Like religion and law, medicine is a moral enterprise as it defines and manages individuals deemed undesirable by the broader culture. Over the course of this century, deviance has increasingly been medicalized, as is evident in our public discourse: one is no longer a drunkard but rather "suffers" from alcoholism; the slow-learner in school is no longer stupid but rather has a "learning disorder;" and instead of revealing a breakdown in the moral order, the current homicide trend is now an "epidemic." With the medicalization of death, many die only when their physicians permit it: 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.

As death became the central taboo, "death prevention" became a primary cultural value and the primary goal of medicine. (See Daniel Callahan's "Death and the Research Imperative," New England Journal of Medicine, March 2, 2000.) With the evolution of medical arts, death increasingly became viewed as a failure and a life-at-whatever-cost ethic (even if it means performing "Hollywood Codes") became the profession's central philosophy. This underlies our cultural preoccupation with the quantity of life (reinforced daily by Willard Scott), often to the absence of focus upon quality of life issues. This also underlies the practice of resuscitating or artificially maintaining the lives of those who prefer to die.

Ironically, even though the physician has become the cultural expert formally in charge of individuals' final rite-of-passage, he or she has woefully little socialization about dying, grieving, and palliative care.  Recently, results of an eight-year clinical study of dying in America, (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments) funded by the Robert Wood Johnson Foundation (William Knaus and Joanne Lynn, principal investigators), revealed that half of the 9,105 terminally-ill patients studied spent at least eight days comatose, in intensive care, or in pain just before they died.  Little relationship was found between what patients wanted and what, in fact, physicians did.  Living wills made little difference.

And then there's the matter of iatrogenic disease and death.  During the 5-week long physician strike in California in 1976, for instance, death rates declined.  In Los Angeles, the weekly death rate declined 18%, from 19.8 to 16.2 deaths per 100,000, during the strike and rose to 20.4 deaths after its conclusion.  In late 1999 the Institute of Medicine released a report claiming that errors by American physicians, pharmacists and other health care providers cause the deaths of between 44,000 and 98,000 hospitalized people annually--in other words, more than the combined total number killed by auto accidents, homicide, and suicide.  In 2004, a HealthGrades study of 37 million patient records concluded that during the years 2000-2002 an average of 195,000 Americans annually died because of in-hospital medical errors.  According to the report, "The United States loses more American lives to patient safety incidents every six months than it did during the entire Vietnam War.  This also equates to three fully loaded jumbo jets crashing every other day for five years."

With medicine controlling the final rite of passage, death is being stripped of many of its traditional moral connotations; the dying are stripped of their identities and their pasts. With continuing advances in medical technology, symptoms as opposed to whole selves increasingly become the unit of treatment. Death is increasingly perceived to be a "technological phenomenon" that occurs when medical staff decide that nothing more can be done. As a result, death is decreasingly likely to convey any of the meaning that brought solace to generations past, and the deceased are remembered not for who they were but rather for what killed them.

However, it remains the case that death still reveals core cultural values (which perhaps explains why  45% of all federal funds for university researching goes to the nation's 126 medical schools). Unfortunately, what's revealed are not the traditional values but rather how capitalism makes commodities out of human suffering and how those who prosper the most economically suffer the least. (Perhaps it's worth reflecting on the semiological significance of the caduceus: is it to be interpreted as the staff of Aesclepius, son of Apollo, the Greek god of healing; the symbol of Hermes, god of thieves and businessmen, who guides souls to the Underworld; or should we focus on the serpent, the symbol of Satan, whose offerings included knowledge and immortality?) Premature death too frequently occurs to those unable to afford medical treatment or to those who for some reason are defined as undeserving of heroic measures. Hence, the 59% longer wait of African-Americans for kidney transplants and the 89% higher rates of bypasses for whites than blacks; hence, the fact that poverty is so highly correlated with instances of breast cancer, lead poisoning, cardiovascular disease, underweight births, absence of medical insurance and, of course, lesser amounts of life itself.

