Knocking on Heaven's Door: The Path to a Better Way of Death (47 page)

000
and was a member
: “Fortune 500: St. Jude Medical Snapshot,”

CNNMoney, accessed September 25, 2012, http://money.cnn.com/

magazines/fortune/fortune500/2011/snapshots/10595.html.

KnockingHeaven_ARC.indd 305

1/31/13 12:27 PM

306 Notes

13: DeActivAtiOn

000
dementia’s seven roughly sequential stages
: Susan J. Mitchell, “A 93-Year-Old Man with Advanced Dementia and Eating Problems,”
Journal of the

American Medical Association
21, no. 298 (2007): 2527–2536.

000
5 percent to 10 percent
:
Center for Excellence on Elder Abuse and Neglect, University of California at Irvine, “Research Brief: Facts You

Need to Know,” National Center on Elder Abuse, February 2012.

000
some griefs augment the heart
: Jane Hirshfield, “Stone and Knife,” in
American Poetry Review
38, no. 5 (September/October 2009), http://

www.aprweb.org/issue/septemberoctober-2009.

000
Ohio State University released a study of the DNA
: Amanda K. Damja-novic, et al., “Accelerated Telomere Erosion Is Associated with a Declining Immune Function of Caregivers of Alzheimer’s Disease Patients,”

Journal of Immunology
179, no. 6 (2007): 4249–4254.

000
In a case Bramstedt reported in 2003
:
K. A. Bramstedt, “Ethics in Medicine: Questioning the Decision-Making Capacity of Surrogates,”
Internal Medicine Journal
33, no. 5–6 (2003): 257–259.

000
beeping and squealing monitors
:
Sherwin Nuland,
How We Die
(New York: Vintage Books, 1994), 254.

000
would not honor his paper DNR
:
The only proof of a valid DNR that is reliably honored by paramedics in numerous states is a bracelet from

MedicAlert Foundation. See, for example, DNR regulations guidance

listed at http://www.ctacep.org. (Connecticut).

000
recover well enough
:
From a 2010 study of more than 95,000 cases of CPR, cited in Ken Murray, “Why Doctors Die Differently,”
Wall Street
Journal,
February 25, 2012. Adapted from an article first published online in Zocalo Public Square.

14: tHe ARt OF DyinG

000
did seem to be praising the Lord
: Anthony Froude,
Short Studies on Great
Subjects
(London: Longmans, 1884), 2: 99; cited in Frances Comper,
The Book of the Craft of Dying and Other Early English Tracts Concerning
Death
(London: Longmans, Green, and Co., 1917), xx.

000
I forgive you. good-bye
: Ira Byock,
Dying Well: Peace and Possibilities at the
End of Life
(New York: Riverhead Books, 1997), 140.

000
In a study of Zen funeral rituals
: William M. Bodiford, “Zen in the Art of Funerals: Ritual Salvation in Japanese Buddhism,”
History of Religions,
Vol. 32, No. 2 (Nov., 1992): 146–164.

KnockingHeaven_ARC.indd 306

1/31/13 12:27 PM

Notes 307

15: AFteRWARD

000
Dying, death, and mourning
:
Letters of Eliza Butler, Butler family papers, Corey Library, Rhodes University, Grahamstown, South Africa.

000
It was a sad noise to hear
:
Samuel Pepys,
The Diary of Samuel Pepys,
ed.

Henry B. Wheatley (London: George Bell & Sons, 1893), entries for July 30, 1665 and Aug. 31, 1665, available in an online edition, accessed July 25, 2012, http://www.pepysdiary.com/.

000
white ashes
:
Rennyo:16 (Hakotsu no Gobunsho.)
Letters in the Five
Fascicle Collection (Gojo Gobunsho)
in
Shinshu Shogyo Zensho,
Vol 3.

513–514. Oyagi Kobundo, Kyoto 1941. Translated into English by Hisao

Nagaki.

16: vAleRie MAkeS uP HeR MinD

000
nearly three billion times
:
Arthur E. Weyman and Marielle Scherrer-Crosbie,
“Marfan Syndrome and Mitral Valve Prolapse”
Journal of Clinical Investigation,
114, no. 11 (2004): 1543–1546.

000
He had retired from surgical practice
: The description of Moore’s final years is drawn from Atul Gawande’s extensive profile, “Desperate Measures,”
New Yorker,
May 5, 2003, 70–81.

