X-Message-Number: 2941
Date: 25 Jul 94 02:42:30 EDT
From: Mike Darwin <>
Subject: SCI.CRYONICS BPI Tech Brief #12

BPI TECH BRIEF #12

Chapter 3 of 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. 

Meeting the Needs of Patients and Family 

"Just think about a person who, during other sicknesses, was 
taken care of by his or her spouse, and was able to see his 
relatives and friends, and was given everything he needed. 
And then you see the same person during the plague being 
nursed by a stranger with no love for him, or perhaps never 
seen or known by him before, and he had to receive 
everything from this person without being consoled by any 
other. And many times all this nurse did was to make the 
patient die more quickly, because the sooner he died the 
sooner the nurse got 18 or 20 pounds or however much they 
had agreed on for the quarantine, and then the nurse would 
be free to go elsewhere. Many times those taking care of the 
sick did not give them the medicine that had been 
prescribed, nor the food and soups they were supposed to 
feed them, and even if the sick were supposed to eat the 
meaty part of the soup they were given only the watery part. 
Since there was no love or acquaintance between them the 
nurses did not bother to take good care of the sick; instead 
they looked after themselves. This was seen in many cases 
and many of the sick died from vexation and despair over 
these very things." 

                 --A Journal of the Plague Year: The Diary 

                   of the Barcelona Tanner Miquel Parets
                                      1651 

Ideally, standby/transport personnel should be accepted by 
family members as equal partners collaborating on the effort 
to help the patient. Realizing this ideal is not easy, but 
it is a worthy goal. Few experiences are more rewarding than 
contributing powerfully to the wellbeing of a dying person 
and feeling genuine love, gratitude, and acceptance in 
return. 

Unfortunately, some families are deeply hostile toward 
cryonics, and despite our best efforts, the transport team 
will be unable to change their outlook. Similarly, some 
patients--because of their personality, medical condition, 
family situation, or all three--will be unable to deal with 
cryopreservation personnel in a positive way, and will 
derive little or no psychological benefit from our presence. 
Transport personnel must understand and accept that 
sometimes they will be unable to do anything about this. 
In many other situations, however, it will be possible to 
help the patient psychologically, physically, and 
spiritually. I will now go into this in more detail. 


Classifying the Scenarios 

Broadly speaking, two kinds of patients opt for 
cryopreservation: the long-time member, and the emergent (by 
which I mean someone who has not had long-term prior contact 
with cryonics or has not been a member of a cryonics group). 
Each type of patient requires a very different approach. 


The Long-Time Member 

This type of patient offers the best opportunity for a 
favorable outcome, largely because we should have ample time 
to explain the important issues before legal death occurs. 
In fact, ideally, some of these issues should be dealt with 
as soon as a person joins a cryonics organization. The 
organization should provide literature and information to 
orient and educate members about the procedures used during 
standby, perfusion, and cryopreservation. The organization 
should also offer literature specifically intended for 
family members. 

Almost always, cryonicists should try to explain their 
cryopreservation arrangements to close relatives. If 
relatives remain uninformed, they are likely to feel 
shocked, disoriented, or deceived when they finally learn 
the truth, perhaps when the patient is in the middle of a 
terminal health crisis. 

This does not mean, however, that the organization should 
inform relatives about cryonics in a "proselytizing mode." 
The result of this is often backlash and resentment. The 
best strategy is to present information in a factual, 
sympathetic way, with the aid of printed and (ideally) video 
materials that answer the most common questions from those 
for whom cryonics is a strange concept. The information 
should be conveyed at high-school level, should not advocate 
cryonics, and (when in printed form) should be modularized 
into short pamphlets (maximum of right pages) dealing with 
specific issues.
 
The following topics should be covered in a question-and-
answer format that will enable the family to find and focus 
on issues that are important to them: 

1. Informed consent. What has the member been told by the 
cryonics organization, and what promises have been made 
concerning revival and rehabilitation in the future? 

2. Financial liability of the next of kin. Family members 
should be reassured that the procedure has been paid for and 
no one will be asked for money or harassed for support in 
the future. Include an explanation of contingency plans that 
will be implemented if the money which has been allocated by 
the patient for long-term care turns out to be insufficient 
in the future.
 
