Transforming Care & Communication

Jennifer Mack and Thomas Smith give me hope. I like that in a physician.

That they pull it off in a piece with this in its title --  "Reasons Why Physicians Do Not Have Discussions About Poor Prognosis" --  might be a medical miracle.

Mack and Smith give me hope that oncologists can be as adept with good communication as they are at titrating chemo, and that maybe we're ready for a national conversation about how we die.

Conveniently enough, such a conversation begins with the Committee on Transforming End-of-Life Care when its members meet Feb. 20-21 in Washington, DC.  This Institute of Medicine committee is a follow-up to one that produced the 1997 report Approaching Death: Improving Care at the End of Life.

Mack is an oncologist at the Dana-Farber Cancer Institute. Smith is director of palliative care at Johns Hopkins. In the Journal of Clinical Oncology from August 2012, the authors attempt to debunk excuses for not having hard conversations.

To  "it will make people depressed," the authors say: "Incorrect. In fact, giving patients honest information may allow them and their caregivers to cope with illness better."

They proceed to address perhaps understandable but defeating physician thinking that:

• "involvement in hospice or palliative care will reduce survival"
• "we do not really know a patient's prognosis"
• "talking about prognosis is not culturally appropriate"
• "we do not like to have these discussions and they are hard on us"
• and why confronting these "excuses" matters  (in short, because it's in the patient's best interest)

The one that resonated with me was their answer to  "it will take away hope." 

"Incorrect," say Mack and Smith. "In fact, evidence suggests that hope is maintained even with truthful discussions that teach the patient there is no chance of cure. ... Hope was increased or at least preserved when parents of pediatric (cancer) patients were given prognostic information, even if the news was bad."

The Community Ethics Committee, the group behind this blog, is completing a report to the Harvard Ethics Leadership Group on the intractable disputes in end-of-life care that sometimes emerge between caregivers and patients/families when further curative or therapeutic treatment is seen as futile.

Distrust and loss of hope are central to such disputes, especially amid differing cultural and religious values. At such a time, communication skills are crucial.

Maybe what Mack and Smith are on to here is the idea that, even with bad news, not talking about it only makes it worse. And maybe what transforming end-of-life care requires is open and ongoing dialogue -- especially the difficult subjects. 

I know from experience that some physicians are amazing communicators -- great listeners, empathic carers, tolerant of my need for multiple explanations, and able to respect values that are not their own. Not all physicians have these skills. For them, a team approach to care, with nurses, ethicists and chaplains trained and empowered, is maybe the only way to ensure good communication and care for all patients.

Through the end of January, the Committee on Transforming End-of-Life care is taking feedback in preparation for its first meeting. One suggestion I've seen is from Dr. Christian Sinclair, who says the committee lacks geographic diversity and hospice and non-academic palliative representation. See pallimed.org

What are your priorities for transforming end-of-life care?