Imagine you're at home. Maybe that's in Florida, Wisconsin, Rhode Island, wherever. You have cancer. You just had another round of chemo, and the phone rings.
"My name is Kate. I'm a healthcare counselor," the gentle voice says from her cubicle in Cherry Hill, N.J.
This is no telemarketing call … it’s about the end of your life.
Kate Schleicher, 27, is a licensed clinical social worker, who knows almost as little about you as you do about her. Except she knows your phone number, your insurance provider, and that you are pretty sick.
Schleicher is one of 50 social workers at a company called Vital Decisions. After sending a letter (people rarely respond) counselors essentially cold-call to offer what they describe as “nondirected” end-of-life counseling. The company gave a reporter permission to listen to and record the social workers' side of some of these calls.
"When you say that getting better is the most important thing on your mind, what does that look like for you?" Schleicher asks a man in Rhode Island.
"Breathing. Ok," she repeats back, as he describes what a struggle it has become for him. "I also hear concern from you that I don't think that's necessarily going to happen," Schleicher continues. "Has someone told you that, or is that your own feeling?"
The call lasts about 15 minutes. Schleicher asks if it's ok to follow up, in a month or so. The hope of this program, she says, is to build a relationship over the phone, so he might be comfortable discussing his situation and his goals. Then he’ll be empowered to communicate those things with others, including his family and his doctors. He could also choose to allow the counselor to talk to his doctors or family directly. It’s paid for by insurers and federal privacy rules permit this for business purposes.
CEO Mitchell Daitz believes critical conversations about end-of-life care just aren't happening enough and the company's goal is to foster them.
"The accepted norm in terms of the role of the individual who's going through this advanced illness experience is to be passive and be along for the ride, not to take charge, not to take control and ask for help," says Daitz, adding that navigating care and an individual's priorities can become increasingly difficult as a disease progresses. "So when you're faced with a set of choices, that none of which represent a really good choice, you become ambivalent."
To underscore this reality, here’s a partial transcript of another patient-counselor conversation. In this case, the patient gave permission for a reporter to hear and broadcast his side of the conversation:
"I have a malignant brain tumor. I've been fighting it for over a year now," the man tells Ariana Noto. "The meds make me dizzy and when I'm that dizzy I can't drive, I'm trapped in the house, I'm going nuts."
"That's a lot. I'm so sorry to hear that," she responds.
Over the course of minutes the conversation goes from one between complete strangers to one of raw intimacy. The man confides information he may not have told anyone else. His meds make it difficult to function and do simple things like sitting around a table with friends, having a beer.
The two talk about what whether he understands about the effectiveness of his medicine. He's not sure. They go over what he might want to clarify with his doctor.