From Cryonics Jan-Feb 2012

by R. Michael Perry

[Update of the article “Options for Brain-Threatening Disorders” that appeared in Cryonics, 1st Q. 2010; last updated May 2014]

INTRODUCTION

As cryonicists we want to be cryopreserved with mental faculties intact. Prospects for this are threatened if one has a brain disorder such as malignancy or Alzheimer’s disease—or simply advancing old age, with its usual risk of strokes and other brain damage. To best counter such a physical threat, one wishes to have cryopreservation performed electively, that is, undergo proactive legal death, when by reasonable biomedical criteria the time is right. But there are complications. Though cryonicists see cryopreservation as a medical procedure, legally it qualifies as “disposal of a dead body” (or other remains). With a normal medical operation, one might be anesthetized and the operation performed without much fanfare, even if success or survival of the patient is not guaranteed. With cryonics the procedure can be started only after the patient is legally dead (possibly barring a few jurisdictions, which have not been used). A cryonicist wishing immediate cryopreservation thus must induce a state of cardiac and respiratory arrest or clinical death—suicide in the eyes of the law—before the procedure can begin. Such an act would create an additional impediment to good preservation, in that cases of suicide are normally subject to mandatory autopsy which is highly damaging to the preservation process.

So what are we to do? A number of strategies are possible, ranging from simple advance planning to interventions, some of a more conventional nature, some of them untried thus far. Different jurisdictions offer different possible options, some of them especially favorable to cryonics, for example, states or countries where physician-assisted dying is legal, or where otherwise mandatory autopsy can be mitigated by using nondestructive scanning in place of dissection. In what follows I first consider preliminaries—what can be done in advance of any problem, then interventions to be used when physical symptoms of varying severity occur.

PRELIMINARIES

Cryonics arrangements themselves are the basic preliminary for addressing the problem of one’s clinical death, whatever might be involved. At the time arrangements are made some thought should be put into the possibility that intervention may be needed to escape damage to the brain, or that mental impairment may occur despite any efforts to avoid it. Stating one’s wishes and preferences in writing is a good starting strategy which can be worked out with one’s cryonics service provider. Among the desirable choices is for a durable power of attorney to make decisions in case one is incapacitated. Saving personal information in such forms as notes, diaries, photos, and audio or video clips is also highly advisable as a way to allow reconstructions of memory in case the brain is inadequately preserved. (It is expected that a level of future technology capable of reanimating a well-preserved brain and restoring it to a healthy, functioning state could probably also accomplish such tasks as restoring or reconstituting lost memories and other features from preserved records and reasonable deductions. Thus, for instance, it is unlikely that a resuscitated person will have disabilities such as paralysis or speech aphasia, regardless of how much damage may need to be addressed. Indeed, as noted below, there are significant options even with only a cell sample of the physical remains.) If possible, one should choose one’s associates to be sympathetic and understanding of the intentions and procedures of cryonics. A friendly, supportive community of fellow cryonicists will help ensure the best results.

Some discussion is in order about philosophical issues. Resuscitation from cryopreservation is a subject that has many divergent points of view even among those who accept the basic idea of cryonics. Most agree that with good preservation resuscitation is a worthwhile goal that might be achievable someday, if technological advances continue. The question then becomes whether the preservation will, in fact, be good enough to be worthwhile to the individual concerned, and what measures are reasonable to take in anticipation of problems that may arise.

