Knocking on Heaven's Door: The Path to a Better Way of Death (44 page)

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Notes for a New Art of Dying

to legal-medical paperwork. http://www.coalitionccc.org/advance-health-planning.php.

For a clear, quick introduction to advance planning, see the
San Jose Mercury News
’s excellent “Cost of Dying” pages by Lisa Krieger. http://www.mercurynews.com/cost-of-dying.

Medical Guardianship

A Durable Power of Attorney for Health Care gives someone you trust the

authority to make your medical choices when you can no longer make your

own. Like the others, this is only a start, and not a substitute for expressing your wishes and getting agreement in careful family meetings. Unless all family members are on the same page, doctors often override the “health care proxy”

and provide maximum treatment due to fear of litigation.

WHen cOMMunicAtiOn bReAkS DOWn

Hospitals are worlds unto themselves, with fragmented, tribalistic, and often nonexistent chains of command. Essentially they provide operating rooms, nursing, and diagnostic services, while each doctor uses the facility and bills separately as independent contractor. If auto repair shops were organized like hospitals, you would get one bill from the mechanic who fixed the radiator, another from the guy who did the brakes and fixed the sunroof, and yet another from the one who provided the shop floor and the lift. Each would focus on his own specialty, and nobody would supervise anyone else.

The result is often fragmentation of care and too many cooks, each narrowly focused on repairing a single vital organ, with no overall plan. A palliative care physician can help provide a coherent plan. A patient liaison, hospital social worker, hospice physician, or staff bioethicist can also help you negotiate this confusing culture. If your relative is getting too much, too little, or the wrong kind of care, ask for a “bioethics consult.” Some hospitals have anonymous bioethics hotlines.

PAceMAkeRS AnD DeFibRillAtORS: yOuR leGAl

AnD MORAl RiGHt tO DeActivAtiOn

Experts appointed by the American Heart Association, the Heart Rhythm Society, and the American College of Cardiologists have stated that disabling a pacemaker or defibrillator is neither assisted suicide nor euthanasia. Refer your physician to:

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Notes for a New Art of Dying 291

Lampert, Rachel, et al. “HRS Expert Consensus Statement on the Manage-

ment of Cardiovascular Implantable Electronic Devices (CIEDs) in

Patients Nearing the End of Life or Requesting Withdrawal of Therapy.”

Heart Rhythm
. 7, no. 7 (July, 2010): 1008–1026. Available from the Heart Rhythm Society online under the section “Clinical Guidelines and Documents.” http://www.hrsonline.org/Practice-Guidance/Clinical-Guidelines-

Documents/Expert-Consensus-Statement-on-the-Management-of-CIEDs.

bAD DeAtHS

These cautionary tales show what is in store for the unprepared:

Krieger, Lisa. “The Cost of Dying: It’s Hard to Reject Care Even as Costs Soar.”

San Jose Mercury News,
Feb. 5, 2012. http://www.mercurynews.com/cost-of-dying/ci_19898736. A blow-by-blow account of her 88-year-old father’s ten-day, $323,000 death in an intensive care unit.

Windrum, Bart.
Notes from the Waiting Room: How to Survive a Parent’s End-of-Life Hospitalization.
Boulder, CO: Axiom Action, 2008. This confusingly organized book contains valuable practical advice starting on page 60.

Wolff, Michael. “A Life Worth Ending: The Era of Medical Miracles Has Created a New Phase of Aging, as Far from Living as It Is from Dying. A Son’s Plea to Let His Mother Go.”
New York,
May 20, 2012
.
http://nymag.com/

news/features/parent-health-care-2012–5. Heart valve surgery fixed his

mother’s heart and worsened her dementia.

beReAveMent

Hospices provide free bereavement groups and counseling to family members of their patients for a full year after death. Others can pay out of pocket, often on a sliding scale. See also:

Safer, Jeanne. Death Benefits: How Losing a Parent Can Change an Adult’s Life—for the Better. New York: Basic Books, 2010.

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Valerie, Katy, and Jeffrey Butler, Pine Street, Middletown, Connecticut, November 2003.

