August 20, 2009 National Press Club FACT VERSUS FICTION: KEY ISSUES IN HEALTH REFORM FACT VERSUS FICTION: KEY ISSUES IN HEALTH REFORM

Christine Cassel, MD President American Board of Internal Medicine

Patient Centered? What Do Patients with Serious Illness Want? Pain and symptom control Avoid painful prolongation of the dying process Achieve a sense of control and dignity Relieve burdens on family Strengthen relationships with loved ones Singer et al. JAMA 1999;281(2):

And What They Get: Suffering in U.S. Hospitals National Data on the Experience of Advanced Illness in 5 Tertiary Care Teaching Hospitals 9,000 patients with life-threatening illness, 50% died within six months of entry Half of patients had moderate-severe pain >50% of last three days of life. 38% of those who died spent >10 days in ICU, in coma, or on a ventilator. JAMA 1995;274:

Patient Centered? What Do Family Caregivers Want? Study of 475 family members 1-2 years after bereavement Loved one’s wishes honored Inclusion in decision processes Support/assistance at home Practical help (transportation, medicines, equipment) Personal care needs (bathing, feeding, toileting) Honest information 24/7 access To be listened to Privacy To be remembered and contacted after the death Tolle et al. Oregon report card

And What They Get: Family Satisfaction with Hospitals as the Last Place of Care 2000 Mortality follow-back survey, n=1578 decedents Not enough contact with MD: 78% Not enough emotional support (patient): 51% Not enough information about what to expect with the the dying process: 50% Not enough emotional support (family): 38% Not enough help with pain: 19% Teno et al. JAMA 2004;291:88-93.

Medicare Spending by Sector in Last Two Years of Life Source: The Dartmouth Atlas of Health Care 2008 Available at:

Copyright restrictions may apply. Zhang, B. et al. Arch Intern Med 2009;169: Association between cost and quality of death in the final week of life (adjusted P =.006)

Advance Directive Advance health care directives, also known as advance directives or advance decisions, are instructions given by individuals specifying what actions should be taken for their health in the event that they are no longer able to make decisions due to illness or incapacity. A living will is one form of advance directive, leaving instructions for treatment. Another form authorizes a specific type of power of attorney or health care proxy, where someone is appointed by the individual to make decisions on their behalf when they are incapacitated. People may also have a combination of both. -- Wikipedia

Copyright restrictions may apply. Wright, A. A. et al. JAMA 2008;300: Medical Care Received in the Last Week of Life by End-of-Life Discussion

Policy – House Tri-Committee Bill Provides Medicare coverage for voluntary Advance Care Planning Consultations at least every five years. Requires quality measures in PQRI on end-of- life care and advanced care planning. Other legislative proposals not included are related to education, workforce, quality and research.

Diane E. Meier, MD Director, Center to Advance Palliative Care Mount Sinai School of Medicine

A Tale of Two Patients: Elaine G. and Judy F. Diane E. Meier, MD Professor Mount Sinai School of Medicine August 20, 2009

Elaine G., 82 year old nursing home resident with dementia and recurrent pneumonia Business as usual Multiple admissions for recurrent pneumonia No prior evidence of her wishes Prolonged critical care Hospital complications Pain Angry, guilty adult son

Judy F., 65 year old with metastatic lung cancer seeking guidance Diagnosed age 59 No smoking history Given prognosis of 6-12 months With expert oncologist, lived 6 years Sought palliative care as symptoms worsened for pain, insomnia, fatigue, questions about the future and what to expect Received simultaneous palliative and cancer care for a year When cancer Rx no longer helpful, referred to hospice for 3 weeks, died peacefully at home surrounded by family

Conceptual Shift for Palliative Care Medicare Hospice Benefit Life Prolonging Care Old Palliative Care Bereavement Hospice Care Life Prolonging Care New DxDeath

Implications and Lessons: Match the Care to the Patient’s Needs We don’t know who is at the end of life until weeks-days before death Advance care planning necessary from point of diagnosis of advanced progressive illness regardless of prognosis- not at “end of life” Non hospice palliative care appropriate whenever symptom, function, and family burden regardless of prognosis, and in combination with all other appropriate life prolonging treatment Hospice when life prolonging treatment no longer effective or burden>benefit. Result is genuinely patient-centered care, markedly lower costs

Art Buchwald, Whose Humor Poked the Powerful, Dies at 81 By RICHARD SEVERO Published: January 19, 2007, New York Times As he continued to write his column, he found material in his own survival. “So far things are going my way,” he wrote in March. “I am known in the hospice as The Man Who Wouldn’t Die. How long they allow me to stay here is another problem. I don’t know where I’d go now, or if people would still want to see me if I weren’t in a hospice. But in case you’re wondering, I’m having a swell time — the best time of my life.”

Life is pleasant. Death is peaceful. It's the transition that's troublesome. Isaac Asimov Isaac Asimov US science fiction novelist & scholar ( )

Although the world is full of suffering, it is also full of the overcoming of it. Helen Keller Optimism, 1903

In loving memory

Jerald Winakur, MD Center for Medical Humanities and Ethics University of Texas Health Science Center at San Antonio

JERALD WINAKUR, M.D., F.A.C.P., C.M.D. The Center for Medical Humanities and Ethics The University of Texas Health Science Center at San Antonio MEMORY LESSONS: A GERIATRICIAN’S TALE

-- Over 65: 72 million people, 20% of our populace in the next 23 years --Over 85: 18 million by Only 20% are fully mobile --50% have some degree of dementia AMERICA’S AGING SOCIETY

--50% decline in students choosing primary care as a career since the late nineties --20% decline in the number of certified geriatricians practicing in the last 10 years geriatricians in America today The “State of Collapse” in America’s Primary Care/Geriatric Workforce

--300 new geriatricians entering the workforce yearly does not replace those retiring --Only 2% of residents in training choose Geriatrics as a career : only one geriatrician per 8000 patients --Current deficit of 14,000 geriatricians will grow to 34,000 by 2030 The “State of Collapse” in America’s Primary Care/Geriatric Workforce

A HELPFUL WEBSITE: texaslivingwills.org by Craig Klugman, PhD

Health Affairs gratefully acknowledges the generosity of the following organizations for support of this conference:

The End