providing palliative care through Telemedicine? Did you know that ASCO issued a guideline on the Integration of Palliative Care on Standard Oncology Care? Join us as we discuss these topics.

T1: What do you think of when you hear the term "palliative care"? What does it mean to you?

T2: What is the technical definition of "palliative care"? How is it related to yet different from hospice care? Is there still a lot of confusion between the two?

T3: 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?

T4: 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?

T5: What are medical and advocacy organizations doing to promote palliative care for cancer patients? How can patients advocate for themselves?

T6: 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?

You can learn more about palliative care by checking these resources:

See you at 9pm ET ( 8pm CT, 6pm PT)  on May 9, 2018!

Dee
#gyncsm co-founder