Since the Coalition grew out of the original task force that focused on nursing homes, working to improve EOL care in this setting has been a core part of our work. One of the Coalition's first acts was to publish the ECHO (Extreme Care, Humane Options) Recommendations. This document, created at a time when palliative care was still in its infancy, brought together the basic precepts of palliative care and applied them to the nursing home setting. It focused primarily on the ethical principles of ACP and medical decision making regarding life-sustaining treatment, which was cutting edge at the time. Bringing these principles together in one place resulted in the “light bulb going on” for many nursing home leaders. The document was groundbreaking in that it was the first set of guidelines in the nation that were specific to EOL care in nursing homes.
The ECHO Recommendations were field tested with a handful of facilities before being finalized. Field testing consisted of a small team of a physician, nurse, and attorney who trained facility staff on the principles in the Recommendations. This field testing gleaned valuable information about how to convey the principles in a way that nursing home staff would understand. These lessons were incorporated into the final document.
To encourage adoption of the ECHO Recommendations, the three associations representing nursing homes participated in creation of the document, as did the California Department of Health Services (DHS). Nursing homes are a highly regulated industry and DHS is the agency in our state that licenses and surveys these facilities. Nursing homes are hesitant to adopt new practices—even if they will result in better care—unless DHS “blesses” the new practice. With the ECHO Recommendations, DHS went so far as to write an “All Facilities Letter,” which was sent to every nursing home in the state, encouraging them to adopt the principles in the ECHO Recommendations. Different people learn in different ways. Some can read the written word and know how to incorporate it into their daily practices. Others may benefit from hearing the information presented, participating in small group discussion about the information, or engaging in exercises that apply the information to hypothetical or real-world situations.
For this reason, once the ECHO Recommendations were finalized, the Coalition created a training based on the Recommendations. We wanted the Recommendations to be adopted by entire organizations, not just individual staff, so we required that participants attend with a group of three or more staff from different disciplines from the same facility. Nearly 300 professionals from 109 nursing facilities participated in the training. We built time into the workshop for each team to create an action plan that they would follow once they were back at their facility to implement what they had learned at the training.
In 2009, the Coalition revisited the ECHO Recommendations and decided it was time to update them. We convened another task force with representatives of the same key organizations to make revisions. Upon review, the task force felt that the field of palliative care—and the knowledge and care practices in nursing homes—had progressed enough that new (rather than revised) recommendations were warranted. From this, the CARE Recommendations (Compassion and Respect at the End of Life) were created.
Many nursing homes have recently started to embrace “culture change,” the common name given to the national movement for the transformation of older adult services, based on person-directed values and practices where the voices of elders and those working with them are considered and respected. Core person-directed values are choice, dignity, respect, self-determination, and purposeful living. The Care Recommendations incorporate these principles.
The CARE Recommendations guide nursing homes in increasing their capacity to provide compassionate, quality EOL care that is consistent with residents' wishes. The recommendations contain tools and resources that support the development of the attitudes, knowledge, and skills nursing homes need to provide the best possible EOL care for residents. The guide is comprised of three steps: (a) ACP, (b) clinical practices, and (c) other considerations, including grief, bereavement, spirituality, and cultural issues. The Care Recommendations handbook detailing how to approach each of these important areas is available at coalitionccc.org
In addition to ECHO and the CARE Recommendations, the Coalition has engaged in a number of projects aimed at improving EOL practices in nursing homes. Through these efforts, we have identified the following challenges when trying to change ACP practices in this setting:
■ Turnover is high among staff and administration alike.
■ Nursing homes have limited resources and time to devote to changing practices. Physicians have limited presence in nursing homes. ■ Support of the administrator and, if appropriate, corporate office is key.
■ Nursing homes tend to be highly risk adverse. They have strong culture of “we've always done it this way.” Change, however, often requires moving out of one's comfort zone.
■ In California, the staff is ethnically quite diverse. For many staff, English is a second language and they have limited English proficiency. Many grew up in cultures that don't have the same concept of ACP.
■ ACP is seen as a task. Often, it's seen as a task to be completed upon admission.
We've found that the following approaches help support changes in ACP practices in nursing homes:
■ Offer ACP as a solution to a problem about which they are concerned. Be clear on “what's in it for them.”
■ Get the blessing of the state agency that surveys nursing homes.
■ Make it simple.
■ Provide ready-to-use tools for implementing the change.
■ Keep following up. You have to reinforce the change over and over and over. Ongoing education is important.
■ Celebrate the facility's willingness to change. Celebrate staff's accomplishments.
■ Be patient.
The bottom line is that to have a broad impact on nursing home practices, collaboration is required. Bringing together key stakeholders who know and can influence the industry is key.