Honoring the wishes of the dying

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This is awful! What does your facility have in place to safeguard against this? Honoring the wishes of the dying | courier-journal.com | The Courier-Journal

At 95 and in failing health, Eva Karem was prepared to die with dignity and in peace at the Louisville nursing home she and her family had selected.

Instead, the frail, 80-pound widow spent her final moments in an ambulance with a tube in her throat and an emergency medical worker trying to resuscitate her.

Despite a clear directive in her medical records that she did not wish to be resuscitated, the staff at Jefferson Manor called Emergency Medical Services when Karem became unresponsive, said her son, John Karem, who arrived at the nursing home in time to witness EMS' efforts to revive his mother.

Now his mission is to try to prevent that from happening to anyone else.
"This is my promise to my mother," said Karem, whose mother died Feb. 20, 2008. "I want to get something done."

Karem has joined a group of advocates, state officials and nursing home representatives who are trying to agree on a solution to a problem with resuscitation orders that advocates say has occurred at least several times in recent years. At Karem's request, the group was organized by Rep. Bob DeWeese, R-Louisville, a retired physician.

"This is a situation I think we can make better," DeWeese said.

Though the state didn't have exact numbers, it has cited a handful of nursing homes in recent years -- either for failing to resuscitate someone who had not filed a so-called Do Not Resuscitate order or attempting to resuscitate someone who did, state officials said.

In March, Jefferson Manor was cited for a deficiency over the Karem incident, according to records provided by the state Cabinet for Health and Family Services, which licenses and regulates nursing homes.The administrator of Jefferson Manor did not return calls seeking comment.

Sadiqa Reynolds, inspector general for the cabinet, said the state could require a change in procedures by enacting a regulation and is looking to Karem's group for a proposal.

"I think there's room for improvement," Reynolds said. "If there could be a better system, I think we could support that."

Karem, who runs a sports media business, said he's already proposed a solution -- having residents with a DNR order on file wear a purple wristband -- a color some hospitals around the country have adopted for patients who do not want extraordinary efforts taken to save their lives.

When staff members see someone with a purple wristband, a quick check of medical records, which is supposed to be done anyway, will show whether a valid DNR order is on file, he said.

"How simple is that?" Karem said. "If someone has a purple wristband, there's no confusion. You would think the nursing home associations would embrace that."


Instead, Karem said, at the first meeting of the advocates' group formed to study the problem, representatives of Kentucky's two major nursing home associations expressed doubts and said they want more discussion and research.

"They're filibustering to some extent," said Karem, who said the only decision at the May 12 meeting was to call for another meeting of a smaller work group to study the matter. "There's no reason not to do this."

Officials with the nursing home associations said they aren't sure if wristbands are the best solution, but their goal is to come up with one that works.

"We are very interested in this as well," said Ruby Jo Lubarsky, president of the Kentucky Association of Health Care Facilities, which represents about 245 nursing and personal-care homes.

As for Karem's wristband suggestion, "This work group will certainly look at that," Lubarsky said.

Nursing home officials said they aren't necessarily opposed to wristbands but want to review existing procedures first to determine whether there's a better way to enforce them before adding another element.

Tim Veno, executive director of the Kentucky Association of Homes and Services for the Aging, with about 150 member facilities, said his association wants to work with Karem and others to undertake a thorough review of the matter before agreeing to any change.

"We absolutely sympathize with this tragedy that Mr. Karem has had," he said.

"I'm not sure you ever can eliminate all errors," Veno said, "but we do want to help deal with it."


Bernie Vonderheide, president of Kentuckians for Nursing Home Reform, said he is skeptical of industry claims to support additional measures.

But Vonderheide, who attended the May 12 meeting with nursing home representatives, said he's willing to give them a chance.

"I want to believe it and work with them before I'm convinced they're just blowing us off," Vonderheide said.

Still Vonderheide -- whose association has battled unsuccessfully for years to persuade Kentucky nursing homes to adopt minimum staffing levels -- said he is dubious.

"In my experience, the industry is very negative to any suggestion they feel might cost money or add to the many regulations they already have," he said.

Louisville lawyer Martha Marie Eastman, who is not part of the group studying the matter but represents residents and families who allege problems with nursing home care, said she's seen an increase in complaints from clients about resuscitation orders that were ignored.

She attributes the increase to high staff turnover at nursing homes, staff shortages and confusion among workers about what they are supposed to do in such situations.

She said a wristband on residents who don't want resuscitation would be an immediate alert to staffers in a crisis -- reminding them to check the medical records before initiating resuscitation.

"It would be right there on the wrist," Eastman said. "If I were a staff person, I would want it."

Eastman said families often are traumatized by instances where a resuscitation order was ignored.

"It really is upsetting to family members," she said. "They trust the nursing home. When something like that happens, they question all of the care."

Karem said he remains haunted by the image of his mother, unconscious in the ambulance as the emergency medical worker performed CPR.

Instead of dying in her bed with family at her side, as she had wanted, the elderly woman was taken by ambulance to a hospital emergency room where she was pronounced dead, he said.

"I'm hoping in my heart of hearts she didn't feel any pain," Karem said. "If I didn't witness what happened that night, I wouldn't be working on this."