The Micromanagement of Decline

"Lamentation of Christ" by Andrea Mantegna

It’s strange to me how many people think that dying is an on/off process, that dying happens fantastically and matter-of-factly, akin to what we imagine in movies, someone still speaking on their deathbed, simply weak and feeble but unplagued by altered mental status, pain, respiratory distress, immobility, and agitation. That is not how dying works.

Indeed dying starts earlier than the dying process. Dying technically begins the minute we are born, but in many of our fanciful minds it only starts at the last hours, right before we pass. What truly works best from a palliative standpoint, however, is to view dying as the beginning of greater processes of irreversibility, something that generally starts months to years before actual mortality. This irreversibility starts the process of decline, which must be dynamically managed to optimize keeping as much stability as possible in a process which is meant to destabilize. Yes, dying is the process of creating greater and greater imbalance in an organism, until the forces of decay overwhelm the forces of homeostasis.

Hospice recognizes this process of decline preceding death - this is why Medicare, the largest American payor of hospice services, stipulates a general, six-months-before death estimation for onboarding a patient . But whereas most lay individuals would think there was little to do in that time, those passionate about palliative end-of-life care know there is the most to do at that time. The period of decline preceding death is a time of considerable management, often equal in acuity and intensity to what one would see in a hospital, but different in that the goal is not to cure what is incurable but to significantly soften the vacillations of the brutality of a patient’s physical degradation. This management, when well done, is much more meaningful than any so-called life-sustaining measures because it aims to address the real problems of decline - the symptoms - rather than focus on a cure at all cost.

It takes a Hospice and Palliative Medicine specialist, someone with experience in the management of decline and mortality, to recognize when the process of irreversible decline is setting in, to recognize the real prognostic timeline of a patient, to accurately diagnose the actual elements of what is besetting a dying patient in the moment, to carefully manage every aspect of what is being seen to achieve a smoother trajectory, and to manage the active physical finality of dying with dexterity. There is an art to managing mortality, it is by no means what everyone can do. It takes tremendous experience and patience and compassion to micromanage the elements of dying to ensure the most beautiful closure for the patient and family, peace.