Among the cultural consequences of medicine controlling the final passage are:

• The Institutionalization of Death. In the West, it wasn't until the 1930s that people began dying in hospitals. Even immediately after World War II, over seventy percent of all deaths still occurred at home. But from the 1950s on, institutional deaths became increasingly widespread. Currently, three-quarters of all deaths occur within such settings, wherein the dying experience has become increasingly divorced from the traditional coping rituals refined by the lessons learned over hundreds of generations. (Kathy Faber-Langendoen and Paul N. Lanken wrote in the Dec. 5, 2000 issue of the Annals of Internal Medicine that "Up to 60% of deaths in the United States occur in acute care hospitals, and of these, 75% occur after decisions to forgo treatment.")  And how conducive are hospital environments to dying well? Click here for Susan Brink's "The American Way of Dying" in U.S. News and World Report (Dec. 4, 1994).  According to a Time/CNN survey conducted in the late summer of 2000, seven out of ten Americans say that they prefer dying at home.

  It is interesting that the elderly, our culture's "shock-absorbers of death," fear nursing homes more than death itself. There is an inevitable tendency of total institutions to systematically strip residents of their various social selves, such as their spousal, parental, friend, neighbor, congregation, and community member roles. In hospitals and nursing homes one is too often reduced to one's biological self, which is professionally treated by strangers.

  Dying within institutionalized settings also means that one often must live with a conspiracy of silence, producing an information game where the dying and others attempt to second guess each other about what the prognosis is and who knows it. There is the silence of family and friends, who either conspire to conceal the patient's condition in order to spare his or her feelings or avoid the person totally because they know not what to say. Physicians, too, play the game, believing that the terminally ill do not want to know about the severity of their situation and that such information would destroy all hope and thereby accelerate death (though "hanging crepe" to cover themselves professionally with the family). Although often knowing their end is near, even the dying take part in the deception, playing along as if the efforts of others to ease matters for them are effective and appreciated.

• Fears of Dying Replacing Fears of Death. With medicine in control of the final rite of passage, basic cultural fears have alternated from concerns over post-mortem judgment to the dying process itself. As detailed elsewhere, this has spawned the right-to-die and death-with-dignity movements and their associated push for the legal recognition of living wills (a downloadable version is available from the Voluntary Euthanasia Society of Scotland and The Living Will and Values History Project in Adobe Acrobat format) and, in the extreme, physician-assisted suicide and euthanasia (see Intellectual Capital.Com's issue of January 16, 1997: The Supreme Court Tackles the Right to Die).
  
  
• The Medicalization of Old Age. Life expectancy increases beyond the Biblical allotment of three score and ten years would seem to provide the occasion for social celebration. Instead, old age is culturally viewed as a "social problem." Consider medicine's role in the lives of those most likely to die in our culture. This group, self-defined in the journal (Modern Maturity) of its largest organization (the American Association of Retired Persons) as "pioneers in time," now trailblazes the very limits of the human life-cycle in recreational vehicles, retirement communities, sheltered-care facilities, hospitals and nursing homes. And, at least in the United States, it is the physician who has become their trail guide through time. 
  
  The medical establishment has produced a population requiring ever greater services with advanced age--including the million or more nursing home residents so disabled that twenty-four hour care is required, and the ten thousand individuals existing in irreversible vegetative states. Old age has increasingly become equated with the dying process. Our cultural gerontophobia derives from our cultural thanatophobia; the myriad of anti-aging products and services are in our youth-oriented culture, in actuality, potions and rituals to avoid death.



• Fueling the Culture's Immortalist Quest. So extensive is the faith Americans have in the ability of medicine to conquer most forms of untimely death--reinforced by the highly publicized breakthroughs in the battles against polio and small pox, and stories of the feats of the Christian Baarnards and Robert Salks--that they believe that medical science will provide a cure for anything that ails us, including old age and death. In the October 1992 Life magazine appeared one researcher's claim that some individuals currently alive "may still be alive 400 years from now." In a 1992 Time/CNN "Beyond the Year 2000" poll, 75 percent of Americans expected a cure for AIDS and 80 percent a cure for cancer. Check out Immortality Inc., which brings you the latest in anti-aging (hence anti-death) research. (It is worth noting how the institution provides at least symbolic immortality for its own: see whonamedit.com, "the world's most comprehensive dictionary of medical eponyms").

