Why & How to Investigate
Death and Dying
Lessons of 30 years
Reflecting on the significance of endings
ENDINGS FORCE REVIEWS
Only in conclusions are the connections
between means and ends realized, the
"clash of interests and impulses
resolved" (Duncan, p. 82), and when
"we contemplate, and abide, and rest in
our presentations" (Mead, p. 385).
THE PHENOMENOLOGY OF ENDINGS
• Friday time
• End of academic terms
• End of academic and career/work
conclusions
• Dessert logic
FAREWELLS
DEATH AS CENTRAL CULTURAL METAPHOR
FOR UNDERSTANDING ENDINGS
Is this central metaphor to be terminus or
finis?
Dealing with finite time:
The phenomenology of deadlines
GOOD ENDINGS
last hurrah (last hoo-rah) noun. A final appearance or
effort, especially at the end of a career. [After The Last
Hurrah, a novel by American writer Edwin O'Connor
(1918-1968).]
Garrison finish (GAR-i-suhn FIN-ish) noun
The finish of a contest in which the winner rallies at the
last moment to score the victory.
[After Edward "Snapper" Garrison (1868-1930), a jockey
known for hanging back during most of the race and
finishing at top speed to achieve a thrilling victory.]
Really bad endings
Protesters at Dr. Tiller’s funeral.
A Kentucky funeral director wiping off
a small marker after a recent burial.
Across the United
States in 2009,
coroners and medical
examiners reported
spikes in the number
of unclaimed bodies
and indigent burials,
with states, counties
and private funeral
homes having to foot
the bill when families
cannot.
Obama’s Health Insurance Initiatives
Quickly Turned to Matters of Death
Researchers at the Dana-Farber Cancer Institute in Boston
interviewed 603 patients with advanced cancer. They asked the
patients, who had about six months left to live, whether their
doctors had discussed their wishes for end-of-life care. The
majority — 69 percent — said those conversations had not
taken place. And in their last weeks of life, those patients
who had talked with their doctors wound up with medical
bills that were on average 36 percent lower — $1,876
compared to $2,917 — than those of patients who did not have
end-of-life conversations with their doctors.
--Maggie Jones. “At the end of life, denial comes at a price.” New York
Times (April 3, 2009)
MEDICINE TAKES CONTROL
• Reflecting on the
successes of the 20th
century
• Medicine inherits from
religion the cultural
responsibility to oversee
final passage
• Death prevention as the
primary goal of medicine
• Death-as-disease, deathas-the-enemy, death as
result of medical failure
Franz Glaubacker, “The Physician” (1923)
SA Express-News
headline of August
21, 2004
Now that fewer people, especially those in the Western,
believe that life is a transitional phase leading to
immortality, they are left with nothing after death to
believe in. So their faith is placed in technology and
physicians who, ironically, have become decreasingly
equipped to deal with patients as humans.
Add to this equation that health care in the United
States is based on capitalist principles. There
people get medical treatment according to how
much money they have. Those without money
thus die prematurely.
However, public expectations about
medicine’s success in its war against
death are continuously fueled.
APRIL 12, 2005
55 years ago the Salk vaccine was released for
general use in the United States.
Big gun against cancer | Vanadium Corp. of America, 1960 | Jo Kotula (1910-98)
The biotechnology
company Tengion has
since 1999 been selling
new bladders made out
of the customer’s own
cells. From biopsy to
surgery, the process
takes six to eight weeks.
In June 2008 the newswires carried comments of David Sinclair,
the Harvard Medical School professor who found that mice given
large doses of resveratrol "live longer, they're almost immune to
the effects of obesity. They don't get diabetes, cancer, Alzheimer's
as frequently. We delay the diseases of aging."
Part of the contract between the modern
nation-state and its citizenry is the former’s
responsibility to kill what kills us—especially
lethal microbes.
AMERICANS’ FAITH IN MEDICINE & ITS
KNOWLEDGE FOUNDATIONS
Confidence in the leadership of medicine (GSS 1973-2008)
Consequences of class-based medicine in capitalist economy
Who is more likely to die in hospitals?
