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APPENDICES

(Link to) The Very Old Persons Bill of Rights

(Link to) A List of Related Web Sites

Notes on Virtual Reality in the last stages of life

Other D&D questionnaires

Table of contents for a proposed book on leaving life

Other measures of Quality of Life

(Link to) A List of My Other Web Sites and Articles

Notes on Virtual Reality in the last stages of life

 Advances in medical technology have made it possible to live a longer but not necessarily a fuller or more pleasurable life.  (For more on this see HL Very Old Age.)

Virtual reality might compensate very well for the loss of mobility that occurs in the last stages of life. It might also be used to make the process of leaving life less disturbing by drawing the subject in to experiences during which he won’t fear leaving (see HL Leaving life without fear? ).

Introduction:

Virtual reality (VR): … consists of experiences or events that are seen and perhaps smelled and felt as ordinary objects that are occupying and moving through three-dimensional space. These events are purposefully created to emulate those to which we are accustomed by figuring out the cues our senses use to identify what is happening, and then producing them using methods that differ from those in the natural world.  Most commonly, the parameters of the objects might be expressed in two-dimensional units such as pixels or in bytes or other units involved in computer simulation talking, moving, and responding holographs.

The participating person’s own sensations may be as though he were moving and doing, when he is observed to be doing neither. Adding sensations of smell or touch add to the apparent reality of the experience.

When trying to develop a definition that specifies the essence of difference between ordinary reality (OR) and VR, you quickly find that there is none – unless you assert that one is made by God and the other is man-made. Instead, you find simply that the difference is quantitative rather than qualitative, although these differences are extreme; for example, the measurements of a pixel and a colored bit of clay. 

So far, dealing with and manipulating ordinary reality has been adaptive; we must do this in order to survive. This will become less so for several reasons:

 >>As productivity increases, and there will be less need for many of us to manipulate our actual environment, so we can spend out time in VR, if we want.

 >>As the population increases, reducing the amount that people move around by immersing people in VR may help save the environment from wear-and-tear and avoid the effects of overcrowding.

>> The use of VR is a less costly way to train or test in areas such as surgery and flight training where a mistake can be costly.

Definitions

A Very Old Person (VOP) is a person who is no longer mobile and who spends most of his energy dealing with physical problems

A TID is a person for whom life is terminally intolerably unpleasant.

Leaving life is a euphemism for D&D, which is a euphemism for words we don’t like to hear. Using these terms makes it easier to think about these experiences and become involved in problem-solving, all in the service of decreasing suffering.

Techniques

Think about how the following could be a part of the last stages of life or of the process of leaving life:

>>The use of recreational or other medication with any of the experiences below. Society must give permission and encouragement for people in the last stages of life to accept this kind of vacation. 

>>VR communities similar to Las Vegas or theme parks: Places where VOP’s or TID’s can live and where their discomfort and immobility will be overwhelmed by diverting stimulation. There will be a wide range of themes to suit different needs, such as:  natural environments of all kinds, made-to-order settings -- athletic, military, religious – in which the person feels he or she is involved.  

>>The nursing home Imax Room: Immobility need not prevent a resident from having a rich daily life.

>>Holographs/ the holograph family album: Persons who are no longer physically exist or for some other reason cannot visit can appear and interact as though they were. Scenes from the past can be reenacted.

>>Electric Brain Stimulation/embedded computer chip: For micromanagement of images and pleasure. 

>>Brainwashing, religion and advertising techniques: ...could help the VOP or TID to accept leaving life once he or she has decided to do so. 

VR can also be used to make voluntarily leaving life easier by depicting the kind of scene in which a the person is not afraid to leave; for example, a battle scene, an auto or other race, a scene showing Heaven.

These are just a few possibilities. Of course not everyone wants the last stages of their lives to be any different than earlier ones, and they want to fully experience the suffering of these last stages. Doing so makes them feel fully alive and engaged; it gives them something to struggle against; and, refusing to complain in the face of pain and impending departure is something to be proud of.

OTHER D&D QUESTIONNAIRES

[From the website for the Reflections on Death Questionnaire:]

"The Reflections on Death Questionnaire by Jerral Sapienza of the Bardo of Death Studies is a questionnaire on Death & Dying, and on your reflections on the process, relationships, lessons and events associated with the death of a friend or loved one. Compiling folks' answers since 1995 here, we've had thousands of visitors a month coming by to look at these resources, and several hundred a month who offer their own reflections and fill out the questionnaire to further contribute to the archival resources available here.

