Photo by Amy Luna
"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.' "
Unlike living wills and health care proxies, which are for everyone 18 and over, MOLST is for the seriously ill. "Someone who's receiving long-term care in a nursing home, or aging in place but frail — that's a person who should have that kind of conversation," said Patricia Bomba, M.D., vice president and medical director of geriatrics at Excellus BlueCross BlueShield in Rochester. She is also a key leader in New York's movement to improve end-of-life care.
MOLST addresses a patient's specific, current condition.
"If you write a living will when you're healthy, you might think you know what you want, but it's hypothetical," said Naomi Karp, senior policy adviser at the AARP Public Policy Institute, which recently issued a report on MOLST and similar programs in other states. "A MOLST is very here and now."
Before MOLST became state law, paramedics responding to a call had to proceed with lifesaving treatment unless the patient had a Do Not Resuscitate (DNR) order — even if the patient's living will specified otherwise, said Tim Czapranski, chairman of the New York State Emergency Medical Services Council and a paramedic for 25 years.
MOLST directives "take that pressure off other folks," said Bill Armbruster, associate state director for AARP New York and a member of the MOLST statewide implementation team. "They don't have to guess what your wishes are," he said.
Also of interest: Questions to ask the doctor. >>
Hilary Appelman is a freelance writer based in Rochester, N.Y.