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:
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.
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.
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
Center
to Improve Care of the Dying (George Washington
U.)
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.
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?
|
|
|
||||||||
|
1990 | 1992 | 1994 | 1996 | 1998 | 2000 | 2002 | 2003 | ||
Kidney | Cadaveric |
7062
|
7322
|
7203
|
7638
|
7729
|
8024
|
8124
|
8538
|
7962
|
Living |
1812
|
2094
|
2535
|
3007
|
3660 |
4407
|
5441
|
6236
|
5895
|
|
Total |
8874
|
9416
|
9738
|
10645
|
11389
|
12431
|
13565
|
14774
|
13857
|
|
Liver | Cadaveric |
1713
|
2676
|
3030
|
3591
|
4018
|
4424
|
4592
|
4969
|
4925
|
Living |
0
|
14
|
33
|
60
|
62
|
92
|
394
|
360
|
290 | |
Total |
1713
|
2690
|
3063
|
3651
|
4080
|
4516
|
4986
|
5329
|
5215
|
|
Pancreas | Cadaveric | 74 |
67
|
61
|
94
|
165
|
245
|
437
|
553
|
473
|
Living |
5
|
2
|
3
|
0 |
1
|
0
|
1
|
1
|
0
|
|
Total |
79
|
69
|
64
|
95
|
166
|
245
|
438
|
554
|
473
|
|
Heart | Cadaveric |
1669
|
2095
|
2170
|
2337
|
2342
|
2348
|
2199
|
2155
|
1897
|
Living |
7
|
12
|
1
|
3
|
1
|
0
|
0
|
0
|
0
|
|
Total |
1676
|
2107
|
2171
|
2340
|
2343
|
2348
|
2199
|
2155
|
1897
|
|
Lung | Cadaveric |
33
|
202 |
535
|
708
|
791
|
840
|
941
|
1029 |
989
|
Living |
0
|
1
|
0
|
15
|
26
|
29
|
18
|
13
|
14
|
|
Total |
33
|
203
|
535
|
723
|
535
|
869
|
959
|
1042
|
1003
|
|
Heart-Lung | Cadaveric |
74
|
52
|
48
|
71
|
39
|
47
|
48
|
33
|
28
|
Living |
0
|
0
|
0
|
0
|
0
|
0
|
0
|
0
|
0
|
|
Total |
74
|
52
|
48
|
71
|
39
|
47
|
48
|
33
|
28
|
|
Total | Cadaveric |
10795
|
12878
|
13562
|
15208
|
15977
|
16966
|
17327
|
18288
|
17182
|
Living |
1824
|
2123
|
2572
|
3087
|
3762
|
4532
|
5863
|
6611
|
6205
|
|
Total |
12619
|
15001
|
16134
|
18295
|
19379
|
21498
|
23190
|
24899
|
23387
|
|
|||||||||
Organ | 1988 | 1989 | 1990 | 1991 | 1992 | 1993 | 1994 | 1995 | 1996 |
Kidney |
739
|
750
|
917
|
975
|
1052
|
1285
|
1361
|
1510
|
1814
|
Kidney-
Pancreas |
0
|
0
|
0
|
0
|
15
|
61
|
71
|
86
|
91
|
Pancreas |
6
|
23
|
21
|
37
|
33
|
3
|
13
|
4
|
5
|
Liver |
195
|
284
|
316
|
435
|
495
|
562
|
657
|
799
|
954
|
Heart |
494
|
518
|
612
|
779
|
780
|
763
|
724
|
769
|
746
|
Heart-
Lung |
61
|
77
|
68
|
45
|
44
|
51
|
48
|
28
|
48
|
Lung |
16
|
38
|
50
|
139
|
219
|
252
|
286
|
340
|
385
|
Intestine |
0
|
0
|
0
|
0
|
0
|
3
|
15
|
19
|
22
|
Overall |
1502
|
1666
|
1962
|
2360
|
2580
|
2902
|
3055
|
3421
|
3916
|
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.
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)Less than 4% of Americans did not have a position toward this question. More than eight out of ten preferred assigning organs to those patients having waited the longest, with only 8% favoring merit-based allocation and 6% favoring a lottery.
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 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)Their responses:
|
NUMBER | % OF TOTAL |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|