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Why & How to Investigate Death and Dying
Lessons of 30 years
Reflecting on the significance of endings
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).
ENDINGS FORCE REVIEWS
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, death-as-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, 200555 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), 40-70% 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-for-Service 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 tubes- Financial 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 anti-cancer 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)
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 stopwatch-sized 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.
No autopsies for technological failures that may have led to 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
Heart disease 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
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-with-Dignity 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-year-old 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 kidneyOppose 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.