After father’s death, Do Not Resuscitate changes sought
John George had a DNR order in place, but that wasn't enough to prevent emergency resuscitation measures, his daughter, Becky George, has learned.
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Becky George shown here in her Greenfield home, hopes to see improvements in the way DNR requests are handled.
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Becky George poses for a portrait Thursday, March 21, 2013, in her Greenfield home.
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When John W. George, a retired UMass chemistry professor and longtime Amherst resident, collapsed during his daily walk one day last fall in South Amherst, some passersby came to his aid, discovered he had no pulse and performed CPR.
Their lifesaving efforts were unsuccessful, but they also called 911. EMTs were able to revive the 85-year-old, despite the fact that he carried a Do Not Resuscitate request in his otherwise empty wallet, according to his daughter, Rebecca George of Greenfield.
Then — in a sequence his daughter says he had hoped to avoid — he ended up at a hospital and underwent further life-sustaining measures in the emergency department. He was transferred to the Fisher Home for End-of-Life Care in Amherst, where he later died.
“I am not pointing fingers,” said Rebecca George. “There is no blame going around here. But my dad ended up dying 11 days later in an institution, instead of where he fell, which is what he preferred.”
The case points to complications in the DNR system: do-not-resuscitate orders that are not always immediately available, for instance, hard-to-predict medical circumstances, and emergency response protocols aimed at saving lives. Eventually, refinements in DNR orders and techological advances may address these issues.
Forms and protocols
Frustrated that her father’s lifelong and well-expressed wishes were not followed, she is on a quest to improve the way DNR orders are handled. In response to her concerns, state Rep. Paul Mark, who represents the second Berkshire District, has filed legislation seeking a study of the issue.
While medical professionals say that her efforts to improve the system are laudable, there are limitations to how they can respond to such requests in emergency settings when each passing minute can mean the difference between life and death.
Under state law, EMTs, paramedics, emergency room doctors, and others must provide life-sustaining treatments, unless they specifically see an official Comfort Care/DNR form, and/or its more recent and more comprehensive incarnation: the Massachusetts Medical Order for Life Sustaining Treatment. Unless they have access to such an order, they are legally bound to resuscitate and offer lifesaving support, per their protocols, according to the state Department of Public Health. If they are shown a properly executed CC/DNR form or MOLST specifying no resuscitation efforts for the patient, EMTs will provide only palliative or “comfort” care to the patient during transport.
Rebecca George acknowledges that her father did not have an official CCC/DNR verification form on his person when he collapsed, just a slip of paper with DNR written on it. But, she noted that there were numerous other places where the actual form was on file: at the hospital where he was transported, in her dad’s doctor’s office, and posted prominently in his home. She said the DNR information in her father’s wallet also included her name and number, as well as her dad’s doctor’s name and number, and should have prompted the EMTs to look further.
John George’s children also were well aware of their father’s longstanding wish not to be resuscitated in such a situation. She wishes EMTs had looked for indications of a DNR and once seeing it, even if it was unofficial, had investigated further to find official documentation.
New system in works
Doctor R. F. Conway, medical director for emergency services at Cooley Dickinson Hospital, who oversees EMT services in Berkshire, Franklin, Hampden and Hampshire Counties, said the MOLST form was adopted by the state last year as a more comprehensive alternative to the CC/DNR. He said MOLST is an enforceable order, while the CC/DNR is merely a document that directs emergency responders about what they can and can’t do with a particular patient who has one.
MOLST is slowly being phased in statewide as an alternative to the CC/DNR and will probably entirely replace it within 10 years, he said. Both forms are currently valid in outlining a person’s wishes in an emergency situation and in regard to end-of-life care. Healthcare providers at hospitals, nursing homes, assisted living facilities and other organizations are undergoing training about the MOLST and primary care providers are beginning to work with patients to fill out forms. Many patients with chronic disease or terminal illness and elderly people already have MOLST forms in place, he said.
