Tom Lane, Certified Recovery Support Specialist
Much has been written about patient-centered care. Proof that this model is gaining acceptance is the evolution to shared decision making (SDM). The National Learning Consortium defines SDM as a “process in which clinicians and patients work together to make decisions and select tests, treatments and care plans based on clinical evidence that balances risks and expected outcomes with patient preferences and values.”
In a recent CFYM post John Williams, M.D., writes that there are several tools that clinicians can use to step through the shared decision making process. Dr. Williams opines that when there are many different treatment options, SDM takes on added importance. As a result, a major step in the SDM process must be for clinicians to understand the desired outcomes of their patients.
As a certified peer specialist assisting individuals in developing lives of wellness, I have seen first-hand the benefits of SDM and, unfortunately, the fall-out when it is not fully embraced. Case in point: John (not his real name), an individual I have worked with in the past, who lives with schizophrenia and works hard to create a quality life for himself. John holds down a full time position as a machinist and takes medication to assist him in managing his symptoms. John lives with voices that protect him on the job. These voices remind him to follow safety guidelines when working the line, such as to wear safety gear and provide him with prompts for running the equipment. John mentioned to his care team that he hears voices. The care team became alarmed and recommended a medication change. Unfortunately, this change eliminated the protective voices John relied on to perform his job.
One of the SDM tips the National Learning Consortium recommends is to “provide information on benefits and risks and assist patients in evaluating options based on their goals and concerns.” Had SDM been fully embraced, John and the care team would have discussed the value his job as a machinist plays in his wellness program, as well as the value of the voices in assisting him in performing his job.
Fortunately, John was able to express his dissatisfaction with the medication change. However, individuals do not always have the confidence to be their own advocate. All of us from time-to-time can be intimidated by clinicians, whether it is a physical or mental health condition we are dealing with, making it difficult to engage in SDM. With the support of a peer specialist these situations can be short-lived.
By sharing their own experiences as a peer, an environment is created where the individual will often develop a level of trust. This enables the individual to divulge concerns, share desired outcomes from treatment, and acquire skills to approach the care team as an equal participant. In some instances, the individual may ask the peer specialist to be an active participant in the SDM process. But at all times it is important for the individual to recognize and accept that the course of treatment is ultimately his/her choice.
SDM in absentia
While SDM is the goal, it is does not always align with reality. How do individuals participate in SDM when they are incapacitated or unable to articulate their wishes? It is not unusual for people to have a living will; in fact, many medical institutions require one be in place prior to surgery. These documents provide guidance to the medical team on how they should proceed if patients are unable to make decisions for themselves. Similarly, psychiatric advance directives (PAD) serve the same function. They are a legal document that—just like medical advance directives—specify the type of treatment the individual wishes to receive, such as medications that are most effective and, just as important, which ones are not. Additionally, a PAD can provide directives on who can visit them in the hospital and who cannot. These documents are protected by federal law—any psychiatric facility receiving Medicare or Medicaid must make the document available—and many states now have laws that support the adoption and use of PADs.
Personalized medicine is a major advancement in the clinical world. A one-size-fits-all treatment protocol is no longer the standard. With so many treatment options, each carrying its own risks and benefits, it has become increasingly important that patients fully participate in treatment decisions. Nowhere is this truer than when treating mental health conditions. When individuals are afforded the respect to articulate the outcomes they are seeking from treatment and provided with the information to evaluate the options, they are more likely to engage and follow through with their treatment regimen. By doing so, they ultimately receive the treatment benefits they desire.
John’s story had a happy ending. John did advocate for himself. His original medication regimen was restored and he and was able to return to his job as a machinist. With the adoption and acceptance of SDM throughout the system, stories like John’s will become less frequent and individuals will have a quicker path to wellness.
- How can incorporating peer support specialists as a member of the mental health care team advance the idea of shared decision making?
- How have you deployed peer specialists in your practice?
Tom Lane works in the private sector as a Certified Recovery and Support Specialist and is a member of the Board of Directors for the Depression and Bipolar Support Alliance. Mr. Lane is a charter member and the first Board President of the Florida Peer Network, and founder and first Executive Director of the Albuquerque Drop In Center. Mr. Lane has worked as Vice President of Recovery Supports and Forensic Services for New Horizons of the Treasure Coast, a community mental health center in Florida and has 14 years’ experience developing and implementing peer-operated programs, services, and supports in the community and within publicly funded provider settings, including inpatient and state hospital settings.