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END-STAGE CARE OF THE HUMAN CRYOPRESERVATION PATIENT
CHAPTER 5: Home Hospice
by Michael G. Darwin with Charles Platt
Copyright 1994 by Michael G. Darwin. All rights reserved.
Alcor Disclaimer: This manual was written in 1994 by former Alcor president, Mike Darwin, for his own cryonics service company, BioPreservation, Inc., which ceased operation in 1999. The opinions and procedures in this manual are not necessarily those of the Alcor Life Extension Foundation. The manual is reproduced here for its educational value in explaining the many challenges of implementing cryonics in practical settings.
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 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. Visiting 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 services. These latter groups usually consist of four to six registered 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 forbid 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, that 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 addressed? 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 purchased 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 accommodate 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 accommodating, 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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