When Dr. Parkham told me they had given Addison an ommaya reservoir, I was in complete shock.
I stared at him with wide-eyed incredulity.
"No! They didn't!"
He looked at the ground ruefully and shook his head. "I know... believe me, you're not the only one who thought it was a little crazy."
How could they? How could anyone in their right mind drill a hole in the head of a little girl dying of cancer and pour chemotherapy in!?
Especially with what happened next. One of our newer doctors told me the story of how he was called to witness Addison's first intrathecal chemo administration so that he would know how to operate the ommaya afterward. He said that while the fluid flowed into the space around her brain, Addison turned blue and stopped breathing. Although she recovered shortly after, that doctor flatly refused to do the next "treatment."
Unfortunately, even the spinal fluid chemotherapy did not help; it was beyond human intervention. Sadly, Addison died from her tumor a few days later.
So heartbreaking.
-------------------------------------------------------------------------------------------------
Here is my take, and probably most of the rest of the world's, on palliative care: when death is inevitable, the goal becomes COMFORT. If you do anything that does not make the patient more comfortable, you are really breaking the Golden Rule of medicine, which we all know is: Do no harm.
Doing no harm is usually taken to mean one of two things: curing disease, and/or relieving pain. Therefore causing more pain to extend the life of a suffering person is harm.
I think this is why Addison's story has always bothered me so much. Its been over a year but I really couldn't write anyone else's story out until I had written hers. I feel in her case, we gave in to a parent's wishes and violated the Hippocratic oath.
And its something I've had a hard time forgiving us for.
Sunday, August 12, 2012
Wednesday, August 01, 2012
Addison: Part VII
Relapsed, widely metastatic ATRT is fatal.
It just is.
Not immediately, of course; but there isn't much to do, although I guess you could argue for some palliative radiation. The chemotherapy she had continued to receive throughout the last few months of her life- the best therapy available, to our knowledge- obviously hadn't worked. In the end, with such an aggressive tumor, you sometimes have to accept fate.
I wish that Addison's parents had understood that. Sometimes I wish the internet didn't really exist; not for sleep deprived people desperately trying to fact search for a miracle drug in the wee hours of the morning, anyway.
Not that any such drug existed, or popped up in a google search. But desperate parents are, well... desperate. And when it comes to death and dying, I've learned this lesson: you absolutely cannot make a parent who is not ready accept death for their child. No words exist in the English language that can get across the truth to a person who is not ready to hear it. In fact, many of our parents who have children with poor prognoses are conditioned by support groups or their own inner vows to adamantly reject "giving up." Some of them simply cannot do it and fight vigorously against "accepting" death. Patients themselves are often the same and refuse to hear their own CT results or discuss end of life care.
In Addison's case, her parents were not ready to accept death. Neither was her primary oncologist, who offered them further therapy. Since systemic chemotherapy hadn't worked, her doctor researched giving chemotherapy into the fluid surrounding her brain and spinal cord. It had been done a few times with some anecdotal success in kids with ATRT.
This is called "intrathecal" chemotherapy. We do it routinely for children with leukemia to treat any cancerous cells in their spinal fluid, as that fluid can serve as a reservoir for the disease. The normal method for giving spinal chemotherapy is through lumbar punctures- "spinal taps." These are very common on the oncology service for so-called "liquid" tumors.
However, this is not routine for solid brain and spinal cord tumors. And since Addison's tumor was growing around the bottom of her spinal cord, it was not even possible to do a lumbar puncture to inject chemotherapy.
So something more drastic was done instead.
A hole was drilled in Addy's skull (called an "ommaya reservoir") to be used as a kind of permanent "brain" tap for chemotherapy.
It just is.
Not immediately, of course; but there isn't much to do, although I guess you could argue for some palliative radiation. The chemotherapy she had continued to receive throughout the last few months of her life- the best therapy available, to our knowledge- obviously hadn't worked. In the end, with such an aggressive tumor, you sometimes have to accept fate.
I wish that Addison's parents had understood that. Sometimes I wish the internet didn't really exist; not for sleep deprived people desperately trying to fact search for a miracle drug in the wee hours of the morning, anyway.
Not that any such drug existed, or popped up in a google search. But desperate parents are, well... desperate. And when it comes to death and dying, I've learned this lesson: you absolutely cannot make a parent who is not ready accept death for their child. No words exist in the English language that can get across the truth to a person who is not ready to hear it. In fact, many of our parents who have children with poor prognoses are conditioned by support groups or their own inner vows to adamantly reject "giving up." Some of them simply cannot do it and fight vigorously against "accepting" death. Patients themselves are often the same and refuse to hear their own CT results or discuss end of life care.
In Addison's case, her parents were not ready to accept death. Neither was her primary oncologist, who offered them further therapy. Since systemic chemotherapy hadn't worked, her doctor researched giving chemotherapy into the fluid surrounding her brain and spinal cord. It had been done a few times with some anecdotal success in kids with ATRT.
This is called "intrathecal" chemotherapy. We do it routinely for children with leukemia to treat any cancerous cells in their spinal fluid, as that fluid can serve as a reservoir for the disease. The normal method for giving spinal chemotherapy is through lumbar punctures- "spinal taps." These are very common on the oncology service for so-called "liquid" tumors.
However, this is not routine for solid brain and spinal cord tumors. And since Addison's tumor was growing around the bottom of her spinal cord, it was not even possible to do a lumbar puncture to inject chemotherapy.
So something more drastic was done instead.
A hole was drilled in Addy's skull (called an "ommaya reservoir") to be used as a kind of permanent "brain" tap for chemotherapy.
Subscribe to:
Posts (Atom)