Suffering and HW2

Today's post is a reflection on suffering and is based upon the seminal paper from 1982 in the New England Journal of Medicine by Dr. Eric Cassell entitled, "The Nature of Suffering and the Goals of Medicine". In this paper, Dr. Cassell for the first time, expounded on the chasm between the perception of patients that relief of suffering was the primary role of medical care; and the perception of physicians that their primary role was to cure disease.

Having worked in health care for 25 years, much of it in intensive care units, I can state categorically that our role was to cure as much as we could, even to the point of inducing more treatment burden and suffering on the patient and the family. Now, to be fair, we didn't enter the fray with that outcome in mind, but in our single minded pursuit of cure, it was often the case that much more suffering occurred. We rarely considered the suffering of the support system for the patient, as they endured the trials and tribulations of our "we can try this next" approach to cure.

Dr. Cassell notes that "people suffer from what they have lost of themselves" such as roles and responsibilities, job duties, lack of interaction with others, creativity, regular behaviors, etc. Often, our health care system continues to remove these items of personhood, until all that is left is the shell of the individual and the technology that is keeping the organism functioning. Suffering in this context is severe and is directly related to the role of medical therapies (not care) that remove personhood.

Relief of suffering, in contradistinction, would still seek cures as assertively as we currently do, however, it would not be the primary goal of therapy. The primary goal would be to keep the person intact - that is, to spend enough time with the person to know what gives meaning to their life, and to endeavor to not take that away. This is why, in my work with folks on Advanced Directives, that I ask them to write one or two paragraphs that are appended to the end of the document that describe what life is to them, and what makes living worthwhile. The vast majority of the time, it is not to fight for every last breath no matter what the cost; rather it is quality of interaction that is at a tolerable pain level. Quality of time versus quantity of time, and the ability to continue to be people, not diagnoses or symptomatolgies, but human beings searching for meaning in the face of life-limiting illnesses.

I encourage all of you to write your one or two paragraphs about what living means to you. Make sure that family, friends and health care providers all know these things and are willing to abide by your wishes. In this way, you can aleviate some of the suffering induced by the "cure at all costs" model of medical care.

Peace,
Dan