You are the pilot

The pre-Congress handicapping was right about patient-driven PD care plans. They are indeed a major focus of public and private conversations here in Portland at the 4th World Parkinson Congress.

Neurologists who met Tuesday are reported to have spoken approvingly about placing the patient at the center of their PD care plan, as an actor rather than as someone acted upon.

The Denver centered group that is testing a different model of palliative care–one that focuses on process driven steps from diagnosis to final outcome–embraced the Parkinson Foundation  PD SELF program as an initial step in their program.

Most of you reading this blog are quite familiar with PD SELF. The nine-month program is centered on deep information about PD and mental tools that put patients comfortably at the center of the care plan they develop. In a word, they are the pilots of their own aircraft/plan.

The pilot model replaces the neurologist at the center of the team. The patient pilot is the center. The informed patient creates their plan with components such as exercise, diet, socialization and specialty areas, such as speech, occupational therapy and clinical social work.

As I was writing this blog, Dr. Benzi Kluger came by the media room. This modest, gutsy and brilliant Denver MDS is directing the palliative care initiatives in Denver, San Francisco and Alberta, Canada. He said he agreed that a number of factors were coalescing to drive patient-piloted care to the forefront.

An excellent program Tuesday gathered health-care professionals to speak about their team experiences. An important point was not to expect team harmony. Conflict is inevitable and the patient captain must be skillful in managing and leading through it. 

A second nugget was the patient captain needs a strong right arm on the team to drive the necessary intra-team connections. A very insightful social worker said she used to describe her role as the team’s “Elmer’s” glue; now it’s the “Gorilla” glue, invoking the image of an ever more complex health-care environment.


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