Study: Paperwork Confusion Can Affect Life-Sustaining Treatments

The forms are intended to help honor the wishes of frail elderly or terminally ill patients who cannot speak for themselves.

However, patients don’t always fill them out completely, which leads to confusion about their preferences regarding life-sustaining treatments.

Published in September in the Journal of the American Medical Directors Association, the study is titled “Decisions by Default: Incomplete and Contradictory MOLST in Emergency Care.”

“We called it ‘Decisions by Default’ to make patients aware that if they don’t make a decision about a specific life-sustaining treatment, then, in an emergency, they will most likely get the most aggressive treatment available,” says Brian Clemency, DO, MBA, associate professor of emergency medicine and first author on the paper.

The study was conducted in the busy Emergency Department of Erie County Medical Center — a partner hospital of the Jacobs School of Medicine and Biomedical Sciences — where Clemency is an emergency medicine attending physician.

“In emergency medicine, we are trained to do everything we can to prolong life,” Clemency says. “The goal of this paper is to help us as emergency medicine physicians honor our patients’ wishes as much as possible.”

The study’s focus was not on the patients themselves, but on the forms they, or their proxies, had completed before their emergency.  

MOLST forms were collected from patients arriving at the emergency department. They cover whether patients request cardiopulmonary resuscitation, do not resuscitate (DNR) orders, intubation, hospitalization, intravenous fluids, feeding tubes and antibiotics.

Of the 100 forms collected, 69 percent were incomplete with at least one section left blank. That may compel emergency medicine providers to perform interventions the patient would not have wanted.

“We want to do what the patient wants,” Clemency explains, “but if you don’t tell us what you want, we’re forced to assume you want ‘everything’ done.”

Deborah P. Waldrop, PhD, professor in the UB School of Social Work and a nationally recognized expert on palliative care, is senior author on the paper.

She has spent her career working to provide better options to families dealing with end-of-life issues. The research demonstrates a need for greater training among primary care providers, Waldrop says.

“Primary care providers are having these difficult conversations with their patients. More education and training are needed to help them be comfortable guiding people with serious illnesses to effectively communicate their wishes about life-sustaining treatment,” she says.

That includes going over any inconsistencies in patients’ responses, Clemency notes.

For example, if a patients says they don’t want any life-saving interventions but they do want a breathing tube inserted, that discrepancy may reflect a lack of understanding on the patient’s part and should be questioned by the physician.

“I think the doctor’s job is to guide the patient through it and ask them about the implications of their decisions,” Clemency says.

While life-sustaining treatment forms and the conversation about them are major steps toward improving end-of-life care, there’s room for improvement, Waldrop stresses.

“This research shows that to be effective in reflecting patients’ wishes, these forms need to be filled out completely and without contradictory orders after an informed conversation between a primary care provider and the patient,” she says.

“Our hope is that this paper will improve communication between patients and providers, better informing the end-users — the emergency medicine doctors who typically meet these patients when they arrive at the emergency department at 3 a.m.,” Clemency adds.

Emergency physicians aren’t the only ones who need more clarity, Clemency notes. Families need it, too.

“You already have many stressors when an elderly parent is ill,” Clemency says. “But if the parents’ wishes aren’t clearly articulated, you might have multiple children, all of whom have the best of intentions and each of whom has a different understanding of what that parent wanted.

“Patients and their families can only benefit when the patients’ wishes are clearly articulated.”

UB co-authors are Jeanne M. Basior, MD, clinical associate professor, and Heather A. Lindstrom, PhD, research assistant professor, both in the Department of Emergency Medicine.

Lindstrom’s primary appointment is in the Department of Epidemiology and Environmental Health in the School of Public Health and Health Professions.

Colleen Clemency Cordes, PhD, of Arizona State University also is a co-author.