WHEN WE DIE: How to avoid premature dying and prolonged dying Question Title * 1. A woman we can call “Tanya” received the diagnosis of lung cancer and a prognosis of probably fewer than six months to live. After two months of intense medical treatment, Tanya’s pain and suffering became unbearable. She contracted pneumonia but refused antibiotic treatment. She decided to forgo the last four months of her life because they would be so miserable. In your opinion, was Tanya’s dying premature, timely, or prolonged? Premature Timely Prolonged Question Title * 2. “Patrick” received a diagnosis of Alzheimer's disease and this prognosis: it will progress to the stage of Advanced Dementia in 3 to 5 years. A religious person, Patrick did not attempt to control WHEN he will die. While his next 3 years were different, they still were reasonably good. But his 4th to 8th year after diagnosis were terrible. Patrick lost the ability to talk from Advanced Dementia so he could not verbalize complaints. Also, his behavior was not typical for pain. For these reasons, his doctor failed to recognize his suffering. The result was that Patrick’s pain and suffering were untreated for 4 years. In your opinion, was Patrick’s dying premature, timely, or prolonged? Premature Timely Prolonged Question Title * 3. “Petula” received the same diagnosis and prognosis as Patrick: Alzheimer’s that will reach the advanced stage in 3 to 5 years. This is how Petula expressed her greatest fear: “I don’t want to be like the frog in a pot of water that is slowly getting warmer. I must end my life now—while my mind is still ‘sound.’ Otherwise I will BECOME TRAPPED in the stage of Advanced Dementia, which is a fate that I consider ‘worse than death.’” Petula thus died by Physician-Assisted Dying. She decided to forgo 3 years of living with reasonable quality. In your opinion, was Petula’s dying premature, timely, or prolonged? Premature Timely Prolonged Question Title * 4. Assume Petula died when she did--instead of choosing another, legal option to prevent her lingering in Advanced Dementia--only because she did NOT know this option was available. If this were the case, was Petula's dying premature, timely, or prolonged? Premature Timely Prolonged Question Title * 5. So, as the video clip showed: at 42, Andrew states he does not want to live the life that he has now. His “Chief Complaint” is that for most mornings, he must fall out of bed and crawl to other rooms. Based on what you do know: Yes No Is Andrew’s current suffering unbearable? Is Andrew’s current suffering unbearable? Yes Is Andrew’s current suffering unbearable? No Is the only way to reduce Andrew's suffering to actively hasten his dying now? Is the only way to reduce Andrew's suffering to actively hasten his dying now? Yes Is the only way to reduce Andrew's suffering to actively hasten his dying now? No Question Title * 6. Suppose a nurse were to visit Andrew once or twice a day; he could attend group and individual psychological counseling; and he could get a prescription of an anti-depressant medication if needed… Suppose these interventions did reduce Andrew’s suffering enough so he would decide to enjoy living a few more years? In that case... Yes No Was Andrew’s current suffering unbearable? Was Andrew’s current suffering unbearable? Yes Was Andrew’s current suffering unbearable? No Was the only way to reduce Andrew's suffering to hasten his dying now? Was the only way to reduce Andrew's suffering to hasten his dying now? Yes Was the only way to reduce Andrew's suffering to hasten his dying now? No Question Title * 7. Andrew used the word “ironic” to describe, “I’ve absolutely fallen in love with Zurich.” Is it possible that his surprise is due to suffering from a depression that did NOT let him enjoy living? Yes No Question Title * 8. After Rob Wilkins, Sir Terry Pratchett’s assistant, remarked how much life is left in Andrew, he asked, “Why now?” and Andrew answered: “A genuine fear about the practicalities… If I don’t do it soon, I will not be able to do it at all.” Does this remind you of “the frog in the pot”? Yes No Question Title * 9. Andrew also said, “It was difficult enough to get this far”… It is possible Andrew is referring to the challenging ordeal of traveling to Zurich, and he fears that when his MS gets worse, it will be impossible for him to travel... so he will be stuck? Yes No Question Title * 10. Andrew died by Physician-Assisted Dying, at the Dignitas facility in Zurich, in Dec. 2010.Assume Andrew did NOT know there is another, legal end-of-life option that does not require him to travel to Zurich…Based on what you do know and this assumption, was Andrew’s