When 911 is called and the emergency medical technicians (EMTs) arrive, the first thing they do is quickly look for a DNR, or Do Not Resuscitate order. They will check for a bracelet or necklace that indicates the wearer has a DNR, or they will check the refrigerator door for a note that indicates a DNR might be in a container stashed inside. If there’s a DNR, the EMTs need to know that before they go to work. Once started, the potentially life-saving measures they provide can’t be stopped until the patient either recovers or dies, or the DNR orders are presented.
“There are far too many stories out there from people who wake up tethered to tubes and machines and say ‘I was supposed to die,’” says Heidi Garvis, an Aging Life Care ™ Consultant and Certified Senior Advisor based in Northern Virginia.
“My concern is that doctors and patients don’t have the conversation about what the person wants in an emergency situation soon enough or before the crisis happens,” she says, “Most people say they don’t want extreme measures taken. They don’t want to be resuscitated if their heart stops. They say just let nature take its course, but often that is not communicated.”
Heidi believes the main reason patients and their health care providers have not discussed what kind of care a person wants is that the health care system has changed so dramatically over the past few decades. “Our health system was built at a time when we got sick and died,” she reminds. “Today, people don’t just die of a heart attack or cancer. They live longer and they go downhill slowly. Some parts of the health care system haven’t caught up with that fact.”
Statement of Patient Wishes
She also believes health professionals need to know what kind of care an individual does or does not want in a variety of different situations. That, basically, is the idea behind advance directives, also known as living wills, which are signed legal documents that define the types of treatments a person does or does not wish to receive, especially for those with lingering or terminal conditions.
A POLST, or Physician Order for Life-Sustaining Treatment, executes the wishes outlined in an advance directive. A POLST is not a legal document. It is an agreement between a patient and/or family members and a physician that is meant to ensure that seriously ill or frail patients can choose the treatments they want or do not want, and that their wishes are documented and honored. The National POLST Paradigm offers an approach to end-of-life planning based on conversations between patients and their families and health care professionals.
In some states, POLSTs are included as part of the advance directive. Though these have different names in different states (in Virginia, for instance, the term is POST for Physician Orders for Scope of Treatment and in Texas, called MOST, or Medical Orders for Scope of Treatment), POLSTs are regarded as orders from the physician, similar to a prescription. A POLST is filled out by a physician and, as such, is intended to ensure that, in case of an emergency, you receive the treatments you want and not the treatments you don’t want.
The short version, the DNR, may be, but does not need to be, part of an advance directive or living will, both of which are aimed at end of life situations. DNR is not legally binding but is an agreement between you and your physician, not you and your lawyer, as many believe, Heidi says. Indeed, she adds, someone in otherwise good health who suffers a heart attack may very well wish to be resuscitated.
Your physician can include a DNR as well as a DNI (or do not intubate) in your medical record, and if you do have an advance directive, the DNR and DNI instructions should be mentioned there, too, even though in an emergency situation the EMT is not going to read through your advance directive to look for DNR instructions or search for it in your house if it is not in plain view.
A quick internet search will yield the forms and instructions needed for different states. Useful search terms include advance care directives, living wills, DNR, and POLST, but the Conversation Project, Five Wishes, the American Bar Association, and the Center for Practical Bioethics are other sites to check for appropriate forms and further information.
Advance directives and POLSTs have been around for about 30 years, but most people still don’t know about them and have not discussed them with their health care providers. “This is not a discussion that should be limited to the elderly,” Heidi advises. “Doctors don’t have a crystal ball. They don’t know when their patients might die.”
Leaving nothing to chance, Heidi has prepared for herself her own 15-page advance care directive covering all kinds of possible life-threatening situations and identifying both the kind of care she would like and the care she does not want in each situation.
“Many people say they just want to die in their sleep, but the fact is that less than 30 percent do die in their sleep, and that’s where advance directives and DNR orders come into play,” she says. And that’s also where the refrigerator door or the bracelet comes into play, because those are the places EMTs are told to look before they start emergency care. “What people don’t understand is that in a crisis situation, no one is going to look in a safe or a locked drawer,” she says. “Plain sight is what works.”
Heidi also thinks television shows mislead about the life-saving benefits of CPR and other heroic measures. “CPR is tricky and does not have the success rate shown on television. In reality, 40% of those who get CPR in a hospital survive, but only 10-20% survive long enough to be discharged,” she reports.
Other complications of CPR can include broken ribs, possible damage to the lungs, and lack of oxygen to the brain, which, in turn, can lead to a stroke or permanent brain damage. Any of these potential complications can impact the quality of life for the CPR survivor.
Heidi used her own extensive advance care directive to launch the discussion with her family about the kinds of care they would like and what they don’t want. “I think everyone needs to have this discussion,” she says. “It starts with the bottom line question: ‘If my heart stopped, [if] I stopped breathing, would I want to be resuscitated?'”
In theory, this discussion, with health care providers included, is supposed to happen during the last years of life but, as she asks, “how does anyone know when that is?” She suggests having the advance care conversation sooner rather than later.