New Jersey residents could voluntarily register their end-of-life health care wishes through the state’s Motor Vehicle Commission — like the process now in place for organ donation — under legislation designed to improve the quality of care and reduce unnecessary medical interventions.
The Assembly health committee considered testimony Thursday — but did not vote — on the bill, sponsored by its chairman, Assemblyman Herb Conaway Jr. (D-Burlington), a physician seeking to promote the use of POLST forms, or Practitioner Orders for Life-Sustaining Treatment. These documents allow individuals to record their end-of-life care wishes in advance to provide guidelines for health care workers if the person is unable to communicate.
“People need to be able to decide, while they can, what kind of interventions they want for themselves when they can’t make that decision for themselves,” Conaway said. “It relieves families of having to make the decision,” he added, “and (helps) people to control their health care right up until the end.”
The bill calls for the Motor Vehicle Commission (MVC) to create a registry for these forms and a process to allow residents coming in for a driver’s license to document their wishes in a database that would be accessible to all medical providers and emergency responders statewide.
End-of-life costs are 20% higher in NJ
While the legislation contains limited details on how this would work, Conaway said that the need is clear. Studies show New Jerseyans nearing death tend to undergo more aggressive treatment than those in other states, while the cost of care here is 20% higher.
“New Jersey is one of the worst states across the country in dealing with this,” agreed Neil Eicher, vice president for government affairs at the New Jersey Hospital Association (NJHA), which has pushed for years to expand use of POLST. “We share the chairman’s goal on this. Both from a quality-of-life point of view,” he continued, “and also from a cost-savings point of view.”
Despite broad support for the concept — in the medical profession and by the public at large — research reveals that most Americans still don’t document their end-of-life health care wishes in advance, and many die in a way they don’t want to: at the hospital, attached to tubes and machines.
Policy leaders believe wider use of POLST, or other “advance directive” forms, can improve these outcomes, while saving the health care system money. In 2018, both the New Jersey Health Care Quality Institute — which also partners with community organizations and local governments to encourage advanced planning — and the Governor’s Advisory Council on End-of-Life Care called for expanded use of POLST or similar orders in separate reports.
POLST forms, written for medical professionals, also involve a consultation with a physician to ensure the individual understands the choices involved; people fill out advanced directives on their own, or with family. (Information about POLST can be found on NJHA’s website; the state Department of Health posts advance directives and other resources.)
Access from any hospital statewide
But getting people to fill out these forms is only part of the battle; there is also the need to ensure doctors, hospitals and even emergency responders can access the information quickly and from anywhere in the state — regardless of where the patient lives or usually gets care. Paper versions of the POLST have been filed with individual hospitals in New Jersey since at least 2013, but the state has struggled to convert this to a database that providers can access from any hospital.
In 2017, the state health department tapped NJHA to create an electronic registry as a demonstration project, but officials struggled to overcome technical challenges and other issues. A year later, NJHA joined forces with groups representing long-term care providers, physicians and insurance plans in a coalition designed to support the POLST rollout and improve end-of-life care in general.
“The uptick was a little bit slow at first,” Eicher said Thursday. But the web-based POLST portal is now accessible at hospitals, long-term care facilities, doctors’ offices and other provider offices in Hunterdon, Atlantic, Burlington, Camden, Cumberland, Gloucester and Salem counties, he said.
But Eicher said knowledge of the system remains limited among physicians, as well as the public. “I think the MVC is a terrific catchment area,” he said.
Medical consultations via phone, video, kiosk
Eicher urged Conaway to include language in the bill that requires the state to coordinate with NJHA so that all forms are entered into the same database, not separate systems. And he said the association was willing to work with the state to ensure that physicians are available to consult individuals filling out the POLST, either by phone or videoconference, or through kiosks at MVC sites.
Conaway agreed any POLST registry should be unified and welcomed the association’s help with the project. “The key is how to marry up all the parties around the document and making sure the document is available to the patient when an emergency situation should arise,” he said.
The bill (A-2472) calls for MVC leaders to develop a program that can access and store POLST forms, linked to the commission’s own website, similar to the organ donation sign-up initiative launched in 2008. The registry would need to be available to all medical providers, but include appropriate privacy protections. Individuals coming to the MVC to obtain or renew their license could fill out the form, which could be updated at any point. As drafted, the measure does not say how it would be funded.
At Thursday’s hearing, Assemblywoman Nancy Munoz (R-Union), a nurse, questioned how this would work for young people who come to get their first license, noting that their end-of-life wishes may be vastly different at that point than when they are older. She also said that some residents might not understand the full implications of certain medical orders, like a do-not-resuscitate order, which prevents even the most basic life-saving measures.
“I’m very supportive of POLST,” Munoz said, ”but I think we need to be careful about how we do this.”
Both Conaway and Eicher agreed these details needed more discussion. “Your questions are valid, and I think we need to work through them,” Eicher said.