"She said, 'I don't want any chemo. I don't want any radiation,' " her daughter, Ellen Sorce, of Brockport recalled. Sorce's father had died of cancer a decade earlier, after an aggressive course of treatment. "She did not want to be sick like that."
With Sorce's help, her mother filled out New York's Medical Orders for Life-Sustaining Treatment (MOLST) form, which her doctor signed, spelling out the medical treatments she did and did not want. Two months later, Leisten, 79, died in the Spencerport house she and her husband had built, with her cat at the foot of her bed. "She died exactly the way she wanted to," Sorce, 57, said.
MOLST forms translate a patient's wishes for treatment — whether to allow CPR, for example, or a breathing tube — into binding medical orders, signed by a doctor. The MOLST form is printed on bright pink paper — immediately recognizable by emergency responders and other health care providers.
A decade ago, research found that Americans were not dying the way they wanted to, in the setting of their choice and free from needless suffering. Out of that came the Community-Wide End of Life/Palliative Care Initiative and eventually MOLST, which became state law in 2008. New York's Palliative Care Information Act, which took effect in February, requires that terminally ill patients be offered information and counseling about their care options.
The MOLST program urges people to talk to their families and doctors about end-of-life care, said Mary Beth Morrissey, a health care attorney and advocate in palliative and end-of-life care. Patients shouldn't wait for their doctor to raise the subject, she said. "Older adults need to have enough information to walk into their physician's office and say, 'I would like to talk to you about the MOLST process.' "