X-Message-Number: 2945
Date: 28 Jul 94 03:30:44 EDT
From: Mike Darwin <>
Subject: SCI.CRYONICS BPI Tech #14

BPI TECH BRIEF # 14

Chapter 5 of STANDBY: END-STAGE CARE OF THE HUMAN 
CRYOPRESERVATION PATIENT

by Michael Darwin with Charles platt

Copyright 1994 by Michael G. Darwin.  All rights reserved.

Home Hospice 

Death is not the ultimate tragedy of life. The ultimate 
tragedy is depersonalization--dying in an alien and sterile 
area, separated from the spiritual nourishment that comes 
from being able to reach out to a loving hand, separated 
from the desire to experience the things that make life 
worth living, separated from from hope. 

                                      --Norman Cousins, 
                                  Anatomy of an Illness 


The History of Hospice 

The primary function of a hospital is to deliver treatment 
efficiently to patients who are seriously ill, in order to 
cure disease and restore or improve health. Hospitals are 
geared primarily toward treating patients who are judged 
curable or at least amenable to treatment. Hospitals are not 
typically geared to meet the needs of the dying patient. 
Until the Middle Ages it was not considered proper for 
physicians to see or treat patients whom they judged to be 
terminally ill. Medical responsibility ended at the time a 
physician pronounced a patient beyond help. Terminal 
patients thus became the responsibility of the gods, the 
family, or the "nurse" (1). 

This attitude may seem cold and inhumane today, but at the 
time there was something to be said for it. Medical 
resources were scarce, and it was considered wasteful to use 
them on patients whom a doctor could not cure. In any case, 
terminal care was outside the expertise of physicians and 
was better handled by those whose job was to provide solace 
during the dying process, supportive nursing care until 
death, and hope for survival in the hereafter. 

During the twentieth century, it became a firm rule that if 
a patient's life could be prolonged to any degree, that 
patient would always receive treatment. Thus, if a patient 
dying of end-stage cancer experienced cardiac arrest, 
vigorous resuscitative measures would be routinely applied. 
Beginning in the mid-1960s, doctors began to rethink this 
approach, largely because of increasingly vocal complaints 
from the victims of this kind of treatment and their next-
of-kin. The 1970s saw the emergence and rapid growth of the 
patients' rights movement along with spiraling costs for 
medical care (See figure 5-1). These two factors lead to 
tremendous change in policies regarding terminally ill 
patients.
 
Hospitals and nursing homes follow institutional guidelines 
in all aspects of medical care. Furniture, meals, nursing 
procedures, and decor all tend to be standardized and 
uniform. Most patients are usually willing to put up with 
the dehumanizing, bureaucratic, and inflexible aspects of 
institutional care, so long as they can look forward to the 
reward of regaining their health. The dying patient, 
however, sees things differently. The dying patient has 
little interest in a medically ideal diet or a sleeping-
waking schedule that fits in with nursing schedules. The 
dying patient would much rather be surrounded by familiar 
objects, sleep on a favorite pillow, eat particular foods, 
and see visitors at any time of the day or night. There is 
no longer a need for high-tech care; instead, the concern is 
for high-touch care. 

Hospice was created as an answer to this situation. The 
modern hospice movement traces its roots to the work of Dr. 
Cicely Saunders, who organized St. Christopher's Hospice in 
Sydenham, England in 1967 (2) (the same year the first man 
was frozen (3)). St.Christopher's is situated in a close-
knit community that consists of about 1.6 million people 
spread over an area slightly more than ten miles in 
diameter. 

Patient rooms and four-bed wards are filled with flowers, 
photographs, personal belongings, and things which remind 
the dying individual of home. Visting hours are flexible, 
and pets as well as people are welcome. Children are 
especially encouraged to visit. There are no ventilators, 
TPN pumps, or other high-tech equipment. Attention is 
focused on meeting the patient's emotional and psychological 
needs and controlling pain and discomfort. 

In addition to the in-patient care offered by St. 
Christopher's, the hospice also offers an outpatient plan, 
allowing the patient to be cared for by family or hired 
help. Hospice nurses establish the regimen and visit several 
times a week to evaluate the situation and provide special 
skilled care (dressing changes, pain control assessment, or 
assistance with bathing). They also instruct the family or 
hired help on a day-to-day basis. An on-call nurse is 
available round-the-clock to answer questions and deal with 
emergencies. When death occurs, the on-call hospice nurse 
goes out and pronounces death, and the coroner accepts this 
as a valid pronouncement. 