3. Premedication. Explain why medications administered 
before legal death will optimize the patient's subsequent 
cryopreservation. Describe the range of options available, 
from relatively benign over-the-counter nutrients through 
prescription drugs and (possibly) unapproved drugs that are 
obtained from outside the United States. Include an 
objective summary of the possible risks and benefits--not 
only medical factors but hazards such as risk of autopsy or 
criminal prosecution. 

4. Standby procedures. What standby is and how it is 
actually implemented. Here it is very important to explain 
everything step by step and illustrate with photographs 
(tastefully, if possible) exactly what will happen to the 
patient and when. If standby will occur at home, describe in 
detail the size, function, and appearance of equipment which 
will be used. 

5. Personnel involved in standby. List the names and 
qualifications of the team members, together with a brief 
biography of each one (if possible). 

6. Additional services of standby personnel. If standby 
personnel are willing and qualified to help with simple 
nursing care such as turning or feeding the patient, 
remember to point this out. Also make sure to mention that 
standby staff will be able to help with light housekeeping 
and errands, so long as these chores do not interfere with 
the patient's cryopreservation. 

7. Medicolegal limits on standby staff. It is just as 
important to describe what the standby staff can't do as it 
is to list the tasks that they can do. They cannot under any 
circumstances administer any medication or intravenous 
product, including total parenteral nutrition (TPN), even if 
they are licensed or qualified to do so under normal 
circumstances. They absolutely cannot pronounce death, even 
if legally empowered to do so, because of conflicts of 
interest which could cause severe legal problems. It's very 
important to explain this. 

8. What is expected from the family and friends. Will they 
be asked to get ice, or help to move the patient? What 
things should they avoid doing? Can they help to support the 
patient by talking with him or her about anxieties, or by 
dealing with practical problems that may impede the 
cryopreservation, such as reassuring medical staff? Can they 
help the patient to deal realistically with the prognosis 
and the preparations that it entails, such as estate 
planning? 

9. Where and how the patient will be cared for after 
cryopreservation. How storage will be carried out, if 
viewing will be possible prior to encapsulation of the 
patient, and if family be able to visit the cryonics storage 
facility in months and years to come. The cryonics 
organization should have a policy re leaving flowers, 
pictures, or mementos, and should explain this policy to the 
family. 

10. Religious questions. The family and patient should be 
assured that there is no conflict between religious beliefs 
and cryopreservation, and clergy may be present in the home 
or institution where the patient is being cared for. 
Patients who have a religious faith should be encouraged to 
use the spiritual resources that they would normally use in 
cases of terminal illness, such as services for the 
seriously ill, special blessings, or communion.
 
11. Memorial or religious services (and disposition of non-
cryopreserved remains in the case of neuropatients). How 
will cryopreservation conflict with traditional memorial or 
funeral services? Can there be an open-casket funeral in the 
case of neuropatients? How should clergy be handled, and is 
there any standard information available for clergy? Is 
there assistance available to help the family communicate 
what has happened (both the death of a loved one and the 
choice of cryopreservation) to friends? If a death notice 
will appear in a newspaper, how should it be worded? In the 
case of a neuropatient, who will carry out cremation of the 
body, and can the family be present to insure that there is 
no co-mingling of remains? Does the family have to buy an 
urn or arrange for scattering or interment? When will the 
ashes or other remains be available to the family? This 
latter question is especially important to members of some 
ethnic groups and religions. 

12) How does the cryonics organization handle access to the 
patient's records both medical and cryopreservation?  Are 
copies available to the next-of-kin and if so are there any 
restrictions on their distribution and use?  Will the next-
of-kin be allowed to examine critical records or determine 
by inspection how the patient is being cared for?

Dealing with this material in a video format will enable a 
more "user friendly" approach, especially since real or 
dramatized cases can make procedures seem less threatening 
on the screen. Always, the presentation should be strictly 
factual and should never attempt to "sell" cryonics. 

If literature for the family is available, members of the 
cryonics organization should be taught how to use it. This 
can be done via articles in a newsletter or instruction in 
local meetings and one-on-one conversations. During the 
sign-up process, each prospective member should be told 
about the information resources (literature, video, or both) 
and advised how and when to use them. So long as a member is 
in good health, the family should only be given a broad 
overview of cryonics. A rigorously detailed explanation of 
the topics itemized above is neither necessary or desirable 
unless a member is terminally ill. One reason for this is 
that procedures may change over time.


