Advance care planning has emerged as a key win-win for nursing home operators and their residents, improving quality of life while also helping providers avoid unnecessary and costly rehospitalizations.
Backed by a multi-million-dollar grant and adopted by some major players in the skilled nursing space, a program designed to improve advance care planning opportunities — specifically for residents with Alzheimer’s — will expand to more nursing homes throughout the country.
Researchers at the Regenstrief Institute and Indiana University recently received $3 million to complete an advance care planning initiative that helps residents with Alzheimer’s and their families make informed end-of-life decisions — and to document their wishes — in 170 nursing homes across the country.
Leaders at Signature HealthCARE, Miller’s Health Systems, and Trinity Health System have been pivotal in partnering with Regenstrief Institute researchers Kathleen Unroe, a geriatrician at Regenistrief’s Center for Aging, and co-leader Susan Hickman, director of the Center for Aging — particularly by focusing on streamlining this difficult process for those with Alzheimer’s, one of the largest nursing home populations.
More than half of nursing facility residents have some form of cognitive impairment, which is difficulty with memory and thinking. As the senior population increases, the timing makes sense to facilitate end-of-life planning with a dedicated program, Unroe said, stressing that creating this site-specific intervention will enable the program to be poised for wider-scale growth.
“Alzheimer’s disease is the most common kind of dementia, and it is absolutely the most progressive disease that worsens over time, so the opportunity to do advance care planning earlier in the disease process — when residents can participate more in medical decision-making — is important,” Unroe said.
When a resident’s end-of-life wishes are unknown, whether it’s because they were never discussed or not properly documented, families struggle with making difficult decisions that could go against their loved one’s actual desires. In addition, providers — particularly those that participate in value-based payment models, or run their own Medicare Advantage plans — may be saddled with millions of dollars in hospital costs for visits that the resident never wanted to occur in the first place.
In 2016, Medicare carried out a new payment system with a formal structure, including multiple billing codes and detailed instructions, to incentivize and encourage these discussions.
The focus of the Regenstrief program will facilitate these difficult conversations while Alzheimer’s patients are still cognizant and able to describe advance planning goals, values, and treatment preferences.
After a successful 18-month pilot at Indiana nursing facilities, funded by a $400,000 grant, the larger clinical trial phase will begin — with a trained specialist overseeing advance care practices at the pilot’s three nursing home partners.
Although the researchers created role, and will support the training of a specialist nurse, the actual positions will be filled by a nursing home staff member at the partner sites. At this stage, the second phase of the program will be tailored to streamline communication and update end-of-life documents such as Physician Orders for Life-Sustaining Treatment (POLST) in the electronic medical record system. Organizing forms in a consistent way is part of the second phase of the trial in working with nursing home companies.
“It has been critical to work closely with these nursing facility partners at the corporate level during the pilot phase of the project to understand how they roll out initiatives, how they implement other programs, and what they feel would make this most successful,” Unroe said.
A few tech companies have emerged in recent years to assist nursing homes organize end-of-life-forms, with a particular focus on cloud storage. Vynca, a Palo Alto, Calif.-based firm with a presence in 11 states, currently manages about 660,000 advance care planning documents, including POLST, health proxy forms, goals of care notes, and several other advance directive documents, SNN reported in early December.
Alzheimer’s disease creates specific challenges in the nursing home setting, including legalities and other clinical issues that will call for difficult choices later down the road. More specifically, researcher Hickman pointed to understanding how to work with surrogate decision-makers as a central challenge.
“There’s complexity working with family members or the legally appointed representative of that resident, which requires understanding some of the issues related to what their role is in the decision making process and the legal qualifications,” Hickman said.
If decisions aren’t made, nursing home leadership may default to providing aggressive care, such as extra trips to the hospital, when a complication arises.
“There are some complications that we can anticipate,” Hickman added. “And having a proactive conversation allows people the time to get information, get their questions answered, and to think and reflect on these decisions in advance so that in a crisis, so they’re not pushed to make a decision that they may later feel was not was not what they really were chosen if they had been given more time.”
During the initial pilot, the researchers learned that when staff took time to speak with residents and their decision-makers, many chose to focus on comfort in order to avoid hospitalizations. Hospital trips were mostly included in advance care planning as a necessity to provide comfort, Hickman said.
“As people progress in their dementia, the benefits of many of the interventions we have available, including hospitalizations, start to decrease, and the burdens associated with those interventions increase,” she said.
Particular clinical problems involved in advanced dementia include issues around eating and swallowing. Choices about feeding tubes and other means to support nutrition are particularly important to discuss in advance — and not in the hospital or emergency room, Unroe said.
“Research has shown no benefit for people with advanced dementia for feeding tubes, but it’s a common intervention in the population, particularly when not discussed in advance,” she said, adding that these medical interventions also require time in the hospital.
“Future emergency room trips for a feeding tube to be put in and out, for example, add overall medical expenditures,” Unroe said.
Invasiveness is a burden for some, with no clinical benefit at certain states of the disease. But both researchers confirmed that the most important factor for advance care planning is clearly disseminating information in front of families and residents — to let them think through what makes most sense for them at a moment that’s not a crisis.
The last month of 2019 has been a busy one for Regenstrief, a major player in aging research that’s increasingly looking for ways to bridge the gaps between academia and businesses in the health care space.
The institute recently invested in Probari, a care-coordination startup that generated 33% reductions in avoidable hospitalizations and $3.4 million in net savings for nursing homes in a recent pilot. The startup is centered on treating acutely ill residents in place at nursing homes in an effort to reduce hospitalizations, primarily with the help of dedicated nurse specialists to improve care coordination and assessments — as well as an associated mobile app.