In the United States, hospice care is delivered through a 
variety of mechanisms. Some hospitals have established in-
patient hospice programs either by setting aside a special 
area of the hospital (a hospice ward) or by relaxing the 
rules for the terminally ill on regular nursing floors, 
where special staff are provided. Larger communities will 
often have a free-standing in-patient hospice which 
typically also provides home hospice care. Smaller 
communities (and many larger ones, too) also rely on small, 
non-profit and for-profit home hospice nursing serrvices. 
These latter groups usually consist of four to six 
registerned nurses (and possibly a practical nurse or 
nurse's aide as well) and a consulting physician or medical 
director. Nurses see the patient at increasingly frequent 
intervals as the illness progresses towards conclusion. They 
insure that good care is being given at home (and refer the 
patient to hospital or nursing home if home care is no 
longer feasible) and pronounce the patient dead when death 
occurs. 

If a terminal patient prefers to remain in the home 
environment, the importance of enrolling in a home hospice 
program cannot be understated. There are powerful advantages 
in terms of ensuring good, supportive care, palliation, and 
freedom from pain. There are also powerful legal advantages. 
When death occurs at home, a patient normally runs the risk 
of becoming a corner's or medical examiner's case. At worst, 
this could lead to an autopsy; at best, the coroner will 
usually take custody of the body and refuse to surrender it 
until the treating physician has been contacted and is 
willing to sign the death certificate. This, of course, can 
result in many hours of warm ischemia, during which the 
standby team is unable to act. Clearly, this is an 
unacceptable situation.
 
By contrast, in home hospice, the patient is registered with 
the coroner or medical examiner prior to death. A doctor is 
no longer required to pronounce death; the hospice nurse is 
authorized to do so. The coroner is then notified and the 
patient is released--to the mortician, or to the transport 
team. Procedures can be started the instant that death is 
pronounced, and provided death has occurred naturally, there 
is no risk of autopsy. 
 

Home-Hospice Care Versus Institutional Care 

In my experience, under many circumstances pronouncement of 
death in the home setting is ideal. It offers the following 
advantages over a nursing home or hospital: 

1. Freedom from bureaucracy. Many institutions will refuse 
to allow a standby team to administer medications while the 
patient is on the premises. Some institutions will even 
forbit CPR. In the home setting, these kinds of bureaucratic 
problems generally do not exist. Also, immediate access to 
the patient is insured as soon as legal death is pronounced. 

2. Low risk of media involvement. It is far less likely, in 
the home setting, that anyone will leak news of the 
impending cryopreservation to local journalists. 

3. Swifter pronouncement of legal death. If the hospice and 
nursing staff are selected carefully, death can be 
pronounced using less rigorous clinical criteria. For 
example, a hospital may require that the patient be on a 
cardiac monitor and show complete absence of cardiac 
electrical activity. Unfortunately, many patients will 
experience electromechanical disassociation (EMD) and 
continue to produce EKG activity long after cardiac pumping 
has ceased, thus exposing the patient to a protracted period 
of normothermic ischemia. In the home setting, a nurse may 
pronounce death using clinical signs such as dilated, 
unresponsive pupils and the absence of heartbeat/pulse, 
blood pressure, and respiration. In my experience, in-
hospital personnel will greatly extend the time of 
pronouncement and often wait a period of five or ten minutes 
after vital signs have ceased before finally pronouncing 
legal death. 

4. Immediate cut-down and bypass. In the home setting, it is 
often possible to provide rapid extracorporeal support via 
femoral cutdown and initiation of femoral-femoral bypass. In 
hospitals and nursing homes, such procedures are generally 
prohibited. 

5. More accurate prediction of cardiac arrest. The team is 
able to monitor the patient more closely, and can often 
reach a better estimation of when cardiac arrest will occur. 

6. Premedication. Appropriate meds can usually be initiated 
and continued longer than is typically the case if the 
patient is in an institution. 

7. A more benign environment for the patient. There is 
almost always greater psychological support for the patient, 
the family, and often the transport personnel. The home is a 
friendlier environment that allows for emotional bonding of 
staff and family. 

On the other hand, there may be some disadvantages to the 
home-hospice setting which outweigh the possible benefits. 

1. Impractical layout. The home may be too small, there may 
be stairs that are too steep, and it may be impossible to 
deploy necessary equipment or move the patient easily. 

2. Psychological factors. The patient and/or family may have 
such a psychological need for a nonthreatening environment, 
they can't bear to see transport personnel or their 
equipment. It may be impractical to keep the equipment 
hidden in an adjacent area (basement or garage) until it's 
needed. 

3. Legal complications. There is a greater chance of legal 
complications due to local law or concerns about the 
adequacy of pronouncement in a home setting. 

4. Delayed pronouncement of death. Because of limitations in 
the local hospice program, a nurse may not be readily 
available to pronounce legal death. 

5. Other problems. Nursing personnel may be prohibitively 
expensive, or there may be logistical, psychological, or 
legal problems involved in moving the patient from a 
hospital to a home setting. 


Key Questions to Ask and Answer 

The following questions will help you to decide whether a 
patient would be better off in a home-hospice or hospital: 

1. Will the hospital or the hospice cooperate with the 
cryonics organization and promptly release the patient when 
legal death occurs? 

2. Will the hospital allow cryonics personnel to enter the 
facility and begin stabilization of the patient? 

3. If the patient is hospitalized, will the hospital move 
the patient into a monitored room or ICU cubicle so that 
cardiac arrest can be determined in a timely fashion? 

4. In a hospital, will a physician be available to pronounce 
legal death late at night? In a home-hospice, will hospice 
nurses be available around the clock to pronounce the 
patient, or will they work with nursing registry staff to 
facilitate prompt pronouncement? 

5. Is the hospice or the hospital willing to provide CPR 
until the standby team can reach the patient's bedside? If 
so, for how long? 

6. Will hospital or hospice nurses leave IV lines, bladder 
catheters, and other invasive appliances in the patient 
following declaration of legal death, so that these devices 
can be used by cryonics personnel? 

7. Will hospital or hospice staff be willing to intubate the 
patient or provide any other support or help after clinical 
death occurs? 

8. Will there easy access to sufficient quantities of ice? 

9. Is an oxygen supply available to power the HLR? 

10. In a home-hospice, is the home physically suited to 
transport operations? 

11. Will the patient's family be psychologically able to 
cope with a cardiac arrest and transport of the patient at 
home? 

Clearly, there are no hard and fast rules. The circumstances 
in each situation, and the temperament of the standby team 
leader, will tend to dictate whether a home-hospice is 
suitable or not. 

Home-hospice care is absolutely ruled out if the patient 
refuses it, if close family and friends are unwilling to 
consider it, or if emotionally stable, physically capable, 
intellectually competent caretakers are unavailable. 
Delivering care at home is a draining task which will 
require the full-time effort of at least one paid or 
volunteer caregiver with part-time support from several 
more. The primary caregiver must be willing and able to 
endure a lot of stress. Individuals who are elderly, in poor 
health, or psychologically fragile should not attempt to 
provide this care. 

The cost of home-hospice will often be a deciding factor. A 
registry RN in a metropolitan area will typically cost 
between $25 and $45 an hour (4). If a patient requires 72 
hours of RN time, the bill will be at least $1,800 and could 
be as high as $3,240! Any cost savings in delivering care at 
home can rapidly be eliminated by the need for expensive 
registry nursing staff to facilitate pronouncement. 


Evaluating the Home 

If it seems that adequate caretakers and prompt 
pronouncement will be available, the next step in evaluating 
a home-hospice is to assess the following factors: 

1. Weather and Geography. Does inclement weather threaten 
access to the home? For instance, there are many areas in 
the United States where snowstorms, flooding, or rock or 
mudslides routinely cut off highway access for days at a 
time. Be sure to evaluate the home's geography and the 
season during which standby is to take place. Even areas 
that seem secure and readily accessible may be misleading; 
many areas in the Midwest and the South are routinely 
affected by local flooding and many areas in Northern and 
Southern California are cut off by rock or mudslides, or 
snow. 

2. Infrastructure. Is the home physically accessible by 
road, and are there airports, sources of oxygen, ice, and 
other essential supplies (including nursing services) 
available within a reasonable distance? If the answer to any 
of these questions is "no," can the problem be adddressed? 
For instance, if the home is down a rutted dirt road 
accessible only by 4-wheel drive vehicle, is one available 
which can transport the patient out of the home on Thumper 
support or following total body washout? If ice is not 
available in quantity locally, can a freezer be puchased to 
hold ice on site? 

3. Layout. Is there a clean, uncluttered area at least nine 
feet by fifteen feet? Width and length are as critical as 
total square footage. A room twenty-five feet long by six 
feet wide is not suitable even though its area is greater 
than a room measuring nine-by-fifteen.

Can the portable ice bath be moved in and out of the home 
while continuing thumper support? If not, will it be 
possible to do the femoral cut down and total body washout 
in the home and then transport the patient out in a body bag 
or on a stretcher or ambulance cot? 

Can the Mobile Advanced Life Support System (MALSS) be moved 
into the home or into a suitable adjacent structure such as 
a garage or outbuilding? There must be no more than a few 
stairs, which can be covered with a ramp improvised from 
plywood. Alternatively, if there is a wheelchair ramp, it 
should not be steeper than 15 degrees. 

If the MALSS cannot be deployed in the home, and washout 
using the remote standby extracorporeal set-up is not 
possible in the home, is there a cooperative mortuary or 
other suitable facility nearby? 

Is the home large enough (or are the family/caregivers 
flexible enough) to accomodate family and at least two 
standby staff during their waking hours? There should be 
room for four to six people. An efficiency apartment or one-
bedroom condominium may not provide sufficient privacy or 
working room, though this will depend to some extent on the 
attitude of everyone involved. If the family is welcoming 
and accomodating, a small space can be more tolerable. 

4. Electricity. Are there at least two 15-amp breakers which 
are not loaded with other appliances? Two outlets will be 
needed to operate the extracorporeal and heat exchange pumps 
as well as several monitors (pressure and temperature). 

5. Lighting. Is adequate lighting available, or is it 
possible to install adequate lighting? A portable OR light 
will be needed, and the room which will be used for drawing 
up medications and total body washout will need to be well 
lit. Dual portable halogen work lights may satisfy these 
needs. 

6. Neighbors. Is there enough privacy from neighbors (or are 
the neighbors supportive) so that police are not going to be 
called or complaints registered with other authorities when 
transport begins? For example, if the home does not have air 
conditioning and it is a hot summer day on a cul-de-sac, 
open windows will allow noise from the Thumper to be heard 
by neighbors, which may trigger curiosity or concern. 
Similarly, if Thumper support is being initiated in a condo 
or apartment, noise from the Thumper and staff may be easily 
heard. The comings and goings of standby staff, coupled with 
any parking or other inconvenience, can also trigger a 
response from neighbors. Twice in my experience the police 
have been called during a transport or immediately after it. 
In both cases, the situation was resolved satisfactorily, 
although there were minor delays in moving the patient, and 
the outcome could have been more serious. 

Figures 5-2, 5-3, and 5-4 show a variety of home floor plans 
which range from the impossible to the ideal. Even 
unfavorable floor plans can be worked around in many 
situations. For instance, Figure 5-2 shows a one-bedroom 
apartment with a steep flight of stairs leading up to it and 
a narrow hallway leading to the only exit. This would have 
required the patient to be tilted almost bolt upright on a 
small one-man gurney. Use of the portable ice bath or the 
MALSS was impossible. However, because of good support by 
the caregivers (close friends, in his case) it was possible 
to do total body washout in the living room. Since the entry 
hallway was so narrow, it was necessary to disassemble the 
portable ice bath to get it into the apartment, then 
reassemble it in the living room. Following total body 
washout, the patient was taken off extracorporeal support, 
placed in a body bag (with ice back around his head) and 
quickly carried out of the apartment and down the steps to 
the waiting MALSS. 

Some dwellings are so problematic as to be impossible. A 
small apartment in an older building at the top of five 
flights of stairs is an example of an impossible situation. 
In such circumstances, the patient should be cared for in an 
institutional setting, or there may be a nearby home which 
is more suitable. 

Interfacing With the Home Hospice Staff 

In Chapter 4, I discussed important factors concerning 
dealing with the patient's health care providers. This 
discussion also applies to hospice staff. The only 
difference is that hospice staff will typically want more 
information and are more likely to show some initial 
resistance to the idea of cryonics. There are two reasons 
for this latter attitude: a hospice traditionally focuses on 
accepting death and helping the patient to experience a 
"good death," and hospice care is usually incompatible with 
high-tech, life-support technology. 

In fact, most hospice programs will not accept a terminal 
patient who is still committed to the use of life support 
technology. If a patient insists on being coded 
(resuscitated) if cardiac arrest occurs, a hospice will 
almost always refuse the case. 

Therefore, it's important to present cryopreservation 
arrangements to hospice staff as part of the patient's 
acceptance of dying. Emphasize that "life-support" 
technology will not be applied until after the patient has 
died. 

Cryopreservation should be presented as part of the 
patient's coping strategy, no different from seeking 
religious solace or the promise of a spiritual afterlife. 
You should make it clear that the patient does accept the 
impending death, and sees resuscitation only as a remote 
possibility.
 
As when dealing with other healthcare providers, you should 
never attempt to "convert" hospice staff to the cryonics 
world view. 




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