WARWICK – What are your wishes for care and treatment at the end of your life?

It’s never an easy conversation to begin. It’s often one that gets avoided – much like “crossing the big river denial,” as the old joke goes.

But Care New England, under the leadership of Dennis Keefe, president and CEO, has put its foot into the sometime murky waters, moving forward into the second stage of being a pilot program for The Conversation Project.

The effort, begun by former Boston Globe columnist Ellen Goodman, seeks to engage with families, patients and caregivers in frank conservations about end-of-life issues – before the crisis stage.

It is a conversation that does have cost implications – but it also represents a change in thinking about the way that care is delivered in a more patient-centric way, where the patient’s wishes are respected in the context of medical decision-making.

Under Keefe’s leadership, Care New England has positioned itself to be a hospital system that is “conversation ready” – rolling out The Conversation Project as a pilot program for staff, the first hospital system in Rhode Island to do so. The potential is there for Rhode Island to become the first conversation-ready state, according to hospital officials.

ConvergenceRI recently sat down with Dr. Kate M. Lally, the medical director of palliative care for Kent Hospital and hospice medical director at the VNA of Care New England, and with Laurie Sparks, the director of Population Health Management at Care New England, to talk about how the program began and where it hopes to go.

ConvergenceRI: How did you become involved with The Conversation Project?
SPARKS: I became a member of The Conversation Project through the Wellness Committee at Care New England. We thought we were going to a committee meeting, and instead, Domenic [Delmonico, vice president], introduced the idea that we would spend some time talking about end-of-life issues.

We went around the room, and each of us talked. And then, we were asked how we could bring the conversation out of this room.

Most people will ask you: how’s the weather? How’s work going? But The Conversation Project is a convenient way to bring in something that might be uncomfortable. It opens the door for a conversation. By the way, we’re working on a pilot project, when people asked about work. I spoke to quite a few people. I talked with my parents.

ConvergenceRI: How old are your parents?
SPARKS: They are in their early 70s. It was a good opportunity to talk about [these issues]. They’re traditional people, and they [wouldn’t usually] talk about death until someone was actually at death’s door.

ConvergenceRI: How did they respond?
SPARKS: My mother was very open to it. My father was not open to it, at first. But then, as my mother started talking, voicing her wishes, he opened up. 

Of course, it’s an ongoing conversation; it’s not just one conversation.

ConvergenceRI: Did you record the conversation?
SPARKS: No. But it happens that they were going through their own living wills, so we started talking about health proxies. It turned out that I would be health proxy. We [her parents and siblings] were more than willing to let me do that, because I’m in the health care industry. [Another sibling] is going to be the financial person.

ConvergenceRI: Is there any formal documentation besides the living will? Did you consider making a video of it?
SPARKS: I did not. I don’t know if they would allow me to do that. I never thought to do that. I would certainly take that into consideration [in future conversations].

We revisit the conversations often. It’s just something we do. I go there weekly and we have chit-chat. We just talk about stuff. Especially if someone has died recently, because they’re in an age group now that people are passing away, every week there’s someone who is passing away. It’s an open door to continue to have the conversation.

ConvergenceRI: How does Care New England see The Conversation Project moving forward?
LALLY: Care New England wants to be conversation-ready. So, when our patients come to us, we’re able to have those conversations. We need to figure out what that means.

If we, as health care providers, are able to have these conversations, we should, if we’re comfortable with it, have similar conversations with our own families.

The process was to start with members of the Wellness Committee, to have them have these conversations, and then come back and talk about what happened, the emotional aspect. Was it difficult?

And then the idea is to expand The Conversation Project with some of the other staff, with nurses, creating programs with nursing unions.

We feel that if our staff has gone through this process, as difficult or as easy as it is, they’re be able to relate more with families who are going through it, to be more comfortable in that space, with the process.

ConvergenceRI: Is there a guide book, a manual?
LALLY: The Conversation Project has, on their website, a starter kit. When people think about this, they tend to think about living wills, [and questions such as]: do you want to be intubated? But that’s not really what the conversation is about.

It’s about what kind of care do you want. It’s about making your own decision. Are you someone for whom independence is important?

Are you someone who could say that: if I could live and see my children for another two months, I would rather be in pain and have that pain? Or, I would rather live for a shorter period of time and be comfortable.

The Conversation Project’s starter kit has several pages of questions, focused on what kind of care would be important to you. We’re using it as a template for showing people the types of conversations we’re looking to have.

ConvergenceRI: Does The Conversation Project exist anywhere else in Rhode Island? In New England?
LALLY: There were 12 pioneer sponsors nationally, and we were the only one in New England. But now Beth Israel Deaconess has also become a pioneer sponsor. The original Conversation Project pilot went on for a year, and that ended in August. It’s now moved into Phase Two, with a larger group who are taking on the pioneering work.

ConvergenceRI: What are the next steps?
LALLY: Our goal is to make Care New England “conversation ready.” We are doing initiatives at each of our hospitals. We started last year at Kent.

Rhode Island is a good laboratory state because of its size. We submitted a grant last year that did not get funded to make Rhode Island the first conversation-ready state.

The way we thought about it is working through employers. [We wanted to target] the age group that is going to be caring for aging parents.

It’s still a work in progress. Once we get this established in our own front yard, we are thinking about how we could take it statewide.

In our work at Care New England, we felt like we needed to be having more of the conversations. Currently, we have two “conversation” nurses, working out of Kent. Our plan is to expand. I just got privileges last week at Women & Infants and Memorial hospitals. We’re applying to Butler Hospital.

The conversation nurses are employed by the VNA, which runs our hospice program.

ConvergenceRI: Is there a different dynamic between men and women in how they respond?
SPARKS: In my personal experience, men sometimes have a harder time expressing their emotions. I recall a conversation I had with my husband when his mom was dying. My husband is not a crier, but he was literally sobbing when he [talked about ] his mom passing away. I think we have to do a better job of bringing males into these conversations.

LALLY: I think every person is different. I do a lot of these conversations. What I look for is cues. I think you’re right. I would say that men are often difficult – and you have to respond to that. Women are more likely to cry; men will get angry. I think you have to be able to respond appropriately to that, to respond in the right way, and engage.

ConvergenceRI: How much of this effort is related to a cost equation?
LALLY: This is one of those initiatives where all of the incentives align. Everyone in palliative care is scared of the words, “death panels.” We learned our lessons on that.

In my mind, we are doing this because it’s the right care. It is much better to talk to a person [and listen to what he or she wants]. It’s the right care at the right time for the right people.

It is a fact that we may save money, yes. But I would say that the main focus of this is on the right care.

ConvergenceRI: Is this work reimbursable from insurance?
LALLY: Palliative care, as a physician, is reimbursable, just like if I were a cardiologist. I go and I evaluate the patient.

Our nurses doing the same conversation is not reimbursable. We do bring in some money for physician billing, but that does not fully pay for our program.

I think we need to look at new payment models for care, that’s where this fits in, rather than in a fee-for-service model. I don’t think you can ever pay for this [under the fee-for-service model]. There conversations are very time intensive. They require specific skill sets, they don’t fit into the old model.

But when you talk about how we want to reimburse for quality of care for patients, it makes sense.

SPARKS: I know that outpatient doctors can have, once a year, a conversation with their patients, but 15 minutes isn’t a lot of time to have this conversation.

LALLY: It’s not a lot of time, as a patient’s condition may change and their opinion may change.