Measures of Decline
Death versus Decline
When did Faith start to die? On more than one occasion, I refused to equate what the doctors were saying with the thought that Faith was dying. Every time I looked at Faith, I saw a child full of joy and happiness. Faith always seemed so full of life, literally and figuratively. It was horrible and amazing to me to think that the life force that animated this child could ever leave her.
Perhaps the turning point for me was July 3, 2001, when our doctor at New England Medical prepared a "Do Not Resuscitate" (DNR) letter. The DNR was to be used in the event of a serious turn of events where the effort to save Faith's life would cause her undue pain and suffering relative to the unlikely benefits of such efforts. The DNR begins thusly:
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"To Whom It May Concern: Faith Altbush is a 7-year-old girl with a terminal brain tumor whose life expectancy is less than one year…" |
For most of her illness, I could never deny that Faith was being affected by the tumor as well as by the medications used to control it. However, during the last months of her life, it became more apparent what was happening. The tumor was slowly and surely denying her body the ability to sustain itself. Faith's wonderful spirit was there; but the body that animated that spirit was being taken from her. There are several ways to describe this process:
Here is one way to view Faith's decline — as a progression of life's most important gifts being diminished or stolen away:
The Measure of the Last Good Time
Throughout Faith’s illness I have tried very hard not to think about life without her. It seems pointless to talk about the things that might have happened in Faith’s life. But I did keep a mental list of the pleasures that were one by one taken away from Faith while she was alive that she (and we) could never again enjoy.
The medical world has its own way of measuring decline — the Karnofsky Performance Score (KPS).
"The performance score or status is a "tool" utilized by physicians to describe how well a patient can go about their daily activities. The main reason for oncologists to evaluate such a parameter is to determine the ability of patient to withstand the various types of therapy (i.e. surgery, chemotherapy and radiation therapy). The values for these scores are as follows:"
Reference: U. Penn
Oncolink FAQ|
KPS |
Meaning |
|
100% |
The patient has no complaints and is without evidence of disease |
|
90 |
The patient has minor signs/symptoms, but is able to carry out his or her normal activities |
|
80 |
The patient demonstrates some signs/symptoms and requires some effort to carry out normal activities |
|
70 |
The patient is able to care for self, but is unable to do his or her normal activities or active work |
|
60 |
The patient is able to care for self, but requires occasional assistance |
|
50 |
The patient requires medical care and much assistance with self care |
|
40 |
The patient is disabled and requires special care and assistance |
|
30 |
The patient is severely disabled and hospitalization is indicated; Death is not imminent |
|
20 |
The patient is very ill with hospitalization and active life-support treatment necessary |
|
10 |
The patient is moribund with fatal process proceeding rapidly |
|
0 |
Dead |
While the doctors at Duke and NEMC never shared their evaluations with us, these are our estimated scores for Faith: