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The Leaving Life Questionnaire |
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A Guide to Exploring Your Ideas and Feelings |
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about End-of-life Issues and Actions |
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Version 1.0 Spring 2003 |
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GENERAL INTRODUCTION |
| On this page: |
| Introductory Comments Personal introduction Social change |
| Challenging your instincts LLQ purposes Making your way through the LLQ |
| Why are you here? You may be curious about the LLQ because you are concerned about the end of your own life or that of someone you care about. Perhaps something has reminded you that you are mortal: a natural disaster, terrorist threats, the death of someone close, a serious health problem, or seeing your age mirrored in the eyes of someone who hasn't seen you for a long time. Possibly you have been affected by the increasing number of books, articles, and TV shows on the experience of dying. You begin thinking, "What will it be like for me?" |
| You may have observed that many very old people endure restrictions, inconveniences or a level of discomfort that make you wonder, "How do they cope?" or "Will I be able to adjust?" (If you are very old person reading this, you will of course have you own answers to these questions.) |
| You may have read that, in spite of improvements in pain medication and a willingness to treat physical and emotional pain more aggressively, no one can guarantee that your exit from life will be free from suffering. |
| You may want to have more control over what happens at the end of your life, or the reassurance that those you trust to be in charge of your well-being will act according to your needs. |
| The purpose of the LLQ is start you thinking about the experience of
leaving life and about the possibility, at some time, of making a conscious
decision to do so. It does this by helping you to explore your values, ideas
and feelings about death and dying ("D&D").
It is not a "how to" guide to taking your own life, nor does it suggest complete solutions to every problem. |
| The questions cover a lot of territory: from how your reactions to D&D developed, to what you think your quality of life will be when you are Very Old or if become seriously ill, to factors that could affect your decision to leave life voluntarily. You are also invited to consider the personal and social consequences that might follow from the use of available technology to make a painless exit from life more accessible. |
| Exploring D&D requires a willingness to look at questions most people consider closed. You must overcome the fears that arise from our powerful life instinct. If you live in the USA or in other wealthy countries, you may have to overcome cultural tendencies to keep the realities of D&D out of sight and mind. |
| Changing attitudes and behavior related to D&D will take a long time. Reading and responding to LLQ is a way to start a process that could take generations for society and many years for you. |
| If you can overcome some of these obstacles, you may find that you can approach D&D as you do other challenging problems in your life. Making some headway isn't easy, but maybe it isn't as impossible at it seems at first. |
A personal introduction |
| I am a retired clinical psychologist. This means that I am used to describing behavior in terms of needs, emotional tendencies and cognitive capabilities. |
| Psychologists see values as central to understanding behavior, and helping you to clarify yours is one of the purposes of the LLQ. |
| Values drive our behavior in ways that we do not always acknowledge. Bringing our behavior in line with our values --practicing what we preach -- reduces guilt or shame and may result in our contributing more to society.. Clarifying our values can also help us to understand the basis for our agreement or disagreement with others. . |
| You will see both these perspectives -- talking about needs and emotions,
and clarifying values -- in the content and style of the
questions. My interest in this area was stimulated by being a hospice patient-care volunteer for about five years. I was vividly reminded that I may well have to make end-of-life decisions for myself or for people I love. Possibly, you will, too. I am not comfortable with the way things are now, so I want to take a hard look at possibilities for change. |
| I also spent some time in nursing homes
as a volunteer and as a musician. I noticed that there were a lot of people
who seemed to be suffering near the end of life with little hope of
improvement. I wondered if having more options for treatment or for
other ways of ending their suffering might be welcome, and on the whole, a
good thing. I became a prisoner of empathy.
