...self care is never a selfish act- it is simply good stewardship of the only gift I have, the gift I was put on earth to offer to others. Anytime we can listen to true self and give it the care it requires, we do so not only for ourselves but for the many others whose lives we touch.

Parker J. Palmer, Let Your Life Speak

Wednesday, December 4, 2013

Author Advocates Slow Medicine for Fragile Adults

Katy Butler argues for a new default, a gentler "slow" medicine 


Katy Butler has written a soulful account of long distance care giving, Knocking on Heaven's Door: The Path to a Better Way of Death(2013). Coalescing solid investigative writing and a daughter's story into an engaging narrative, the book is chocked full of resources, references, and hard data, shedding light on how and why many Americans needlessly lose control of their own lives- and deaths.

Needless, not because of inevitable physical decline, but because of the promulgation of "fast" medicine, a practice that, in the frail elderly, ends up failing to cure us from mortality anyway, and dismissing its emotional, spiritual, and economic costs. We are left with curative, technological medicine where the focus is on functioning organs but not human wholeness. 

Her father, Jeff Butler, was implanted with a pacemaker at age 84. Already a survivor of a widely damaging stroke, the family was hurriedly told the device was needed to regulate the slowing and unsteady heart beat and to better survive a hernia surgery. But the known risk never discussed was accelerated cognitive decline, and that appeared within weeks of the operation. Jeff became more incontinent and was nursed at home by spouse Val, Butler's mother, who eventually needed the assistance full time caregivers, first during the day, then, also through the night. But the decision for pacemaker was made in haste, and Butler believes the instrument did more to shorten Val's life and prolong her father's death than allowing them their last quality months together. 

Feeling that the pacemaker was only there to delay the inevitable, Butler and her mother tried in vain to have it deactivated, but no cardiologist would consent. On Jeff's death bed, the pacemaker kept doing its job, an absurdity. Val, exhausted from being the primary caregiver to her husband in his extended decline, refused a risky open heart surgery to repair an injured heart valve for herself,  dying within two years of Jeff's death.  

Fast medicine, with its dependence on devices of all sorts, began showing up in the 1950's, but exploded in the 1960's with the new capital that was available from Medicare and Medicaid. The pacemaker got its start as a temporary, external device that was invented to keep its beneficiaries alive in a dire emergency. Butler maintains that the external pacemaker is still available for surgical patients -without the need for an implanted one. Too, there are now guidelines from device manufacturers and physicians that allow for deactivation of internal pacemakers.

We could say the the pacemaker is the tip of the iceberg of "fast" medicine's fixation on high cost, technological machinery. However, the author warns us that the prevailing system of fast medicine in the U.S., at least for the frail aged, can easily have a boomerang effect of hastening disability, rather than slowing it down. Therefore, carefully weigh all procedures that require a general anesthesia, however routine and "minor." When you can, think about using a local. 

The author maintains that employing a team focused on palliative- not curative care- can be one way to maintain a path to a better death. The way might be easier if you remain at home since nursing facilities' first option are to call 911 if a resident has collapsed, regardless of a DNR you may have executed.  This, even in light of the fact that a minuscule 3% of nursing residents actually survive more than a few days, if they are successfully resuscitated at all.

Butler suggests a new 811 number (in addition to 911 of course) for responding with comfort, safety, and pain care- a number to call to avoid being hooked up to machines. She promotes a two year palliative care option and that it allow for more than the weekly nursing limit which now exists under hospice. She advocates enhanced payments for those who know us best: our primary care doctors. These are the medical providers who offer the best hope of a better way, according to Butler. 

Caregiving is a spiritual journey, and this facet is explored with sensitivity and authenticity. All our close relationships, especially those with our parents and siblings, bring our loss and grief into sharper focus. Adult children can find non-judgmental ways to support and encourage their parents and each other, even if they are not the heavy lifter. Butler, a Buddhist by faith tradition, shares how the Zen practice of meditation was a source of peace and serenity for her and her mother in Jeff's decline and in their continuing grief.

Toward this end of acceptance, readers are encouraged to find our way, to know we have real choices, and that the road we travel is shared by millions of adult children today.   



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Having been in ordained ministry in the UMC for 34 years, I've experienced the truth that although, clergy are frequently present for others, no one can offer what they don't have.That's why if you're a clergy person, you need someone who will listen to you. Not the random next closest person available, but rather someone like a spiritual director, a therapist, a peer who can be fully present to you. I hope the links and posts you find here will give you ideas, humor, hope and encouragement. Scott Endress

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