Too few facing the end of their lives instruct doctors on what kind of medical care they want. N.J. has a legally binding form to do this.
TRENTON -- Barbara Figge Fox doesn't just miss her mother, who died ten years ago.
Fox said she is "haunted" by how her 96-year-old mother died -- in a nursing home three days after leaving the hospital. A rushed conversation in the intensive care unit with a doctor trumped her mother's wish to die at home, she said.
"She never had a chance to consult with a palliative care doctor," said Fox, a retired journalist from Princeton. "You lie awake nights. Could I have done it differently?"
Most N.J. residents avoid end-of-life planning
Five years ago, New Jersey began offering terminally ill patients and doctors a way to work together to make sure patients' end-of-life wishes are met. Gov. Chris Christie signed a law in 2011 that created the POLST (Practitioner Orders for Life-Sustaining Treatments) form, which allows patients to spell out what kind treatments they are willing to accept in their final months, weeks or days.
The one-page form completed by a doctor or nurse practitioner with the patient's help is legally binding, unlike a living will or advanced directive which are often done before the onset of a terminal illness. The form accompanies a patient's medical records and is kept at the bedside. It is used if the patient is unable to communicate.
When a close relative faced a terminal cancer diagnosis two years ago, Fox, her caregiver, said the experience couldn't have been more different than that of her mother. A doctor met with them over the course of a week while she was at Princeton at Plainsboro Medical Center, Fox said.
"Because there was a palliative care expert at her bedside who did not tell her what to do and just asked her questions, she was able to come to the conclusion that what she wanted was not more treatment. She wanted to rest comfortably at home," Fox said.
Following the POLST form, Fox's 82-year-old relative died at home two weeks later. She declined to identify her loved one to protect her privacy.
Fox said the law is "a blessing."
However, few people seem to be aware of the law and and have used the form, said David Barile, a palliative care physician at Princeton hospital who served on a committee formed by the New Jersey Hospital Association, which adapted the form from other states to create a version for the state.
Barile is also the founder and CEO of New Jersey Goals of Care, a nonprofit organization that educates medical providers, patients and their caregivers on how to approach these decisions.
"This is about planning for our lives. One mechanism for that is POLST form," he said.
New Jersey has the dubious distinction of spending more money on end-of life care than any other state, according to the Dartmouth Atlas of Health Care, a national study of Medicare patient treatment data.
"We are really in an awful spot because care is so fragmented" with no one looking at the whole patient and asking what he or she wants, Barile said.
"The hardest part for the medical community is sharing information about the prognosis. We are klutzy about that. We'll say the prognosis is poor but what does that mean?" Barile said, who counseled and signed off on Fox's relative's POLST form. "We are trained to cure -- this is how we are wired. We don't learn this stuff in medical school."
A series of six short videos, sponsored by Bridgeway Care and Rehabilitation Centers, Care Associates Network and the Health Care Association of New Jersey, walks patients and caregivers through the soul-searching process of what kind of care they want.
Barile said the discussion breaks down to four parts: The diagnosis; the prognosis of how much time is left and what will that time be like; the patient's personal goals of care; and the treatments that can achieve these goals.
One patient's goal was to live long enough to attend her grandson's bar mitzvah; another patient wanted to deliver a book manuscript to a publishing house, Barile said. Both achieved their goals before they died, he said.
The form asks patients to check a box indicating their willingness to receive interventions like artificial nutrition; CPR; and full treatment, just enough to ease pain, or something in between.
One question -- what Barile calls "the Gov. Christie section" asks patients, if they become incapacitated, whether their next-of-kin or other surrogate decision-maker may change the content of the form.
More information about the POLST form may be found at the state Health Department's website, the hospital association website and goalsofcare.org.
Susan K. Livio may be reached at slivio@njadvancemedia.com. Follow her on Twitter @SusanKLivio. Find NJ.com Politics on Facebook.