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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