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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