Building a Secure Database for Patients’ End-of-Life Plans

Making ‘last wishes’ when it comes to medical care available electronically should help ensure that patients and providers are in sync about terminal care

Patient Thomas McCooey greets NJ Department of Health Commissioner Cathleen Bennett, NJHA President Betsy Ryan, and HNMC President and CEO Michael Maron.
New Jersey could soon join a handful of states that use electronic registries to help ensure healthcare providers treat patients according to their wishes when it comes to end-of-life care — instead of automatically using all available medical technology to keep them alive.

State Health Commissioner Cathleen Bennett joined officials from the New Jersey Hospital Association on Friday to unveil the new electronic Practitioner Orders for Life-Sustaining Treatment (POLST) initiative that they hope will engage more patients and make their information far more accessible to those providing medical care. The information will be maintained in a secure database accessible to licensed first responders, physicians, hospital personnel, and nursing-home staff, among others, from facilities across the state.

Paper versions of New Jersey’s POLST orders have been in use since 2013, and hospital officials said tens of thousands are filled out annually by patients who want medical personnel to be clear about their preference for invasive procedures, like the insertion of a breathing tube, or the use of drugs or electric current to revive a stalled heart. But the current process involves making two paper copies — one for the patient and one for their medical file — which can be hard to locate during an emergency and may not be available to EMTs or physicians at another hospital.

POLST pilot

The initiative — which will begin with a pilot program at hospitals and long-term care facilities that are part of four healthcare systems — builds on a growing movement among healthcare policy experts and provider organizations to encourage patients and their families to talk more about their end-of-life care, and also to document those desires. April 16 marks National Healthcare Decisions Day, a campaign designed to help people better plan their end-of-life care.

Studies show six in 10 individuals have not documented their wishes for treatment related to a terminal condition, and the majority die in a way they did not want: often in a hospital bed, hooked up to tubes and machines — treatment that often costs many times more than less-invasive options. Lawmakers in New Jersey are even considering a controversial measure that would allow certain patients with terminal conditions to obtain a lethal prescription from their physicians, similar to programs established in California and Oregon.

Options for recording these end-of-life wishes include advanced directives, also known as living wills, which are crafted with the help of an attorney, or through online versions like “Five Wishes.” Many states also have forms like POLST, which patients create along with a doctor or nurse practitioner who is familiar with their condition. Several states, including Oregon, New York, and California, have created electronic repositories for these forms, or are in the process of doing so.

Physician assistance

Having a physician involved with the POLST helps ensure patients understand exactly what they are requesting and that it is written in a way that makes sense to other providers, explained Joseph Carr, NJHA’s chief information officer, who helped develop the system. Doctors and other providers are trained to do all they can to save lives, Carr noted, “so patients want to have this. They want to be able to call the shots.”

Bennett agreed. “Creating electronic access to the POLST form will help ensure patients’ wishes are honored,” the commissioner said Friday, when joining NJHA President and CEO Betsy Ryan to sign a memorandum of understanding formalizing the program at Villa Marie Claire Hospice, an inpatient facility in Saddle River operated by Holy Name Medical Center. State Sen. Gerald Cardinale, (R-Bergen), also attended the event.

“Through this tool, more healthcare providers will have immediate access to critical information they need to treat the patient according to the patients’ healthcare preference,” Bennett said.

“Sometimes the highest level of medical care — with multiple procedures or long stays in the hospital — may not be what’s right for the patient,” Ryan added. “That’s the ultimate goal behind POLST: putting patients first and providing the best care for their unique situation.”

Hospital-operated hospice

The event provided an opportunity to showcase the hospice care at Villa Marie Claire, which Holy Name President and CEO Mike Maron said is the only hospital-operated inpatient facility of its kind in the state, and underscored the importance of advanced planning in obtaining this type of service. Maron said the feedback he gets most often from patients and family members is, “I wish I knew about this sooner. I wish I understood. I wish someone told me dying could be like this.”

Maron said the electronic POLST system is a good step and, “worthy of celebration, but we have a long, long way to go,” when it comes to encouraging earlier conversations about end-of-life care. In New Jersey and surrounding states, “We do everything we can to try and beat the Grim Reaper,” he said.

NJHA’s Carr said the system — to be operated by the association’s nonprofit arm, which already manages massive amounts of sensitive patient data — will have multiple security features but allow for significant flexibility and be easier to integrate with electronic medical records, which are becoming the standard. Hospitals and other providers can access the electronic POLST forms at no cost and a free app will allow EMTs to access the database from the computers on board modern ambulances.

“This way they know what the patient wants before they get” to a patient’s home or other location, Carr said, a change that could mean a huge difference for some individuals.

POLST paper trail

Chrissy Buteas, president and CEO of the Home Care & Hospice Association of New Jersey, said paper POLST orders are transferred with a patient’s records when the individual moves from home care to a hospital or nursing home facility, or other shifts, so all providers are kept aware of that person’s wishes. “Now, with an electronic version of POLST, its portability and accessibility have been enhanced, much to the advantage of home-care and hospice patients,” she said.

Although the project will start as a pilot, Carr said other hospitals are eager to get involved and he expects the initiative will expand further within the year. Eventually, providers can also use the system to integrate the paper POLST forms they already have on file, although they will need to pay part of the administrative costs. Patients can access forms and other information on the DOH website and from the NJHA.

“Our goal is to make sure this system works 100 percent perfectly for these four hospital (systems) and their patients,” Carr said. The hope is the easier system will allow facilities to collect as many as three times as many POLST forms each year.