Bill Novelli, C-TAC, and A Fresh Look At Palliative Care

Posted on | June 23, 2011 | Comments Off on Bill Novelli, C-TAC, and A Fresh Look At Palliative Care

Bill Novelli, professor in the McDonough School of Business at Georgetown University, and former CEO of AARP, recently reflected on an article by Atul Gawande, M.D. in the New Yorker (1) on our system of care for Americans with advanced disease. Novelli agreed with Gawande that our system has “utterly failed” on a number of levels including “communicating with patients with advanced illness, holding truthful (often difficult) conversations, and working within a health system that, despite its many strengths, still lags behind in the way it cares for people with illnesses that have reached advanced stages.”(2)
He continued, “Evidence shows that patients do not receive care that reflects their values and preferences. Fragmented care systems; inadequately treated physical and emotional distress; heavy strain on caregivers and support systems; and poor communication among doctors, patients, and families all are typical.”(2)

To respond to these challenges, Novelli has helped organize key individuals and organizations to form the Coalition to Transform Advanced Care (C-TAC) “to transform the care of people with advanced illness by enhancing provider capacity, changing the health delivery system, empowering consumers, and improving public and private policies.” (3)

Is the time right to address these challenges. Novelli believes it is. The combination of aging complexity, “fiesty” Boomer expectations, and the focus on debt and deficit all are enablers of change. Beyond this, recent research suggests that most Americans (apparently not scared off by the “death panel” nonsense from 2009) are eager to engage in planning and discussion around advanced disease and end-of-life decicions. (4, 5)

Over the past two years, there have been a number of consumer studies which together reflect the desire and need of families and individuals to be educated and supported in the areas of advanced disease care and end-of -life decisions.(5,6,7,8,9) A few points from one study (5) illustrate how complex and sensitive this challenge remains.

On language: (% “very familiar/somewhat familiar” with these terms)
Palliative Care – 24%
End-of-Life Care – 64%
Hospice Care – 86%

On priorities:
“It is more important to enhance the quality of life for seriously ill patients, even if it means a shorter life” (71% ) or “It is more important to extend the life of seriously ill patients through every medical intervention possible.” (23%)

US Performance (% rating 7-10 on a scale of 10):
Reduce pain/suffering 56%
Patient control 55%
Manage family grieving 40%
Avoid costly/drawn-out treatments 28%

Major concerns: (% rating 7 – 10 on a scale of 10)

Cost 79%
Inadequate Information 73%
Burdening Family 72%
Emotionally/Spiritually Unprepared 48%

Trust As Information Source: (% rating 7 – 10 on a scale of 10)

Doctor/Health Professional 76%
Family/Friend 69%
Religous Leader 46%
Social Service Agency 39%
Insurer 35%
Media 17%
Political Leader 9%

Experience/Preparation:

Have you had personal experience with palliative care, end-of-life care or hospice? (63% YES)
How prepared were you? (24% VERY, 26% SOMEWHAT)

More Openness:
Should there be more public debate/discussion about these issues? (78% YES)

As both Mr. Novelli and Dr. Gawande suggest, we face real challenges in health care and seem to be of a mind to take them on, whether they be cost, quality or control. For policy around end-of-life care, they are all of the above.

For Health Commentary, I’m Mike Magee.

Disclosure: Mike Magee MD is a member of C-TAC.

References:

1. Gawande A. Letting Go. The New Yorker. August 2, 2010. http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande

2. Novelli B. A New Direction For Palliative Care. AAMC Reporter. June, 2011. https://www.aamc.org/newsroom/reporter/june2011/250906/viewpoint.html
3. Coalition To Transform Advanced Care (C-TAC). http://www.americanbar.org/content/dam/aba/migrated/aging/PublicDocuments/1_21_cs_health_attach_1.authcheckdam.pdf

4. Rutenberg J and Calmes J. False Death Panel Rumor Has Some Familiar Roots. Augst 13, 2009. NYT. http://www.nytimes.com/2009/08/14/health/policy/14panel.html

5. National Journal/Regency Foundation. Living Well At The End Of Life Poll. February 16, 2010.
http://bit.ly/kRFALj

6. NCOA. Reforming Health Care: Americans Speak Out About Chronic Conditions and Challenges of Self Care. June 19, 2009. http://bit.ly/iyyQFj

7. The Campaign For Better Care. April 1, 2010. Lake Research Partners.http://bit.ly/kdXlQo

8. Making Your Wishes Known. 2011. http://www.makingyourwishesknown.com/

9. American Cancer Society. Why Do We Need Advance Directives? http://www.cancer.org/acs/groups/cid/documents/webcontent/002016-pdf.pdf