While the United States ranks as the international leader in biomedical research, one doesn’t have to look far to find complaints about the quality of healthcare in the United States. From service users to the Institute of Medicine, a universal cry has gone out for more compassionate, person-centered care. In short, people want to be heard and understood by their providers. They want their visits to start out with the two simple questions posed by Mitch Kaminski: What are your goals for your care? How can I help you? However, these questions can’t be asked in a vacuum. They have to be asked within a continuous, healing relationship that focuses not just on disease and illness, but strengths and wellness.
How do we move toward compassionate care?
At the Center for Social Innovation, we focus our activities on helping people who have been marginalized and, in many cases, forgotten by traditional service delivery systems. When we think about transforming healthcare systems to provide more compassionate care, one of our first questions is around inclusiveness. How do we ensure that compassionate care includes the specific needs of individuals with mental illness? Substance use? Trauma histories?
These questions have led us to think about a framework for healthcare provision that meets these needs. Person-centered care offers a framework for providing compassionate, effective care. In this framework, providers welcome and prioritize the needs, preferences, and values of service users, and together determine treatment goals—a process called shared decision-making. But person-centered care doesn’t go far enough to address specifically the needs of individuals with mental illness, substance use disorders, and trauma histories. We know that these individuals have higher rates of co-occurring medical illnesses and mortality, face barriers accessing care, find that systems are unresponsive to their needs, and may use services differently than recommended. Additionally, many healthcare providers do not fully understand mental illness, substance use, or the impact of trauma. As my friend and colleague Gloria Dickerson’s recent blog post (and past blog post) so poignantly demonstrates, the consequences of healthcare systems and services that are not person-centered are painfully real and frequently detrimental.
My colleagues have written about recovery-oriented care and its application for individuals with mental illness and substance use conditions. Trauma-informed care offers systems a way to ensure that they are providing care in a way that is not only sensitive, but effective for individuals who have experienced trauma. My colleagues have shared the importance of this approach across many different arenas from education to healthcare. But providers and healthcare systems can’t be expected to implement three different frameworks. We need to offer a universal design, one that can bring together the crucial elements of these frameworks: person-centered care, recovery-oriented care, and trauma-informed care.
A universal design in healthcare
When we provide care from a universal approach, we don’t screen or wait until an individual discloses they are dealing with depression or have a history of childhood abuse to implement this approach. Universal design means that this type of care is good for everyone. Additionally, we know that the high rate of trauma exposure (up to 90%) and behavioral health conditions (up to 50%) in the general population necessitate a universal approach in healthcare.
We propose that the principles of universal design include:
- Foster a continuous healing relationship
- Prioritize service user's narrative
- Understand the context of service user’s life
- Share information and decision making
- Provide integrated, evidence-based care
- Understand trauma and behavioral health conditions and their relationship to medical conditions
- Document relationships within medical records
- Involve family and natural supports
- Reduce stigma
- Include peers in all levels of the organization
- Promote recovery and wellness for all service users
- Provide trauma-informed care
- Ensure emotional and environmental safety
- Avoid retraumatization
- Understand and address secondary trauma among staff
Moving from theoretical framework to implementation
Last week, we had the exciting opportunity to bring together experts across many diverse fields for a SAMHSA Expert Panel to discuss how to take these principles and implement them in hospital and other healthcare settings. Hospital administrators, policy makers, healthcare providers, people with lived experience of trauma, mental illness, and substance use, recovery experts, trauma experts, researchers, and payers were all at the table. Over two days, we talked about practice guidelines, barriers and opportunities for implementation, and what tools and resources were needed to put this into place.
Some highlights from the panel included discussion of the following factors in systems transformation:
- Integrated teams
- Organizational buy-in
- Culture change
- Training and consultation across all levels of an organization
- Peer involvement at all levels of the organization
- Centrality of the provider—service user relationship
- Assessments that prioritize and include the service user’s goals, needs, and preferences
- Access to appointments and clinical support
- Attention to staff needs
- Availability of culturally and linguistically appropriate services
Everyone agrees that change is needed. Our hope is that this is the beginning of a conversation that will lead to significant change in how care is delivered.