Not everyone will agree that a certain measure is worthwhile—for example, separately storing a cell sample in case something should happen to one’s cryopreserved remains. (In this way a clone of oneself might be produced, which could then be “programmed” with memories and other personality elements captured in data files. A version of oneself could then emerge that would be very similar in thoughts and behavior to the original, and from some but not all points of view would qualify as a bona fide resurrection of that individual.) With this in mind I mention that a number of options exist for indefinitely storing both digitized or other recorded data and genomic samples. Some organizations that are strongly sympathetic to cryonics are the Society for Venturism, the Society for Universal Immortalism, and Terasem. As of this writing, the Society for Universal Immortalism would be amenable to storing both digital or other recorded information and genomic samples at room temperature (resin-embedded for example). The Society for Venturism is a “maybe” on both counts, though perhaps stronger on “digital” than “genomic.” Terasem at present is both “digital” and “genomic,” with years’ worth of practice and expertise. Their CyBeRev project stores “mindfiles” and other personal data; their LifeNaut project stores cell samples at cryogenic temperatures. They hope to recreate individuals from these sources, if no other data about them survives. Genome sequencing, which would replace the physical genome with a digital file containing its information, is rapidly becoming cheaper and may cost less than $1,000 in the near future, making it affordable to many.

Other possibilities for information storage exist but all are presently underdeveloped and underutilized for the purpose of backing up cryopreservations or as standalone sources; feedback from interested parties is needed.

BRAIN DISORDERS: DEALING WITH SYMPTOMS

Dementias, malignant brain tumors, and other such threats to one’s personal identity are of very frequent occurrence as one ages and call for as much preparation as possible. Very often the cryonics member has advance warning. A diagnosis is made that provides a time window before serious impairment can be expected. A reasonable course would be proactive legal death before such has occurred, though again one must avoid an autopsy which often is mandatory. A simple, straightforward approach in the case of a brain malignancy might be voluntary stopping of eating and drinking (VSED) until clinical death occurs. This can be accomplished with hospitalization or hospice care, as has occurred with some Alcor cases witnessed by the author.

One public case of this sort was Arlene Fried who was cryopreserved (as a neuro or head-only, the rationale being that future technology could very likely create the missing rest of the body) at Alcor’s facility in Riverside, California in June 1990 [1]. Ms. Fried, who is Linda Chamberlain’s mother, had the loving, attentive support of her daughter and her son-in-law Fred Chamberlain, two cryonics pioneers who well understood and sympathized with her views and what she was attempting. Ms. Fried, terminally ill with cancer that had metastasized to the brain, was cared for during approximately 10 days while her VSED was in progress, receiving only some moistening of her lips and mouth from time to time, and very limited amounts of fluid internally. She persevered and accomplished her mission of proactive legal death and cryopreservation, escaping both the ravages of the tumor in her head and the autopsy that would have followed had she chosen an easier “exit.”

In her case the escape from autopsy was facilitated by the fact that her illness was legally “terminal.” Death by starvation/dehydration was classed instead as occurring from “natural” causes not mandating postmortem dissection. In addition to eliminating the autopsy, hospital personnel were sympathetic and beneficial to the course that was followed. More generally in cases of diagnosed-as-terminal, brain-threatening illness, death by VSED may be the best available means for the cryonicist to proceed. A slower-acting but still lethal brain malady such as Alzheimer’s disease is not similarly classed as “terminal” and victims may find it much harder to avoid autopsy, though an alternative, “virtual autopsy” that uses nondestructive means now exists (see below). It should also be kept in mind that although autopsy presents one of the most harmful prospects for a cryonics patient, the effects of progressive destruction of the living brain may be worse.

The ideal alternative to VSED would be to administer general anesthetic and place the patient on heart-lung bypass to start cooling and the cryoprotective procedure (introduction of agents which minimize damage to tissues during the deep cooling that follows). Cardiac arrest would follow, which would classify the procedure as euthanasia. Such a procedure would be disallowed in the U. S., however, even in jurisdictions that permit assisted suicide. States in which physician-assisted dying is legal (currently Oregon, Washington, Vermont, Montana, and Bernalillo County, New Mexico) allow a physician to prescribe lethal medication to a terminally-ill patient which then must be self-administered by the patient (rather than administered by another party). At best a cryonicist could self-medicate to clinical death before cryoprotection was started. To date no cryonicist has attempted to use the physician-assisted dying law of any of these jurisdictions to hasten legal death. It would arguably be very risky to do so, in view of the unconventional nature of cryonics, which might invite bureaucratic interference. In terms of public relations it is important to emphasize that a cryonicist who would make use of such laws is seeking an extension of his/her life, not an end to life. Although many cryonicists may be supportive of dying-with-dignity and related causes, an overriding aim of cryonics as a movement is to get cryopreservation accepted as an elective medical procedure.