A patient works with his or her doctor to determine what life-saving measures they want and what they don’t want, according to Conway. For example, a 90-year-old patient with respiratory difficulty may have a MOLST form saying CPR is allowed, but she does not want to be intubated, vented or subjected to cardiac defibrillation. The patient may agree to intravenous medications and cardiac monitors, but not other interventions. The MOLST spells out exactly what the patient wants in regards to lifesaving measures and is signed by the patient or a healthcare proxy and the patient’s doctor, nurse practitioner or a physician’s assistant.
Conway said it’s important for families of sick and elderly people with a CC/DNR or a MOLST that requests no lifesaving measures and an expressed desire not to be transported to hospital to realize they should not call 911 in the event of cardiac or respiratory failure.
Someday, he said, there may be technology in place where people with DNR orders could be micro-chipped and EMTs will be able to scan a patient and determine on the spot what orders to follow. But for now, the process is more cumbersome and sometimes faulty.
This is exactly what Rebecca George wishes to address.
Conway said the process usually goes well when a patient with a designated DNR collapses in the home or a healthcare facility, such as a nursing home. It is not so clear-cut when something happens outside these settings and the MOLST or CC/DNR forms are not immediately evident.
Michael Rock, service director for Highland Ambulance Service in Goshen, said unless EMTs see the MOLST or CC/DNR form and it’s signed and dated by a physician, they are “going to do what they have to do,” which is to begin lifesaving measures. Rock said EMTs are trained to look for a DNR form, but depending on the nature of the emergency call, may not go as far as rifling through a wallet or purse. If additional emergency responders are on the scene, such as police, they may offer help in looking for the forms.
“It’s a difficult situation for families and for the ambulance crews to deal with, but we explain that we have orders to follow and we have to assume that a patient wants to live,” he said, unless the actual DNR order is available.
Hospitals are in the process of computerizing DNR information, but it still isn’t always instantly available.
A medical bracelet or necklace with DNR stamped on it, can tip off emergency responders to look further for the appropriate documentation. However, they don’t carry any legal weight.
And in some cases, even patients who have MOLST or CC/DNR forms might ultimately consent to certain interventions, such as a quick shock to the heart, fluids, or medications that might bring them back to baseline, Conway said. If the patient is lucid, EMTs try to talk to them about their wishes, because in some cases, even with a DNR, a sick patient may decide in the moment that they want to live.
Thus, it is critical for patients with end-stage cancer or another illness to determine with their healthcare providers exactly what kind of interventions they will agree to and what’s a no-go, in all circumstances.
Conway said people with CC/DNR forms or MOLST should post them prominently in their homes. Conway also suggests that people give out copies of their MOLST forms to family members, caregivers and friends, and keep a copy in the glove box of their vehicle. In many cases, small-town ambulance services will also keep these documents on file for people who request it, he said.
A daughter’s quest
After her father died, Rebecca George began talking with others whose relatives had DNR orders that were not followed.
She brought the matter to state Rep. Paul Mark, who represents the Second Berkshire District. He has filed legislation directing the state Emergency Medical Services Advisory Board to study and prepare a report on the feasibility of updating current laws in relation to DNR orders in the state.
“I want to know how we can work it out so people who have a clear DNR order can have it honored under all circumstances,” she said.
Mark said the commission will bring together first responders to examine the way DNR orders are handled.
“We will be looking at what needs to be done to create a better system so that someone with a DNR order won’t have their wishes ignored in the future,” Mark said. “I want to make sure everyone involved in this has a chance to voice their opinions so we can come up with a plan.”
George believes the system requires dramatic improvements, such as increased education for EMTs about what to look for and where, and other avenues for a person to make known his or her wishes. George said that might mean the development of technology to be used by EMTs on the scene to access a person’s DNR order, special placards for cars, a DNR symbol on a driver’s license, some kind of tattoo or marking on the body designating DNR and more.
She said as the baby boomer generation ages, it is critical for people to be aware of what they need to do and for the system itself perhaps to be overhauled.
“A lot of (boomers) I suspect, will not want to be resuscitated,” Rebecca George said. “Unless we are all really clear on this process and how it works, it’s not going to be honored. As it stands, it puts the emergency responders in an awkward position.”