It seems to me (Hannah Fields, medical student, Mayo Medical School) that if medicine can be “minimally disruptive”, there must also be a practice of “maximally disruptive medicine.” This is not to say that the doctor means to overly burden a patient with the tasks of self-care. The physician merely fails to consider the effects of the treatment on the daily life of a patient.
The workload of a patient’s participation in self-care or treatment on his or her daily life has become known in our group as the Burden of Treatment (BoT). It is important to note that this does NOT include the ways in which the disease itself effects life, but is restricted to the ways in which the patient’s investment of time, money, effort, and social and other resources in treatment affects the patient.
I’d like to clarify and put this into perspective with my previous musings on “What is fit?”. Recall that a treatment that fits is one which meets the doctor and patient’s shared priorities and goals for treatment outcomes, and does not exceed the patient’s capacity to cope. In order to make a treatment to a patient, a healthcare provider can either attempt to increase the patient’s capacity in order to bear the burden of treatment, or decrease the burden to not exceed the patient’s capacity.
I recently had the opportunity to discuss these ideas on treatment fit, BoT, and MDM with Dr. Michael Seltzer, a medical anthropologist from Oslo, Norway. Dr. Seltzer has studied the effects on patients of medical and psychological treatment from an anthropological perspective and he gave me a paper (see citation) regarding the concept of “colonizer” family therapists. Such colonizer therapists can be viewed as an parable for other health care providers working to avoid “maximally disruptive medicine”, and are examples of how even well-intentioned professional helpers can give treatment that grossly does not fit.
Therapy and colonialism may seem to be highly contradictory activities. As Rober and Seltzer explain, “Indeed, colonialism refers to a complex of practices for oppressing and exploiting peoples, while therapy, on the other hand, refers to a set of ideas and practices aimed at helping them” (124). However, as a professional helper, it is possible that attempts to help alleviate the burdens and detriments of disease can feel overwhelming and even oppressive to a patient. Anyone who has attempted to comply with a complex treatment regimen, especially one that lasts indefinitely for a chronic condition, may feel that health care providers and their treatment consume significant personal, financial, and social resources. One patient described this phenomenon of BoT to me as “a hijacking of my life, my time, my activities, and my priorities from day to day”, echoing the “colonial” exploitation described by Rober and Seltzer. Rober and Seltzer also reference the argument of Aime Cesaire that “those conquered and exploited by imperial powers also suffer devastating psychological damage. Colonialism, he argued, not only stripped colonized peoples of their natural resources but, perhaps more destructively, robbed them of confidence in their own strengths and resources.” (124). In this way, the burden experienced by a patient whose capacity is overwhelmed or exceeded by treatment is confounded by decreased perceived self-efficacy or confidence in their capacity to cope, which in turn further decreases his or her capacity to cope with treatment. If this cycle of overburdening and decreasing capacity continues, a patient is sure to encounter not only unsatisfactory health outcomes but consequences in other aspects of life due to the burden of treatment.
Rober and Seltzer defined four characteristics of the colonizing family therapist (please see also the table below): “the therapist becoming overly responsible for the family, too much focus on change in the family, disrespect for the family’s pace, and most importantly, neglect of the resources that the family already possesses that could be used to make a positive change .” (125) These features correspond to aspects of disruptive medical practice: the physician assumes too much responsibility for decision making and/or care of the patient (instead of sharing such tasks with the patient), a focus on clinical goals that strays from patient goals and/or priorities, failure to evaluate, disregard for, or misunderstanding of patient’s capacity to cope with treatment, and neglect for the patient’s resources or assets for coping with the burden of treatment.
The Colonizing Family Therapist The Colonizing Healthcare Provider
Becomes overly responsible for the family Assumes too much responsibility for decision making and/or care of the patient (instead of sharing these to the extent that the patient’s ability)
Focuses too strongly on change Focuses too strongly on treatment goals that stray from the patient’s own goals or priorities
Disrespects the family Fails to evaluate or disregards or misunderstands the patient’s preferences or capacity
Neglects the family’s own resources Neglects the patient’s own resources or assets that can be used to cope with BoT
A conscientious clinician can avoid the “colonizer position” using minimally disruptive medicine as an approach to work with patients and implement a treatment that fits. In addition to emphasizing the importance of finding treatments that are effective within each patient’s goals and contexts, the Rober and Seltzer paper raises an important part about the patient’s capacity. Instead of looking only for the ways in which a patient falls short of being able to cope with a treatment burden, health care providers should find ways in which a patient’s strengths can support treatment with the aim of integrating the work of treatment into “normal” life. This idea of strengths-based design is neither new nor unique to MDM, and I think that this concept itself may yield interesting and valuable lessons on making care really fit. I have some further reading and investigating to do, but I look forward to discussing these issues with you in future posts.
Rober, P and Seltzer M. 2010. Avoiding colonizer positions in the therapy room: some ideas about the challenges of dealing with the dialectic misery and resources of families. J. Family Process: 49:1; 123-37.