Statement of Julia Hallisy
Regarding Senate Bill 1344 / Futile Care
To the CA State Senate Insurance Committee
April 3, 2002

My Daughter, Katherine Eileen Hallisy, faced cancer five times before she was ten years old. Few diagnoses inspire more fear, cause more suffering, or now, lead to subjective judgements made by strangers about the value of your life.

In August of 1998, the oncologists at UCSF Medical Center decided that they would no longer provide medical care for our then nine-year-old daughter. When my husband and I protested, they said that the odds of her cancer returning and her condition becoming terminal were almost certain so giving her more chemotherapy was only prolonging the inevitable. We explained that our daughter was a fighter but the oncologists refused to reconsider. When we asked what to expect for Kate's immediate future, the doctor said that without treatment her cancer would likely spread to her bones in a matter of weeks or months. We had been discarded by the medical system with only the assurance that Kate would get "plenty of pain medication."

We immediately started to look for treatment elsewhere and were fortunate enough to find an oncologist, Dr. Jordan Wilbur, who respected and valued both Kate's life and our role as her parents and caregivers. We had 19 more months with our daughter - months that included her 10th birthday, an Easter egg hunt, trips to the beach, and perhaps best of all - quiet family times at home with a rented video and a pizza. 19 months to a nine-year old is a lifetime. Our sons, then 6 and 12 years old, have hundreds of memories and photos of their sister that would never have been possible without Kate's additional treatment. Even three months for a family with a dying loved one can be like three years to another family because time ceases to be a luxury. There are no words unspoken, no emotions unexpressed, and no fears left uncomforted.

Doctors and patients often disagree about their therapeutic goals. Treatment success is a subjective judgement that is influenced by an individual's values, perceptions, and prejudices. The American Medical Association itself acknowledges that "definitions of futile care are value-laden" and that denial of treatment should be justified by reliance on ethical principles and not on the "concept of futility, which cannot be meaningfully defined." We have wisely abandoned a paternalistic medical system where doctors were never questioned because it was assumed that they always knew best. We cannot expect people to take responsibility for their medical care without also recognizing their right to determine their treatment goals.

There may be cases of people desiring medical care that could be considered inappropriate. The problem is that by setting policy based on these extreme cases, we cast a wide net. This issue has a huge gray area. In fact, it is an overwhelmingly gray area. And by grouping all these people together, we snare them in the same net and condone the sacrifice of their rights and their lives. When continuing treatment is the only alternative to certain death, what reason could justify depriving individuals of the chance to fight for every precious moment of their lives? In a country that values freedom above all else, we are failing the most defenseless and vulnerable members of our society.

Futile Care policies force us to beg for the lives of our loved ones in a country with the most advanced medical delivery system in the world. We watch news reports of mothers in third world countries begging for food or medical care for their dying children and we feel grateful that we are so far removed from that kind of desperation. The reality is that people in this country, in our cities, and in our local hospitals are facing this same kind of hopelessness - but the difference is that you have the power to do something about it. Sir Edmund Burke said it best." All that is necessary for evil to triumph is for good men to do nothing." Please don't be good men and women who choose neutrality and open the door for the ethically indefensible practice of denying medical care based on the concept of futility.

This bill represents one of the most important policy decisions you will ever make. Poor health is the one great equalizer. None of us is immune to the ravages of illness. This bill addresses issues of the obligations physicians have to their patients, the integrity and the future of our entire medical system, and the legacy of personal freedom and health care excellence we should leave to the next generation.