000
losing the memory
: Sandeep Jauhar, “Saving the Heart Can Sometimes Mean Losing the Memory,”
New York Times,
September 19, 2000,

accessed September 26, 2012, http://www.nytimes.com/2000/09/19/

science/saving-the-heart-can-sometimes-mean-losing-the-memory.

html?pagewanted=all&src=pm.

17: OlD PluM tRee bent AnD GnARleD

000
$80,000 to $150,000
: Estimate based on an interview with Medicare cardiology reimbursement expert Rebecca Sanzone, director of physician auditing and quality assurance for St. Agnes Hospital, Baltimore,

MD. Also data from Medicare listing the median (50th percentile) pay-

ments to hospitals for the relevant procedures in 2009. Reimbursements

vary widely by region and complications encountered. Teaching hospi-

tals and those treating poorer and sicker patients are paid more. Sur-

geons, anesthesiologists and other doctors are reimbursed separately.

000
a fifth die in intensive care
: Alvin C. Kwok, et al., “The Intensity and Variation of Surgical Care at the End of Life: a Retrospective Cohort

Study,”
Lancet
378, no. 9800 (2011): 1408–1413.

KnockingHeaven_ARC.indd 307

1/31/13 12:27 PM

308 Notes

000
Medical overtreatment
: Donald M. Berwick and Andrew D. Hackbarth,

“Eliminating Waste in US Health Care,”
Journal of the American Medical
Association,
307, no. 14 (2012): 1513–1516.

000
13 percent of patients
:
K. P. Alexander, et al., “Outcomes of Cardiac Surgery in Patients Aged >/= 80 Years (Results from the National Cardiovascular Network),”
Journal of the American College of Cardiology
35

(2000): 731–738; cited in Jonathan E. E. Yager and Eric O. Peterson,

“Cardiac Surgery in Octogenarians: Have We Gone Too Far or Not Far

Enough?”
American Heart Journal
1147, no. 2 (2004): 187–189.

000
In a smaller, confirming study
: Mohamed Y. Rady and Daniel J. Johnson,

“Cardiac Surgery for Octogenarians: Is It an Informed Decision?”
American Heart Journal
147, no. 2 (2004): 347–53.

000
Old plum tree bent
: Eihei Dogen,
Moon in a Dewdrop,
ed. Kazuaki Tanahashi (San Francisco: San Francisco Zen Center, 1985), 114.

000
best season of your life
: Stephen Mitchell, trans.,
The Enlightened Heart:
An Anthology of Sacred Poetry
(New York: HarperPerennial, 1993), 47.

000
Lung cancer patients
:
J. S. Temel, et al., “Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer,”
New England Journal of

Medicine
353 (2010):733–742.

KnockingHeaven_ARC.indd 308

1/31/13 12:27 PM

Author’s Note

I wrote as a reporter and a daughter, and this is a braid of book,

part memoir, part medical history, and part investigative jour-

nalism. I had full access to my parents’ medical and Medicare

records and I interviewed many of their doctors. Direct quota-

tions from nonfamily members come from interviews, letters,

and medical records and are verbatim, except for minor edit-

ing for clarity or rhythm. The names of no doctors have been

changed. There are no composite characters, invented quotes

or fabricated scenes.

The family scenes are as accurate as memory, letters, jour-

nals, and conversations with surviving family members can

make them. Some dialogue is drawn, however, from my fallible

memory. I set down events as I remember they occurred, but I

may unwittingly have put a few out of chronological order. In

a few minor cases, events and chronology described here differ

KnockingHeaven_ARC.indd 309

1/31/13 12:27 PM

310

Author’s Note

slightly from my account in the
New York Times
article, “What

Broke My Father’s Heart,” due to my discovery of additional let-

ters, journal entries, and other records.

I have taken liberties in describing my inner world. In some

places I have included research, memories, or insights that were

revealed to me at a later time. In consideration of their privacy,

the names of three people—here called Michael, Angela, and

Lisa—have been changed, and so have identifying details for

a few minor characters. The larger truths of the story, I hope,

remain intact.

I have not told you everything. But what I have told you is as

true as I can make it.

KnockingHeaven_ARC.indd 310

1/31/13 12:27 PM

Acknowledgments

I gratefully acknowledge my debt to those who helped me, both

those mentioned here, and many I cannot list by name. You

know who you are: thank you for your kindness and generosity.