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Notes

000
Epigraph
:
“I Fell,” by Makeda, Queen of Sheba, translated by Jane Hirshfield, from Jane Hirshfield, editor,
Women in Praise of the Sacred.

Harper Collins, NY, 1994.

PROlOGue

000
Whenever there is someone in a family
: Anton Chekhov,
Peasants and
Other Stories
(New York: New York Review of Books, 1999), 328. From the short story “Peasants.”

000
a doctor might well feel duty-bound
:
More than half of demented nursing home residents receive antibiotics in their last two weeks of life. Erika D’Agata and Susan L. Mitchell, “Patterns of Antimicrobial Use among

Nursing Home Residents with Advanced Dementia,”
Archives of Internal
Medicine
168, no. 4 (2008): 357–362.

000
Three-quarters of Americans want to die at home
: See, for example, Lake Research Partners and the Coalition for Compassionate Care of California,
Final Chapter: Californians’ Attitudes and Experiences with Death and
Dying
(Oakland: California Health Care Foundation, 2012), 1, accessed KnockingHeaven_ARC.indd 293

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294 Notes

September 23, 2012, http://www.chcf.org/publications/2012/02/final-

chapter-death-dying.

000
Two-fifths of deaths
: “Underlying Cause of Death 1999–2009 on CDC

WONDER Online Database,” Centers for Disease Control and Preven-

tion, National Center for Health Statistics, released 2012.

000
a fifth of American deaths now take place in intensive care
:
Allan Garland,

“Improving the Intensive Care Unit,” in
Surgical Intensive Care Medicine,
2nd ed., ed. John M. O’Donnell and Flávio E. Nácul (New York: Springer, 2009), 685.

000
can cost as much as $323,000
: Lisa Krieger, “The Cost of Dying,”
San Jose
Mercury News,
February 5, 2012, accessed September 23, 2012, http://

www.mercurynews.com/cost-of-dying/ci_19898736.

000
like an armed man
: the phrase is from Daniel Defoe’s semi-fictional account of the Great Plague of London,
A Journal of the Plague Year

(London, 1722).

000
a quarter of Medicare’s roughly $560 billion
:
Gerald F. Riley and James D. Lubitz, “Long-Term Trends in Medicare Payments in the Last Year of

Life,”
Health Services Research
45, no. 2 (2010): 565–576; and “Medicare,” Congressional Budget Office, accessed August 16, 2012, http://

www.cbo.gov/topics/retirement/medicare.

1: AlOnG cAMe A blAckbiRD

000
It is a predictable hazard
: Sherwin B. Nuland, How We Die: Reflections of Life’s Final Chapter (New York: Knopf, 1994), 65.

000
He thanked Sir Alexander Fleming
: Richard Tames, Penicillin: A Breakthrough in Medicine (Chicago: Reed Elsevier, 2000), 20.

000
prolonged and attenuated dying
: this beautiful phrase was coined by the pioneering geriatrician Dennis McCullough, author of My Mother, Your

Mother: Embracing “Slow Medicine,” the Compassionate Approach to

Caring for Your Aging Loved Ones (New York: HarperCollins, 2008). I

thank him for permission to use it here.

2: tHe tyRAnny OF HOPe

000
one of twenty-nine million unpaid
: National Alliance for Caregiving and AARP,
Caregiving in the U.S. 2009
(Bethesda, MD: NAC and AARP, 2009).

000
The requirements are so draconian
: Medicare Payment Advisory Commission, “Report to the Congress: Medicare Payment Policy (March 2012),”

282, http://www.medpac.gov/chapters/Mar12_Ch11.pdf.

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Notes 295

000
I discovered that the entry for Ambien
: Paul Walsh, ed., PDR 56 Edition 2002 Physicians Desk Reference (Montvale, NJ: Medical Economics/

Thomson Healthcare, 2002), 3194.

000
twenty-four million sons and daughters
:
National Alliance for Caregiving and AARP,
Caregiving in the U.S. 2009
(Bethesda: NAC and AARP, 2009). This describes a slightly different statistical cohort from the one on p. 34.

