Guide – Appendix C – discussion of end-of-life choices

End-of-Life Decision Making for Life Stage Planning

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Awareness of a Complete Range of End-of-Life Care Choices

This chapter provides a summary description of five end-of-life care choices which are legal and are available to terminally ill patients who may choose to relieve their physical distress and hopelessness and bring about a peaceful death.  This “complete range of end-of-life care methods choices” is important reference information even though it may be uncomfortable for some.  Those who wish to create a comprehensive personal end-of-life care plan will appreciate that there may be circumstances where such method choices are essential if they are to fulfill their personal desire for a peaceful and dignified death.
Our goal throughout this book is to provide sufficient information that our reader has a reasonable understanding of “the complete range of end-of-life care choices, which include a range of “humane, self-chosen death methods” or what some call “peaceful self deliverance methods.”  Some of the described methods are choices available only within a medical setting, and depend on:  your illness, your doctor’s comfort, your hospital’s or hospice’s comfort, and your insurance coverage.  Some of these method choices are available both within a medical setting and outside of a medical setting, and some of the method choices are available only outside of a medical setting.
Before we present the “complete range of end-of-life care choices, including brief summary descriptions of peaceful self deliverance (PSD) methods,” we want our readers to know about an important concern of the sponsor of this book, PSDAmerica, Inc. We know that for some readers this information about various voluntary methods to hasten the onset of death will cause discomfort and raise profound questions.  We want you to know that we too had such questions and here is how we resolved to settle them and move forward with this presentation of a complete range of peaceful self deliverance (PSD) methods.
How we select specific “peaceful self deliverance methods”
The editors for PSDAmerica’s publications have developed specific criteria to determine which PSD methods should be discussed. The initial step was that PSDAmerica engaged consultants with credible academic credentials: some with legal training and some with special academic background and research experience in the study of methods of voluntary planned death. Then an archive was compiled of published research for the last twenty years on voluntary death methods, including the most credible research published in academic journals. And lastly, the PSDA editors reviewed the research archive in order to establish a set of criteria to help assure that we were presenting up-to-date reliable information to our readers. We intend to update our research archive in the future based upon new findings published in academic journals. In this way we will determine which new information warrants being added to future editions of our PSDAmerica publications.
The PSDAmerica criteria guide our editorial decisions. In considering whether to describe and discuss a specific method to achieve a peaceful, painless, and dignified death:  our PSDAmerica editors ask for each PSD method
Is it entirely legal?
Is it readily accessible?
Has it demonstrated research-proven effectiveness?
Has it shown field-tested reliability?
Are there significant timing considerations?

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Only PSD methods that substantially meet these criteria are then presented and described to our readers in our PSDAmerica resources.
   An Overview: The Five Peaceful Self Deliverance Methods   and caution about methods with un-acceptable risk
These five Peaceful Self Deliverance (PSD) methods meet our criteria and are described in this chapter. We believe that these PSD method choices will be of interest to many Americans seeking to understand their end-of-life care options. Some PSD methods are available to be administered with medical supervision.  Other of these PSD methods are widely available, but can only be administered outside of medical supervision, and therefore are only for those who are comfortable with such a setting:
“Total Fast” or Voluntarily Refusal of Food/Fluid PSD Method
“Helium Hood Inert-Gas Apparatus” PSD Method
“Compassionate Bedside Guide alternate Helium Hood” PSD Method
“Oregon-Regulated, Medically-Supervised” PSD Method
“Swiss-Regulated, Medically-Supervised” PSD Method
A brief summary of each of these Peaceful Self Deliverance (PSD) methods follows.

