Twitter & Understanding Shared Decision Making

In Twitter dialogues about end of life care and other areas of medical ethics, I tend to eavesdrop, rather than participate. There are quite a lot of such dialogues and they attract a dedicated group of medical carers whose exchanges are moving in what they reveal of the dedication to serving the best interests of patients.

“Medicine exists to serve the goals & needs of people, or at least it should,” the palliative care physician Diane E. Meier recently tweeted. “Starting with what matters to the patient is key.”

I often find the chatters to be more interested than interesting, but sometimes a chat provides a view into the real value of social network in medicine. That was especially true recently in a Twitter dialogue using the hashtag #SDMchat, the acronym for shared decision making, a medical model foundational to the palliative care specialty.

As with so much on Twitter, you need to muddle through foreign acronyms, abbreviations, incomplete sentences and head-scratching syntax. The upside is, even at its worst, Twitter keeps even the verbose to 140 characters. Twitter it is blissfully free of monologues. And, as evidenced by the recent #SDMchat, 140 well-used characters can be powerfully educational.

Dr. Meier (@DianeEMeier), director of the Center to Advance Palliative Care, collaborated in the chat with Renee Berry (@rfberry), palliative care advocate and digital media guru, and Martha Hayward of The Conversation Project (@ConvoProject).

Understanding and common language are crucial in ethical thinking, so the exchange distinguishing hospice care from palliative care was especially useful. As Meier tweeted, “All hospice is #palliative care, but all palliative care is not hospice.”

Why does this distinction matter? Consider that many physicians do not know the difference. “I think it's important to remember, you may have to remind your doctor that palliative care is for anyone with serious illness,” Berry tweeted. 

“Important for people to know that many docs do not know diff betw hospice and #palliative care- u have to educate them!” Meier added, and later:  “In #palliative care, the visit starts w/ ‘Tell me about yourself. Your family.’ The real issues bubble to the top” and 

“(Palliative is) “person centered - Don't ask what's the matter with me, ask what matters to me!” 

That last one got retweeted like crazy.

The #SDMchat produced many other tweets that packed a lot into 140 or fewer characters. Here’s a sample:

“Hospice helps you live well at end-of-life. Palliative care helps you live well during any illness.” (@AskCrossroads)

 “Hospice care IS palliative care, it's just that a life expectancy is measured in months, not years.” (@JenMarsh2)

From an exchange defining shared decision making:

”Comfort/palliation begins with patients preferences.” (ConvoProject)

“Palliative care specialists demonstrate leadership in shared decision making- empowering patients faced w/complex care decisions.” (@rfberry)

“#Palliative care folks are leaders in SDM-As an Internist I've learnt my words frm them2practice real patient centered care.” (@thinkalot)

“Shared decision making is a skill that takes practice, involves great attention to active listening & being present.” (@rfberry)

“SDM in palliative care can help everyone stop guessing and start discussing!” (@IMDFoundation)

“SDM is best chance of "no regrets" by dying person and the survivors of loved ones.” (@ChrisAug89)

And best resources for people considering palliative care:

“Talk to your family first. Use our ‘Starter Kit’ to start these convos” and “ Next, talk to your doctor. Use our guide” (@ConvoProject)

“Ira Byock's latest book "The Best Care Possible" -- great insight on shared decision making & #palliative care” (@IMDFoundation)

“GetPalliative is one of my favorite resources for anyone considering palliative care.” (@rfberry)

“for ppl w/cancer @ASCO's @CancerDotNet has doc-approved info on palliative care” (AmandaBinDC)

“Obsessive attention to language in palliative care is crucial to meeting people where they are.” (@rfberry)

Read the full transcript here.