000
Some European countries
: Mark Merlis, “Caring for the Frail Elderly: An International Review,”
Health Affairs
19, no. 3 (2000): 141–149.

000
This doesn’t happen much in the United States
:
The limited exceptions are a few state programs and federal payments to family members caring for impoverished Medicaid patients, discussed in more detail in

“Resources.”
But even though our parents
: June R. Lunney, Joanne Lynn, and Christopher Hogan, “Profiles of Older Medicare Decedents,”
Journal of the American Geriatrics Society
50, no. 6 (2002): 1108–1112.

000
37 percent of baby-boom women
: I-Fen Lin and Susan L. Brown, “Unmarried Boomers Confront Old Age: A National Portrait,”
Gerontologist
52, no. 2 (2012): 153–165.

000
Medicare mainly funds one-to-one interactions
:
Public Affairs Specialist Ellen Griffith, Centers for Medicare and Medicaid Services, e-mail

message to author, May 2, 2012.

3: RiteS OF PASSAGe

000
just as it covers 45 percent
: Senate Special Committee on Aging,
Long-Term Care Report,
107th Cong., 2d sess., 2002, S. Prt. 107–74.

4: FASt MeDicine

000
By the age of seventy-five
: Sherwin B. Nuland, How We Die: Reflections of Life’s Final Chapter (New York: Knopf, 1994), 53.

000
Slow Medicine
: Alberto Dolara, “Invitation to ‘Slow Medicine,’”
Italian
Heart Journal Supplement
3, no. 1 (2002): 100–101.

000
Excessive eagerness to act
: Alberto Dolara, “Avoiding Haste in Clinical Cardiology,”
Acta Cardiologica
60, no. 6 (2005): 569–573.

000
To do more . . . is not necessarily to do better
: Interview with Francesco Fiorista, April 2012. See also Francesco Fiorista, “‘Fast Medicine’ and

‘Slow Medicine,’”
Italian Heart Journal Supplement
3, no. 6 (2002): 685.

000
more likely than their doctors to reject
: Dawn Stacey, et al., “Decision Aids for People Facing Health Treatment or Screening Decisions,”
Cochrane
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296 Notes

Database of Systematic Reviews
10 (2011): 38, doi: 10.1002/14651858.

CD001431.pub3.

000
nearly half of patients say they don’t get
:
Mick P. Couper, “Medical Decisions in America: the Patient Perspective,” Powerpoint presentation,

Foundation for Informed Medical Decision Making Research and Policy

Forum, Washington DC, January 28, 2009.

000
30 percent of seriously ill people
:
T. J. Mattimore, et al., “Surrogate and Physician Understanding of Patients’ Preferences for Living Permanently in a Nursing Home,”
Journal of American Geriatrics Society
45, no. 7 (1997): 818–824.

000
28 percent of people with congestive heart failure
:
Eldrin F. Lewis, et al., “Preferences for Quality of Life or Survival Expressed by Patients

with Heart Failure,”
Journal of Heart and Lung Transplantation
20, no.

9 (2001): 1016–1024. See also Lynne W. Stevenson, et al., “Changing

Preferences for Survival after Hospitalization with Advanced Heart Fail-

ure,”
Journal of the American College of Cardiology
5 (2008): 1702–1708, doi:10.1016/jacc.2008.08.028.

000
decried as reimbursement for “death panels”
:
Jim Dwyer, “Distortions on Health Bill, Homegrown,”
New York Times,
August 25, 2009, accessed May 28, 2012, http://www.nytimes.com/2009/08/26/nyregion/26about.

html?ref=betsymccaugheyross.

000
would probably not have lived
:
This is an area of controversy, as nobody knows with certainty how long my father might have lived without the

device. Many cardiologists argue that research shows that pacemakers

do not as a rule extend life for patients with Sick Sinus Syndrome or

asymptomatic bradycardia. Others note that as hearts further deteriorate with age and new problems emerge, some patients become “pacemaker

dependent” and are likely to die if the device is deactivated. (My father, for instance, was given diagnoses of paroxysmal atrial fibrillation and