Table of Contents
END-STAGE CARE OF THE HUMAN CRYOPRESERVATION PATIENT
CHAPTER 3: Meeting the Needs of Patients and Family
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.
“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 nor 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.
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.
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 arrived 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 occurred 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.
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.
Go to Chapter 4: Dealing with the Patient’s Health Care Providers