X-Message-Number: 2935
Date: 22 Jul 94 22:58:36 EDT
From: Mike Darwin <>
Subject: SCI.CRYONICS BPI TECH BRIEF #11
BPI TECH BRIEF #11
Chapter 2 of STANDBY: CARE OF THE END-STAGE CRYOPRESERVATION
PATIENT by Michael G. Darwin with Charles Platt
Copyright 1994 by Michael G. Darwin. All rights reserved.
Perspectives on Death and Dying Today
"The obituary pages tell us the news that we are dying away,
while the birth announcements in finer print, off at the
side of the page, inform us of our replacements, but we get
no grasp from this of the enormity of the scale. There are
three billion of us on the earth, and all three billion must
be dead, on a schedule, within this lifetime. This vast
mortality, involving something over 50 million of us each
year, takes place in relative secrecy. We can only really
know of the deaths in our households, or among our friends.
These, detached in our minds from all the rest, we take to
be unnatural events, anomalies, outrages. We speak of our
own dead in low voices; struck down we say, as though
visible death can only occur for cause, by disease or
violence, avoidably. We send off for flowers, grieve, make
ceremonies, scatter bones, unaware of the rest of the three
billion on the same schedule. All of that immense mass of
flesh and bone and consciousness will disappear by
absorbtion into the earth, without recognition by the
transient survivors. "
--Lewis Thomas
In my experience caring for cryopreservation patients who
are approaching legal death, the most challenging problems
tend to be psychological rather than medical in origin. Not
only the patient, but family, friends, and medical personnel
may respond to the situation with denial, anger, hysteria,
or other "negative" emotions that can derail carefully laid
plans and interfere with the close cooperation that is
essential if standby and transport of the patient are to be
carried out under optimum conditions.
To understand why this happens and how it can be dealt with,
we must review historical and contemporary attitudes toward
death and dying, along with the various coping strategies
patients may tend to follow when confronted with their own
terminal illness.
Historical Perspective
Since roughly the beginning of the twentieth century,
attitudes and practices regarding death and dying in the
Western world have undergoned rapid change (1). Prior to
1900, most people died at home and all members of the family
tended to be involved. Relatives watched the dying process,
washed the body and dressed it for burial, and might even
build the coffin. There was no embalming or cosmetic
enhancement to "soften the blow" of death. The sights,
sounds and smells of terminal illness were inescapably
familiar to everyone from the youngest child to oldest
adult.
Since 1900, the average life expectancy at birth has climbed
steadily in the United States from 47 to 76 years (2). A
century ago, more than half of all deaths involved people
under 15 (3). By comparison, today less than five percent of
deaths occur in this age group (4). We now tend to think of
death primarily afflicting old people, and young people no
longer find themselves forced to come to terms with the
death of their contemporaries. So long as death was an
everyday reality, people inevitably developed coping
mechanisms. By contrast, most of us in the Western World
today have had little or no experiences with death either as
children or as adults. The drop in infant mortality coupled
with the great increase in average life expectancy have
created the illusion that death is now the exception rather
than the rule.
Other factors have also served to insulate the average
Westerner from the reality of death. These factors can be
summarized as follows:
1. Physical separation. On average, twenty percent of
Americans move a significant distance each year (i.e., from
one community to another) (6). In the past, people spent
their entire lives within one locality or neighborhood--even
in large cities such as New York. Neighbors knew each other
and cared for each other. Today, family and friends are
frequently separated by long distances and see each other
seldom. As a result, people no longer observe each others'
lives from start to finish.
2. Psychological separaton. Rapid cultural change has opened
rifts between successive generations. Differences in type
and level of education, musical tastes, morals, manners, and
other behavioral "norms" have made it less common for
younger people to maintain active communication with older
people. Consequently, young people seldom learn attitudes
and coping strageies from previous generations.
3. Changing causes of death. Prior to 1900, roughly forty
percent of all deaths were caused by infectious diseases
such as pneumonia, typhoid, syphillis, diptheria, whooping
cough, and streptococcal septicemia (the latter often
resulting from the slightest nick or cut). Today, as a
result of improved public health and antibiotics, infectious
diseases are far less often a cause of death. People now die
mostly from age-related degenerative diseases and loss of
organ function associated with the aging process. (See Table
2-1 and Figure 2-2). As a result, most of us now think of
death as something that happens to old people. Since the
average age of members of cryonics organizations is about
forty,(8) cryonicists tend to think of death as being half a
lifetime in the future: a reasonably comfortable distance.