OUTSIDE THE UNITED STATES

Outside the United States a few jurisdictions have legalized physician-assisted dying, in particular Switzerland, where citizenship in the country is not required. Physicians are not prosecuted for assisting a suicide, so long as they are not motivated by self-interest. Organizations have been set up to provide this service, the best known being Dignitas [2]. Founded in 1998 by Ludwig Minelli, a Swiss lawyer, Dignitas enables those with terminal illness or severe physical or mental illness to die assisted by qualified doctors and medical staff. Under certain conditions persons with mental rather than physical ailments are assisted to die; the patient’s condition must fulfill specifications of the Federal Supreme Court of Switzerland. In fact about one fifth of those dying through Dignitas do not suffer from a terminal or progressive illness but from “weariness of life.” The method of suicide is generally ingestion (swallowing) a lethal dose of the barbiturate Nembutal, though helium gas has also been used. It appears that the majority of cases are not autopsied but there is, of course, no guarantee of this [3].

Could Dignitas or a similar organization help cryonicists? Probably the answer is “yes” but there would be extra expense (maybe about $10,000 overall) for an American using the service, plus the remains immediately after pronouncement would need to be handed over to a cryonics service provider such as Suspended Animation, Inc. for perfusion and initial cooling, an additional and no doubt considerable expense. The operation would be greatly facilitated, in some important ways, if there could be a Dignitas-type organization that catered to cryonics cases only. The liberal laws of Switzerland in regard to physician-assisted dying would seem to offer such a possibility, though it remains speculative. Another country that has legalized physician-assisted dying is the Netherlands [4], though apparently it is available only to citizens of the country, unlike Switzerland. Also unlike Switzerland, euthanasia (active participation of physicians in causing death) is legal in the Netherlands. The following conditions (“due care” criteria) must be met before a doctor can proceed:

1. The patient’s suffering is unbearable with no prospect of improvement.
2. The patient’s request for euthanasia must be voluntary and persist over time (the request cannot be granted when under the influence of others, psychological illness or drugs).
3. The patient must be fully aware of his/her condition, prospects and options.
4. There must be consultation with at least one other independent doctor who needs to confirm the conditions mentioned above.
5. The death must be carried out in a medically appropriate fashion by the doctor or patient, in which case the doctor must be present
6. The patient must be at least 12 years old. (Patients between 12 and 16 years of age require the consent of their parents.)

The doctor must then report the cause of death to the local municipal coroner. A regional review committee assesses whether the due care criteria were met, and if so, the case is closed. It appears that autopsy in approved cases of euthanasia is generally not mandatory, though this needs further investigation.

People diagnosed with Alzheimer’s disease (not considered “terminal” in the U. S., thus off-limits for physician-assisted dying) are eligible to request euthanasia provided they are of sound mind and experiencing unbearable suffering [5]. Exactly what constitutes “unbearable suffering” will vary from patient to patient, and could involve a perception that one is about to lose one’s mental faculties rather than severe pain. In many cases, the protocol involves assistance with lethal self-medication, not active euthanasia. Between 1998 and 2009 only 25 people made use of this option (about two or three cases per year), all with early stages of dementia (not limited to Alzheimer’s disease). More recently the numbers have increased (12 cases in 2009, 21 in 2010) due to more publicity for this option. Doctors refer to a “window of opportunity,” in which a patient diagnosed with untreatable dementia is still capable of understanding the disease, its progress, and the effects on the quality of life. A written euthanasia request is not required and a doctor is obliged to record verbal requests in the patient’s record. In principle it is legally permissible to act upon a written request during later stages of the disease when the patient is no longer competent, but in reality most doctors are reluctant to proceed at that stage. Recent advances in early diagnosis of Alzheimer’s disease through analysis of fluid samples and PET scans should enlarge the “window of opportunity” for euthanasia and thus may increase the use of this option in countries where it is permitted.

