I wrote the following for C.J. Peek in the context of requirements for a patient-centered "home" (not necessarily a physical one). It points up some important challenges to making a care environment patient-centered. The issues raised apply with additional force to care of the aged and the dying.
“Patient-centered”: The “home” features services from many specialties, each with its own world (more about that later), but the world of the patient is pre-eminent in at least the following way: it is the one in which the important decisions about care are made. It is where reasons are chosen and weighed up. If the patient is competent to do this, he or she does it, and otherwise the patient’s designated agent does it. Consequently all the data coming in from other worlds has to be represented in the world of the patient, and of course this implies some educational and even cross-cultural skills on the parts of those professionals representing the remaining worlds.
Concerted action across the different worlds of the different specialties: Although the mission of the home is beyond the scope of these notes, I take it to include something like “providing each patient with the best quality of life (as measured in their own terms) consistent with the fees being charged and the medical state of the art.” To accomplish such a goal clearly is going to require the close cooperation among the many different specialties, some of which differ from each other even in much of the language spoken.
Therefore there will have to be principles and practices in place to enable such cooperation. These would include: reconciling differing languages, reconciling differing choice principles and their relative priorities, combining the practices of different communities, and getting to 100% consensus on certain critical items, like the mission. (I like to visualize the logic of such reconciliations via some mapmakers coming together, each with his own favorite projection style of some portion of the earth. On portions of the earth where there is no overlap – one style owns it – there is no work needed. But where there is overlap, the participants whose maps overlap have to come up with transformations of coordinates to get around among their various representations. Of course if one style has the status of the standard, that simplifies things a lot.)
H. Paul Zeiger, Ph.D.
2616 Xavier Street
Denver, CO 80212
303-954-8595
paulzeiger@aol.com
http://www.parkinsonsyoga.org/
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I heartily agree with Paul's emphasis on the need for reconciling worlds, and the practices and principles required to do this. Most important, in my view, is an acknowledged status filled by a competent individual, who takes responsibility for leading the sharing and reconciling of views. Most professionals have never seen this done skillfully (or at all) and you cannot rely on their ability to make this happen.
ReplyDeleteIndeed, Tony. I've just come across a couple of books about that competence (although their language is somewhat different from yours and mine): Dealing with Differences: Dramas of Mediating Public Disputes, by John Forester, and
ReplyDeleteBreaking Robert's Rules by Susskind and Cruikshank
Paul and Tony,
ReplyDeleteOne of my major interests and current projects is teaching professionals of all stripes the craft of facilitating "Goals of Care" (GOC) discussions at end of life and more generally with any life limiting illness. The concept of GOC necessarily requires the professional to enter into and understand the patient/family's world(s). End of Life care provided by hospices and palliative care programs come the closest to disseminating this type of professional competence. I have a draft of describing this type of facilitation which I would like to post (as soon as Tony helps me figure out how to do this!) for your review and thoughts. It is part of a three part syllabus that I will be using in training. My first cohort are all of the Geriatric Division nurse practitioners. So, this has real world immediate application.
I look forward to it, RIchard.
ReplyDeleteAnd a footnote (slogan?) to Tony's remark about reconciling worlds: "Nobody's world gets shortchanged."
The slogan "Nobody's world gets shortchanged" reflects the best of bioethics where exploration of autonomy, collective good, professional ethics, and the public good are seriously considered and are in a "reflective equilibrium" (taken from John Rawls). The worlds of the individual, family, medical community and the public/civic (legal,economic, insurance) all have to be considered and in some way reconciled with the patient and family having priority when it is a matter of personal values, ways of living, etc
ReplyDeleteRichard's paper on "Interviewing at the End of Life" aka "Goals of Care" is now posted at the Center for End of Life Care website, on the "Papers" page (along with four other documents.) Here's the link:
ReplyDeletewww.descriptivepsychologyinstitute.org/CELCPapers.html