The Emergent Patient 

In managing the Emergent Patient, how the first contact is 
handled is vital. The patient and family members are likely 
to be suspicious and hypercritical when dealing with 
"fringe" or unconventional treatment such as 
cryopreservation. Three factors contribute to this attitude: 

a) The high cost of the procedure, which last-minute 
patients are unlikely to cover via life insurance. 

b) The total dependence of the patient upon the cryonics 
organization for survival. 

c) The impossibility of verifying whether the procedure has 
been a success. 

Our chances of receiving cooperation will increase if we 
deal with the patient and the family in a professional and 
forthright manner, warning them of possible snags and taking 
great care to obtain informed consent. 

Once again, there should be no effort to "sell" cryonics to 
the Emergent Patient or family members. On the contrary, we 
should point out the uncertainties and difficulties of 
opting for cryopreservation on a last-minute basis. Last-
minute cryopreservation may in fact turn out to be 
impractical, in which case everyone must be made aware of 
this as a early as possible, before hopes are raised and 
psychological and financial resources are mobilized. The 
critical prerequisites are as follows: 

1. Informed consent. The patient must be properly able to 
assess and consent to the option of cryopreservation, or (if 
the patient is incompetent or a minor) the *authorized* 
next-of-kin or medical surrogate must be freely able to give 
consent. 

2. Financial capability. Are there sufficient resources to 
pay for the treatment? Will this adversely affect 
dependents, heirs, and others? 

3. Logistics. Is it feasible to get access to the patient 
and carry out the treatment? For example, if the patient is 
in a foreign country or subject to autopsy, this will make 
cryopreservation problematic at best. 

4. Resources. Is support available for tasks such as 
assisting the patient with legal paperwork, changing 
insurance beneficiaries, obtaining funds, moving to a more 
cost-effective or legally favorable geographical location, 
and so on? 

Each cryonics organization should develop its own policies 
and guidelines for determining whether to accept a last-
minute case. The factors listed above are not intended to 
supplant such guidelines. You will find a more detailed set 
of guidelines for accepting or rejecting last-minute cases 
in Appendix One. 


Implementation of Standby 

Almost always, during a standby, the transport staff will be 
present at the location where the patient is dying. In my 
experience, the average length of a standby has been seven 
days. (1) Whether standby occurs in the home or in an 
institutional setting, transport staff, the family, and the 
patient will often be confined with each other in a limited 
space that allows minimal privacy. If the available space is 
small and the staff is large, this may become a specially 
pressing problem. 

Housing 

Wherever possible, we should house the staff off-premises 
and retain the minimum number of people (consistent with 
good care) with patient. There will be exceptions to this 
rule and situations where the patient and family actually 
prefer the entire team to be present. In most situations, 
however, this will not be the case, and steps must be taken 
to minimize potential stress all around. 

The staff members who are deployed should be the most 
capable and the most affable. Strident, morose, socially 
insensitive, garrulous, and otherwise "difficult" staff 
should be held in reserve outside the home or institution 
until absolutely needed. Where a personality conflict 
develops between staff and patient or family, every effort 
should be made to defuse it by talking it through. If 
unsuccessful, the problematic staff member should be 
withdrawn until (s)he is critically needed. 

Dealing With The Patient and Family 

There is no universal right or wrong approach to dealing 
with people. As a general rule, however, we should try to be 
sensitive to their beliefs, preferences, and needs. Some 
families and patients will joke and talk frankly about the 
experience they are going through. Others will be horrified 
at even a hint of humor. 

Some families will deal with their grief quietly and 
stoically, scarcely acknowledging the pain they feel. Some 
will want to talk about it. Some will indulge in wild 
displays of hysterics and moaning. I particularly remember 
one family where the mother, who was an ethnic Italian, 
suddenly and (to me) unexpectedly burst into near hysterical 
sobbing and threw herself on her son's body as he was being 
transferred from dry ice to liquid nitrogen storage. While I 
was totally unprepared for what happened and was shocked at 
the time, I later came to realize that this was her cultural 
heritage and that her style of grieving was appropriate and 
"expected" of her (the rest of the family was not 
surprised). 