• Minorities are more likely than whites
• Men are more likely than women (64% v.
55%)
• Uninsured patients more than Medicare
recipients (70% v. 55%)
Americans increasingly die when they
no longer can afford to pay
Amount by which the
number of U.S. deaths
in 2000 from lack of
medical insurance
exceeded those from
AIDS: 967
--Source: Centers for Disease Control
and Prevention (Atlanta)/Institute of
Medicine (Washington)
FROM MORAL TO TECHNOLOGICAL
RITE-OF-PASSAGE
• More than half of attending
physicians & 70% of attending
physicians say they often violate
their own personal beliefs and
ignore requests from patients to
withhold life support in cases of
terminal illness (Am J. of Public
Health, Jan. 1993, n=1400 from 5 major
hospitals nationwide)
• According to Dr. Nicholas
Christakis (U. Chicago), 4070% of patients die in pain (first
phase study of Dying in
America)
FROM MORAL TO TECHNOLOGICAL
RITE-OF-PASSAGE--ii
• In 1990, it was estimated by the American Hospital Association
that seven out of ten deaths in the U.S. were somehow timed or
negotiated
• Dying has become a game of information control, with patients
uninformed of their fate.
• Recently, results of an eight-year clinical study of dying in
America, (Study to Understand Prognoses and Preferences for
Outcomes and Risks of Treatments) found little relationship
between what patients wanted and what, in fact, physicians
did. Living wills made little difference.
• More than one-third of families lose all or most of their life
savings in the course of caring for a dying member
PROFITING FROM THE DYING
PROCESS
In 2008, Medicare paid $50 billion just for
doctor and hospital bills during the last two
months of patients' lives - that's more than the
budget of the Department of Homeland
Security or the Department of Education.
--CBS “60 Minutes.” “Cost of Dying” (Nov. 22, 2009)
A study of nursing home patients, by Dr. Susan
Mitchell of Harvard and the Hebrew Rehabilitation
Home for the Aged, found that those with end-stage
Alzheimer's received more aggressive medical
treatment — including feeding tubes, intravenous
fluids and antibiotics and hospitalizations — than
cancer patients at the end of their lives.
--Gina Kolata. “When Alzheimer’s Steals the Mind, How
Aggressively to Treat the Body?” New York Times (May 18,
2004)
About one-third of total Medicare
spending is incurred by decedents
Andrew J. Rettenmaier & Zijun Wang, “Explaining the Growth of
Medicare II” Natl. Center for Health Policy Analysis (Aug. 6, 2002)
A study released May 2003 indicated how
between 1988 and 1999 cancer patients enrolled
in Medicare managed care plans (MMC) were
more likely to receive hospice care (32.4%) than
patients enrolled in fee-for-service Medicare
insurance (MFFS, 19.8%).
--Ellen P. McCarthy et al., “Hospice Use Among Medicare Managed Care and Fee-forService Patients Dying With Cancer.”
Journal of the American Medical Association (289[17]:2238-2245)
Medical costs exacerbates the
inequalities of death
Thirty-four percent of US nursing home patients who suffer
from Alzheimer's disease and other forms of
dementia receive their food through a stomach tube, even
though the practice is of dubious medical value,
according to a study published in the Journal of the American
Medical Association.
The study suggests the economics of Medicaid
reimbursements favor the potentially harmful practice
and that large, for-profit nursing homes were more likely to
use the devices. In addition, the study found
that nonwhites were more likely to be given feeding tubes
than whites.
--James Collins. “Study links Medicaid fees, use of feeding tubesFinancial incentives for nursing homes seen Boston Globe (July 2,
2003)
Avastin, which costs about $100,000 a year,
was in 2008 one of the most popular anticancer drugs in the world. Studies showed
that it extends life by only a few months.
