By Rebecca J. Benson and Sylvia Henry*
Beatrice Smith, age 87, knew better than to believe the medical dramas on TV. She knew that CPR could be traumatic, resulting in broken ribs and other injuries, especially true for a frail elder. And the results, even if successful, might not be desired, especially if the patient's brain was deprived of oxygen for more than a few minutes. After a great deal of thought, Mrs. Smith decided that, if her heart or breathing were to stop, she did not want to be resuscitated.
Mrs. Smith discussed her decision at length with her family, her doctor, and the nurse at her assisted living facility so that they would all be aware of her wishes. She also wanted to be sure that her decision would be honored by her health care providers, so she made sure to put it in writing under a protocol designed for Do Not Resuscitate (DNR) orders outside of a hospital setting. Unfortunately, events didn't work out as she had hoped.
Do Not Resuscitate Orders in a Hospital or Nursing Home
A DNR order executed by a physician, nurse practitioner, or authorized physician assistant documents the patient's wish not to be resuscitated. Once a DNR order is in place, doctors, nurses and other providers will not attempt emergency CPR if the patient's breathing or heartbeat stops. The protocol does permit emergency medical technicians (EMTs) to provide palliative care (comfort care that eases or relieves symptoms without correcting the underlying cause or disease) so the patient feels as comfortable as possible.
DNR orders can easily be stored in a patient's medical chart and are normally posted close to a patient's hospital bed, making them accessible and readily enforceable if an event occurs in a licensed medical facility such as a hospital or nursing home. However, because an assisted living facility is not a licensed health care facility, it is considered a community setting (like a private home) and different rules apply there.
Emergency medical services (EMS) personnel are trained to perform emergency resuscitation and will refrain from doing so only if they are absolutely certain that a qualified DNR order exists. A valid DNR order from a licensed health care facility will not be honored by EMS personnel outside of the facility.
In order to address this gap, Massachusetts implemented a protocol known as A Comfort Care/Do Not Resuscitate Order Verification (CC/DNR Order) in 1999. The CC/DNR Order allows an individual to avoid unwanted emergency care in a non-institutional setting. An individual must have a CC/DNR Order if she does not want to be resuscitated outside of a licensed health care facility. Thus, assisted living residents (as well as those who live at home) who do not wish to be resuscitated would need to have a CC/DNR Order in place to document their wishes.
The CC/DNR protocol presents several challenges in a community setting. In emergency situations, EMS personnel do not have much time to search for the CC/DNR Order. If they do not see it, they will proceed with lifesaving measures. A primary concern in enforcing CC/DNR Orders in emergency situations is making certain that EMS personnel are able quickly to find the order.
A second challenge is to make sure that the first responders correctly validate the CC/DNR Order. Under the CC/DNR protocol, an attending physician, nurse practitioner, or physician assistant must provide a patient who has a current DNR order with a fully executed CC/DNR Order Verification Form. Without a valid CC/DNR Order, EMS personnel will resuscitate patients in accordance with standard EMS protocols.
Do DNRs Work in the Community?
One evening, as she was sitting in a chair and watching TV with her companion, Mrs. Smith became unresponsive and stopped breathing. In the heat of the moment, someone called 911. When the local EMTs arrived, the facility staff presented them with the CC/DNR Order, but the EMTs questioned its validity because it was missing Mrs. Smith's address. The companion called Mrs. Smith's daughter, Sylvia, during the emergency and Sylvia asked to speak with the EMTs to clarify the CC/DNR order, but the EMTs refused to come to the phone.
Because an assisted living facility is not a licensed health care facility, the staff were not authorized to cancel the EMS call on Mrs. Smith's behalf. When the emergency responders concluded that the CC/DNR Order was invalid, they performed CPR and other invasive procedures, including intubation, and rushed Mrs. Smith to the hospital, against her express wishes. Mrs. Smith was never successfully revived and was pronounced dead at the hospital.
Sylvia, Mrs. Smith's daughter, was deeply troubled by this incident. The local EMTs had previously transported her mother to the hospital on several occasions, and therefore had a record of her identity and her address. She believed that the EMTs could have easily verified the CC/DNR Order if they had spoken with her or with her mother's physician, whose name and phone numbers were on the CC/DNR Order. The primary care physician had been chosen because the practice had 24-hour coverage by a licensed physician who had access to all patient records electronically, including access to Mrs. Smith’s CC/DNR Order.
Not long after her mother's death, she spoke with the local fire chief and the ambulance service to discuss her concerns. She also filed a request for a compliance review with the Department of Public Health Office of Emergency Medical Services (OEMS). Although the fire department and ambulance service claimed that the EMTs had called the dispatcher for advice about how to handle the situation, she found no record of any such call in the OEMS tapes.
The OEMS investigator, herself an EMT, reviewed the EMTs' records of the incident and interviewed the various first responders involved, as well as the director of emergency services at the hospital to which Mrs. Smith was transported. The investigator made no effort to contact Sylvia in the course of her investigation, however. The investigator noted that the form did not include Mrs. Smith's address or specify the title of the provider who signed it, and concluded that:
"Without the credentials of the signatory, the EMTs had no way of knowing if the signature on the form was that of a physician, authorized nurse practitioner or authorized physician's assistant. Therefore . . . under the CC/DNR protocol, the EMTs were required to provide care for this patient in accordance with the Statewide Treatment Protocols."
A qualified medical professional (Mrs. Smith's physician) had in fact signed the form, and the applicable signature line stated "I am an attending physician/NP/PA for the above named patient . . . “ The form itself does not state that the medical professional is required to choose one of these categories, and Mrs. Smith's physician had not circled one of those choices or otherwise indicated whether she was a physician, nurse practitioner, or physician assistant.
In our view, the decision of the OEMS investigator is a clear case of form over substance. In this instance, it would not have been difficult to verify Mrs. Smith's identity and address, and there was no question that the person signing the form was a physician, nurse practitioner or physician assistant. The EMTs’ decision to perform CPR and intubate a frail elder who had taken whatever steps she could to avoid such procedures was a serious invasion of her privacy and dignity.
Anyone who takes the trouble to complete a CC/DNR Order wants the peace of mind of knowing that it will be honored. Something very wrong happened here. "It was not what my mother would have wanted," says Sylvia. “Seeing that they had attempted to revive her and used intubation was the worst aspect of what we found when we entered the emergency room at the hospital. I would like to think that another family might benefit from this experience."
In the aftermath of this incident, Mrs. Smith's assisted living facility took several important steps to ensure that the residents' wishes would be honored. The facility staff now reviews each resident's CC/DNR Order to make sure that it is complete. They make copies of all of the CC/DNR Orders on neon yellow and pink paper, and post them on the residents' refrigerator doors or inside their front doors. The facility has trained all of its staff to hand a copy of the CC/DNR Order to the EMTs when they arrived at the facility, along with the resident's emergency contact information.
What You Can Do
To make sure the appropriate people know that the order exists, make copies of your CC/DNR Order and distribute them to physicians, family members, and close friends. Assisted living residents should be sure to inform the facility of their CC/DNR Orders. The best place to keep a CC/DNR Order at home is on the refrigerator door or on the inside of the front door because EMS personnel are trained to look there first.
Family members can double-check to make sure that the CC/DNR Order verification form is filled out completely. It may not hurt to send a copy to the local fire department with a request that they advise if for any reason it will not be honored. Each of these steps will make it more likely that an individual's wishes will be honored in an emergency.
* Pseudonym chosen by author.