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After suffering for years with memory loss, Michelle Stuhl’s elderly mother, Jeanne Stuhl Gider, had to move to an assisted-living facility. Jeanne had dementia, which was progressively robbing her body of function. Within a year after the move she was disoriented, barely communicating and in diapers. Jeanne had always insisted that if the quality of her life were severely compromised by disease, she would want no life-extending medical treatment. To ensure that her mother’s wishes would be honored, Michelle developed a written plan with the doctor and staff at the facility. The document stated that, in case of a medical crisis, Michelle would be called to decide whether any proposed tests or treatment were what her mother would want. But the carefully crafted plan fell through.
Michelle received a call from a staff member at the facility reporting that her mother had been sent to the hospital after repeated vomiting. There, she was put on IV fluids and subjected to a battery of tests. The doctor on call wanted to surgically remove an obstruction suspected of being cancerous. Michelle had to argue strenuously to get the surgery canceled. She called hospice, and the hospice providers found Jeanne moaning in pain. Throughout the treatment and tests in the hospital, the staff had not attended to her discomfort. Jeanne was transferred to an inpatient hospice unit where, 10 days later, her body bruised by the medical testing, she died.
A few weeks afterward, Michelle was astounded to receive a bill for more than $22,000 for her mother’s 23-hour hospitalization. She called the billing office to protest that all the procedures billed for had been administered against her mother’s wishes. The official response was: “Don’t worry. Medicare will pay.”
Michelle Stuhl was the first speaker at a Capitol Hill meeting held in Washington, D.C., on September 9, 2002, to illustrate the mismatch between quality and amount of spending in end-of-life care, and to showcase evidence suggesting that Medicare can deliver better, more humane care for dying Americans while still not raising costs.
The conference, sponsored by The Robert Wood Johnson Foundation (RWJF), was held in part to discuss findings from the Foundation’s five-year-long initiative, Promoting Excellence in End-of-Life Care. The initiative has funded 22 health care programs offering palliative care—care to relieve the physical, emotional and spiritual suffering related to dying and to improve quality of life—earlier on in a patient’s illness than is currently allowed under Medicare regulations. By introducing palliative care early, and concurrently with life-extending care, the programs were able to maintain or lower costs through reduced hospital stays and less use of high-tech care.
After presenting promising findings from some small-scale, institution-based studies, speakers at the meeting called for the federal government to undertake large-scale demonstration programs within Medicare to see if the findings hold up when care models are applied to the general population.