DEATH EDUCATION IN
MEDICAL SCHOOLS
• Death fears of physicians
• On what’s taught (and what’s not) about death
SOCIALIZATIONS FOR END OF LIFE CARE
IN MEDICAL SCHOOLS
• About a decade ago, the RAND Corporation did a study
finding that by the year 2000, we'd need 20,000
geriatricians, and 35,000 by 2020. We currently have about
6,000. There are only 3 full geriatric departments in medical
schools
• Near absence of death education
• Limited education on palliative care
• Stigma within the profession of those who routinely deal
with dying
According to Joan Teno’s 2004 findings
(families of 1600 deceased patients in 22 states)
• 25% dying patients did not get enough pain
medication, and sometimes got none at all
• One in three family members say that hospital and
nursing home staff didn't provide enough emotional
support
• 25% felt the doctor's communication was poor.
• Only 15% of respondents said they thought
institutional healthcare providers had enough
knowledge of the patient to provide the best care
possible.
Source: Joan M. Teno; Brian R. Clarridge; Virginia Casey; Lisa C. Welch; Terrie Wetle;
Renee Shield; Vincent Mor. “Family Perspectives on End-of-Life Care at the Last Place of
Care.” Journal of the American Medical Association (2004(291):88-93.
The autopsy is rapidly disappearing in medical
education. Surveys show that today's medical
students may spend more than 80 percent less
time in dissections than did students in the 1950's.
The personnel to teach anatomy courses have
declined in parallel: anatomy faculty members are
aging.
--Abigail Zuger, “Anatomy Lessons, a Vanishing Rite for
Young Doctors,” New York Times (March 23, 2004)
Studies of autopsies have
shown that doctors
seriously misdiagnose
fatal illnesses about 20
percent of the time, … a
rate unchanged since the
1930's.
--David Leonhardt. “Why
Doctors So Often Get It
Wrong.” New York Times
(Feb. 22, 2006)
No autopsies for technological failures
that may have led to death
CHICAGO (Reuters; Nov. 12, 2006) - Most patients with
implantable heart defibrillators are buried with the devices still
inside them, stymieing efforts by doctors and companies to
retrieve and check the devices for evidence of malfunction.
Implantable cardioverter defibrillators, or ICDs, are stopwatchsized devices that detect and deliver a shock to the heart to
correct dangerous rhythms.
High-profile recalls of defective devices have raised awareness of
ICD safety, but researchers said they do not know the true rate of
malfunction because the devices are not routinely checked after
death.
New fear among those most likely to
die, the elderly: “death from intensive
care.” Consequence: “slow medicine.”
MEDICINE AS CAUSE OF DEATH:
ON IATROGENIC DISEASE
"A doctor can bury his mistakes, but an architect can only
advise his clients to plant vines." - Frank Lloyd Wright
According to the most respected
medical publication in the world, The
Journal of the American Medical
Association, the third leading cause of
death in the US after heart disease and
cancer is doctor-induced or iatrogenic.
--David Phillips, “Doctors: the Third Leading Cause
of Death in the US?”
"The United States loses more American lives to
patient safety incidents every six months than it
did in the entire Vietnam war. This also equates
to three fully loaded jumbo jets crashing every
other day for the last five years."
--The 2004 HealthGrades Patient Safety in American Hospitals study
Two of the world’s largest drug companies are paying
hundreds of millions of dollars to doctors every year in return
for giving their patients anemia medicines, which regulators
now say may be unsafe at commonly used doses.
--Alex Berenson& Andrew Pollack. “Doctors Reap Millions for Anemia
Drugs.” New York Times (May 9, 2007)
Average number of Americans killed each
week by prescription drugs: 1,900
--Food and Drug Administration (Rockville, Md.), 1999
In April 2005, Meridian Bioscience Inc., of
Cincinnati, mistakenly sent samples of a deadly
strain of influenza virus to about 4,000
laboratories in 18 countries. In 1957, the strain,
known as A(H2N2), caused an estimated one
million to four million deaths in a pandemic
known as Asian flu.