dying premature? Yes No Question Title * 11. So, as the video clip showed: Peter can still enjoy much of the good life, but he needs a bit of help to get around. His "Chief Complaint" is that two or three weeks ago, he "did fall over...and found he could not even get off the floor."Based on what you do know: Yes No Is Peter’s current suffering unbearable? Is Peter’s current suffering unbearable? Yes Is Peter’s current suffering unbearable? No Is the only way to reduce Peter's suffering to actively hasten his dying now? Is the only way to reduce Peter's suffering to actively hasten his dying now? Yes Is the only way to reduce Peter's suffering to actively hasten his dying now? No Question Title * 12. The physician’s task is to make sure Peter’s judgment is sound. She asked him if he thought he was depressed during the course of this illness.Did you think the physician’s evaluation of Peter’s possible depression was adequate? Yes No Question Title * 13. As Peter drinks his last cup of tea at the Dignitas facility, their protocol requires asking him this question several times:"Are you sure you want to die today?"This is Peter's answer: "Yes. I feel I have very little choice really in the grand design."Do you think Peter knew about the other, legal end-of-life option to avoid prolonged dying? Yes No Question Title * 14. The physician who evaluated Peter at Dignitas said, “You are the only person who can decide when is the right moment (to die).”What do you think? Do physicians have a professional obligation to inform patients like Peter about such topics as: Yes No …The likely course of their disease from this point on? …The likely course of their disease from this point on? Yes …The likely course of their disease from this point on? No …How other patients cope as the disease progresses? …How other patients cope as the disease progresses? Yes …How other patients cope as the disease progresses? No …How many months it might be for Peter before he reaches the point where most patients consider suffering unbearable? …How many months it might be for Peter before he reaches the point where most patients consider suffering unbearable? Yes …How many months it might be for Peter before he reaches the point where most patients consider suffering unbearable? No …About another, legal end-of-life option that can avoid a prolonged dying and that does NOT require him to travel to Zurich and thus put his wife at legal risk? …About another, legal end-of-life option that can avoid a prolonged dying and that does NOT require him to travel to Zurich and thus put his wife at legal risk? Yes …About another, legal end-of-life option that can avoid a prolonged dying and that does NOT require him to travel to Zurich and thus put his wife at legal risk? No Question Title * 15. Suppose the physician did inform Peter about these four points. Yes No Might this information have reduced Peter’s worry that the authorities would charge his wife with a crime? Might this information have reduced Peter’s worry that the authorities would charge his wife with a crime? Yes Might this information have reduced Peter’s worry that the authorities would charge his wife with a crime? No Might Peter have decided to die in the comfort of his own home in England? Might Peter have decided to die in the comfort of his own home in England? Yes Might Peter have decided to die in the comfort of his own home in England? No Might Peter have then died NOT in Dec. 2010, but several months or even years later? Might Peter have then died NOT in Dec. 2010, but several months or even years later? Yes Might Peter have then died NOT in Dec. 2010, but several months or even years later? No In that case, was Peter's dying in Dec. 2010 premature? In that case, was Peter's dying in Dec. 2010 premature? Yes In that case, was Peter's dying in Dec. 2010 premature? No Question Title * 16. Sir Terry Pratchett told the doctor who evaluates patients for Dignitas that his mind was "like steel," and "supposing somebody says...I’m not in a position to make a decision-- I nevertheless wish to take whatever the killing draft [poison] is." Let me restate the doctor's two reasons why she could not assist the dying of patients who suffer from Advanced Dementia: A) The patient cannot understand drinking the poison will cause his death so he cannot give his informed consent. B) If the patient cannot take the poison himself, the doctor would NOT be willing to put the poison directly into his body. Yes No Do you agree with the physician's two reasons for refusing to help an Advanced Dementia patient die? Do you agree with the physician's two reasons for refusing to help an Advanced Dementia