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 health care counselor," the gentle voice on the other line says.
Who? You have no idea who this person is. But it's not a typical telemarketer.
"I speak with people who are going through really difficult medical situations," she continues. "It's really different what we talk about depending on what the diagnosis is or where the treatment is at."
Kate Schleicher is a licensed clinical social worker. She knows as little about you as you about her. Except she knows your phone number, your insurance provider and that you are probably not doing so well.
"The main goal with us talking is to make sure that you know what's important to you and that your care aligns with what's important to you, so that things go the way you want them to," she says.
Schleicher, 27, explains all this from a cubicle in an office in Cherry Hill, New Jersey. A white noise machine muffles conversations from other counselors in nearby cubicles. All are talking to patients or with permission, family members, facing an advanced illness.
Schleicher is one of some 50 counselors at a company called Vital Decisions, based in New Jersey. Insurers contract the company to figure out which of their beneficiaries are seriously ill. Federal privacy rules permit this for business purposes. Counselors first reach out by sending a letter, though people rarely respond. They then call to make their pitch, offering free counseling services, all conducted by phone on behalf of the beneficiary's insurance plan.
"When you say that getting better is the most important thing on your mind, what does that look like for you. How would that be different from now?" Schleicher asks a man in Rhode Island over the phone on a recent afternoon.
"Breathing. Ok," she repeats back. "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 Living Well program, she says, is to build a relationship over the phone, so he might be comfortable discussing his situation and his goals, so he's empowered to communicate those things with others.
An often avoided topic
Vital Decisions handles some 12,000 cases each year, working through about a dozen health plans with beneficiaries across 50 states, according to CEO Mitchell Daitz.
Daitz and others in the health field working with people who are very ill say critical conversations about end-of-life care just aren't happening enough. Doctors even avoid the topic. That can lead to inconsistent care, says Daitz, who previously assessed cancer treatment patterns at a health research firm.
"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. So you don't choose and you're along for the ride, and that's when the trouble starts."
To underscore this reality, Chief Operating Officer Colleen Marshall goes over a recording of a real client, replayed with his permission, talking to another counselor.
"I have a brain tumor, a malignant brain tumor. I've been fighting it for over a year now," the man tells the counselor. "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."
"Jeez. That's a lot. I'm so sorry to hear that," the counselor responds, in a consoling voice.
Over the course of minutes the conversation goes from one between complete strangers to one of raw intimacy. The man confides information he may have never disclosed to anyone before. His meds, as one example, make it difficult to function and do simple things he really liked being able to do - having a beer, being social.
"I miss that," he says. "Sitting with friends around the table."
The two talk about what he does and doesn't understand about the effectiveness of his medicine. He's not sure. They go over the kind of information he might want to clarify with his doctor.
"...You can control how much treatment you want and how you want symptoms to be managed as it does get worse," the counselor says.
"But I can't talk that way with my son in the room," he tells her.
"Oh ok. Because he says 'dad keep going, I don't want you to give up,'" says the counselor.
"Yep," the man replies.
Marshall says it wouldn't surprise her if the son in this instance actually wanted the same thing that the dad wanted.
"But because they're not talking about it, it's going to continue this way. It always does," she says. "They'll keep fighting, doing treatments because they're not talking about what it means if they don't."
Marshall says it's this disconnect that gives Vital Decisions a unique place in health care right now to provide such phone counseling. Daitz says jumpstarting unbiased, honest discussions around end-of life care, early on, could improve the quality of life for patients with advanced illnesses and their families in those final weeks and months together.
That's the thinking behind the company, formed in 2008, and a wave of other initiatives being developed by insurers, providers and other outside groups. It wasn't popular at first, says Daitz, recalling rumors of death panels and the uproar over national attempts to reimburse doctors for end of life conversations and advanced planning with patients from a few years ago.
"No one ever accused me of having good timing," he says. "2010  was what we refer to as the dark period."
Such topics are still sensitive, but Daitz says insurers and patients are more open to addressing this now. The effort to reimburse doctors for these end of life conversations recently made a comeback in Congress. Philadelphia's largest insurer, Independence Blue Cross, went with Vital Decisions three years ago, after reviewing a few other companies that offer similar services.
"If the health care system dealt with these issues and did it in a way that patients felt comfortable, that the appropriate communications were occurring, I think there would be no need for Vital Decisions or other third parties to get involved," says Dr. Donald Liss, clinical director at Independence Blue Cross.
"By virtue of the fact these communications aren't happening and certainly aren't happening in a way that patients feel comfortable, promoting that communication is a good thing."
Vital decisions works with about 100 of Independence Blue Cross' Medicare Advantage Beneficiaries each month, according to Liss.
Besides this program, he says insurers are also increasingly looking to the medical team approach, involving the nurse and social worker, to facilitate conversations and higher quality care in general.
There's also a greater acceptance of palliative care.
Reduced health care costs
Daitz says when people with advanced illnesses do participate more fully in the decision making process, there's another byproduct: reduced costs.
