Table of Contents and Disclaimer

STANDBY:

END-STAGE CARE OF THE HUMAN CRYOPRESERVATION PATIENT

by Michael G. Darwin with Charles Platt
Copyright 1994 by Michael G. Darwin. All rights reserved.

Chapter 2: 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 absorption 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 undergone 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 separation. 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 strategies 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, syphilis, diphtheria, 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 camouflaged 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 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 statistically 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. Noncryonicist 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 consensus 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, organizing 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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