Reply #31: I am dealing with these issues in a very personal way [View All]

[davekriss]

My mother has terminal lung cancer which metastized to her brain, causing seizures and respiratory arrest. I arrived to see her heavily sedated and breathing only through the aid of a respirator. A doctor approached us, checked to see if my mother was conscious (she was not), and advised us to end extraordinary care and let her die peacefully. The next day a palliative specialist advised the same, urging us to come to a decision in a day or at most two, as suffering would grow exponentially. The medical opinion was unaminous: Off the respirator, my mother would most likely take a couple of breaths then expire; there was zero percent probability that she'd live more than two days. Or so they told us.

And don't expect, they warned, that off the respirator she'd sit up and suddenly start talking to us, she had the consciousness of an infant they said. We didn't believe this. There were signs of higher cognitive function. She even laughed at my jokes through the fog of her sedation.

My family wrestled over what to do. Though there was no living will, my mother had often told us to not let her struggle for life dependent on artifical means -- "promise you'll pull the plug", she said. Despite her words, we reasoned if she was capable of making the decision now (to pull the plug), if she could be lifted off the sedation in order to mull over her options, then she had the right and deserved the dignity to be given the chance. So we weaned her off from the respirator while slowly reducing her sedation.

The ICU nurses said to us, "if you have anything to say to your mom, nows the time." None thought she'd survive off the respirator. She's off now. She did very well that first night and the ICU call her "Carol the Miracle".

She's still terminal, but since she was breathing well on her own the doctors' then advised palliative radiation on her brain tumors (they don't want to go further on the lungs as there is little healthy tissue left). The idea is life extension with quality. My mom, though, refused the care. Instead we moved her to hospice for nature to take its course.

In hospice, she's actually getting stronger every day. She breathes well, eats, sits up, and even moved to a wheel chair to be wheeled around the lovely grounds of the hospice campus. She says she wants to come home, to die at home with her husband and puppy. We're working on making that happen. Things are going well -- lovely, peaceful, beautiful despite the inevitable end.

During the course of working out what steps to take, we noticed that the hospital seemed to present biased info to us in order (we think) to lead us to pull the respirator with a heavy morphine drip (which would most likely have resulted in the quick death they expected because, while sedated, her reflex to breath on her own would have been muted).

Further, while hospice is 100% paid by Medicare, a nursing home is out of the question. One of the unbiased options we weaned out of the doctors was that my mom could've had a tracheotomy and stay on the respirator in a nursing home (until finally overrun by the cancer). Unfortunately, Medicare pays zero for that, which is strange -- they'll pay 100% if the patient volunteers to die quickly in a hospice, but 0% if the patient wants to fight death to the last gasp in a nursing home. What a choice!

Anyway...

(Imagine how we felt, those of us sitting in the hospice lounge, with the continuous coverage of the media circus known as "Terry Schiavo". Not fun.)