C-TAC Case Study on Public and Provider Engagement
Excerpt from American Hospital Association. 2012 Committee on Performance Improvement, James A. Diegel, chair. Advanced Illness Management Strategies: Engaging the Community and a Ready, Willing and Able Workforce. Chicago: American Hospital Association, 2012.
Case Study: 6
The Coalition to Transform Advanced Care
C-TAC is a national non-profit, non-partisan alliance of patient and consumer groups, health care professionals, providers and payers, as well as faith-based organizations, and others. The shared vision is that “all Americans with advanced illness, especially the sickest and most vulnerable, will receive comprehensive, high-quality, person- and family-centered care that is consistent with their goals and values and honors their dignity.”
Patients and family caregivers facing serious illness (such as heart disease, cancer, dementia) are often not asked about the care that they want. With little support, they are left to navigate a maze of care settings and providers, with incomplete and fragmented information. This creates physical, emotional and financial hardships on patients, families and caregivers.
Fortunately, high-performing systems, many of them C-TAC members, are demonstrating that a coordinated, person-centered approach yields better care, greater satisfaction and lower costs.[i]
Building on this experience, C-TAC is engaged in providing resources, education and increased visibility for these issues designed to bring about the appropriate care in the right place and time. It is focused on key directives to empower consumers, change the health care delivery system, improve public and private policies, and enhance provider capacity. With attention to faith-based and cultural perspectives, these directives are to:
- Identify, design and promote best-practice delivery models that ensure high-quality, coordinated care across all settings.
- Develop and disseminate innovative, inter-professional advanced care education to clinicians aimed at improving quality, shared decision making and improved medical care by cultivating respect, compassion and responsiveness in care delivery.
- Develop and advocate for federal and state legislative, regulatory, judicial and administrative policies as well as private policies to improve care for those with advanced illness.
- Undertake a nationwide campaign of public education and engagement to help patients and their families make more informed decisions and to support delivery system and policy change.
Public and Clinician Engagement
In preparation for its public engagement initiative, C-TAC reviewed the literature on palliative care, hospice care, and on spiritual and cultural issues related to advanced illness. Published in 2011, the review found an increase among the public in awareness of hospice and palliative care in recent years; still, there were significant segments of the public that were not aware of these services. The literature further indicated that advance care planning improves physical and psychosocial symptoms; family caregiver well-being; and patient, family and physician satisfaction. The review underscored the need for a dialogue among the public, clinicians, and other stakeholders to develop a better understanding of how best to meet the needs of people during advanced illness.
In order to launch this dialogue and develop messages and resources that would resonate with both the public and medical communities, C-TAC conducted a review on what is known and, in some cases, unknown about peoples’ beliefs, behavior and attitudes toward advanced illness and advanced illness care. In 2011 it published a consumer research brief titled Public Perceptions of Advanced Illness Care: How Can We Talk When There’s No Shared Language?, which is updated periodically.
These literature and resource reviews show that there is a growing body of evidence on the benefits of quality communication and shared decision-making among patients, families and clinicians regarding advanced illness. However, clinicians continue to face significant challenges as they grapple difficult questions, such as what information to provide and how and when to share it with patients, families and fellow professionals.[ii]
While there are evidence-based tools and guides to improve communication and advance care planning, their adoption has not been widespread. Despite the existence of quality resources, they can be hard to find. Some are fragmented, discipline and disease specific, and not as accessible or transparent as needed. Much more work is needed in this area.
Disseminating Innovations and Best-Practices
By identifying and promoting best practices from across disciplines and diseases, C-TAC is working to assess existing evidence, increase utilization and apply innovation to advanced illness care, including:
- Developing messages by utilizing new and existing consumer research to reach segmented audiences, creating strategies and concepts for each key segment and testing and refining them.
- Building a website (to launch in January, 2013) that will feature vetted, curated resources for the public and clinicians. This website will be launched in coordination with the public messages.
- Distributing messages via social media, story and editorial placement, C-TAC members’ extensive communication channels and grass roots networks and via national and regional spokespersons to motivate and empower consumers to make informed choices and to call for and support change in the delivery system;
- Measuring performance and making refinements and adjustments. This includes tracking public perceptions and behavior by establishing baselines and periodic benchmark tracking surveys and adjusting channels and messages accordingly.
As part of its initiative to support clinicians, C-TAC has identified six core competencies, behaviors associated with them, and categorized resources (available on its website):
- Advance care planning: Facilitate non-biased, objective discussions between an individual and health care proxy to ensure a better understanding of a person’s wishes and goals; actively listen, using communication skills of exploration, summarizing, paraphrasing, validation and open ended questions
- Care coordination: Link patients with community resources to facilitate uninterrupted care and respond to social service needs; identify patients who are likely to need coordination, as well as the team members who will be responsible for coordinating care
- Person-centered care: Conduct a full assessment prior to providing service; appropriately consider cultural needs; actively promote the well-being of the individual.
- Communication: Enable self-management and patient navigation; foster and build healing and therapeutic relationships; coordinate care with other clinicians, health care professionals and health-related agencies.
- Inter-professional teamwork: Monitor mutual performance; orient collectively; build the ability to adapt.
- Clinician resilience: Cultivate self-awareness; the ability to accept personal limitations; maintain effective professional relationships.
[i] Meyer, H. (2001). Changing the conversation in California about care near the end of life. Health Affairs. 30. 390-393.
[ii] Solomon, M., Browning, D., Dokken, D., Merriman, M., Rushton, C. (2010, April). Learning that leads to action: impact and characteristics of a professional education approach to improve the care of critically ill children and their families. Arch Pediatr Adolesc Med. 164(4). 315-22.