  Because most premature death is nowadays manmade, there is a shared sense that such deaths are avoidable and therefore controllable. Judging from the spate of laws requiring warning labels on 5-gallon buckets (so children will not fall in them and drown), step-ladders (30 percent of the price of which goes to cover potential liabilities; metal extension ladders now carry 37 warnings and instructions), and even balloons, ours is becoming risk-free culture. Instead of generating moral doubt, premature death is now perceived to be something avoidable, being caused either by failure to heed warnings, inadequate lifestyle--such as from smoking, poor exercise habits, being poor, or, in the case of AIDS, due to one's sexual preferences--or by the "underconsumption of clinical care." In other words, the individual is generally to be blamed.

  Americans' faith that medical science will provide a cure for anything that ails them, including old age and death, has led to the increasing politicization of death. Hard-won medical victories have led not only to rising expectations, but to further problems. Consider the rising expectations and social class resentments of those unable to afford artificial or transplanted hearts. Or a public led to believe that through their financial contributions a cure will be found, only to find years later that little progress has been made. Such disappointments have far-reaching economic and political implications.

Full copy of Last Acts's 2002 report "Means to a Better End: A Report on Dying in America Today"

Approaching Death: Committee on Care at End of Life, Marilyn Field and Christine Cassel, eds. Washington, D.C.: National Academic Press.

End of Life Physician Education Resource Center

10 Legal Myths About Advance Medical Directives from the American Bar Association

"When Death is Sought: Assisted Suicide and Euthanasia in the Medical Context from the Task Force on Life and the Law, New York State Department of Health

Bioethics.net from U Penn, "where the world finds bioethics"

Johanna H. Groenewoud, et al., "A Nationwide Study of Decisions to Forego Life-Prolonging Treatment in Dutch Medical Practice" Archives of Internal Medicine (Feb. 14, 2000)

Oncolink's End of Life Issues from U Penn

Robert Wood Johnson Foundation's "Last Acts" site, "a national coalition to improve care and caring at the end of life."  Movement's electronic newsletter here.

Innovations in End-of-Life Care (project of the Last Acts Task Force on Institutional Innovation)

Regional variances in the average number of days spent in hospitals during the last 6 months of life, from The Dartmouth Atlas of Health Care in the U.S. 1998

"The Virtual Autopsy" from Leicester University

Pathologist Ed Friedlander's "Autopsy" page

Autopsy--Through the Eye's of Death's Detectives from Michael Kriegsman's film

Dr. Frank Boehm's Essays

The Living Will and Values History Project (London)

Sept. 1996 FDA "Protection of Human Subject" ruling permitting treating comatose patients in emergency rooms with experimental protocols without informed consent

American Dietetic Association Position Paper: Legal and Ethical Issues in Feeding Permanently Unconscious Patients

• Abortion
• Euthanasia
• Cloning
• Animal rights and their use in scientific testing

Soros Foundation's "Project on Death in America"

Summary of and links to the National Coalition on Health Care & the Institute for Healthcare Improvement's October 2000 report Promises to Keep: Changing the Way We Provide Care at the End of Life

Christine K. Cassel and Kathleen M. Foley, "Principles for Care of Patients at the End of Life: An Emerging Consensus among the Specialties of Medicine" (Milbank Memorial Fund's Dec. 1999 report)

Partnership for Caring: America's Voices for the Dying  "a national nonprofit organization that partners individuals and organizations in a powerful collaboration to improve how people die in our society"

Center to Improve Care of the Dying (George Washington U.)

The Aid in Dying Communication Project--"Helping to improve communication between health professionals and patients near the end of their lives"

Dr. Marie Lousie Grennert's "Ways to Improve Care of the Dying in Hospital"

Progress in Palliative Care journal

The Palliative Page-- an inventory of online resources

HOSPICE

In medieval times, hospices where places that provided shelter and care for pilgrims, crusaders, and children traveling to the Holy Land. Now hospice has become a concept of care for the terminally ill. As defined by the National Hospice Organization (NHO, 1982:8), hospice

is a centrally administered program of palliative and supportive services which provides physical, psychological, social and spiritual care for dying persons and their families. Services are provided by a medically supervised interdisciplinary team of professionals and volunteers. Hospice services are available in both the home and in-patient settings. Home care is provided on a part-time, intermittent, regularly scheduled, and around-the-clock, on-call basis. Bereavement services are available to the family. Admission to a Hospice program of care is on the basis of patient and family need.