THE POLITICS OF DISEASE
COMPARATIVE FEDERAL EXPENDITURES
DISEASE
ANNUAL
DEATHS
1989 FEDERAL
EXPENDITURES
EXPENDITURES
PER DEATH
770,000
$1.0 billion
$1,300
Cancer
500,000
$1.4 billion
$2,800
Diabetes
36,000
$295 million
$8,200
Alzheimer’s
100,000
$243 million
$2,430
AIDS
35,000
$2.2 billion
$63,000
Heart
disease
Source: Max Gates, Newhouse News Service. "Federal Spending on AIDS Near Sum
Spent for Cancer." The Oregonian (June 15, 1989): E3.
Percentage change since 1930 in the
annual U.S. death rate for cancer: +11
--Harper’s Index, January 2000
Thinking About Implications of
“Successes” in Cultural War
Against Death
Chances that a U.S. adult does
not want to live to be 120 under
any circumstances: 2 in 3
--Harper’s Index, Jan. 2003; ABC News (N.Y.C.)
PLEASE LET ME DIE
• advance directives
• living wills
• DNR
On the Rise of the Right-to-Die, Death-withDignity Movements
• 1990 merger between Concern for Dying &
Society for Right to Die
• Derek Humphry’s Final Exit reaches top of New
York Times best-seller list in 1991
• Media attention given to Jack Kevorkian
• The rise of hospice
• Growing public support for euthanasia
A Minnesota judge ruled last
May that a 13-year-old
cancer patient must be
evaluated by a doctor to
determine if the boy would
benefit from restarting
chemotherapy over his
parents' objections.
Unlike the young women who had
become the poster children of the
right-to-die movement, in the Fall of
2009 the focus shifted to a 76-yearold retired truck driver from Billings,
Montana. Now, in death, Mr. Baxter
could make Montana the first state in
the country to declare that medical
aid in dying is a protected right under
a state constitution. His claim is that
a doctor’s refusal to help him die
violated his rights under Montana’s
Constitution
According to a Pew 2005
survey, 35% said they've
given their end-of-life
medical wishes a great
deal of thought and 36%
said they've given it some
thought. Only 27% said
they have put their wishes
in writing and 29% said
they have a living will.
HOSPICE
The National Hospice and Palliative Care
Organization reported that 1.3 million patients
received care from one of the nation’s 4,500 hospice
providers in 2006. This represents a steady increase
of more than 100,000 patients than the previous year.
Approximately 39 percent of all deaths in the US
were under the care of a hospice program in 2008.
As of 2002, only 23% of
American Hospitals offer
hospice care
After Congress passed a measure allowing Medicare
coverage of hospice care, the number of programs
increased from 1,500 in 1985, taking care of about
160,000 people, to 3,300 hospices in 2005, annually
caring for some 950,000 people. One quarter of
Medicare expenditures go to people in the last year of
life ($25,000 average per person in 1999)—the same
proportion as before hospice coverage.
--Robin Marantz Henig, “Will We Ever Arrive at the Good
Death?” New York Times (Aug. 6, 2005)
EUTHANASIA & PAS
• the Netherlands experience
• Kevorkian controversy
• support in U.S. over time
• status of the Oregon physician-assisted
suicide law
A feeding tube was removed
from Terri Schiavo, the severely
brain-damaged Florida woman,
after her husband won a court
ruling allowing her to die, despite
her parents' plea to continue life
support, October 15, 2003. She
has been in a vegetative state
since 1990, when her heart
stopped because of what doctors
said may have been a chemical
imbalance. Attorneys
representing her husband,
Michael Schiavo, said it will take
between a week and 10 days for
her to die.
Schiavo is shown with her
mother Mary Schindler in Photo
by Reuters
There are problematic cases of
involuntary euthanasia
London—January 13, 2004
Britain's most notorious serial killer,
former family doctor Harold Shipman,
has been found hanging in his prison cell
after an apparent suicide.
