Do Not Resuscitate Orders

For many, 'Do Not Resuscitate' too painful to discuss
Relatives, doctors often delay in offering patients the option

By Patricia Wen, Globe Staff | December 3, 2007

CHELMSFORD - The gray official form, labeled "Do Not Resuscitate," lay for months at the bottom of Linda Batson's dresser drawer. She had wanted her ailing 85-year-old mother to sign it.

Last Christmas, Batson's mother, suffering from a terminal liver disease, had nearly collapsed inside St. Mary's Church. She had later told her only daughter that she was ready, if her heart stopped, to "join Dad." Batson knew that a DNR order would make clear to medical workers her mother's desire to forgo emergency measures, and relieve her of the burden of communicating those final wishes.

Batson had trouble raising the subject to her mother, however. At Batson's request, her mother's longtime doctor had discussed the DNR form during an office visit in June, then handed them the gray document saying, "Go home and think about it." But, as the two watched soap operas and took strolls in the following weeks, Batson put off the talk. Her mother grew weaker.

One evening this fall, she turned to her daughter.

"Linda's going to make supper," she said matter-of-factly from her living room chair.

"I'm Linda!" Batson replied.

"No," her mother said. "You're my mother."

For families facing the impending death of a loved one, few topics trigger more anguish than the Do Not Resuscitate order. The subject can be so painful that relatives and doctors wait too long, until the patient's mental capacity wanes and the tough decision is left to family members. There is little ambiguity in a DNR order: Emergency medical staff must withhold CPR and other life-reviving treatments if the patient's heart or breathing stops, allowing death.

"This is the part of medicine where there's finality," said Dr. Wayne Saltsman, the Lahey Clinic geriatrician for Batson's mother, Lee Russell, and her late husband. "That's why these discussions are so hard to have. We're talking about the end."

The reluctance among doctors and family members to initiate these talks runs so deep that, three decades after DNR orders were introduced, their use remains spotty. Now the Department of Public Health is exploring whether to adopt a new kind of form, used in six other states, that could make the process easier. Called POLST (Physician Orders for Life-Sustaining Treatment), the document asks for a patient's preferences on CPR, but also allows patients to make decisions about use of other life-sustaining interventions, such as intravenous fluids, antibiotics, and breathing machines.

The order would have to be signed by a doctor or nurse practitioner, and the bright pink form is designed to be carried by a patient and honored at hospitals and nursing homes, as well as by emergency medical technicians.

With a Massachusetts DNR order, in contrast, patients' wishes must be redocumented each time they enter a new hospital, nursing home, or other medical facility, and a physician's signature is required each time.

Also, a special DNR must be obtained for the home, if the patient wishes to die there without the interference of EMTs responding to a 911 call.

"We can't withhold CPR if the Do Not Resuscitate order is not filled out completely," said Lieutenant Christopher Stratton of Boston's Emergency Medical Services.

In some cases, he said, his ambulance crews have had no choice but to try to revive an elderly patient in cardiac arrest, even though family members insisted their loved one wanted to be left alone or they showed incomplete, or unsigned, DNR forms.

Stratton said properly completed DNR orders for the home should be placed prominently, such as on the refrigerator door.

A DNR order is typically discussed only with the elderly and patients with serious chronic conditions. Among end-of-life documents, it is the least well known. According to a 2005 survey of Massachusetts residents over the age of 50, roughly one out of three had never even heard of DNR orders. Yet, nearly everyone was familiar with healthcare proxies (a legal document that authorizes a person to make medical decisions for someone who is incapacitated) and living wills (written guidelines for end-of-life care), though that document is nonbinding in Massachusetts.

Saltsman, who tries to raise the subject of DNR orders for all his elderly patients, said families ignore them at considerable risk. For the elderly and very sick, aggressive CPR often breaks fragile bones, and causes internal bleeding.

One national study found that less than 5 percent of chronically ill elderly patients revived by CPR live long enough to be discharged from the hospital, and the fraction that survive are a far weaker version of themselves, often neurologically impaired.

"There is a strong likelihood they are not the same person as they were before," Saltsman said.

Difficult image to bear

For Batson, it was the image of her frail mother being revived and connected to a breathing machine without being able to speak that caused her to dwell on a signed DNR order. She and her brother were committed to having their mother spend her final months in her home, not a nursing home. They had to make sure their mother's wish to die without CPR would be honored under all circumstances, including if an EMT arrived in her Chelmsford apartment.

When autumn came, Batson had come to the dreaded realization that she - as healthcare proxy - might be the one to have to sign the order. Her mother's mind was clearly declining precipitously, especially after a brief hospitalization in July for chest pains. By late summer, Batson was living full time with her mother, chasing away fictitious cats that her mother claimed were roaming the apartment. Batson also had put up "No Children Allowed" signs outside the bedroom door, playing along after her mother complained that children were hiding under her bed.

Batson regretted that she had not pulled the DNR form out of the drawer, pushed away her fears, and talked directly with her mother about the document. Her mother had not raised the topic either, and at times Batson wondered whether her silence had some kind of meaning. But then she would remember that when her father was dying, her mother had been clear that she wanted to go peacefully. So Batson said nothing, wanting her mother's dwindling days to focus on happier times.

She often flashed back to the mother of her past. Married to Edward Russell, the Tennessee native raised two children in Lexington while working full time as a lab technician. A slender woman with brown hair, she was a talented seamstress who tended the garden with her husband. She was at a loss when her husband of 61 years died in 2005, though she stayed busy keeping up with the lives of her two grown children, three grandchildren, and four great-grandchildren.

Throughout the past year, it was so hard to bring up any topic that would remind Batson - and her mother - of the end. But having worked in elder care, Batson has always believed the elderly deserve the right to control their own end-of-life medical decisions as much as possible and sign their own DNR forms.

"I wished I had done it earlier," she recalled. "We should have just done it."

On the Monday morning before Thanksgiving, Saltsman rang their apartment buzzer, responding to Batson's request to make a house call on her mother.

When the doctor greeted Russell, who held a walker, she recognized him instantly, letting out her trademark giggle. Batson said her mother has always adored Saltsman, chair of Lahey's geriatric medicine department, usually responding to any encounter with him "as if Elvis had arrived."

For at least a half an hour, he talked with Russell in the living room, and he quickly detected her mind was not all there. She could not remember that Thanksgiving was fast approaching. Batson's mother also asserted that her brother was in the apartment, but he was nowhere in sight. Also, she talked about longstanding plans to move to a new home, even though there were no such plans.

Russell's liver condition, called primary sclerosing cholangitis, can cause a troubling buildup of toxins that creates mental confusion.

"My concern is whether she has the mental capacity to make informed decisions," he said later. "She did not have it." This meant Russell was not legally able to sign the DNR form.

Saltsman left Russell in the living room with her home health aide, and joined Batson in the kitchen. He had long believed a DNR order was the right thing for Russell, and now it was entirely up to Batson. She had already given this topic so much thought, and she was sure her mother would not want to be revived with chest compressions and plastic tubes.

At the kitchen table, Batson told Saltsman she was ready to complete the DNR form. The doctor signed, and then Batson added her signature.

The document is now taped to the refrigerator door.

Boston Globe