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                                  “Total Fast” or Voluntarily Stopping Eating and Drinking (VSED)                                       or Voluntarily Refusal of Food/Fluid PSD Method

The Total Fast offers an accessible and effective PSD method option. There is no special technology involved in the centuries old process of a complete fast or what is called in medical literature either Voluntary Refusal of Food and Fluid (VRFF) or more recently Voluntarily Stopping Eating and Drinking (VSED). The research on this legal PSD method supports the idea that when properly educated and prepared, most persons can physically and psychologically endure the relatively minor discomforts in the first one or two days of a Total Fast. Recognized research by physicians on the effect of a complete fast has shown it to be a reliable and effective method to achieve painless dignified death.
There are certain “general precautions” about a Total Fast which include: consulting your physician about whether to continue prescribed medicines, especially chronic pain medicines in the first few days of the fast; anticipating the need to alleviate dry mouth symptoms or constipation as the fast progresses; arranging for bedcare hygiene for bodily excretions; understanding the expected length of time and physical manifestations as the Total Fast progresses, which include: unconsciousness, possible irregular breathing patterns, and visual signs that death has occurred.
Timing considerations   There are important timing constraints with the Total Fast PSD method: first, providing watchfulness and hygiene while the individual is unconscious; second, maintaining total confidentiality and privacy about the committed choice of the dying individual.  Unconsciousness during a Total Fast can last a very long time: two weeks and sometimes more.  There must be great vigilance to avoid any accidental chatter which could bring unwelcomed and unwarranted interference by some person with religious objections to the dying individual’s choice, and the possible tragic consequence of that interfering person calling 911 emergency responders while the patient is comatose but not yet deceased.
Availability   Total Fast (VRFF) is available with medical supervision, but only to the Hospice-eligible patient within 6 months of death, and only in those Hospices which permit this PSD method.  Total Fast (VRFF) is also available outside medical supervision, but should include family support and very cautious planning to avoid interference from outside parties with religious or other objections to the choice made by the dying person to pursue the Total Fast (VRFF) PSD.

 Helium Hood Inert-Gas Apparatus PSD Method

The Helium Hood Apparatus method offers an accessible and effective PSD method option.  The technology of the Helium Hood PSD method entails the use of a simple apparatus to provide controlled delivery of a tasteless odorless inert gas into an enclosed environment. Components for the Helium apparatus are readily available in retail stores such as Home Depot, Lowes, Walmart and other home services stores; and on the internet from Ebay and Amazon. Instructions on assembly of the Helium apparatus can be found in “how-to” guides on the internet, as well as in this PSDAmerica book, in other PSDA resources.
The physiological effects of the Helium PSD method are easily understood: in a careful set of steps with a properly assembled apparatus, the odorless, colorless inert gas is inhaled in a closed environment; the person inhales deeply a few times; inhaled helium gas displaces oxygen in the blood; in a few seconds (15 to 60) sudden unconsciousness occurs; and subsequent death occurs usually within ten to fifteen minutes.
The research on this legal PSD method and its routine use throughout the United States by one national EOL organization provides support for this proposition: the simple mechanical device can be assembled and operated successfully by most persons who are properly educated about this PSD method.
Timing considerations.  The time issue to prepare for this PSD method should be a minimal consideration. For those with internet access, all apparatus components can be delivered to home in a few days.  If a person has reasonable dexterity and hand strength, he or she can assemble the apparatus in an hour or less.  Researchers recommend that all persons contemplating use of this PSD method should practice the steps with a checklist to insure their familiarity before final actuation of the apparatus.  If witnesses are to be present, time must be spent to advise the witnesses of proper legal boundaries on their actions.
The other obvious timing constraint with Helium Hood PSD method is patience to allow sufficient time for the physical signs that the patient is deceased, with no pulse, and noticeable coolness of the body, and bluishness in the extremities, hands, and fingernails particularly.  Reporting to local authorities while the patient is comatose, but not yet deceased, would create potentially tragic consequences, and place in jeopardy the patient’s desire for a peaceful death.
Availability. The Helium Apparatus PSD method is not available with medical supervision. This PSD method can only be used by those who have the physical capability and the willingness to carefully follow procedures without medical supervision.  It is preferable that there be family support and also that there be cautious planning to avoid interference from outside parties with religious or other objections to the choice made by the dying person to pursue a voluntary death with the Helium Apparatus PSD.