patient die? Yes Do you agree with the physician's two reasons for refusing to help an Advanced Dementia patient die? No Does this make sense to you: The physician IS willing to help a person in an early stage of dementia even though there is much life left and suffering is bearable...but is NOT willing when the patient is terminally ill and suffering is unbearable? Does this make sense to you: The physician IS willing to help a person in an early stage of dementia even though there is much life left and suffering is bearable...but is NOT willing when the patient is terminally ill and suffering is unbearable? Yes Does this make sense to you: The physician IS willing to help a person in an early stage of dementia even though there is much life left and suffering is bearable...but is NOT willing when the patient is terminally ill and suffering is unbearable? No Question Title * 17. Sir Terry Pratchett learned Dignitas will NOT help him when he would prefer to die… when he suffers from Advanced Dementia so he concludes: "The problem with Alzheimer’s is that by the time you are ready for an assisted death you may not be able to speak. So the Alzheimer’s patient must choose to die earlier than would otherwise be necessary." Yes No Do you agree with Sir Terry Pratchett’s conclusion (it is necessary for Alzheimer’s patients to die earlier than would otherwise be necessary)? Do you agree with Sir Terry Pratchett’s conclusion (it is necessary for Alzheimer’s patients to die earlier than would otherwise be necessary)? Yes Do you agree with Sir Terry Pratchett’s conclusion (it is necessary for Alzheimer’s patients to die earlier than would otherwise be necessary)? No Do you think Sir Terry Pratchett knew about the other, legal end-of-life option that can avoid lingering in Advanced Dementia? Do you think Sir Terry Pratchett knew about the other, legal end-of-life option that can avoid lingering in Advanced Dementia? Yes Do you think Sir Terry Pratchett knew about the other, legal end-of-life option that can avoid lingering in Advanced Dementia? No If you DID know that this other, legal option could prevent prolonged dying, would you still consider it necessary for Alzheimer’s patients to "choose to die earlier than would otherwise be necessary"? If you DID know that this other, legal option could prevent prolonged dying, would you still consider it necessary for Alzheimer’s patients to "choose to die earlier than would otherwise be necessary"? Yes If you DID know that this other, legal option could prevent prolonged dying, would you still consider it necessary for Alzheimer’s patients to "choose to die earlier than would otherwise be necessary"? No Question Title * 18. To indicate which of these two questions is more important, first think about one question at a time by using the rating scale below. Not important at all Slightly important Of neutral importance Somewhat important Very Important Extremely important A) “Is it right, moral, ethical, professional, or consistent with religious teachings… for a physician to assist the dying of a terminally ill patient whose suffering has become unbearable?” A) “Is it right, moral, ethical, professional, or consistent with religious teachings… for a physician to assist the dying of a terminally ill patient whose suffering has become unbearable?” Not important at all A) “Is it right, moral, ethical, professional, or consistent with religious teachings… for a physician to assist the dying of a terminally ill patient whose suffering has become unbearable?” Slightly important A) “Is it right, moral, ethical, professional, or consistent with religious teachings… for a physician to assist the dying of a terminally ill patient whose suffering has become unbearable?” Of neutral importance A) “Is it right, moral, ethical, professional, or consistent with religious teachings… for a physician to assist the dying of a terminally ill patient whose suffering has become unbearable?” Somewhat important A) “Is it right, moral, ethical, professional, or consistent with religious teachings… for a physician to assist the dying of a terminally ill patient whose suffering has become unbearable?” Very Important A) “Is it right, moral, ethical, professional, or consistent with religious teachings… for a physician to assist the dying of a terminally ill patient whose suffering has become unbearable?” Extremely important B) “Regardless of how someone died, was the dying timely?” B) “Regardless of how someone died, was the dying timely?” Not important at all B) “Regardless of how someone died, was the dying timely?” Slightly important B) “Regardless of how someone died, was the dying timely?” Of