4. Lifesaving medical technology. In the past, death came
typically at the end of an illness that progressed along a
relatively predictable path. Today, serious illnesses tend
to consist of successive crises, each of which is averted by
medical technology. In AIDS patients, for instance, the
initial illness is usually treated successfully, but is then
followed by a series of illnesses and hospitalizations. This
pattern is also seen among patients suffering chronic heart
conditions, or cancer. As a result, it can be hard for
anyone to know whether a particular crisis is "the last
one," and people (including the patient) tend to focus on
coping with the crisis rather than preparing for the
prospect of death. Death often comes as a surprise,
especially if several previous crises have been successfully
averted.
5. Removal of death and dying from the home. Almost all
Western children now receive at least twelve years of
schooling, and it has become common for both parents to be
employed. Retired people are less dependent than they used
to be, and are more likely to live separately from the rest
of the family. As a result, the home is no longer the focus
of communal attention that it once was, and younger
relatives are less willing or able to care for the older
generation--especially bearing in mind the increasingly
complex nature of modern medicine. Care for patients who are
seriously ill is now regarded as a highly specialized
procedure which is almost always carried out in a hospital.
6. Professional management of death. The procedures
following legal death are likewise now seen as a specialized
business for professionals. Eighty percent of all deaths in
the United States now occur in an institutional setting,
while a century ago, seventy-five to eighty percent of all
deaths occurred at home. Elderly people commonly die after
months or years in a noncommunicative or vegetative state in
a nursing home. Upon legal death, the body is collected by a
mortician, and relatives will be notified by telephone. If
they subsequently view the body, the effects of illness and
death will have been camoflauged by cosmetic work. Direct
cremation wherein the body is never seen by the family (an
increasingly popular option) may be followed by scattering
the ashes at sea along with those of hundreds of others, in
effect almost completely disconnecting the survivors from
the dying process.
Bearing all these factors in mind, it's no surprise that
today, people do not so much die as disappear. All of the
sights, sounds, smells and experiences associated with the
dying process are now absent from view and removed from
common experience.
Special Problems of the Cryonicist
It should now be clear that when people today are forced to
deal with the process of death on an intimate basis, they
are unlikely to know how to cope. They will have little
experience to guide them in knowing how to feel, what to
say, or what to do. And this is all the more true when a
person is confronted with his or her own death. This lack of
competence or composure creates difficulties when a patient
is dying conventionally. It can create a disaster if the
patient is hoping to be cryopreserved. An irrational,
emotional patient is not going to make thorough preparations
for cryopreservation or wise decisions about appropriate
treatment. Similarly, a transport team that is shaken and
disturbed by the dying process will be liable to make errors
that can diminish the chances of a good cryopreservation.
Baby-boomer cryonicists are likely to be even less well-
prepared than most when it comes to dealing with death--
either their own, or other people's. In addition to the
factors already itemized above, cryonicists face special
problems unique to their psychology:
1. Denial. Denial of death is common enough, (9) and Anyone
who has cared for terminally ill people will be very
familiar with the pattern of unrealistic notions or complete
denial. A person in the final weeks of a clearly terminal
illness may make remarks such as "Well, I suppose I only
have another year or two left...." A terminal patient may
also start making plans for going back to college,
remodeling the home, or starting a new business, when it's
abundantly clear to everyone that none of these activities
is remotely plausible.
Cryonicists are especially prone to this type of behavior,
and to a type of denial which is related to belief in
cryonics itself: techno-faith. Cryonicists tend to be
extremely interested in alternative or non-mainstream
medicine, and they often take non-FDA-approved drugs or
nutrients to extend lifespan (10). Cryonics itself is just
another tool in this arsenal of techniques to "cure" death.
One consequence is that terminally ill cryonicists often
become obsessed with real-time medical fixes for their
problems, to the exclusion of cryonics itself. In my
experience, this is particularly true among young patients
(11). Patients should certainly feel free to explore
alternative or experimental treatments, but if the
treatments aren't working, the patient must be rational
enough to acknowledge this and accept that cryopreservation
is imminent. Otherwise, there will not be sufficient time to
make the very necessary preparations. At very least,
planning should proceed in parallel with medical treatment,
so that cryopreservation is available as a contingency plan
when all else fails.
Unfortunately, cryonicists, like most people, do not deal
well with intense, conflicting demands for their attention.