Brian Donohue, my beloved editor-in-chief, listened to me

read almost every chapter of this book aloud, had the integrity

to tell me when it was boring, and fed me in every way. My

brother Jonathan Butler listened to whole chapters while he

drove trucks across country, gave me astute editing suggestions

that substantially improved the narrative, and gave me carte

blanche to tell my truth. Reporter Nicholas Kusnetz, formerly

of ProPublica, found me studies and statistics, fact-checked,

and provided crucial investigative reporting on lobbying and the

medical device industry. This would not be the book it is with-

out Brian, Jonathan, and Nick.

In New York, I was blessed with expert, dedicated hands.

KnockingHeaven_ARC.indd 311

1/31/13 12:27 PM

312 Acknowledgments

Thank you to my literary agent, Amanda Urban of International

Creative Management, and to Whitney Frick and Nan Graham

of Scribner, all of whom provided the kind of editing and care

that I’d been told no longer takes place.

Placing our family’s medical experience within a wider social

context required the help of skilled researchers and fact-check-

ers, many of them alumni or current students of the Univer-

sity of California’s extraordinary graduate school of journalism.

Bridget Huber, Rebecca Wolfson, Roberta Kwok, and Cathe-

rine Traywickfound medical studies and corrected inadvertent

errors, working cheerfully and at a high standard. Thank you

also to assistants Patrici Flores and Rachel Habib. Book coach

Leslie Keenan generously shared with me her mastery of time

management, strategic planning and execution.

Those who read some or all of the manuscript or otherwise

provided encouragement and honest feedback (and niggling

copy-edits) include a posse of old friends, hiking partners, fel-

low Wesleyan alumni, and fellow writers. Thank you to Eliza-

beth Andrews, Alison Bartlett, Lisa Bennett, Lauren Cargill,

Jonathan Dann, Katherine Ellison, Deirdre English, Mark

Fuller, Laura Fraser, Philip Gourevitch, Constance Hale, David

Tuller, Jane Hirshfield, and Rachel Houseman.

Thank you also to readers and fellow writers Barry Jacobs,

Elizabeth Krivatsky, Stefanie Marlis, Manijeh Nasrabadi, Bar-

bara Newhouse, Noelle Oxenhandler, Eve Pell, Anna Quindlen,

Cathryn Ramin, Catherine Abby Rich, David Roche, Pat Sul-

livan, Marian Sandmaier, Dani Shapiro, Eva Shoshany, David

Sheff, Julia Flynn Siler, Lauren Slater, David Sterry, Jason Rob-

erts, Bart Windrum, Robin Wolaner, and Mel and Patricia Ziegler.

Some passages, in different forms, were previously published

in the
New Yorker, Mother Jones, Tricycle, MORE, Psychotherapy

Networker,
and the
New York Times Magazine
. Thank you to the editors who helped me to tease out the thinking often half-KnockingHeaven_ARC.indd 312

1/31/13 12:27 PM

Acknowledgments 313

buried in my first drafts: Charles McGrath, Bernard Ohanian,

James Shaheen, Peggy Northrop, Dawn Raffel, Nanette Varian,

Rich Simon, Ilena Silverman, and Erica Goode. Thanks also to

Rebecca Skloot and her father Floyd for including “What Broke

My Father’s Heart” in
Best American Science Writing 2011.

The only way I can fully thank Adam Hochschild, Jack Kornfield,

Dennis McCullough, Joan Halifax-roshi, Mary Pipher, Sherwin

Nuland, and Alexandra Styron for blurbs and early encourage-

ment is to pass on to others the generosity they showed me.

The
New York Times
is a national treasure, and I thank its

reporters and contributors Reed Abelson, Pam Belluck, Jane

Gross, Anemona Hartocollis, Robin Marantz Henig, Barry

Meier, Robert Pear, Tara Parker-Pope, and Paula Span. My debt

to the work of Atul Gawande cannot be overstated. His ele-

gantly written fact pieces for the
New Yorker
have helped me,

and many others, understand the Rube Goldberg behemoth

that is our medical system. For this book, I drew especially on

“How We Age Now,” “Desperate Measures,” “The Cost Conun-

drum,” and “Letting GoThanks are due to other writers explor-

ing this forbidden area: first-person pieces by Jonathan Rauch,

Michael Wolff, and Sandra Tsing Loh emboldened me. We may

not know each other, but we are in conversation. Blue Moun-