Shipman. known as “Dr. Death,” was
serving life imprisonment for murdering
15 elderly women with lethal doses of
heroin. A subsequent judicial inquiry
found him responsible for another 215
deaths over a 24-year medical career in
Britain's north. A further 45 patients died
in “suspicious” ways.
The Body Parts Industry
The first successful organ transplant took place on Dec. 23,
1954, when Richard Herrick received a kidney from his healthy
identical twin brother, Ronald. Richard survived for eight years
until the original kidney disease struck again.
HUMAN RECYCLINGS
• American tissue banks
• How should scare organs be allocated?
• Why in the state of Texas can corneas of the
deceased by harvested without family
permission?
• Should people be allowed to sell their organs
to the highest bidders?
• Should organs of executed prisoners should
be available to those in need?
Over six years, a UCLA medical school
official sold 496 cadavers for $704,600,
according to invoices that provide the first
evidence of the scope of the scandal in the
school's body donor program.
--Charles Ornstein and Richard Marosi. “$704,600
Billed for Cadavers.” Los Angeles Times (March 9, 2004)
As of 2006, 92,000 Americans awaited
transplants—66,000 for kidneys. Each day 18
of those waiting die.
A 2008 investigative story of the Los Angeles
Times reported on how four members of the
yakuza, the Japanese mafia, received liver
transplants at the UCLA medical center between
2000 and 2004. Two of the four men later gave a
$100,000 contribution to the medical center.
The Hague-March 29, 2007
Dutch broadcaster BNN plans to air a reality television show,
“The Big Donor Show,” where a terminally ill woman with an
inoperable brain tumor will decide who out of three young
patients will get her kidney.
Viewers will be able to advise the 37-year-old woman, known
as Lisa, via text messages which of the candidates to pick.
BNN, whose former director died from kidney failure and
spent years on a waiting list for a kidney transplant, told the
Algemeen Dagblad newspaper that the show is meant to
highlight the acute shortage of donors in the Netherlands.
In the summer of 2008 the American Medical
Association voted to lobby Congress to permit the
study of financial incentives for organ donation.
Nearly 100,000 people are on the national
transplant list and 18 die every day for want of an
organ.
RANGE OF SUCCESSFUL TRANSPLANTS
• No longer limited to such vital organs as hearts,
livers, lungs and kidneys
• Hands
• Larynx
• Trachea
• Femur
• Nerves and muscles
• The downside: recipients must take powerful
anti-rejection drugs for rest of lives—increasing
risk of infection, diabetes, cancer
Estimated market value of the usable
body parts of an adult human :
$46,000,000
--Wired 2003, (San Francisco)
Attitudes toward selling organs are correlated
with attitudes toward abortion, euthanasia, and
moral right of terminally ill to commit suicide
OK to sell kidney
Oppose selling of
own kidney
% difference
% approving
abortion on
demand
51.0%
35.4%
15.6
% approving
euthanasia
74.5%
60.9%
13.6
% saying
terminally ill have
moral right to
commit suicide
71.9%
57.1%
14.8
The tsunami that hit South Asia in 2004 left many
destitute, including thousands Indians. As many
as 150 women near Chennai are known to have
sold one of their kidneys for a large sum of
money.
--Randeep Ramesh, “Indian tsunami victims sold their kidneys to survive,”
Guardian Unlimited, 13 April 2007
<http://www.guardian.co.uk/tsunami/story/0,,1992965,00.html>.
Farhat Moazam of the Sindh Institute of
Urology and Transplantation in Karachi,
Pakistan, said "There are villages … in the
poorer parts of Pakistan where as many as 40
to 50 percent of the population of the village
we know only has one kidney.“
--Laura MacInnis. “`Transplant tourism’ on rise due to donor
shortage.” Reuters (March 30, 2007)
A body organ much in need and that people may contribute are kidneys. Most people
can live with only one, though their chances for survival are better if they have two. Do
you believe that people with two healthy kidneys should be permitted to sell a kidney to
a hospital or organ center to use for transplants?
In 2006, Iran passed a bill allowing individuals
to sell their kidneys. It remains the only
country where this has been made legal.