Yesterday, after months (even years) of consideration, my Dad was scheduled to check into a hospice facility to have his pacemaker / defibrillator device shut off. He had chosen the date; received the reluctant approval of his wife, children and brothers; and had the full support of his two heart doctors, primary care physician of 17 years, and his whole hospice team.

Without the device, Dad would live only hours, days, or at most (and very unlikely), a few weeks. He would remain at the hospice facility for management of pain, anxiety, breathing issues and fluid build up. Peace and comfort would be with him during his final journey. His faded “Do not Resuscitate” tag dangled from his neck.

A few months ago when Dad’s heart doctor of 19 years retired, fear of the new doctor not understanding his desires became an issue. That is, until we met her. She deals with end-of-life heart patients every day. With each of our three visits over the summer, she spent a great deal of time explaining what Dad could expect if he kept going as is, or disconnected his device.

Dad’s doctors told us about Alive Hospice and we thank God for them every day. But yesterday, the comfort that their staff has brought into my parent’s home and my father’s soul was shattered only minutes before Dad would get in the car with us to drive to Hospice to disconnect his device.

Another doctor in the same department as Dad’s regular heart doctor (but who had never before spoken to my father, and admitted he had not seen Dad’s file) called the house and told my parents that if Dad disconnected the device, he would not die. He discounted everything Hospice and the other doctors have said, and told them Dad would suffer and have a decreased quality of life and a harder time breathing. (No mention of medication to comfort Dad for anxiety and/or pain, or oxygen when his decreased breathing occurred.)

This man basically pulled down a white screen to show Dad the movie JAWS, just before Dad could enter the ocean and swim out to the afterlife.

Now my father—who remains scared of the physical, mental and emotional state of living—is terrified to go in the water (disconnect the device) even though he still wants to. He walks on a scorching hot beach full of flesh-eating creatures, but has become too afraid to go in the ocean, even though there is a nice sailboat waiting to take him (comfort meds, Hospice staff, and family).

Whether this doctor (who we have found out deals with the device companies) scares people into leaving their devices on for religious reasons, or purely a heartless lack of consideration for quality of life, is unknown. Either way, he had no business calling my father, let alone lying to him that he would left to suffer.

Today, as my frustration turns to understanding, I have to think now must not be the time for Dad to meet his maker; I cling to the belief that when someone’s ill-thought actions steer you down a path that you might not want to take, you still examine the wrong-doing to see if changes need to be made in your own actions or thoughts.

In this case, these medical devices are like being driven around in a luxury car, but when you decide you want out, they tie a rope around your chest and drag you along a rocky dirt road where you feel every bump, and breathe in dust and decay. This doctor who scared my Dad represents the car maker (device manufacturer), not the passengers (patients).

So what needs to be examined here is the fact that some in the medical field have come to the point where machines matter more than humans, like a bad sci-fi movie. I am eternally grateful for the technology and three devices that have kept my father alive for the last 13 years, but when this man who gave me life decides that he is ready to let go of his, I believe he ought not be bullied or burdened. He needs to follow his own heart—with or without a device intact.

Written on September 24th, 2013 , Uncategorized Tags:
Debbie Emory

Making Magic Out of Everyday Moments