In 2010 a citizen’s initiative called Out of Free Will demanded that all Dutch citizens over 70 who feel tired of life should have the right to end it with professional help. If successful, it would no longer be essential to claim unbearable suffering, something that could work in cryonicists’ favor, at least for those old enough. A number of prominent Dutch citizens supported this initiative, including former ministers, artists, legal scholars, and physicians.

Cryonicists should be wary that physician-assisted dying far from a cryonics facility, especially overseas, would result in a greatly inferior cryopreservation to what can be achieved if legal death occurs near Alcor in Scottsdale, Arizona. This should be considered carefully in comparing physician-assisted dying to VSED if VSED is an option.

MORE ABOUT VSED [6]

In jurisdictions where physician-assisted dying or euthanasia is not an option, as is generally the case today, other approaches must be used. In such cases, voluntary stopping of eating and drinking is possibly the best of currently available means to hasten one’s legal deathwithout inviting autopsy or legal recriminations, provided one has a recognized, terminal illness. Otherwise an autopsy could still be mandated after VSED (as a friend of mine who wishes to remain anonymous confirmed by consulting with medical examiners in Arizona in 2009).

If water intake is stopped completely rather than tapered off, VSED takes about two weeks to cause death by dehydration; death is almost certain within 16 days. The discomfort involved is generally mild but will vary with individuals. Hunger usually disappears after a couple of days, and after a week of fasting, metabolic by-products generally cause a sense of well-being, even elation. Electrolyte imbalance (especially potassium loss) eventually causes cardiac arrest during sleep.

The bowels should be cleansed at the start of VSED to avoid gastric distress later on. The most important comfort measure is adequate mouth care. The mouth can be kept moist with small amounts of ice chips, sugar-free popsicles or gum, or saliva substitutes. VSED itself generally does not require pain medication but the patient’s other health problems may require it for palliative care. Benzodiazepines such as Valium may be prescribed for anxiety if needed.

VIRTUAL AUTOPSY AS AN ALTERNATIVE TO POSTMORTEM DISSECTION [7]

If autopsy is mandated it still might be possible to use noninvasive, “virtual” procedures, particularly those based on computerized scanning techniques (CT, MRI scans) to nondestructively section parts of the body and satisfy the requirements of autopsy. (Here it should be noted that the delay and lack of patient support prior to the procedure could still be highly damaging; further discussion below.) Another possibility is to use a combination of invasive and noninvasive techniques, with the latter reserved for the head so that traumatic damage to the brain is still avoided. Virtual autopsy or “virtopsy” came about because, in the examination of crime victims, certain needs could not be met otherwise. For example, a close comparison between a skull indentation and a possible murder weapon might be needed. Using a combination of techniques including such 3D imaging technologies as CT and MRI scanning, a geometrically accurate representation of the body, both inside and out, could be projected on a screen and reversibly manipulated without having to disturb or touch the actual body, beyond the initial scanning. The scanning information itself would remain in a computer database where it could be accessed indefinitely for further study and analysis.

Virtopsy offers many advantages over physical dissection in postmortem examinations, including the possibility of turning back layers of muscle or other tissue like pages of a book to examine bullet tracks or other trauma, all in completely reversible fashion which can be redone according to different algorithmic strategies and goals. In some cases such as for embedded gas bubbles information will be preserved that would be irretrievably lost through dissection. At the same time there is much information that only dissection can adequately reveal, such as colors of tissue (important in assessing inflammation), what kind of tumor is present, and chemical data. A system for doing virtopsy is expensive, costing in the neighborhood of $2 million or more. Virtopsy thus is unlikely to entirely replace dissection anytime soon (if ever), but clearly offers forensic advantages when it is additionally available.

