Digital upgrade means fewer patients' end-of-life wishes will go unheard

Minutes after Leslie Giresi's 87-year-old father began suffering a massive stroke at his home, her daughter knelt before him and asked if he wanted life-saving measures taken at the hospital. As an intensive care nurse, the young woman recognized what was happening. 

"Grandpop, I don't think you're going to make it," his granddaughter told him. 

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Clifford and Dorothy Newman had already made their end-of-life wishes known through a legal document called an advanced directive or living will. But the document was loosely written and open to interpretation, said Giresi, a health care administrator and her parents' executor. 

Before her father succumbed, the Willingboro resident recalled, Newman answered his family's questions clearly. No, he did not want to be resuscitated. No, he did not want his life extended, if his illness was terminal. He was taken to the hospital and immediately admitted into hospice care, where he died.

Two years later, the family would undergo a second health crisis, one that underscored the importance of a document called Practitioner Orders for Life Sustaining Treatment, or POLST.

Signed into state law by Gov. Chris Christie in 2011, the form gives terminally ill patients and their health providers the power to specify care goals and which life-saving measures may be taken when a health crisis occurs.

The document is a medical order that becomes part of a patient's medical record, and must be honored in all health care settings, according to the New Jersey Hospital Association. Patients are asked to keep a copy of the paper form easily accessible, usually on a refrigerator door or by the bed.

Now, a digital upgrade is on the way. 

By the end of 2017, the New Jersey Hospital Association hopes to roll out a program to make an electronic version of a patient's POLST readily available to nursing homes, hospitals and other health care institutions, as well as emergency medical technicians. The program will be tested at three sites in New Jersey (Hunterdon Healthcare, Atlantic Health and Princeton HealthCare System), before it's available statewide.

While paper forms will still be available to patients, the digital version will allow patients to keep the document on their smart phones, and share it with family members, said Joe Carr, chief information officer for the hospital association, who is directing the program's rollout.

"Wherever they go, they'll have that information," Carr said. The program includes how-to videos to teach patients and their families about the POLST and how to access the digital version.

Dr. Stephen Goldfine, chief medical officer for Samaritan Healthcare and Hospice, praised the concept, which will become part of a patient's electronic health record and protect against the possibility of paper forms lost or left forgotten at home. 

"This will increase access dramatically, and allow patients' (wishes) to really be honored," Goldfine noted. 

That doesn't always happen now. 

An estimated 80 percent of Americans want to die at home, and only 20 percent have an opportunity to do so, said Sister Patricia Codey, a lawyer and president of Catholic Healthcare Partnership of New Jersey.   

“In New Jersey, we spend the most amount of money at end-of-life care with no better outcomes as a result of it,” said Codey. "Is that what we want to be known for as a state? Is that how we want our New Jerseyans to die? Isn’t it better for them to be surrounded by love, and to tell them they are loved and how much they meant to us?"

It's OK for patients to die without being hooked up to machinery, Codey said. And death is a natural part of life. 

“So often, a physician takes the model to do no harm, and they’re so caring and understanding that they want the individual to continue and to live on," Codey said. "But I think we have to flip it the other way and say it’s OK to die.”

In March, Giresi's 91-year-old mother, Dorothy Newman, was diagnosed with congestive heart failure. Once an active woman who loved to dance, she could no longer take more than 10 steps at a time. She couldn't get out of a chair. She was losing her appetite.

Armed with the memories of her father's death, Giresi kept thinking about protecting her mother's wishes as her life neared its end.  

With her daughter at her side, Dorothy Newman told her nurse practitioner she was "done." Together, at Giresi's suggestion, they decided to fill out a POLST form. Asked what her goals were, Newman said simply she wanted to be with her husband. She was ready to die. 

Over the next 45 minutes, the nurse practitioner explained each life-saving measure on the form, including CPR. The form was filled out and posted on Newman's refrigerator door. Within a few days, her condition worsened, and she collapsed at home.

A family member found her and called 9-1-1. A police officer arrived and moved to start CPR, but stopped when the POLST form was produced. 

"This form basically carried out her wishes," Giresi said. "We're all going to die. Why not die the best you can?"

Giresi said she and her family wanted to share their story to educate others on the importance of the POLST form. 

"It was a gift to us," Giresi said, "because we knew she made that decision." 

Kim Mulford: (856) 486-2448; kmulford@gannettnj.com

#BEFOREIDIE 2017

This community gathering will take place Sunday, Oct. 29, at Perkins Center for the Arts, 30 Irvin Ave., Collingswood. It's sponsored by Courier-Post, Samaritan Healthcare & Hospice and Perkins Center for the Arts. Free. Visit SamaritanNJ.org to register.

Morning session for families, kids and teens: 11:30 a.m.-1:30 p.m. Make art with the Samari-teens; Hear stories by Queen Nur; Share songs with Community Rocks!

Afternoon session is 21 and up only: 2-6:30 p.m.;Meet Instagram star/pathologist’s assistant Nicole Angemi; Workshop with Best Day of My Life So Far founder Benita Cooper; Hear stories about dying and living across cultures with Queen Nur; Share your bucket list on Before-I-Die wall; Find out how to donate your body to science; Enjoy artwork, live music, prizes, Day of the Dead face painting Learn about living wills, organ donation, funeral options, estate planning; Sample beers from Tonewood and Flying Fish and wine from Sharrott Winery;  Savor food from Square Meal, Tortilla Press, Bistro di Marino, Harvest Grill & Wine Bar; Enjoy coffee/dessert: Revolution Coffee Roasters, Di Bartolo Bakery, Constellation Collective; Check out local vendors including Inkwood Books, Death Couture and many more

What you need to know: 

• The Practioner Orders for Life Sustaining Treatment or POLST is a document that must be filled out between a patient and the patient's doctor or advance practice nurse. 
• The signed and completed form is a medical order, and must be followed at all health care institutions. 
• The order can be changed at any time.
• A patient may also need an advanced directive or living will to appoint a health care administrator. 
• The POLST becomes part of a patient's medical record. A paper copy should be kept readily accessible. An electronic version that can be stored on a patient's smart phone is expected to roll out by the end of 2017. 
• Patients who may qualify for a POLST include those in nursing homes or hospice, those with serious, limiting illnesses, and people who are frail or have trouble performing daily activities.