The goal, says Daitz, is for patients to receive care in those final months that aligns with their priorities and preferences, even if that's the most aggressive treatment available. But "turns out when you're able to have more effective communication, more effective decision making amongst the family and physicians, an individual often has values and priorities that are met by more comfort care, palliative care and care of that nature which is delivered much earlier in the disease experience."
And as it turns out, that care is often less expensive.
Some other research backs this. A 2008 study led by researchers at the University of Pennsylvania found that of nearly 200 patients undergoing aggressive treatment for cancer, about ten percent said they didn't want the treatment.
"I can't tell you how many times I talk to a patient who doesn't want to go through surgery or chemo but doesn't want to tell the oncologist that because the patient doesn't want the doctor to think she doesn't trust him. On the other hand, the oncologist doesn't want the patient to think that he's giving up on her," says lead author, Dr. David Casarett, who directs Hospice and Palliative Care at Penn Medicine. "So nobody has these conversations when everyone should be having them much earlier and much more often."
By Vital Decisions' own analysis, retrospectively comparing participants and non-participants on the same insurance plan, their program has led to an average of $10,000 in health care savings per patient in those last months of life.
"That's $100 million in savings to the health care delivery system for just the patients we're working with in 2014," says Daitz. "So as a byproduct of this process, the entity responsible for paying for the care also receives some benefit."
Challenges and concerns
At first glance, some question the counseling approach. For Dr. Lauris Kaldjian, director of bioethics and general medicine at the University of Iowa Carver College of Medicine, he has concerns about the social worker, patient and family never actually meeting, and more than that, about the depth of their relationship.
"Because if you don't have enough knowledge about what's happening to a patient, it would actually be irresponsible to pretend to have a discussion that depends upon such knowledge," says Dr. Kaldjian.
He also says conversations about end of life decisions are hard to keep totally neutral.
On first reaction, Casarett with Penn thinks the concept is "neat." He welcomes any creative ways to get at these important conversations, but cautions that a heightened public sensitivity to such issues, as seen in 2009, make transparency all the more important for the viability of such a company.
"That's one challenge they'll face, making sure it's unbiased, particularly if you have Medicare Advantage Plans paying for it," says Casarett. "It sounds benign enough, and I'm sure it is, but it'll be really important that whatever assisted advance directive device we [or others] use is transparent enough so that any bias can be clearly visualized and evaluated and discussed."
Casarett also thinks the model may be venturing into new territory in terms of that patient relationship.
"Does somebody answering the phone have the same ethical obligations to families, patients that the physician does? And those questions become particularly interesting if those organizations are paid by insurance companies," says Casarett. "That doesn't make them unethical, but it does mean that their obligations may be different."
For Dr. Robert Arnold, who heads the palliative care division at the University of Pittsburgh Medical Center and some initiatives aimed at better training medical providers on end of life issues, insurers may be well situated to address this disconnect in communication in the health system, at least while providers work through their own discomfort and improve their skills. He sees companies like Vital Decisions as part of a larger trend.
"I know there's a number of good companies out there trying to do this, so this is better than what patients have currently been getting," he says.
The counseling approach
Colleen Marshall, Vital Decision's chief operating officer, says counselors aim to be as neutral as possible, when it comes to facilitating patient conversations and decisions.
"What we want to measure is did the person get what they wanted," says Marshall. "We would never want there to be a bias about care decisions."
The model is proprietary, and licensed counselors undergo a special training upon hire. Depending on the situation, where patients are at in their illness and own readiness to have these discussions, the approach may incorporate aspects of motivational interviewing, stages of change and other psychology techniques.
Counseling sessions may span months, with individual sessions lasting up to an hour. They involve five target areas, says Marshall, including communication with doctors, communication with family and quality of life priorities all revolving around a patients' care and values.
For individuals with a clear idea of what they want, Marshall says counselors can help them plan, do role plays, for example, of conversations they'd want to have with a doctor or loved one. Others may have limited understandings of documents like living wills and advanced directives.
All calls are recorded, says Marshall, so they can listen back and assess them. They also send them through an outside network, to assess any potential bias. The company has an advisory board with outside experts they invite to review their practices.
Leveraging the phone
Back in her cubicle, Kate Schleicher, continues her calls.
"In a lot of ways, that's my job, I can be that person who's is going to sit that and listen and talk you through that," she tells the individual on the other line.
She checks in with another client, the daughter of a patient whom she's never directly talked to. The woman says she finally hired a full-time nurse.
"It sounds like you can go back to being your dad's daughter," Schleicher responds.
The phone, by its very nature, has limitations. One can't pick up visual cues or see what's going on in the room. But Schleicher and others at Vital Decisions think they may, in some ways, have an advantage when it comes to facilitating these challenging conversations. Through the phone, counselors can serve as anonymous, unconditional support, while the health system tries to figure out how to do a better job dealing with all of this.
"I feel like people have a chance to dig deep ino things they've never talked about."
And of course, if people don't want to talk.
"It's the phone," she says. "You can always hang up."
This disclosure: Independence Blue Cross is an underwriter for The Pulse.