It is vital to evaluate the family and determine the correct 
approach right from the start. Almost always, family and 
patient will give you verbal and nonverbal cues about what 
they expect. The standby will have a far greater chance of 
success if you are sensitive to these cues.
 
It is also very important to remember that this is a time of 
high stress for everyone involved, and the stress can 
encourage people to disclose their feelings and needs. If a 
family is strong and functional, the stress will reveal that 
integrity. If the family is weak and dysfunctional, the 
stress will bring out the worst in them. Moreover, negative 
behavior tends to create negative feelings which in turn 
generate more negative behavior, setting up a vicious cycle 
which is difficult to break. In such situations it is very 
important for standby personnel to stay out of the conflict. 
Above all, don't ever take sides. 

The high stress that always accompanies the death of a loved 
one will be compounded by the presence of strangers in the 
home, the presence of alien and perhaps frightening 
equipment (which serves as a constant reminder that death is 
close), and the anxiety that may be present if a family is 
losing a patriarch, matriarch, or breadwinner. If there has 
also been some guilt, regret, greed, jealousies, or sibling 
rivalries festering in the background, you have a recipe for 
decidedly uncivil behavior. Worse still, if the family views 
cryonics as a hated thing which has divided or alienated 
them from the patient (or the patient's money), you now have 
a recipe for WAR. 

The standby staff may cause resentment simply because their 
mere presence suggests that they have taken a controlling 
role, which can be intolerable to family members who have no 
interest in cryonics. Further, the whole cryopreservation 
process disrupts the normal routine and ritual which the 
family would otherwise use to deal with their stress and 
grief. They are uncomfortably aware that the focal point of 
their grief--their loved one's body--will be pounced upon by 
the standby team and whisked away. Inevitably, the family 
will feel disenfranchised. They may even feel alienated from 
the patient at a time when they should be drawing closer. 

The standby staff needs to be aware of all these potential 
problems. As much as possible, you should try to see things 
from the family's point of view, and a good way to do this 
is to turn the situation around. Imagine that your loved one 
is near death, and despite your deepest wishes, some 
outsiders are planning to cremate the patient. They have no 
interest in your preferences, and they refuse to let you  
cryopreserve the person you care most about. Under those 
circumstances, you would feel rage, helplessness, and loss 
of control. This, of course, is how a patient's family may 
feel if they see cryonics as an abomination, yet are forced 
to allow the standby team at the bedside. 
 

Supervision 

A team leader should always be clearly in charge, and should 
be the primary individual to communicate with the patient, 
the family, and medical staff. The team leader must also be 
responsible for assessing the patient's condition and 
alerting other staff when cryopreservation is imminent. 
Responsibility for this cannot be delegated to medical 
personnel treating the patient, or to relatives or friends. 
The team leader should also be responsible for delegating 
treatment-related and housekeeping or administrative chores 
to standby team members. 

Providing Home Care Support 

If the standby is taking place in the home, family or 
friends who are helping out will probably become emotionally 
and physically exhausted by stress and sleep deprivation. As 
has been noted in Chapter Two, there has been a revolution 
in the way that terminally ill people are cared for in the 
Western world, and this has been driven in part by 
disintegration of the extended family and the close-knit 
community that once existed. Far fewer aunts, grandparents 
older children, and neighbors are likely to be available to 
sit with the patient, provide basic nursing care, prepare 
meals, and do household chores. Therefore, at least one and 
preferably all of the standby team should have good, basic 
nursing skills such as turning, bathing, changing bedding, 
preventing and managing pressure sores, and use of use of 
hygienic products for perianal and mouth care. 
 
I have often arrive at a home standby to find one haggard 
husband/wife/lover trying to provide round-the-clock care. 
The kitchen sink is full of dirty dishes, the trash cans are 
overflowing, and the refrigerator is empty. In such a 
situation, as soon as the standby team has deployed its 
equipment and made arrangements for ice and transportation, 
they should quietly pitch in to take over housekeeping 
duties (assuming the patient's condition is stable enough to 
permit this, as is often the case). Of course, if they 
encounter any resistance or resentment which cannot be 
resolved, they should refrain from interfering in 
housekeeping duties. Above all it is important not to "make 
a big deal " of these supportive actions or call attention 
what is being done. By taking care of chores quietly and 
efficiently, the team is less likely to embarrass the family 
or patient and more likely to be accepted as decent and 
caring people who will be valuable over the long haul of the 
days and nights that may lie ahead.
 
