Cathy Rhoden-Goguen’s first experience with ‘Do Not Resuscitate’ orders came last year, two days after her father, Robert Rhoden, was admitted to Baptist Health Corbin with abdominal pain. Her phone rang at 5:24 a.m., and a nurse told her she needed to get to the hospital. Her father’s heart rate was dropping.
“So I ask her, ‘Has he been moved to ICU?’ And she said that he had a DNR, so they couldn’t move him to ICU,” Rhoden-Goguen said.
Thirteen minutes later, before she could get to the hospital, her father’s heart stopped and he died. He was 76 years old.
“There was no treatment and the basis for them refusing to treat him was the fact that he had signed a DNR,” Rhoden-Goguen said.
And experts say this confusion among hospital workers about what a DNR order actually means is common.
“DNR stands for ‘do not resuscitate,’” said Sara Rosenthal, the chair of the ethics committee at the University of Kentucky hospital. “DNR does not mean do not treat.”
A DNR order means that when a patient’s heart or pulse stops, advanced CPR is not given by a health provider. DNR orders are supposed to communicate a patient’s wishes to not receive CPR — basically allowing them to die— to a health provider.
There are a lot of reasons why a patient might not want CPR in a hospital setting, said Louisville elder care lawyer John Dotson. The procedure in a hospital usually means inserting a breathing tube, administering medication that can help restart the heart and doing chest compressions.
For patients that are older or frail, this can result in sternum or rib injuries, internal bleeding and damage to the heart. Patients have to weigh their current health status against the risk of greatly reduced quality of life after CPR in a hospital.
“If I’m in my 50s and if I had a heart attack and died, I would want to be resuscitated,” Dotson said. “But if it were 88 with end-stage Parkinson’s disease, perhaps I would not want to be.”
But studies have shown DNR orders are often applied to the care patients receive before their hearts stop, too. Hospital staff either think a DNR order means they shouldn’t give treatment before death, or they assume a patient doesn’t want certain treatments. A 2008 study from Boston University found that patients with heart failure were much less likely to receive certain treatments if they had a DNR order. Another study from Johns Hopkins University found doctors were less likely to initiate certain treatments for a patient if there was a DNR order.
“Before you’re found dead, if you’re DNR, they [doctors and nurses] tend not to do other stuff because they kind of think you’re someone who wants less rather than more,” said Maxwell Vergo, a doctor at the Dartmouth-Hitchcock Medical Center and assistant professor at Darmouth College in New Hampshire.
Vergo said this is even an issue at his hospital. Vergo said they surveyed staff and found some of their own doctors and nurses misunderstood what a DNR order is.
“It may mean that we tend to not worry as much about sticking to the guidelines and giving high quality care before a [cardiac] arrest because we assume they want comfort care and not aggressive medical interventions,” he said.
A ‘Catch-All’ For Care?
Vergo says the problem often boils down to how a doctor interprets the patient’s wishes, which are laid out in an electronic health record. These are called “code status orders,” which are only supposed to direct care if a patient’s heart or pulse stops.
“People use the code status order as a catch-all for goals of care. Tell me all the life support you do and don’t want, no matter whether your heart is beating or not,” Vergo said. “Those two patient groups are different – people who’ve died and people who are getting sicker, and in that order it’s all the same.”
In an attempt to make patients’ end-of-life wishes more clear, several states including Kentucky have created a new kind of form. It’s called a Medical Orders for Scope of Treatment, or MOST form. It sets out whether a patient wants a DNR order if their heart stops. Then it moves on to what treatment the patient wants if they still have a pulse and are breathing.
These forms have to be completed every year, and are only useful if they’re brought to the hospital with a patient. But Sara Rosenthal with UK said not all hospitals in Kentucky are using the form.
“It’s a relatively new form and it just requires more education, basically we need to educate health care providers on the purpose of the form and how to use them,” Rosenthal said.
A Clear-Cut System
Dartmouth is doing something about the confusion among its staff – officials there are making it a little easier to integrate their version of the MOST form into their electronic medical records with two different kinds of code orders: one for when the patient has a heartbeat, and one for when they don’t.
“You almost want an algorithm,” Vergo said. “[Health providers] come and see the patient. If the patient is dead, they should see what their code status is for that, and if they’re DNR, they don’t bring them back. And if they’re alive, meaning they have a heartbeat, they should look at the next order to see what level of life support [the patient would] be willing to try and get through being sick.”
Dartmouth also has a similar code lumping pre-death and after-death wishes together. The Kentucky Hospital Association said in a statement that most hospitals have stopped using these kinds of codes because they can be confusing to staff.
That more clear-cut coding system Dartmouth will soon start using might have helped Cathy Rhoden-Goguen’s dad.
Robert Rhoden did have a DNR order, according to public records obtained from the Kentucky Cabinet for Health and Family Services. But his medical records show he had also requested some other treatment, like drugs that work to increase heart rate and a machine that works to restore breathing. He didn’t get that treatment before he died.
After her father died, Rhoden-Goguen contacted a patient advocate who filed a complaint with the Kentucky Cabinet for Health and Family Services. The federal department of Health and Human Services examined Rhoden’s case, issuing a report that WFPL obtained through an open records request. The inspection found that Baptist Health Corbin did not have a clear policy about when staff were expected to perform CPR.
The inspection also found several instances where it seemed health workers were confused about Robert Rhoden’s care — or in one case, even his identity. They told his family a day before he died to tell them Rhoden had passed away, when in fact, he was still alive at that point.
In a written statement, Baptist Health Corbin said the hospital takes patients’ end of life care decisions seriously:
“Our highest priority is providing safe, compassionate care. Some of the most difficult decisions for patients and families revolve around end of life. Ultimately — under Kentucky law and federal regulations — it is a patient’s right to make his or her own choices. Our hospital staff and physicians do their best to work with our patients to be informed about and understand their options so patients can make those decisions.”
Rhoden-Goguen said she’s going to work in Frankfort to push for a more uniform way of displaying patients’ DNR codes and desired treatment. Meanwhile, she recently did a version of the MOST form in video format with her doctor.
“It asks you, what does do not resuscitate mean to you? To me, it means if my heart stops beating, you will not resuscitate me,” Rhoden-Goguen said. “But I’m confused. When my father was still breathing and had a pulse, it meant he was not treated. The doctor said to me, ‘you’re not the one that’s confused, it’s the hospital that’s confused.’”
Now, Rhoden-Goguen’s hope is that if she’s ever in the position her father was, her wishes will be clear to hospital staff.