Mental health shared decision making in the US

M. Slade's paper1 presents the most accurate, balanced and up‐to‐date summary of shared decision making in mental health care that is currently available. Because his review takes a decidedly UK perspective, I will address some of the related issues in the US.

The US health care system (more accurately, the US health care non‐system) continues to be extraordinarily expensive and ineffective. Health care services in the US have been created by vested interest groups: private hospitals, pharmaceutical companies, insurance agencies, device makers, professional guilds, specialty care groups, large health conglomerates, for‐profit nursing homes, and so on. All of these entities prosper in the US by providing services that maximize profits rather than patient outcomes.

Although patient‐centered care is widely endorsed as a principle in the US2, it is more honored in the breach than the observance. In mental health, the call for patient‐centered care and shared decision making seems unlikely to shift care away from hospitals, expensive medications, specialists, facility‐based rehabilitation, and other profit‐generating services, even though studies show that patients would prefer other services such as safe housing, employment, peer supports, and help with general functioning3, 4. People with mental illness recognize the need to address the social issues that cause and exacerbate mental disorders. But shared decision making may not include the services they want and need.

Medical solutions to social problems are very expensive and ineffective. Yet social factors often determine exacerbations of mental illness and cause excessive, unnecessary mental health treatment. Consider the current trends to increase mental hospital beds and to incarcerate people with mental illness. The erosion of low‐cost housing and the absence of employment opportunities, rather than true increases in the prevalence or severity of mental illness, underlie these misguided initiatives. In fact, hospitals and prisons often harm people with mental illness by decreasing self‐esteem and opportunities, harm society by increasing stigma and segregation, and harm government by wasteful spending.

The crux of the US problem is that prevention and social safety net services, though preferred by people with mental health challenges, do not generate profits. Effective interventions for primary, secondary and tertiary prevention in mental health exist, but in the US we spend minimally in these areas. Northern European countries, by contrast, spend less on health care but more on the social safety net: prenatal services, early childhood care, maternal leave, family support, early education, nutrition, early behavioral health interventions, safe housing, and psychosocial supports for people with disabilities5.

Consider the examples of supported housing6, supported employment7, and supported medication management8. These interventions are highly effective, strongly desired by people with mental illness, and clearly helpful for recovery. But they are rarely available because social services are not considered medical necessities. Shared decision making cannot address unavailable services.

As health care costs in the US spiral out of control, policy makers and health care leaders have pursued economic outcomes such as lower hospital and emergency use rather than increased involvement or satisfaction with the health encounter. Adoption of decision aids and shared decision making has been largely ignored. Instead, policy makers continue to try to change incentives and risk adjustments within the health care system in order to reduce costs. Thus far, managed care, accountable care organizations, paying for performance, behavioral health integration, and other popular approaches to reform have not succeeded – as though we do not quite have the incentives and adjustments right! But what if the solutions are outside of the traditional health care system? What if they do not generate profits for medical industries? What if they involve listening to patients rather than to vested interest groups?9 More money, more clinical trials, and more professionalization may not solve problems that are related to social, educational, economic and health inequities10.

Thus, shared decision making, to drive effective change in the US, must address more than traditional medical interventions. People with mental health problems need and want safe neighborhoods, decent housing, and opportunities for education, employment and community integration. Yet they are getting more and more medicines, forced treatments, hospitals and psychiatric specialists. As inequality, prejudice and health disparities expand in the US, we must listen to people in a broader sense – let people choose the services and outcomes that matter to them. People with mental health disabilities deserve access to housing, schools, jobs, family supports and safety11. But will they be allowed to share in these decisions?

Robert E. Drake
Dartmouth Institute on Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth, Lebanon, NH, USA