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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