When terminal patients approach the end of their lives, trying to decide what they want from the time that remains can baffle and embitter even the closest families.
But thanks to a new form released Friday by the state and the New Jersey Hospital Association, that could be one decision that distraught families may not have to deal with.
Known as, it enables terminal patients to decide -- with their families, doctors, and nurse practitioners -- what end-of-life treatment they want while they are still able to make that choice.
Their goal could be to live as long as possible. Or to live without pain. Or to stay alive just long enough to attend a family wedding .
The form was first framed by a 2011 state law, but its contents were only defined recently. It's now being distributed to hospitals, physicians, nursing homes, and other healthcare providers.
The state is recommending that doctors and nurse practitioners complete this form with all patients who have a life expectancy of fewer than five years, but once a form is filled out, it requires that every doctor in the state follow that form. At this point, the regulation to enforce that rule hasn't been written, and the state hasn't issued a timeframe concerning that process.
A POLST must be filled out by a healthcare provider based on a conversation with the patient or the patient’s guardian or on an advance directive. Healthcare officials recommend that the form be updated whenever the patient’s status changes, such as when he or she is moved from a hospital to a hospice.
When a POLST is completed, it travels with the patient and will ultimately be part of his or her electronic medical record as providers implement them It has the force of a medical order, which means all healthcare providers are required to follow its instructions. (Gov. Chris Christie vetoed an early version of a bill that would have allowed providers to overrule the POLST.)
The form provides more direction than advance directives, which often only name individuals to make decisions if a patient become incapacitated. Directives also don’t accompany patients and are not available to some providers, like paramedics.
Dr. David Barile, a palliative care doctor with the University Medical Center at Princeton, has been using a version of the POLST in a pilot program. He worked with the New Jersey Hospital Association group that wrote the form.
Barile said New Jersey’s POLST is unique in that it begins with a blank box to be filled with the patient’s goals for the care they will receive.
“We’ve organized the form in a sense so that it can be a script at the bedside for a practitioner to follow,” Barile said, adding that the form deemphasizes what to do when a patient’s heart stops and instead focuses on what will help a patient achieve his or her goals.
After the goals are completed, the form moves on to questions about the patient’s wishes regarding medical interventions. For example, does the patient want to go to a hospital or receive artificial nutrition. Does he or she want to be resuscitated.
Barile recalled filling out the form with a patient.
“She said, ‘Well, it’s my final year, I want to spend most of the time at home. I don’t ever want to be on that breathing tube again, and I don’t want to go back into the hospital. But I would like to get stronger and at least function a little better, so I wouldn’t be so dependent on my children,’ ” Barile then translated these goals to answer the specific questions on the form.
The form is also expected to reduce the amount spent on end-of-life care in the state, since patients frequently prefer to receive less-aggressive treatment when they are faced with a life-shortening illness.
New Jersey is among the states with thepatients spend in intensive care in the final two years of their lives, as well as for the number of physicians who treat them and the cost of the treatment they receive, according to a Dartmouth Atlas of Health Care review of Medicare data
Jeanne Kerwin, coordinator of ethics and palliative care at Overlook Hospital in Summit, worked as a paramedic for more than 25 years. She recalled incidents as long ago as the late 1970s when patients in their 90s were intubated against their previously stated wishes because there were no medical orders that could overrule emergency protocols.
“We all knew it was wrong, but we had no clarification, and protocols drove the system,” she said. “And it’s pretty much that way today.”
Kerwin said a POLST will provide needed direction to the family members of patients who are incapacitated, who will frequently agree to having feeding or breathing tubes inserted without understanding whether this will meet the patient’s goals.
In the absence of a POLST, a paramedic might ask a family member whether a patient should receive a breathing tube, without understanding that this decision could lead to the patient being placed on life support. Then, a series of medical specialists might ask if the patient should receive different types of care related to their specialties, again without the family member understanding how each treatment may prolong life without affording quality of life.
End-of-life care can be more challenging due to inadequate planning, according to state Health Commissioner Mary E. O’Dowd. “Without clear direction, end-of-life care can become a guessing game for the families,” she said, adding that this can lead to patients receiving unnecessary or aggressive treatment that they wouldn’t have wanted.
She said the POLST would give patients more control over their treatment, including interactions with family members. She discussed a patient at a long-term-care facility who mailed her daughter a copy of the POLST as a way of communicating her wishes.
“This is a really helpful tool for people to have, to feel confident that their own wishes will be honored,” she said.
While the POLST will be used after a patient has been diagnosed with a life-limiting illness, it’s intended to be completed before an emergency occurs, according to O’Dowd.
The New Jersey Hospital Association recommended to legislators that they write the law law introducing the POLST, based on the experiences of other states, which have been using the forms beginning with Oregon in the 1990s.
NJHA president and CEO Betsy Ryan said the form is a needed step in encouraging providers to have a conversation with patients once they have reached a diagnosis of a life-limiting illness.
While some hospitals – including the University Medical Center at Princeton – plan to use the form immediately, the state hasn’t issued regulations regarding how the POLST will be implemented. O’Dowd said those regulations are being written.