by Nancy Valko, RN
When I first became a registered nurse in 1969, ICUs (intensive care units) were still new. The first one I worked was set up in the former visitors’ lounge. We learned how to read EKGs (heart tracings) by using a book. By the early 1970s, I worked in a surgical/trauma ICU where we used sophisticated ventilators. We were able to get almost all our patients off ventilators by weaning—the process of gradually lowering ventilator support until the patient can breathe on his or her own. The medical definition of informed consent requires understanding “the purpose, benefits, and potential risks of a medical or surgical intervention….”
However, in 1976, I was shocked by the Karen Quinlan case. It changed everything. Karen, 21- years old, had suffered brain damage after apparently taking drugs at a party. She was hospitalized and placed on a ventilator. Thought to be in a “persistent vegetative state,” her adoptive parents asked that her ventilator be removed. The doctors disagreed. Eventually the New Jersey Supreme Court allowed removal of the ventilator on the grounds of an individual’s right to privacy. Shortly afterward, California passed the first “living will,” an advance directive law that permits refusal of “life support” in the event the signer is incapacitated.
Ironically, Karen lived 10 more years because, as some ethicists criticized, she was weaned off the ventilator instead of it being abruptly stopped.
My experience with ventilators became personal in 1983 when my baby daughter, Karen, died on a ventilator before she could get open-heart surgery. One young doctor had offered to take her off the ventilator to “get this over with.” I reported him to the chief of cardiology who was furious with him.
In the 1990s, I returned to working in an ICU and was shocked by the development of the “terminal wean” for some patients on ventilators. Often the families were told that there was no hope of a “meaningful” life. The terminal wean involved abruptly disconnecting the ventilator and “allowing” the patient to die. I brought up at least trying gradual weaning and oxygen as we did for the other patients on ventilators, but I was ignored.
After retiring from bedside nursing, I was asked to be with an elderly man on a ventilator who had suffered a massive stroke. The family was told that he would never have any quality of life and would die soon. I tried to bring up gradual weaning, but some members of the family were adamantly opposed. When the ventilator was stopped, I held the man’s hand and prayed while he gasped for air and turned blue. I asked the nurse to at least giving him oxygen for comfort, but she ignored me. Instead, she gave frequent doses of morphine intravenously until the man’s heart stopped after 20 minutes. I’m still haunted by this man’s death.
INFORMED CONSENT?
The medical definition of informed consent requires understanding “the purpose, benefits, and potential risks of a medical or surgical intervention….” But most people, when they sign a medical advance directive, have only a vague understanding of the ventilator and very little information about this often life-saving medical intervention.
As a nurse, I found that most people—especially the elderly—tend to automatically check off ventilators without understanding that a sudden problem with breathing can come from treatable conditions that don’t require long-term use of a ventilator, such as asthma, drug overdose, pneumonia, and some brain injuries.
In some circumstances, such as certain spinal cord injuries and late-stage neurodegenerative diseases like amyotrophic lateral sclerosis, the ventilator is necessary long-term to live. People like Christopher Reeve and Stephen Hawking have used portable ventilators to continue with their lives. Some people with disabilities use small ventilators only at night.
It is important to know that ventilators move air in and out of the lungs but do not cause respiration—the exchange of oxygen and carbon dioxide that occurs in lungs and body tissues. Respiration can occur only when the body’s respiratory and circulatory systems are intact. A ventilator cannot keep a corpse alive. It is important to know that ventilators move air in and out of the lungs but do not cause respiration… Respiration can occur only when the body’s respiratory and circulatory systems are intact. A ventilator cannot keep a corpse alive.
It’s also important to know that not all machines that assist breathing require the insertion of a tube into the windpipe. Non-invasive positive-pressure ventilation (like the BiPap) allowed my elderly friend Melissa to use a face mask to assist her breathing until antibiotics cured her pneumonia.
WEANING FROM A VENTILATOR
Many patients are easy to wean from a ventilator, but some are more difficult.
Years ago, I cared for an elderly woman with Alzheimer’s who needed a ventilator when she developed pneumonia. She had made her son and daughter her medical decision makers in her advance directive. When the woman improved, the doctors found it very difficult to wean her from the ventilator. They spoke to the family about removing the ventilator and letting her die. The daughter agreed but the son was adamantly against this.
The woman was totally awake after the sedation to keep her comfortable on the ventilator was stopped. She was cooperative and made no effort to pull out the tube in her windpipe. She just smiled when asked if she wanted the ventilator stopped.
I knew some great respiratory therapists in the past who were able to successfully wean difficult patients from ventilators. At my suggestion, she was transferred and a week later we were told that she was successfully weaned. About a year later, I encountered the woman again when she was recuperating after routine surgery. Although her Alzheimer’s disease was unchanged, she was doing well in an assisted living residence.
THERE ARE NO GUARANTEES
As a student nurse, I was initially intimidated by ventilators. As I learned how to use them and saw the constant improvements, not only in the technology but also in our care of patients on ventilators, I came to see ventilators as a great blessing when needed.
While we are never required to accept treatment that is medically futile or excessively burdensome to us, sometimes this can be hard to determine in a crisis. Most of my patients on ventilators recovered, but some could not be saved. We were surprised and humbled when patients with poor prognoses recovered while others who seemed to have a better chance died unexpectedly. There are no guarantees in life or death.
That is why my husband and I wrote advance directives that designate each other as our decision maker with the right to have all current options, risks and benefits of treatment fully explained.
We don’t want an advance directive that could be hazardous to our health!
Contact our office for information on preparing an Advanced Directive to protect yourself when you are unable to speak for yourself or visit http://www.patientsrightscouncil.org/