Home for the 4th of July

            David was discharged this afternoon, July 3, 2015, feeling as well as he has for the past few weeks: low energy, but alert and able to enjoy quiet activities. He is no longer coughing up blood, or coughing constantly for an hour or two at a time, but some coughing persists. Since he has no healthy neutrophils, the white blood cells that are the major players in the immune system, he probably can’t actually recover from the pneumonia. But a chest x-ray shows the pneumonia is stable and not growing.

            Dr. Ballen’s best guess is that the bleeding was caused by the leukemia and not the pneumonia per se. David is now taking aminocaproic acid (a.k.a. Amicar), a hemostatic, which slows the breakdown of blood clots: it is used to control excessive bleeding.

            Because of some administrative confusion, our appointment with Care Dimensions (palliative care and hospice) was changed to Saturday, July 4th. Since David wants to continue semi-weekly clinic visits at Cox for transfusions and wants to continue taking all his medications, including hydroxyurea, he will sign up with Care Dimensions for palliative care rather than hospice. This way he is in their system as a patient. This should allow a smooth transition into hospice when the time comes.

            Here are some of Jim’s thoughts on this stage of our journey:

The two worlds of normal medicine and hospice are like two nations (a reference to American Nations by Colin Woodard) and you can’t be a citizen of both at the same time. The hospice citizen has accepted that death is near and that he won’t make that last trip to the emergency room, and that he’ll die of something that could—possibly—be delayed a few more days with aggressive treatment. He’s decided that acceptance (and possibly heavy sedation), not intervention, will be the response to that final cause of death.

The drink of ginger ale David had yesterday in the emergency department is a parable. He got great pleasure from it. He had wanted a drink for many hours, but was denied because of the possibility he would need an empty stomach so as to have general anesthesia for the bronchoscopy and the attempt to stop the bleeding surgically. This more aggressive treatment, which might prolong his life a few days or weeks, would also increase his short-term suffering. When he made the choice to forgo the aggressive treatment, life immediately got better, but also perhaps shorter. This is the basic idea of hospice. It’s not that you give up making great sacrifices that could lead to recovery. It’s that you give up on heroic interventions that cause suffering, strand you in the hospital, and at best prolong life a short time. In return you get more satisfaction during the time you have left.