Hospice, then, can be viewed as an alternative to technological death, a reaction against the physicians' total control of the final rite-of-passage.  Hospice, with its orientation toward pain control, has also been viewed as an alternative to euthanasia and physician-assisted suicide--or so I thought until I came across Hospice for Hemlock, one of whose members observed that of the 27 Oregonians who took advantage of the state's physician-assisted suicide law in its second year, 21 were in hospice care at the time of their decision to accelerate the end.  In 2000, only 17% of dying Americans died hospice deaths.  Six years later, according to the National Hospice and Palliative Care Organization, this percentage had more than doubled with approximately 35% of deaths in the U.S. being under hospice care.

According to the findings of a Time/CNN survey conducted in 2000 (reported in Time Sept. 18, 2000: John Cloud's "A Kinder, Gentler Death"), "three-quarters of Americans die in some sort of medical institution, and a third of these have spent at least 10 days in an intensive-care unit. But 73 percent of Americans said they would prefer to die at home if they had a choice, while only 13 percent would choose to die in a hospital. The number of people choosing to die at home rose to 80 percent when they were told they were dying and had six months to live. Under those circumstances, 8 in 10 Americans said they would prefer to spend their last days at home while receiving professional care and medication, rather than being in a hospital and receiving traditional care. Although they are promoted as humane and comfortable places to spend the last days of life, hospices care for only 17 percent of dying Americans.''  By the end of 2002, hospice care was offered in less than one-quarter of hospitals.  Rough three in ten terminally ill Americans receive hospice care.

• National Hospice Organization (NHO), with data base
• The American Hospice Foundation
• From American Radio Works, John Biewen's "The Hospice Experiment", includes interviews with Kübler-Ross and Cicely Saunders
• Hospice Foundation of America
• Dale Larson's "The Hospice Home Page"
• HOSPICE HANDS: Index to Hospices
• Hospice Web
• The Hospice Page
• Hospice Education Institute
• Issue of Cancer Control Journal on hospice and palliative care
• Zen Hospice Project Home Page
• Bereavement and Hospice Support Netline
• Hospice For Choices--(originally Hospice For Hemlock) an attempt to fuse hospice with assisted suicide

MEDICAL ETHICS 101: ORGAN TRANSPLANT QUEUES

By what guidelines are organs to be allocated and who decides? Should priorities be based on who has waited the longest, whose condition is most severe, or the absence of patient complicity in their plight (e.g., transplanted livers for alcoholics or lungs for heavy smokers)? Should they be based on who can pay the most, who is the most likely to survive, or who is most likely to make the greatest social contribution? Or should there be organ lotteries?

In April of 1997, CBS's "60 Minutes" carried an investigative report about how the defense of an assailant who had shot a young woman in the head was that she had actually been murdered by physicians when they extracted her organs for transplant. Though brain-dead, her heartbeat and breathing had been maintained on a ventilator to ensure her viability as an organ donor.

Organ Procurement and Transplantation Network's Organ Allocation Policies

New England Journal of Medicine editorial "Allocating Livers--Devising a Fair System"

National Transplant Assistance Fund

LifeNet "to improve the quality of human life through the provision of organs & tissues for transplantation and to serve the community by providing educational and support services which enhance the donation process"

"Top 10 Myths About Donation and Transplantation" from TransWeb.org

Transplant for Life an interfaith group's guidelines on the positions individual faiths take on the matter.