For a cryonicist, any autopsy, even a virtual autopsy, is a disaster if there is an intrinsic delay of many hours in absence of even basic stabilization medications, cardiopulmony support, or cooling. Such an insult would degrade brain structure and jeopardize later cryoprotective perfusion, causing even more damage from freezing. Such delays are all but unavoidable with dissections and may also be hard to circumvent with virtopsies. The hope is that, nevertheless, if an autopsy in some form is needed, a virtopsy will be sufficient. A virtopsy, in addition to being nondestructive, has the advantage of taking less time (as little as 30 minutes versus 2 hours or more). A long delay in arranging for the procedure in the first place can still occur, however, as happened in an Alcor case involving partial virtopsy, with nondestructive sectioning of the head [not a proactive legal death][8]). In the case of proactive legal death, the virtopsy could even be done in advance of legal death, and other details worked out with officials to ensure that no question persists as to the cause of death so that dissection would be waived and further delay avoided. In this manner, then, cryopreservation could begin immediately after death is pronounced, as currently happens in the best of cases when clinical death occurs through natural causes.

SUMMARY AND AFTERTHOUGHTS

In confronting the possibility of brain-threatening illness and mental impairment, cryonicists have two sorts of options, (1) preparation in advance, (2) intervention when symptoms appear, possibly leading to proactive legal death. Preparing in advance includes choosing someone to act as representative and decision maker if one is incapacitated, and also, storing information to be used in restoring damaged memory or other brain functions. Interventive strategies when symptoms of intractable brain illness appear include legal ways to hasten one’s legal death so cryopreservation can halt the destructive process. At present the safest such strategy, if one has a diagnosed terminal illness, appears to be voluntary stopping of eating and drinking. Clinical death is hastened in a way that is considered “natural” and does not require autopsy, so that cryoprotective procedures can begin without interference.

Otherwise the problem is more difficult, and overall the situation is far from ideal. An improvement might result if a service such as Dignitas in Switzerland could be used. Legal death might proceed faster with fewer medical complications, particularly if a company would limit its services to cryonicists only. Better still would be to have cryopreservation treated as a medical procedure which could be freely chosen and started at any reasonable time. This appears to be a long way off, unless progress is made in a country such as the Netherlands where voluntary euthanasia under limited conditions is presently legal and public sentiment seems to favor its extension. Meanwhile cryonicists must work together to increase whatever options are feasible. The use of virtopsy, which could be done premortem or relatively quickly postmortem, is a possibility for obviating damaging dissection but, as in so many other areas, must be researched further and efforts made for useful implementations to occur.

Bibliography: Boudewijn Chabot, A Hastened Death by Self-Denial of Food and Drink, Amsterdam, 2008, 64 pages. [Out of print].

References and Notes.

1. Linda Chamberlain, “Her Blue Eyes Will Sparkle,” Cryonics Dec. 1990, 16.

2. “Dignitas (assisted dying organisation),” Wikipedia, the Free Encyclopedia.

3. Silvan Luley, Dignitas, private communication 27 Dec. 2010.

4. Except as noted, the portion on the Netherlands is summarized from “Euthanasia in the Netherlands,” Wikipedia, the Free Encyclopedia.

5. This paragraph, on euthanasia for cases of Alzheimer’s disease and other dementias, is based on “Euthanasie bij Alzheimer” (in Dutch).

6. The final two paragraphs of this section are based on a review by David Brandt-Erichsen of the book A Hastened Death by Self-Denial of Food and Drink, by Boudewijn Chabot, MD, PhD. The review appeared in the Compassion & Choices Arizona newletter, May 2009, p.7. The book’s author, who in the book refers to the method as STopping Eating and Drinking (STED), studied 110 cases of VSED in the Netherlands. His book is a practical guide to VSED for both patients and health care givers.

7. Summarized from Virtopsy and the Traditional Autopsy (wikinut.com)

8. Alcor Case Report A1712: DavidHayes.

My thanks to Cairn Idun, Hugh Hixon, and David Brandt-Erichsen for assistance in preparing an earlier version of this article, and to Aschwin de Wolf and Brian Wowk for assistance with the present version. —RMP