Options for Brain-Threatening Disorders

[FEATURED ARTICLE]

Cryonics, 1st Quarter 2010

By Mike Perry

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. To best counter such a physical threat, if it should occur, one wishes to have cryopreservation performed as soon as possible. But there are problems.

We in cryonics see cryopreservation as a medical procedure, but this is not recognized legally. With a normal medical operation, one might be anesthetized and the operation performed without much fanfare. With cryonics, the procedure can be started only after the patient is legally dead (possibly barring a few jurisdictions, which have not yet been used, and not counting pets). A cryonicist with a brain-threatening disorder might want to hasten his/her legal death so the procedure can be started in a timely fashion, but there is the additional complication that cases of “suicide” are normally subject to mandatory autopsy which is highly damaging to the preservation process.

So what are we to do? There are many options, but perhaps the most attractive is to follow the advice of the New England Journal of Medicine: “Because physician-assisted death is not available to most terminally ill patients, some medical experts have suggested voluntary refusal of food and fluids as an alternative. Unlike physician-assisted suicide, the choice to stop eating and drinking is legal throughout the United States, available to competent patients, and does not necessarily require the participation of a physician.”1 Death occurring from such a choice is treated as “natural,” and there is no danger or stigma to attending caregivers whose presence could obviate the requirement of autopsy. In what follows I first consider preliminaries—what can be done in advance of any problem—then interventions, including but not limited to voluntary stopping of eating and drinking, 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. 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 strictly “digital”: their CyBeRev and LifeNaut projects store “mindfiles” and other personal data from which they hope to recreate individuals, if no other data about them survives.

Other possibilities for information storage exist but all are presently underdeveloped and underutilized for the purpose of backing up cryopreservations. Feedback from interested parties is badly needed.

Brain Disorders: Dealing with Symptoms

Dementias and malignant brain tumors are things we hope we never have to confront. Unfortunately they happen all too often so we must be prepared as far 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 to deanimate before such has occurred. Due to laws in most jurisdictions, however, cryopreservation procedures cannot simply be started as in the case of a pet but special approaches must be used. 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 I’ve witnessed.

One public case of this sort was Arlene Fried who was cryopreserved (as a neuro or head-only) at Alcor’s facility in Riverside, California in June 1990.2 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 was cared for during approximately 10 days while her VSED was in progress, receiving only some moistening of her lips and mouth from time, and very limited amounts of fluid internally. She bravely toughed it out and accomplished her mission of 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 burden was lightened, to some degree at least, by the fact that her illness (actually lung cancer metastasized to the brain), was legally “terminal.” Thanks to this, hospital personnel were more sympathetic and beneficial to the course that was followed. A slower-acting but still lethal brain malady such as Alzheimer’s is not similarly classed as “terminal” and victims may find it harder to obtain assistance from the medical establishment. Starvation/dehydration is still arguably the best means of hastening one’s death to escape brain impairment or otherwise speed one’s cryopreservation.

States in which assisted suicide is legal (currently Oregon, Washington, and Montana) allow that a physician can prescribe lethal medication which then must be self-administered by the patient (rather than administered by another party). To date no cryonicist has attempted to use the assisted suicide law of any of these jurisdictions to hasten deanimation. It would arguably be very risky to do so, in view of the unconventional nature of cryonics, which might invite bureaucratic interference.

VSED: The Best Option for Now

In balance it appears that voluntary stopping of eating and drinking is the best of currently available means to hasten one’s deanimation without inviting autopsy or legal recriminations. The following summary of VSED is adapted, with kind permission, from a review by David Brandt-Erichsen of the book, A Hastened Death by Self-Denial of Food and Drink, by Boudewijn Chabot, MD, PhD (Amsterdam, 2008, 64 pages; available from the Hemlock Society, email to fayegirsh@msn.com).3 The 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.

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.

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. 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 ways to hasten one’s deanimation so cryopreservation can halt the destructive process. At present the safest such strategy appears to be voluntary stopping of eating and drinking. Deanimation is hastened in a way that is considered “natural” and does not require autopsy, so that cryoprotective procedures can begin without interference.

The situation of course is far from ideal.  Ideally, cryopreservation would be treated as a medical procedure which could be freely chosen and started at any reasonable time. This appears to be a long way off. Meanwhile we must work together to increase whatever options are feasible. This is a matter that affects us all, since we all have a terminal disorder (aging) which can drastically impair our mental functioning.

References

1 Linda Ganzini, M.D., M.P.H., Elizabeth R. Goy, Ph.D., Lois L. Miller, Ph.D., R.N., Theresa A. Harvath, R.N., Ph.D., Ann Jackson, M.B.A. and Molly A. Delorit, B.A., “Nurses’ Experiences with Hospice Patients Who Refuse Food and Fluids to Hasten Death,” New England Journal of Medicine 2003, 349:359-365 (July 24, 2003), http://www.nejm.org/doi/full/10.1056/NEJMsa035086#articleMethods (accessed 26 Jul 2010).

2 Linda Chamberlain, “Her Blue Eyes Will Sparkle,” Cryonics Dec. 1990, 16, http://www.alcor.org/cryonics/cryonics9012.txt (accessed 22 Apr 2010).

3 http://www.choicesarizona.org/files/Newsletter-2009-1.pdf, 8 (accessed 22 Apr 2010).

My thanks to David Brandt-Erichsen, Hugh Hixon, Cairn Idun, and Ralph Merkle in preparing this article.