The "on the hour" news I woke to this morning included the information that Pope John Paul has a feeding tube. This unusually intimate kind of comunique from the Vatican has shaken me to some extent. I keep asking myself what it means; wondering how long it has been there.... Did the symposium at the Vatican a few years back (the one that declared feeding tubes part of ordinary care and not a treatment or "extraordinary means") offer the Pope himself guidance in a discernment about whether or not to accept this procedure? Is the Pope making himself again a kind of trailblazer or witness to the value of "assisted" living? Is he going ahead of us, showing us how it is done and making himself in some way a "test case" for the practicability of the Vatican directive?
Not that I don't have other questions, too. The matter also troubles me. Nutrition is a normal problem for the very elderly. It can be hard for the aged to consume the calories they need to maintain strength, precipitating a more rapid decline leading eventually, but directly, to death. Maybe not death by starvation, but by a progressive weakening of the whole system. Nutrition is also a delicate area for Parkinson's patients, since loss of muscle control can cause them to aspirate their food, leading to complications like pneumonia. In either of these cases, does a feeding tube just stave off to a degree or prolong the natural process of diminishment already initiated by old age or disease? Is putting off death the same as protecting or respecting life? When is a life fully lived? What constitutes natural death when the natural processes are bypassed by technology? Do you wait for other parts to wear out, or for a raging disease to finally take over?
Now, I admit I still find the whole gamut of tubes and shunts invasive and creepy, but if my life truly depended on one or many of them, I'd probably see it as a new form of the cross. Maybe that's how JP2 sees it, too.
Wednesday, March 30, 2005
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3 comments:
Sister Anne,
I believe that out of all this will come a great and long overdue dialogue about normal and extraordinary health care. The missing piece in this dialogue has been the disabled community, the ones who live every day with adaptive "pieces of latex" (as one disabilities activist called the feeding tube.)
My family has experienced situations at both ends of the what-is-a-life debate going on. With my infant son Eric, we had a respirator-dependent child whom at least one doctor called a "vegetable" whose beginning, middle, and end of life life was lived out and supported to our best ability in the neonatal intensive care unit where his body grew and he developed until his heart gave out. (He lived long enough to prove he was no "vegetable" but a responsive human being by all standards.) With my mother, we had a vital woman -- a WASP who flew airplanes in WWII -- who declined a feeding tube and whose end of life life was lived out and supported to the best of our ability at home, with us supplying nutrition and hydration by mouth while her body shut down and she got weaker until her heart gave out.
There are no simple, one size fits all solution to care of those who are dependent and for one reason or another cannot care for themselves. I believe that we gave both my son Eric and my mother Nickey the love, support, and care appropriate to their lives. I believe that other decisions would have also been appropriate.
When Pope John Paul II wrote his letter last year clarifying that nutrition and hydration is always normal care, bioethicist Art Caplan wrote a stinging response titled "Must We All Now Die With Tubes in Us?" The answer is no. We need not accept a feeding tube. But we may choose one if we like. And, I think, we must provide it to someone who has not made their wishes known.
Would it be true to say that the situation for the elderly is different than for the young?
We must all make peace with our parents' inevitable passing. How difficult it is to bury a child, even an adult child. It is something no one wants to encounter. I think as parents, we are hardwired to preserve the lives of our offspring. The impulse to do this is very deeply ingrained in us.
Isn't the other part of the directive about the feeding tube remaining in place once it's been inserted?
Redemptive suffering should fit in here someplace, and I think the Holy Father is following that path. And who of us imperfect humans--imperfect science notwithstanding--can truly know what goes on in the mind of someone in PVS? Most experts (like Caplan, whom I met at various Health Services Research conferences) have an agenda, arguing for a new definition of futility to overrule patients and/or families on a case-by-case basis based on the doctor's and/or ethicist's determination of the "best interests of the patient," of the expert's definition of "quality of life" that is also driven by an agenda of misplaced compassion, or convenience, or economics. Put another way: whose "quality of life" are we talking about? When one is hovering between life and death and nutrition/hydration by tube--or by any other artificial means--becomes beside the point or detrimental to functioning or maintenance of life, then the plug should be pulled. But when one severely brain damaged or PVS and is otherwise capable of LIFE for years, then those who care about him/her should err (however unsuccessfully in the tragic case of Terri Schiavo), on the side of LIFE.
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