Sheryl Decker had to make a decision that no one wants to make.
In February, Decker’s 57-year-old sister, Linda Czerwinski of Michigan, suffered a major stroke. After several tests, doctors concluded that she was brain dead.
Because Linda had not discussed her wishes or filled out any paperwork regarding her care in such a situation, her family was faced with the decision of whether to disconnect life-support equipment. Although the decision to end support was made, it was a divisive time; some relatives supported the decision, while others were against it.
“It was horrible,” Decker said. “But it was the best thing for Linda. It’s not a life when you’re a vegetable.”
It would have been easier on the family, Decker said, if her sister’s wishes had been known.
“The decision would have been made by her and wouldn’t have had to be made by us,” she said.
In an effort to improve patient care, Via Christi Health, Wesley Medical Center, the Medical Society of Sedgwick County and other area medical groups have started an initiative to encourage people to discuss their end-of-life wishes with their physicians and families and to fill out a Transportable Physician Orders for Patient Preferences form.
The form is recommended for people with advanced or terminal illnesses to outline decisions on using CPR, medically administered nutrition and other medical procedures with their doctors.
A right to decide
Donna Sweet, a Wichita physician who specializes in the care of HIV-positive and AIDS patients and is president of the Medical Society of Sedgwick County, said many patients don’t realize they have the right to say what they want and don’t want when they’re dying.
“This is about patient rights and for the patient to be able to tell us and their family what it is they want,” Sweet said.
The form can be changed or updated at any time, Sweet said. It’s pink and can be put on the refrigerator for emergency medical personnel to look for if they are called.
Leaders at Via Christi and Wesley say they will work with physicians, hospice, long-term care facilities, emergency services and others to incorporate the form into patient care.
Eventually, it will be incorporated with electronic medical records, Sweet said.
TPOPP officials said the form is not a substitute for advance directive, durable power of attorney, a living will or a Do Not Resuscitate form since it’s not a legal document.
But they hope it will help start a conversation among patients so that their wishes can be fulfilled.
Right now, the TPOPP forms are available only from physicians.
It’s not uncommon for resuscitation to be given when someone doesn’t really want it, said Sabina Braithwaite, Wichita-Sedgwick County EMS System medical director.
“ ‘Doing everything’ is not always the right thing, but that’s the default,” Braithwaite said. “It happens more than you would think.”
“It’s heartbreaking for the crews, it’s heartbreaking for the family and the patient, too, who had special wishes – or the ones who just entered hospice and haven’t filled out paperwork. The family might know what they wanted but there’s no documentation anywhere.”
Sweet said that as a physician, she’s encountered many instances of elderly patients who have to unexpectedly go to the hospital, and their wishes are not known or executed.
“A few months ago, I was off call and there was a new (nursing home) nurse whose patient wasn’t doing well and she ended up in the emergency room,” Sweet said. “It wasn’t what she wanted, but the nurse didn’t know and she ended up on a ventilator.”
In that case, the family then came and had to make the decision to pull her off of the ventilator.
“That’s the really hard thing,” Sweet said.
The experience Decker had with her sister has sparked new conversations within their family. Even Decker’s 13-year-old granddaughter has told the family what she would want to have done.
Decker likes the idea of having a form on the refrigerator. She also thinks it would be helpful for people to be able to put their end-of-life wishes on their driver’s licenses or government ID, much like organ donation.
“I don’t think you should wait until you’re terminal,” said Decker, who now has a directive.
“It’s not something Linda and I, or our mom or her kids, ever talked about. It’s important to have that end of life the way you want it. … People don’t like to talk about death. It’s a culture. But it’s something that really has got to be discussed.”
For more information on the TPOPP program, go to www.tpoppwichita.org.