The Collaborative Pathway at Advocates offers young people experiencing early episode psychosis an approach to care that respects and amplifies the voice of the young person; involves the young person’s family in network meetings to design a path of care; uses classic crisis intervention approaches which build on strengths; avoids pathologizing and stigmatizing language; and uses antipsychotic medications cautiously, at low doses whenever possible. The Collaborative Pathway is the first US adaptation of Open Dialogue, an approach to early psychosis developed in Finland, where it has achieved some of the best outcomes in the world. Blending Foundation funding and third party reimbursement, the Collaborative Pathway offers this innovative approach to families of ordinary means to engage in this innovative practice.
For many young people experiencing psychotic crises, the care they are offered feels unattuned to their perspective and experience. Many young people reject the construct that they are “ill” or need medication. Many see their psychotic experiences as meaningful, and feel assaulted by the medicalization of their experience. This dynamic results in an adversarial polarization of the young person and the treatment system, with “non-compliance” or “non-adherence” an all-too-common event. This often leads to repeated hospitalizations, and alienation from treaters and often from families who are seen as aligned with the treatment system. The Collaborative Pathway offers a welcoming, accepting framework, in which young people and families can develop ways of understanding the young person’s experience, including the medical paradigm when helpful. Our experience confirms that young people find this approach radically more respectful and collaborative.
For young people experiencing psychotic crisis, the best outcomes generally occur when there is alignment between the young person, the family and the caring team. When young people can engage in fully informed consent, and truly co-design and co-create treatment that feels right and attuned to their needs, both the quality of care and the quality of life for the young person and family are enhanced. A key ingredient in such collaboration is being able to spend substantial time with the young person and the family, getting to know their perspectives, strengths, hopes and concerns. In contrast, standard care is a hurried affair, with rapid diagnosis, and abundant use of clinical and pathologizing language, which facilitate professional communication but impede strength-based collaboration. In such settings, too, there is great reliance on the primary role of antipsychotic and other medications, which often further diminishes collaboration, if the young person rejects their use.
Collaborative Pathway has the potential to greatly reduce health care costs over the lifetime of the individual being supported. Collaborative Pathway invests significantly more supports and health care resources up front, when the indiviudal first experiences symptoms of psychosis. The model involves at least two clinicians meeting with the family – ideally in the home – for as long as and as often as needed in the psychotic crisis. A psychiatrist may also attend these meetings, which take much more time than standard clinic visits. However, outcomes in Finland suggest that up to 80% of young people experiencing early psychosis who use this model are working or in school at five years out, while using a fraction of the antipsychotic exposure in standard US care. Thus, hospitalizations and emergency room use are greatly reduced while bending the clinical curve away from chronicity. This results in great medical care cost savings over the lifetime of the individual supported
The Collaborative Pathway was the first adaptation of the Open Dialogue model in the United States. The program combines the capacities of a mobile crisis team, an outpatient clinic and a strength-based, recovery-oriented psychiatric rehabilitation service. The administrative leader, Brenda Miele Soares, worked with the clinical leader, Chris Gordon, MD, to combine Foundation support, resources from the Department of Mental Health, and support from Advocates to train a team of 35 clinicians for two years in the Open Dialogue model. Dr. Gordon, a Board Certified psychiatrist and Associate Professor of Psychiatry, part-time, at Harvard Medical School, created protocols to marry the Open Dialogue model successfully with mainstream US medical/psychiatric practice. The Collaborative Pathway represents a radically welcoming, supportive structure for young people experiencing a psychotic crisis to find a treatment path they endorse, with the support of their families and treatment team.
The Collaborative Pathway represents an important synergistic innovation that integrates resources already in place in many non-profit organizations similar to Advocates: a mobile crisis team; an outpatient clinic; community-based workers; peer support team; and medical staff. A key ingredient is an agency culture that welcomes, encourages, values, and integrates the perspectives of the individuals receiving services. Implemenation of Collaborative Pathway requires considerable human and financial resources. Leadership must be committed to the project and creative in identifying resources. Project leaders have presented our work locally, nationally, and internationally, sharing our structure, process and our outcomes. Leadership actively reaches out to potential partners who indicate interest or whose culture and values appear to align with Collaborative Pathway.
Sustainability remains a challenge for this program. Results from the Open Dialogue programs in Finland show remarkable decreases in chronicity for young people utilizing this model, with 80% of two cohorts of patients with first-episode psychosis working or in school at five years, and utilizing much less antipsychotic medication than in standard care. These outcomes translate into very substantial savings over the life span – lower psychiatric costs, medical costs, and lower lost productivity. We have found similar outcomes in the first cohort of patients we’ve served. We are collecting data to demonstrate that these long-term savings dwarf the relatively higher up-front costs of longer appointments, family meetings, and utilizing more than one clinician in family meetings. We are in dicussion with interested payors, but need more data to make a compelling case. We continue to pursue foundation and other funding opportunities as we identify them.
The Collaborative Pathway is based on structures and capacities that exist in many huma services organizations, both locally and nationally. With the emerging health care paradigm of health homes, and team-based care, along with disease- and illness-self-management, the health care system is moving in the direction of collaborative care and shared decision making which are at the heart of the Collaborative Pathway and Open Dialogue. One of the barriers to such replication is the need for training in this model. We have partnered with Professor Douglas Ziedonis at UMass and his team to develop fidelity scales and a training program that attempts to cut training time from two years to three months. We believe that our experience shows that a program like the Collaborative Pathway can be built and thrive in an ordinary non-profit structure, optimizing existing skills, teams and capacities.
We are currently in Phase 2 of Collaborative Pathway. In Phase 1, we served 14 families for one year with an 88% retention rate, with very high satisfaction for both the young people and families. Most had prior experience in the mental health system that was disappointing, in contrast to their Collaborative Pathway experience. We achieved statistically significant outcomes: decreases in hospital days, and increases in days working or in school. At year’s end, 56% were working or in school. Use of antipsychotic medications varied: The average dose of antipsychotic medications in risperidone equivalents at start of treatment was 2.64 mg/d; and fell to 1.69 mg/d at 12 months (not statistically significant). Four people had no change in antipsychotic medication; 3 of 6 not taking antipsychotics at baseline started on antipsychotics during the year, and 4 of 8 who were taking antipsychotics stopped successfully. There were no adverse events.