Another area where help can be much appreciated is in 
offering nursing tips which unskilled family members may 
know nothing about. The standby team might show the family 
how to turn the patient and change bedding, or could 
recommend products such as an eggcrate mattress or a 
hospital bed. In my experience, family members often won't 
know about basic nursing equipment such as a foam ring to 
ease or prevent bedsores. The family may be surprised and 
grateful when they see the profound difference these 
products can make in the patient's well-being.
 
It's quite likely that family or friends will have "never 
done this before." Usually, they have never seen someone die 
and won't know how to give care when the patient becomes 
frankly agonal (in part because they are frequently 
overwhelmed emotionally by the experience, as well as being 
physically exhausted). During this time, family members may 
be deeply grateful for the simplest acts of nursing care, 
such as taping the patient's eyes closed when she or he is 
no longer able to close them unaided (thus preventing them 
from drying out). 
 

Setting Limits and Defining Roles For Family 

 Usually family or friends caring for the patient will have 
definite opinions about what they will do and will not do 
relating to the patient's transport. They may say things 
such as, "I don't want to be there when you start the 
transport," or, conversely, "It's important for me to help 
out in any way that I can." Negative statements should be 
relied upon in planning for the patient's transport. Helpful 
statements should not be relied upon, because the person may 
become overwhelmed by grief and unable to lend a hand. Even 
the most seemingly stoic person may fall apart when legal 
death occurs or transport commences.
 
Bearing this in mind, it can still be rewarding and 
important for family members to be involved in the patient's 
cryopreservation. I have known several cases where skilled 
family members made a tremendous difference in the care the 
patient received. On at least three occasions, the family 
carefully documented the patient's transport by still and/or 
video photography. In another case, a family member reliably 
took notes during transport. 

This obviously benefits the transport team, but it can be of 
equal benefit to the family member who needs to feel useful 
and active when death occurs. 

Coping With Our Own Anxieties 

For those of us who have never been involved in a transport 
before, there are numerous sources of uncertainty and 
anxiety. Should we be perkily cheerful, or silent and 
respectful? Are there things we shouldn't say or do? 
The best advice is to behave as you normally would. Don't 
avoid talking about dying. Don't try not to refer to the 
patient's illness. On the other hand, don't go out of your 
way to talk about these topics. 

Always address a patient personally; never talk about him as 
if he's not in the room. And avoid treating a patient like a 
child, using phrases such as "Did we sleep well last night?" 
You will naturally tend to feel uncomfortable in an 
unfamiliar situation, and if this is the case, you should 
feel free to talk about it. If it's your first standby, 
don't try to keep this a secret. 

It always helps to ask the patient or family how they are 
doing and offer specific help in small, simple ways. Ask if 
anyone needs something to drink, or check whether the 
patient is comfortable in that position. Sometimes just 
jumping in and doing something that obviously needs to be 
done (folding laundry, making a pot of coffee) is all that's 
needed to make yourself--and everyone else--feel better. 
Above all, don't be afraid to open up and share. Show 
everyone that you are willing to be honest and vulnerable. 
During a standby, people often tend to talk about deep 
feelings and personal experiences. I have listened to dying 
patients and their spouses tell me how they first met, what 
their first night was like together, what they fought over, 
and even what they did in bed together. These things were 
shared with joy and sorrow, love and honesty. I have 
listened, kept the confidence of these moments, and where it 
was needed, I have shared my own intimate thoughts and 
experiences in return. 

The Technical Aspects of Standby and Transport 

Providing emotional and home-care support is important, but 
it must always take second place when the patient's clinical 
welfare is concerned. Never allow personal factors to 
compromise the technical care which constitutes the core of 
transport.
 
The team's first objective is to deploy the physical 
capability to carry out transport. Its second objective is 
to see that the necessary logistic elements are in place 
(prompt pronouncement of legal death, transportation, 
supplies such as ice and oxygen, and so on). The personal 
factors will be meaningful only after these elements are 
firmly and reliably in place. 

