D. N. R.

Line of the Day: “So I gather you’re not happy about entering hospice”

This was the response by a friend to the angst that had been share regarding the nature of the hospice economic model as it related to Evan’s situation.

This is one of the hardest blog posting that has ever been written. . . .ever. Sometime earlier this afternoon, the paperwork was signed entering Evan into the care of a local hospice organization. The papers were almost an inch thick stack of medico-legal mumbo jumbo, the gist – please die quickly, with the least amount of fuss, and we’ll be there to make it as painless as possible while maximizing the profit from your dying.

WARNING – WARNING – WARNING. Grief has been simplified as a five stage model that is neither regular, balanced, ordered nor sequential. Along the way the grieving person will experience: anger, depression, bargaining, acceptance, and denial. At the juncture of the writing of this post, the writer is experiencing ANGER at the DENIAL of compassionate service by hospice providers due to an economic DEPRESSION and a failed BARGAINING process on the behalf of those they purport to assist. And Evan is left to ACCEPT the realities of a red tape jungle that his parents seek to hack a path through to daylight. Clearly this is not the classic Kubler-Ross model, but when has this situation ever been classic?

But let’s push the rewind button and go back 4 weeks to the last set of scans. It was determined at editorial review that the full extent of the results of those scans would be revealed in a more deliberate manner as we all came to terms with the realities of what we saw in the images.

The images revealed not only a larger main tumor that was encroaching on Evan’s spinal cord but multiple metastatic tumors in multiple lymph nodes in and throughout his body and encircling his neck, additionally there were 30+ rapidly growing tumors in all fields of his lungs and no less than 5+ metastic tumors in his skeleton. In the 10 weeks since Evan had stopped taking the braking chemotherapy, the disease had gone into overdrive.

The images painted a picture of death. The choices were stark, brutal and devastating: Treat the disease to save spinal cord function and reduce pain vs. seeking out some other untried/untested guess; followed by - Should Evan die while suffocating from extensive tumor growth in his lungs vs. dying from starvation?

And all these decisions had to be made against a backdrop of clinical depression and despair on Evan’s part. Being the brightest light bulb in the box has not necessarily been to his advantage as he has reached two conclusions: He will live the remainder of his life in some degree of pain that has been his constant companion for the past 4+ years; and that he no longer had any confidence in any proposed treatment after so many failed attempts by the medical establishment. All he knew/knows is that his parents love him, and that he doesn’t want to hurt them, nor be seen as less than worthy of that love by quitting. He just wants to be a good boy and live a normal life.

So going back to the original line of this post, no we were not happy about entering hospice, nor do we know anyone who is happy about hospice; excepting those who have given up hope on life and seek the warm comfort of a dark enveloping end to their misery and pain. Please see Dr. Jack Kevorkian.

There is as hard, cold reality that is shied away from by all people, but especially those of us fortunate enough to have lived our lives entirely in the first world: Life ends in death. For all the religious and spiritual processes and rituals, not one of them can alter the ultimate physiological reality that our earthly lives are finite.

As Evan’s caregiver’s we needed to retool, reprioritize and rethink our roles, purposes and plans. We do not yet know the excruciation of parents surviving their child’s death, but the death of our dreams has been desperately painful. We had to shift into total support and service mode. A 13 year old young man is not just a child to be told what to do; they are a young adult with major psychological support needs before one throws the cold, wet blanket of impending death over their shoulders. Our call is to be there for him to meet every need he identifies.

Evan does not acknowledge the grave nature of his reality, but he knows. Evan does not talk about disease or dying, he often just doesn’t talk. Evan does not revel in his increasingly gaunt figure as he grows taller while continuing to lose weight, he shies away from seeing those who knew him before or wears disguising baggy clothes and sweats. His smile when it comes will still light up a room, but there is a painful response from that room as they look past the grinning teeth and see the hollowing cheeks and the taught cords of his neck.

And as people grasp the full nature of what is happening, the next inevitable question arises: How are you (the caregiver/parent) doing? Somewhere in recesses of your mind I would ask you to conjure up the elements of Greek mythology, specifically related to death if only because the imagery surrounding the transition between life and death is useful for relating the changing role of Evan’s parents from champions of the fight for his cure to becoming the most supportive and reliable people in his journey toward death.

A brief primer: Hades, a devilish God thrown out of Olympus by Zeus is doomed to rule the Underworld and its inhabitants, the dead. To reach the Underworld, the dead are transported across the river Styx (River of Hate) by a boatman, Charon (typical imagery presents this character as the Grim Reaper) who is to be paid 2 coins otherwise the dead were destined to walk the world in hate as ghosts never achieving any semblance of peace in the life to come.

The concept of Rest in Peace derives its origin from such mythology, and as a general rule humanity seeks to grant the dead the most decent passing from the land of the living to that of the dead as seen in our laws, customs and mores surrounding the sanctity of the dead human body. And so people, family, and friends will do all they can to ensure that the boatman is paid his two coins so that our loved ones are granted safe passage over the River Styx; what we are not prepared for, what we cannot imagine, what we most assuredly run from is having to take on the role of the boatman. But that is now our role.

As Evan’s parents we were helped in our transition to these roles with the capable caring and comforting words of wisdom of all the members of Evan’s treatment team at NIH. It was no wonder that Evan prefers to be treated there than anywhere else, even in death there was a continuing element of hope. And so we come full circle to the title of this post. DNR does not stand for Do Not Resuscitate as much as it stands for Death – No Regrets.