                   Compassionate Bedside Guide alternate Helium PSD Method                                             an alternative adaptation to the standard Helium Hood PSD method

The “Compassionate Bedside Guide alternative” to the standard Helium Hood method has advantages that for some make it worth considering.  The process of reading and learning about “voluntary planned death” can be a difficult challenge for many. It is made even more daunting when you consider that many will be alone when they undertake this learning process. Then add to that, for most who would seriously consider pursuing voluntary planned death to relieve their unendurable physical and emotional distress, there are other obstacles that must be overcome. Most are elderly, most have serious intolerable illness and demeaning debility, many are physically frail, many have age-normal-lessened short-term memory, and many may be so distracted by their personal circumstances that they now have difficulty completing complex tasks of daily living. For such a person, the idea of being completely alone and following specific and exacting procedures to bring about one’s early death might well seem to be an impossible challenge.
It is clear that the availability of a knowledgeable and empathetic resource Guide, someone with special training and experience with others in similar circumstances, can provide great assurance to such an anxious individual who is considering voluntary planned death. These volunteer Guides are available free of charge in all fifty US states. They facilitate understanding with personal dialog. Most importantly, they come to the home of the dying person at the time selected by that person, and they provide comforting and compassionate presence at bedside while the person uses the Helium Hood Apparatus to achieve peaceful painless death.
Timing considerations.  The person must meet medical eligibility and be approved for Guide service, which process will take several weeks. The presence of a trained Guide provides assurance that after actuating the PSD apparatus, an experienced person will be present to know when the patient is clearly deceased, there is no pulse, and noticeable coolness of the body, and bluishness in the extremities, hands and fingernails particularly, before reporting the death event to local authorities.  Witnesses may need to seek advice about proper legal boundaries on their actions after the death.
Important Caution: The non-profit organization Final Exit Network, which provides trained Guides at no cost in its advocacy role to promote end-of-life autonomy, has in the past had isolated instances of legal controversy: having been indicted in several states on charges of “aiding and assisting with a suicide” and with “illegal removal of evidence from the scene of a suspicious death.”  If there are to be witnesses invited by the dying person to be present when this PSD method is used, it should be made clear that they are placing themselves in legal jeopardy if they tamper with or remove the Helium Hood Apparatus in an attempt to disguise the death as being from natural causes.
Availability.  This alternative adaptation of Helium Apparatus PSD method is available only outside medical supervision with a Guide who has received only brief non-medical instruction on simple procedures.  While it is important that those seeking information a complete range of choices be made aware of this choice, it is essential, we stress again, to respect the legal boundaries mentioned and to avoid interference from outside parties with religious or other objections to the choice made by the dying person to pursue this adaptation of Helium PSD method.

                        “Oregon-Regulated, Medically-Supervised” PSD Method                                                    (five other states offer this choice but Oregon has the longest history)

The “Physician Aided Death PSD method” legally available in Oregon has advantages that for some make it worth considering though for many access will be a difficult barrier.  Many Americans, who are terminally ill with less than six months to live, have no voluntary planned death option with medical supervision available in their local community. If they live in any of the other forty-four states in the US other than Oregon, Washington, Vermont, California (2016), Colorado (2017), and Washington DC (2017) their only option may be Hospice care, which can be highly variable.
For instance, some religiously-affiliated hospice programs may not support end-of-life care interventions that are accepted medical practice in standard secular Hospices. Patients may fear that their only available Hospice will do no more than relieve pain and discomfort as their disease disfigures and incapacitates them, leaving them to suffer indignity for long duration, sometimes for months.  Patients’ concerns include that they will only have the choice between unrelenting pain or semi-consciousness; and, that ultimately they may be incapacitated and be dependent on others for every physical need; and, that in their last days, weeks, or months they may simply become helpless and completely unable to experience a life they consider to be worth living.
Some other individuals may have reasons to be fearful of voluntary planned death methods outside of medical supervision. Perhaps they are afraid of the first few days and possible discomfort with the Total Fast PSD method. Perhaps they lack the confidence or manual dexterity to assemble or operate the Helium Hood Apparatus PSD method. Many of these Americans would simply feel greater comfort seeking help from a doctor who understands their medical and psychological history and supports their right to choose this type of dying process.
In late 2014 there was national news that gave hope to some who asked: if Physician Aided Death as a PSD option is not permitted in my state, then why not leave my state and migrate to one of the US states that offers legal Physician Aided Death?   It is important not to underestimate the level of personal upheaval, inconvenience, stress, expense and uncertainty involved in moving to a new state to establish residency for this sole purpose.  Most will need a support network of close family or partners to make this temporary relocation as well.  The required advance planning steps, which may take several weeks to a few months, can present a nearly insurmountable obstacle if the dying individual’s physical and psychological condition is fragile and unstable.
Timing considerations Timing constraints with this PSD method have to do with the advance planning and time-delays of relocating to the state of Oregon or another state with legal PAD as a PSD method.  Then once the individual has established residency in Oregon, that person must meet medical eligibility criteria and find an Oregon physician willing to assist them.
While this is a formidable and unpleasant barrier to access, still there are some terminally ill individuals for whom these difficulties are outweighed by the prospect of having direct help from a physician to achieve a peaceful death at a time of their choosing. The PSD method itself is simple, convenient and timely.  At the time chosen by the individual, he or she simply swallows the physician prescribed lethal medicine with a glass of water.
Availability  This Physician Aided Death (PAD) PSD method is available with medical supervision, but only in the five US states where it is legal as of August 2016 (Oregon, Washington, Vermont, Montana, California).