Faced with the added drain on on an individual's resources
caused by a terminal illness, parallel planning becomes
highly problematic. The patient becomes obsessed with the
practical business of staying alive now, rather than the
theoretical promise of future life through cryonics. Worse
still, the patient can suddenly start seeing cryonics as a
symbol of medical failure and death, instead of a source of
reassurance.
It is a thankless job to be in the position of trying to
counsel a terminally ill cryonicist on preparations that
need to be made for cryopreservation. It is even more
difficult to advise the patient that the time is fast
approaching when cryonics is the only hope. Even healthy
people tend to feel reluctant to confront their mortality
and plan for it. When they are terminally ill and trying
very hard to avoid the panic and grief that will come from
contemplating their own imminent death, they will be even
less likely to want to face the facts. This presents
significant problems when patients must make crucial
decisions about medical strategies that will be followed
before and after legal death.
2. Alienation and lack of social support. Two thirds of
cryonicists are males, and many of them are unmarried. The
typical cryonicist is often involved in other "fringe"
activities such as libertarian politics or atheism, and may
have a career such as computer programming, which requires
minimal social interaction (12). Overall, a cryonicist is
likely to be alienated from both family and community. The
church and related service organizations which often provide
valuable support to the terminally ill are not likely to be
sources of comfort or help to the typical cryonicist. While
ties within the cryonics community may partially replace the
intimate presence of family, they are not likely to be as
numerous or as strong. This is partly because cryonicists
are scattered geographically, and also because bonds among
cryonicists are by nature less profound than those among
members of a family or a congregation.
Worse still, even if family members do remain close to the
cryonicist, they are statisticaly unlikely to share a belief
in cryonics. This results in a lack of gut-level emotional
support and may also interfere with the procedures of
cryopreservation. Noncryonicists family members are very
unlikely to encourage their terminally ill loved one to plan
for his cryopreservation. In fact, they may actually resent
cryonics and try to avoid the practical and logistical
ramifications of it. In some cases, they may become actively
obstructive.
The typical cryonicist thus may have little support from
family and friends, and may even have to deal with their
active hostility(13).
3. Conflicting technological demands. When a cryonicist
insists on receiving experimental or unorthodox medical
treatment, this can actively conflict with the requirements
of cryopreservation. For instance, participation in an
experimental treatment program may require the patient to
give consent for an autopsy. It may entail travel to far-
flung locations such as Mexico, Japan, or Russia, where
cryopreservation will be problematic or impossible. More
than one person has died while pursuing such a course and
has failed to receive cryopreservation as a result. (14)
Experimental treatments may also require the patient and
family members to travel long distances, pay out large sums
of money, and disrupt their work schedules, so that they
have no resources left to deal with the needs of
cryopreservation.
4. Crippling fear of death. A crippling or paralyzing fear
of death is by no means confined to cryonicists. I have seen
this kind of deep fear, however, in several long-time
cryonicists, coupled with intense denial, during the
terminal phase. This fear can make it virtually impossible
to discuss options related to cryonics or make appropriate
plans. In at least three cases, I have observed cryonicists
become almost unable to tolerate visits from cryonics
organization personnel--even though these personnel were
long-standing friends and associates.
Some people are so afraid of doctors, they may put off
getting treatment for a serious condition until after it's
too late. Similarly, cryonicists may put off taking actions
which could make the difference between being cryopreserved
and dying conventionally. For example, a patient who is
terminally ill may delay notifying the cryonics organization
until after she or he is actually in the hospital suffering
a very advanced state of the disease. It is also relatively
common for cryonicists to undergo major surgery without
notifying the cryonics organization at all.
Overcoming These Problems
There is no easy or certain way to give people the
understanding and acceptance of death which they have failed
to acquire as a result of changes in our society. But even
if earlier attitudes toward death were still prevalent, they
would be of limited help, since they entailed a view of
death as being final and destruction of the body as
inevitable. Cryonics requires a different kind of social
attitude which we can only begin to imagine since it does
not yet exist in a mature form.
As of this writing, fewer than 100 people have ever been
cryopreserved. Many of these cryopreservations were carried
out by next-of-kin or were done with little pre-planning. In
some cases, the procedure was performed without the advance
consent of the patient. Only very recently have we seen
groups that are large enough to create a close-knit
community sharing a concensus of social values. It is
recent, too, that long-term cryonicists have started
experiencing mortality and being cryopreserved.
Consequently, any statements about the "optimum" attitude
toward death must be derived from a relatively small number
of practical experiences coupled with theoretical
speculation.