neutral importance B) “Regardless of how someone died, was the dying timely?” Somewhat important B) “Regardless of how someone died, was the dying timely?” Very Important B) “Regardless of how someone died, was the dying timely?” Extremely important Question Title * 19. Based on your ratings, then which of these two questions do you consider more important: Question (A) about being RIGHT is more important. Question (B) about being TIMELY is more important. Question Title * 20. The total number of patients who have died by Physician-Assisted Dying--either by traveling to Dignitas or as residents of Oregon and Washington--is fewer than 2000. Yet world-wide, tens of millions of patients have chronic, progressive illnesses such as MS, ALS, and especially dementia, including Parkinson's/Lewy Body dementia, multi-infarct dementia, and several others--in addition to Alzheimer's dementia... which will increase three-fold in some countries, by 2050.Most people do not know how to control their dying so it can occur timely; that is WHEN they WANT instead of WHEN they CAN. Yet the legal option for a TIMELY DYING can prevent premature dying and honor the "sanctity of life" (whether you prefer to define this in religious or in secular terms). A timely dying can also avoid a prolonged dying, and years of great individual suffering, including unrecognized and untreated pain. Many people feel strongly about not wanting to be a prolonged burden to their loved ones who must sacrifice to provide them life-sustaining treatment--especially after their dementia has caused them to lose the ability to recognize their loved ones. Who should be informed about Natural Dying and the “ironclad strategy”? Yes No Patients who have a high risk for getting dementia? Patients who have a high risk for getting dementia? Yes Patients who have a high risk for getting dementia? No Anyone who is about to create a Living Will? Anyone who is about to create a Living Will? Yes Anyone who is about to create a Living Will? No Everyone, since one out of three people over 65 will die with dementia? Everyone, since one out of three people over 65 will die with dementia? Yes Everyone, since one out of three people over 65 will die with dementia? No Question Title * 21. When did you complete this survey? While I was viewing the video. After I finished viewing the video. Question Title * 22. If you have any comments, or suggestions, please write them in the box below.You can also tell us about yourself. Send in your story, for example, or write in your contact information if you would like further information about the non-profit organization, Caring Advocates. You can also e-mail or phone us, directly, as our contact information is below. Recommended resources: 1. A transcript of the entire video and a clinical definition of Premature Dying are at: www.CaringAdvocates.org/videos.php.2. The books, "Peaceful Transitions: Plan Now, Die Later—Ironclad Strategy," and its companion book, "Peaceful Transitions: Stories of Success and Compassion," are available from Caring Advocates, Amazon.com, Barnes and Noble, etc. in a variety of formats; 3. See also the websites: www.CaringAdvocates.org and www.MyWayCards.org. 4. You can view the full, one-hour video, "Choosing to Die," by Sir Terry Pratchett at:http://topdocumentaryfilms.com/terry‐pratchett‐choosing‐to‐die/ or http://www.youtube.com/watch?v=_NUa0SyyyMg or search YouTube for: Terry Pratchett, Choosing to Die. The "Plan Now, Die Later" series of videos 1. A Living Will for Alzheimer's Dementia: it’s easy and effective" (This is the 9-minute companion video to this video:)2. WHEN WE DIE: How to avoid premature dying and prolonged dying.3. Want Natural Dying for Advanced Alzheimer's? How to overcome the challenges.4. How to sort My Way Cards for a Natural Dying--Living Will.5. To Avoid a Prolonged Dying: Fasting is legal and can be comfortable.6. At the Bedside of a Peaceful Transition.7. MyLastWishes.org is part of a complete solution that makes it easy and effective for others to learn what treatments you DO or do NOT want.All are on the website, www.caringadvocates.org/videos/php. Most can also be seen on YouTube.com.If you want to buy or to rent DVDs to show to an audience, contact us: info@caringadvocates.comDr. Stanley Terman's career strives to maximize pleasure and to reduce pain and suffering at the end of life. Here is his contact information: Stanley A. Terman, PhD, MDBoard Certified in PsychiatryMedical Director and CEO of Caring Advocatesinfo@CaringAsvocates.org800 647 3223 or 760 431 2233FAX: 888 767 6322SKYPE: stan_termanUK direct phone: 44 20 8123 7106Australia direct phone: 61 03 9016 4284 Done