“Swiss-Regulated, Medically-Supervised” PSD Method

The “Swiss-Regulated, Medically-Supervised” PSD method has advantages that for some make it worth considering, though for many access will be a difficult barrier. Many Americans seeking a voluntary planned death option will have no alternatives with medical supervision available in any of the fifty US states. This applies to virtually all Americans who have a predicted time to natural death of greater than six months, which is too long a duration to qualify for Medicare hospice services, and also too long a duration in even the six US states with legal Physician Assisted Death.
For these Americans there is an answer.  There are two Swiss organizations that provide end-of-life care services to Swiss citizens, to Americans and those of other countries. These non-profit groups are licensed and regulated by the Swiss government; they have operated for fifteen years; they have helped well over 1000 people achieve peaceful, painless, dignified death. This PSD option is administered by medically-trained personnel with oversight by licensed physicians. This PSD method is simple and convenient for the patient, who simply swallows the physician-prescribed lethal medicine with a glass of water, becomes unconscious, and in a few minutes is deceased.
It is important not to underestimate the level of personal upheaval, inconvenience, stress, considerable expense and uncertainty involved in traveling to a different country for the sole purpose of achieving a desired mode of self-administered dying. Most will need a support network of close family or partners to make this journey as well.  The required advance planning steps, which may take weeks to a more than a month, can present a nearly insurmountable obstacles if the dying individual’s physical and psychological condition is fragile and unstable.
Financial considerations The costs of international travel to Switzerland and clinic fees and food and lodging for as much as three to six weeks will be an obstacle to many as they may exceed $15,000.
Timing considerations Timing constraints with this PSD method have to do with the advance planning and time delays of travel and moderate term lodging while in Switzerland.  The individual must meet the Swiss statute eligibility criteria, and make two appointments with a Swiss physician willing to evaluate them and then to assist them.
While this is a formidable, unpleasant and very expensive barrier to access – still there are some terminally ill individuals for whom these difficulties are outweighed by the prospect of having direct help from a physician to achieve a peaceful death at a time of their choosing. The PSD method itself is simple, convenient and timely.  At the time chosen by the individual, he or she simply swallows the physician-prescribed lethal medicine with a glass of water.
Availability This Swiss-Regulated, Physician-Administered PSD method is available with medical supervision, but only to those Americans with financial resources and the determination to undertake trans-Atlantic travel, and to patiently comply with steps set forth in Swiss law.

Self Deliverance Exit Methods with “Unacceptable Risk”

PSDAmerica’s editors have knowingly rejected certain self deliverance methods from being discussed in our education resources because they do not meet our PSDAmerica criteria.  PSDAmerica’s editors are sensitive to the special vulnerability of the primary group within the American public most likely to need Peaceful Self Deliverance relief: those who are at a very anxious moment in their lives, almost all of whom are subject to significant pain, intolerable discomfort, and debility, suffer impairments of advanced age, and for many feel a pervasive hopelessness about the future. Such vulnerable individuals should not be left to sort out for themselves the legalities and reliabilities of PSD method choices. PSDAmerica’s official position is this: fellow Americans who are seeking information on peaceful means to hasten onset of death in order to end their intolerable suffering should NOT be given information on method specifics without any effort to distinguish their legality, their availability, their proven effectiveness, and their research-demonstrated reliability.
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