So where do Americans stand regarding how organs are to be allocated. In the 1996 NORC General Social Survey, over 1,500 individuals were presented with the following question:

Recently, medical science has made it possible to save lives by transplanting body parts from donors to patients who need them. But for some body organs there are not enough to go around, and some patients die before they can obtain a transplant. When only one organ is available and several patients need it for survival, the organ could be assigned to a patient by one of the following procedures: By auction: The organ is assigned to the patient who can pay the most for it; By first come, first served: the organ is assigned to the patient who has been waiting the longest.; By lottery: The organ is assigned to the patient whose name is drawn at random; By merit: The organ is assigned to the patient who can make the greatest contribution to others and society... Which of these procedures should be used to assign the organ among the patients who need it for survival: auction, first come/first served, lottery, or merit? (variable ORGANSB)

When asked "Which of these procedures would be the worst way to assign an organ [When an organ is needed for an operation]?" (variable ORGANSW), nearly eight in ten mentioned auctions. Interestingly, Americans were half again more likely to disapprove of allocations based on merit (12.2%) than on lottery (7.9%).

Let us not forget the status of the donors and their postmortem bonds with loved ones. Thomas Lynch, in his remarks to the 2006 President's Council on Bioethics, observed the mother of a leukemia victim slapping an Episcopalian minister after his telling her that her daughter's body is "just a shell." Lynch notes "The bodies of the newly dead are not debris or remnant, nor entirely icon or essence. They are rather changelings, incubates, hatchlings of a new reality that bear our names and dates, our images and likenesses, as surely in the in the eyes and ears of our children and grandchildren as did words of our birth in the ears of our parents and their parents. It is wise to treat such new things tenderly, carefully, and with honor."

Over the past few years have appeared several new twists to the body parts industry:

• In 1990, in attempting to reduce the county's burial expenses, Milwaukee County Board Supervisor T. Anthony Zielinski proposed selling the organs of welfare recipients who had granted permission to do so, saying "If they can't help society while they're alive, maybe they can help it while they're dead." The firestorm of outrage reportedly threatened other plans for addressing the organ shortage problem. 
  
  
• In the same year, the heart, liver, corneas, and some of the bones and skin, of gunshot victim Susan Renea Sutton were removed and transplanted. Thousands of dollars were received by the hospitals and medical teams that removed and transplanted the organs as well as by the nonprofit agency that coordinated the procedures. The parents of the donor received not a penny, and being too poor to afford a headstone for their daughter had her buried in an unmarked grave. What compensation is due to families of organ donors? 
  
  
• In 1991, stories began appearing in the Western press of poor Africans and Indians selling their organs to wealthy Arabs for transplant in Egypt. Because, in part, of religious beliefs, it is easier to harvest organs from the living as opposed to the dead. Officials of the World Health Organization said such sales were reaching alarming proportions in developing nations. The following year, Egyptian doctors banned all kidney transplants from living donors that are not done between relatives. But the organ trafficking continues, in a shady international market where organ brokers connect poor Third World donors to First World recipients.

In light of these stories, let us consider Americans' responses to the following question, which was again asked in the 1996 NORC General Social Survey:

A body organ that is much in need and that people may contribute are kidneys. Most people can live with only one kidney, though their chances of 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? (variable SELLORGN)

• There is no statistically significant differences in the responses of men and women, nor of blacks and whites.
• Education has little bearing on responses, with percentages of those opposing ranging from 51% of high school dropouts to 42% of those with some post-secondary schooling. Forty-six percent of those with four or more years of college were against allowing people to sell their kidneys for transplant.
• Opposition generally increases with age, from 31% of those 18 to 29 years of age to 56% of those in their fifties and sixties. Among those eighty and older, opposition declines somewhat to 43%.
• Religious faith did not produce the differences that one might expect. Opposition was greatest among moderate Protestants (53%), followed by fundamentalist (48%) and liberal Protestants (46%), Catholics (45%), those having no religious affiliation (41%), and Jews (33%). Among those claiming to be strongly religious, disapproval was greatest among Catholics (55%) and lowest among moderate and liberal Protestants (both 44%).
• Political conservatives (50%) and moderates (47%) were significantly more likely to express reservations than liberals (38%).
• And what of social class identification? Those claiming to be of the lower or middle classes were most likely to disapprove (49%) while those of the upper class were least likely (29%).