Advance Directives -- Two Case Studies

By John Ballard

Thanks to a combination of ignorance, political cowardice and the speed with which modern telecommunications multiplies lies, a short but significant piece of H.R.3200 will likely be removed, that portion allowing physician compensation for counseling patients regarding final directives. This is the legislative equivalent of Taliban orders for chopping off hands to prevent stealing. 

Some patients will still receive that valuable information without that wording being included in legislation, but most will be stuck with the status quo, protracting avoidable suffering at the end of life while simultaneously running up unnecessary expenses. 

...it is the status quo, in which most seniors lack advance directives, that results in the wishes of patients being trampled at the end of their lives, Cassel added. �People want pain and symptom control, they want to avoid a painful prolongation of the dying process � they want a sense of control and dignity. They are concerned about burdens on the family, both emotional and financial burdens,� she said. But what patients actually experience is something very different. For example, one study found that half of the patients studied had moderate to severe pain more than half the time in their last three days of life. 38 percent of those who died spent more than 10 days at the end of life in the ICU in a coma or on a ventilator. A third of the families lost most or all of their savings in that last illness.

Meier contrasted the experiences of two of her patients to illustrate the importance of advance directives. The first patient, Mrs. G, was an 82-year-old nursing home resident with moderate dementia and recurrent pneumonia who was hospitalized four times during one year. She had no advance directive or health care proxy decision maker. During her hospitalizations, Mrs. G suffered incalculable pain from aggressive treatments that included very difficult twice daily dressing changes for her decubitus ulcers, which extended down to bone and muscle.

The second patient, Judy F. was diagnosed at age 59 with metastatic lung cancer and given a prognosis of six to 12 months to live. Judy F. had the benefit of advance care planning from the point of diagnosis. Her goals were to live as well as possible for as long as possible- quality of life was her greatest concern. Despite her prognosis, she lived six more years, receiving excellent care from an oncologist at NYU. About 14 months before her death, she sought out Meier and began receiving palliative care simultaneously with chemotherapy from her oncologist. It wasn�t until the last three weeks of her life, when it was clear that the tumor was progressing despite treatment, that Judy F. decided to stop the chemo and begin hospice. She died peacefully at home surrounded by her family.

Health Affairs has more details.