Dealing With the Patient's Bereavement and Grief 

We tend to assume that surviving friends and relatives are 
the ones who will feel bereavement and grief. During the 
dying process, however, the patient will feel these 
emotions, too. (S)he is about to be separated from work 
family, friends--all the elements of temporal existence. 
Even if cryopreservation eventually results in revival, the 
patient will still be deprived of everything here and now. 
The future is unknown and potentially frightening, 
especially since the patient may have to confront it without 
loved ones, familiar possessions, institutions, and 
relationships. 

If you try to cheer the patient by talking about how 
wonderful the future will be, you're unlikely to have much 
success. It will be more helpful to remind the patient that 
there are others who will be making the same journey, 
especially if there are friends or relatives who have signed 
up for cryopreservation. 

If none of the patient's family or friends are cryonicists, 
you should mention that you and others of the standby team 
are hoping to make the journey into the future, and you 
should talk about others who are already waiting in liquid 
nitrogen. It may help to describe some of these people in 
detail, to make them seem real as people and help to ease 
the sense of isolation and loneliness which accompanies 
dying. 

One of the benefits of cryopreservation is that the patient 
can have some realistic hope of being reunited with friends 
or loved ones "at the other end." It can also help to speak 
of the impending cryopreservation as a risky medical 
procedure rather than a death sentence.
 
Cryopreservation can provide profound comfort to patients 
who were feeling helpless, frantic, or trapped before the 
standby was established. It is absolutely legitimate to 
emphasize these positive values as counterpoint to the 
inconvenience and cost, in both money and emotional trauma, 
that cryopreservation also entails. 

Dealing With the Family's Bereavement and Grief 

Grief and bereavement will always occur, even in a strongly 
pro-cryonics family which shows no initial sign of these 
emotions. If the family is actively involved in the 
patient's cryopreservation, grief may be delayed until the 
transport is over or even until the patient is encapsulated. 
Different people handle bereavement in different ways. Some 
will weep and sob uncontrollably. Others will appear dazed 
and withdrawn. Some will alternate between these states. 
Still others will become obsessed with any problems that may 
have occured during cryopreservation, or they may focus on 
pain or discomfort that the patient may have felt during the 
terminal phase. 

Grief responses may be expressed indirectly, sometimes as 
anger directed at inappropriate targets such as the clergy, 
God, the medical staff, the transport team, or the cryonics 
organization. Always remember that grief is natural and 
appropriate. 

Also, bear in mind that while grief will diminish with time, 
it will never go away, and it may serve a necessary 
psychological function for the people who experience it. By 
all means reassure the family that time will improve things, 
and advise them to allow some contemplative time to deal 
with their feelings before they return to the routines of 
everyday life. But don't try to tell them that they will 
eventually forget all the pain they are feeling. Some of 
that pain will always be there--at least until the time 
comes (if ever) when they are reunited with their loved one. 

The best you can do is to spend a while talking about the 
patient and listening to the family talking about the 
experiences they shared with the patient. You should also 
reassure the family that the cryonics organization will be 
conscientiously and diligently caring for patient in years 
to come. This may provide comfort and ease some of the grief 
even in cases where family members are not cryonicists.
 
If bereaved people ask questions such as, "My God, will I 
always feel like this?" you may want to describe the typical 
course that grief takes. The acute period usually lasts 
several months (2) and is typically followed by a mourning 
period of one or two years, during which the survivor deals 
with the loss and incorporates it into everyday life (3). 
Where there has been a good relationship between the 
transport team and the family, it's quite appropriate for 
the team leader to contact the family from time to time 
during the first year, to see how they are doing and ask if 
there is anything they need that the team member can help 
with. This also provides an opportunity to update the family 
on the continuing care of the patient and to assure them 
that there is still hope of eventual resuscitation. 

Summing Up 

The job of the standby team goes far beyond delivering 
technical cryopreservation care. To be truly successful, 
standby team members must work to meet the pre-
cryopreservation needs of the patient and of the family as 
well. The task is not just to get the patient cryopreserved, 
but to help the patient and loved ones to experience dying 
and cryopreservation in as peaceful and positive a way as 
possible. 



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