There are many questions in the LLQ that deal with controversial issues. In these, I try to take a balanced approach, offering you a chance to consider a variety of responses according to your own experiences and values. In other words, I do not see myself as a salesman for a course of action that I have already decided is best for you. |
A note about social change |
| As you respond to questions that ask about social change, keep in mind that just because you or I want something for ourselves, this does not mean that it should become public policy, at least not right away. Sometimes it is best to keep an ultimately beneficial activity hidden from opponents who would crush discussion and responsible decision-making. This means keeping it temporarily inaccessible to all but those who are the most persistent or knowledgeable. Doing so may mean that the activity is unlawful and the law, selectively enforced. This leads to unfairness, but it also keeps the number of people engaging in the activity down until society figures out how to deal with abuses and other problems. |
| You will probably find some of the ideas implied by the questions that follow are emotionally unsettling. I certainly do. Who can doubt that the fear of D&D is a strong instinct. We all sense its power in ourselves. Our feelings are underlined by evolutionary theory, which asserts that those who fear D&D are more likely to live to reproduce, thereby passing on this gene to more and more descendants in each generation. |
| But being instinctually motivated is not a sufficient reason to act according to that instinct if acting contrary to it will reduce suffering or provide other benefits. |
There are many examples of instincts that are no longer adaptive or that are not adaptive in certain situations. Third-world mothers react with horror to their children being vaccinated. Cutting up bodies to perform autopsies met with resistance when first introduced. The health problems created by our out-of-date fight-or-flight instinct has been widely publicized in discussions of stress. More to the point, people who indulge in extreme sports set aside fears of D&D because they decide the thrill is worth the risk. So do people who enter dangerous professions for the money, status, or the chance to live out animal impulses to fight and kill. Every day, the rest of us challenge the instincts bred into us by trying to channel our sexual, aggressive and hoarding impulses. Through the years, explorers have set off walking, riding, sailing or flying into the unknown, putting aside their fears of D&D. Perhaps they believed that the possible gain was worth the risk, or maybe they were impelled by a drive or instinct to master, discover or understand everything. Maybe we should follow their example. |
| The purposes of the LLQ |
| The purposes of the LLQ are: |
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... to help you to begin to get used to thinking about death and dying ("D&D") or "leaving life" as you do other important problems or life stages. The idea that D&D is a natural event with problems that can be partially solved through acceptance or action is prevalent in many other cultures and is beginning to seep into ours. ... to help you to examine and evaluate your thoughts and feelings about leaving life voluntarily and involuntarily, and about suffering, quality of life and other related issues. ... to encourage you to consider planning your exit according to your values and wishes, and to think about how to carry out your plans. ... to give you a basis for helping others to explore their feelings and ideas about D&D. |
| I would emphasize again that the ideas and images evoked in what follows
conflict with the need to preserve life, and that this need has very
strong evolutionary, genetic
and cultural underpinnings. So, large-scale social change -- if this turns out
to be what is best -- can take a generation or more. For you and for me, I am
thinking in terms of very small steps towards awareness and action.
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Making your way through the LLQ The LLQ offers you a chance to clarify your feelings and ideas about the last stages of life and beyond. An important goal is help you to think about these unsettling topics without your becoming so uncomfortable that you give up. To do this, the sections proceed from less- to more anxiety-provoking. The idea is for you to go slowly, gradually desensitizing yourself to the images the questions evoke. If you become uncomfortable, you can stop. You may want to try again after a period of time or reflection; or, as explained below, you may decide that avoiding the whole area is the best course of action. Please note: If at any point, you decide you do not want to continue, you can let me know why by filling out the brief Your reactions to the LLQ form and emailing it to me. I would also encourage you to look over the Prelude: Choosing not to think about or plan for D&D and 12:Moving away from D&D: Returning to life as usual. An obstacle to exploring any complex topic is being weighed down by detail. So, I would urge you to consider the LLQ as a trip, during which you stop and explore places that interest you, rather than as an itinerary that you grit your teeth and plough through. You are not expected to be interested in or respond to every question. You should feel free to skip ahead or to switch to the Short Version. A primary purpose of the questions is give you something to think about, rather than to have you come up with a complete or final answer. Also, reading the multiple-choice responses can raise your awareness of how others might think about D&D. The Full and Brief Versions of the LLQ are quite long -- 100+ questions -- so you are not expected to get through either of them in one sitting. In fact, although the LLQ is called a questionnaire, it is really more like a small interactive book. Ideas or situations are presented, you are asked what your think of them, or whether they apply to you. Many questions offer you a chance to add your own ideas or experiences to the content of the LLQ. To help you sort things out, there is a Notepad for you to jot down things that you want to remember or do. You can also use the Notepad to keep your place. Keep in mind that your responses are a snapshot that reflects you and your world as they are today. Both will change. People in medicine, religion, ethics and politics are working on end of life issues. You yourself will change as you are exposed to these developments and as you get older. So, even if you leave the LLQ now, keep the idea of exploring this area in the back of your mind. Almost all of the questions are multiple choice in order to help you formulate your own ideas, and to show you how others might respond. There is a place to fill in your own response if none of the choices fit. The usual keys for navigating through a form apply: Press Tab to go to the next field where you can enter a response; Shift Tab takes you back to the previous place. You can mark a little box or circle by clicking it with the mouse or by pressing the Space bar. |
Abbreviations: LLQ = Leaving Life Questionnaire D&D = death and dying
QOL=quality of life PID=persistent intolerable discomfort or a person in that condition