Defining and Achieving the Optimum Scenario
Bearing all this in mind, what would be the optimum psycho-
social scenario for an individual confronting
cryopreservation, and how may this scenario be achieved? The
following paragraphs will provide a brief summary which
subsequent chapters will explore in more detail.
1. Promote a rational attitude toward the dying process. The
patient confronting cryopreservation should be in control of
his or her emotions and able to make rational decisions that
are not overshadowed by denial and fear. Experimental or
unorthodox treatments should be pursued carefully with
thought given to the possible benefit versus the potential
disruption of cryopreservation arrangements.
This kind of attitude is unlikely unless orientation has
been provided long before the patient ever develops a
serious illness. A cryonics organization can help, here, by
publishing patient case histories, organizine educational
seminars and meetings, and presenting thoughtful articles in
its newsletters.
2. Promote familiarity with the dying process. If possible,
the patient should have been actively involved in someone
else's legal death, from start to finish. Again, a cryonics
organization can help, here. When one of its members is
dying, the organization should encourage other members to
provide technical or social support. Similarly, a cryonics
organization should encourage members to volunteer for AIDS
or hospice organizations where they will inevitably come
into personal contact with people who are dying. This will
benefit not only the patient who receives help, but the
cryonicist who offers it. Confronting the death of others
and helping them to cope with it is a maturing and a life-
enhancing experience. Appreciating the magnitude of the loss
often serves to enhance appreciation for the value of one's
own life. In such a situation we can open up and share parts
of ourselves that we rarely examine. We may also find
resources of courage and compassion that we never knew
existed.
3. Promote an understanding of cryonics among the patient's
family. Family members should understand what is going to
happen, when it is going to happen, and why. Ideally they
should be supportive of it, or at least noninterfering. For
this to be possible, the patient and the cryonics personnel
must be responsive to the needs of the family. The patient
should not be condescending or patronizing when dealing with
family beliefs about death, and should try to avoid
proselytizing. The objective here is to keep family members
involved without pressuring them or forcing them to take
actions which may make them feel uncomfortable. Above all,
the patient should not require family to accept or believe
in cryopreservation.
4. Promote understanding and cooperation in medical
personnel. Like the family members, they should know clearly
and in detail what is going to happen, why, and when. In
addition, their duties and limitations must be clearly
defined. This is best achieved when personnel have had long-
standing advance knowledge of the patient's wishes, either
directly (as in the case of a personal physician) or
indirectly (through documentation of informed consent). The
patient should emphasize that cryopreservation is not just a
preference, but a source of comfort and reassurance in
addition to the comfort that is derived from orthodox
medical treatment. Cryonics should be seen as complementing
medical treatment, not as supplanting it.
5. Develop support among local cryonics members. This
support should be offered as early as possible in the
illness, so that helpers are not perceived as "vultures" or
harbingers of death. This can be be achieved by being
genuinely useful in coping with day-to-day problems (such as
meals and transportation). When preparations for
cryopreservation become necessary, they should be presented
as being like a safety belt or putting a net up while
walking a tightrope. The primary emphasis should be on
staying alive and enjoying life until such a time as the
patient acknowledges the inevitability of cryopreservation
and begins to deal with it (if that time is ever reached).
Some Reflections
Human beings were not designed to operate on long time
scales. The average lifespan in classical Graeco-Roman times
was about thirty-five, (16) and while our hunter-gatherer
ancestors may have fared better, perhaps even living to an
average age of sixty, (17) the selection process of
evolution clearly did not favor those humans who were good
long-term planners. The process of planning for the long-
term is also made difficult simply by the distractions of
staying alive on a day-to-day basis: getting up, brushing
our teeth, getting to work on time, taking care of the kids,
and tackling a dozen different chores.
Moreover, even in individuals who do try to plan ahead,
there is a deeply-implanted social preconception that long-
term planning is less important after one's children become
adults, and barely necessary after one reaches retirement
age.
Despite this behavioral conditioning, there is plenty of
evidence that many people can, in fact, change their
attitude toward death and force themselves to plan
rationally for it. Other cultures have developed strategies
for confronting death that are at least as psychologically
and socially demanding as cryonics (18, 19, 20). Such
changes can only occur when the individual accepts the need
for them, pursues a regimen of education and socialization,
and expends enough effort and money to make them happen.
One of the primary goals of a cryonics care provider (and of
this book) is to assist in this process.
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