Young Hand Holding Senior's HandIn the first two parts of our end-of-life care series, we explored the current state and new innovations in the field of end-of-life care.

For the next part in our series, ElderBranch interviewed Susan Enguidanos, Ph.D. to learn more about Kaiser Permanente’s innovative palliative care program that she helped design in partnership with Partners in Care Foundation.

Can you briefly tell me about Partners in Care Foundation (PICF) and your affiliation with PICF.

At the time of the study, I was the research director at Partners in Care Foundation. I’m currently at USC in the School of Gerontology. [Now] I consult with them [PICF] and a lot of my personal research has come out of some of this early work I did with Partners in Care.

Partners in Care Foundation is a non-profit organization that is designed to fill the safety net gap in terms of health care needs. Part of that includes striving to identify and develop innovative models that we can use to meet the unmet needs within our health care system – either with our models of care or with populations that don’t typically have access to care.

Generally speaking, what’s broken, missing or lacking when it comes to end-of-life care and what are the other gaps in the health care system that you mentioned?

One of the biggest problems is that end of life really starts sooner – in terms of the decline. You talk about end of life, and people get end-of-life care usually in the last three weeks of life, which is in hospice, but you really don’t have any other mechanism in our system to address the decline that starts much earlier.

Our whole health care system is designed to cure and provide care for people who are healthy and can navigate the system, but we don’t have anything that provides the other needs that people have as they start to decline and experience serious health problems.

Palliative care – I see it as very, very different than end-of-life care. It’s a comprehensive system: pain and symptom relief, emotional support, social support, spiritual support. It’s very, very comprehensive and it’s something that can be provided at any time during an illness or an illness trajectory to provide support for people when they need it.

Oftentimes, [the needs] come way before those final [days] –if we look at cost-benefit, it’s really six months, [but] on average, we all know that they don’t get in until the very end of life. But these needs start earlier and we see it in the costs of care; we talk about the costs of care in the last year of life, but there’s research out there that shows these costs really start in the last two years of life.

People are declining, they’re starting to develop multiple needs and there’s really no comprehensive system of support for them. They can go to the hospital, they can go to their primary care, and then they go to the specialist, but there are all these gaps in the system. As they go through the system, there’s no continuity in terms of support in the home.

We recently published a study that looked at those patients that had an in-patient palliative care consult, and we found that for people that were discharged, if they were discharged into home-based palliative care, or hospice, they were significantly less likely to be readmitted within 30 days as compared to people who were discharged to home with no care or to a nursing facility. [This study] demonstrates that whole issue of continuity of care, and why it’s so important.

Can you tell me about some of the specific learnings gleaned through Partners in Care Foundation’s work that served as an input when designing the program?

We worked really closely with Dr. Rich Brumley from Kaiser Permanente. We had conducted some work in HIV and AIDS and that is what led us to Dr. Brumley – there was common interest in the issue of patient-centeredness, which is now popular, but at the time it wasn’t popular. Really trying to figure out how to provide care that will be reflective of not only what they need but also what they want, when they want it.

We started some early work with HIV and AIDS and we ran into Dr. Brumley who had done some pilot studies in Kaiser. He was looking at all these patients that were dying in the hospital, and he was thinking “this shouldn’t be happening, we have all these great services, we have a great hospice”, and then realizing not everybody’s going to want that type of care. Not everybody is going to be ready for hospice and at that point.

And then there was the issue of prognostication, where with a lot of these conditions, like heart failure and chronic pulmonary disease, it’s not always as easy to predict, because people look like they’re going to die, and then they get better…and then they look like they’re going to die again, and then they get better. There’s always this guessing game. So we thought “what if we provide this type of care earlier and see if we can make an impact.”

We all know – there are studies that show – that people don’t want to die in the hospital. The vast majority of people want to die at home. If we can provide a better service, can we give people better experiences at end of life, so that they don’t end up dying in the hospital?

Can you describe the Kaiser Permanente program that you helped design? What are the key success factors that the program hinges on?

In terms of the model, it looks a lot like hospice. We have physicians, social workers, nurses, homes health aides, chaplains and it’s all home-based. The frequency of it is predicated on the needs of the patient. Once we get people stable, the nurse should go in less frequently.

One of the things that we published early on, is that we looked at all the visits from all the professionals. What we found is that having the physician home visit was really, really key. Even though they visit less frequently than the nurses or social workers, having that physician [visit] is critical. Having access to the physician as a leader of the team is really important to the patients. That being said, every discipline that comes into the home plays an important role.

One of the other critical components is that they have access to information – medical personnel, 24 hours a day. So if they had a crisis, they could pick up the phone, call somebody, and reach a nurse who can reach a doctor at any time. What we’re finding in some of the work I’m doing right now is [that among] patients that have been readmitted to the hospital, we’re finding that access in a crisis is a key issue as to why people end up back in the emergency room. It’s not necessarily their first choice, but they didn’t feel like they had an alternative.

Given that with most palliative care programs you need not give up the right to curative care, do these programs actually escalate total costs of care?

What we and others have found, [is] when you have that type of care [palliative care], people make different decisions because they’re getting comprehensive information. They’re finding out about their entire health condition and what the trade-offs are. Once they’re fully informed, we really feel they make different decisions and they are fully supported in their decisions.

For the palliative care team, the right decision isn’t around financing, it’s around what does the patient really want in their last years of life. What type of trajectory and care treatment are well-suited, and providing them information about what their trade-offs are. What [are] your options if you decide not to do aggressive care, or what the odds of survival are if you have a heart condition and cancer.

The other research that just came out (Temel et al., 2010), found that people actually live longer because they make different decisions. They have fewer episodes of chemo and radiation but they live longer. We found that if we gave them more care in the home, they either didn’t need or decided not to pursue aggressive care.

While there is a Medicare hospice benefit, there isn’t something similar for palliative care. How are palliative care programs being paid for and is that a factor when thinking about broader adoption of these kinds of models?

That has been the primary barrier in disseminating the model and promoting replication. [Given] the Kaiser structure is completely a closed system, they can move funds around to cover whatever they want. In systems that aren’t like the VA or Kaiser, there’s always going to be a winner and a loser, and the loser is the person paying for the services and the winner is the person saving money.

What Dr. Brumley did at Kaiser when he did his preliminary review of the data, he went to administration and he said “look I can save this much money on hospitalizations by providing this other type of care for patients”. When you look at the type of money we need to support this kind of program and how that compares to the overall budget of the medical program, it’s not that much. So they shifted that amount from the hospital’s budget into his budget.

We have to figure out how to reimburse these services in a way that there’s not a “loser”. That’s exactly why a lot of these models don’t have the social worker or the chaplain; they have the nurse practitioner and the physician because they can charge for home visits. So that’s a huge barrier in terms of why we haven’t had better success in getting this replicated.

About Susan Enguidanos, Ph.D.

Susan Enguidanos, Ph.D., is the Hanson Family Trust Assistant Professor of Gerontology at the Davis School of Gerontology at the University of Southern California. She conducts research in the field of palliative care, including the investigation of ethnic variation in access to and use of palliative and hospice care. Dr. Enguidanos is currently working on understanding care setting transitions for seriously ill patients and developing mechanisms for improving continuity of palliative care for individuals with complicated illness.

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