The idea of the questionnaire is to help you see Death as Teacher instead of merely as something to dread or suffer through. The more you are able to glean from your experiences with someone's death process, the more likely you will be able to feel more comfortable with the Big Picture view of Death & Dying; Life & Living and how it all weaves together.     Sharing of ourselves and our experiences can be of great comfort to others who also may be going through some of these same difficult moments on a solitary, and at times very dark, path.     Thousands of people have taken this survey, and their results (if they've' specified it's okay to share) are posted here, too, for people such as yourself to browse though and learn from." 

www.bardo.org/~bardo/LHPsychQ.html

 ________________________________________________________________________

... adapted from the Vermont Ethics Network.

One way to approach the kinds of choices involved with end-of-life care is to consider the questions on a values history questionnaire. These are not questions that you may have seen on a living will. Your answers will not be simple "yes's" or "no's." While this questionnaire may look complicated, it can help you to talk about your wishes with someone who may have to make decisions for you when you cannot. Filling out a questionnaire like this will help you think about how you hope things will be. Your answers will also be a useful way to get started talking with your family.

 June 15, 2000 NEW YORK, NY (Reuters Health) - A simple questionnaire called the "Schedule of Attitudes toward Hastened Death" (SAHD) could help reveal dying patients feelings.  The questionnaire is designed as a research tool to measure the patients view of death and their end of life care.  Dr. Barry Rosenfeld has published his questionnaire and findings in the June 15th issue of Cancer.  

01.24 End of Life Issues in Seriously Ill Patients

01.24.01 The Schedule of Attitudes Toward Hastened Death (SAHD)

Overview:

The Schedule of Attitudes toward Hastened Death (SAHD) is a self-reporting questionnaire for a seriously ill patient with a terminal disease which measures the patient's desire for death.

Questions with responses True or False:

(1) I feel confident that I will be able to cope with the emotional stress of my illness.

(2) I expect to suffer a great deal from emotional problems in the future because of my illness.

(3) My illness has drained me so much that I do not want to go on living.

(4) I am seriously considering asking my doctor for help in ending my life.

(5) Unless my illness improves I will consider taking steps to end my life.

(6) Dying seems like the best way to relieve the pain and discomfort my illness causes.

(7) Despite my illness my life still has purpose and meaning.

(8) I am careless about my treatment because I want to let the disease run its course.

(9) I want to continue living no matter how much pain or suffering my disease causes.

(10) I hope my disease will progress rapidly because I would prefer to die rather than continue living with this illness.

(11) I have stopped treatment for my illness because I would prefer to let the disease run its course.

(12) I enjoy my present life even with my illness and would not consider ending it.

(13) Because my illness cannot be cured I would prefer to die sooner rather than later.

(14) Dying seems like the best way to relieve the emotional suffering my illness causes.

(15) Doctors will be able to relieve most of the discomfort my illness causes.

(16) Because of my illness the idea of dying seems comforting.

(17) I expect to suffer a great deal from physical problems in the future because of my illness.

(18) I plan to end my own life when my illness becomes too much to bear.

(19) I am aggressively pursuing all possible treatments because I'll do anything possible to continue living.

(20) I am able to cope with the symptoms of my illness and have no thoughts of ending my life.

Scoring:

• True indicates desire for life False desire for death: 1 7 9 12 15 19 20

• True indicates desire for death False a desire for life: 2 3 4 5 6 8 10 11 13 14 16 17 18

SAHD score =

= SUM(points for all 20 questions)

Interpretation:

• minimum score: 0

• maximum score: 20

• The higher the score the greater the desire for death. The lower the score the greater the desire to continue living. A score of >= 10 was associated with a high level of desire for death while a score <= 3 was associated with a low desire.

• In patients with HIV/AIDS who experienced pain there was a correlation between pain intensity and the SAHD score. In patients with cancer pain-related interference in physical functioning correlated with the SAHD score while pain intensity did not.

• Higher scores were moderately correlated with depression and/or hopelessness.

References:

Rosenfeld B Breitbart W et al. Measuring desire for death among patients with HIV/AIDS: The Schedule of Attitudes Toward Hastened Death. Am J Psychiatry. 1999; 156: 94-100.

Rosenfeld B Breibart W et al. The Schedule of Attitudes toward Hastened Death. Measuring desire for death in terminally ill cancer patients. Cancer. 2000; 88: 2868-2875.

01.24.02 Scoring a Terminal Ill Patient's Desire for Death

Overview:

The desire for death of a terminally ill patient can be scored based on observing the person's attitudes and statements about death.

from Table 1 page 1187

References:

Chochinov HM Wilson KG et al. Desire for death in the terminally ill. Am J Psychiatry. 1995; 152: 1185-1191.

_________________________________________________________________

The Quality of Death and Dying questionnaire (QODD) is a very detailed interview of survivors asking for their observations of the dying person’s experience.

You can find it at the University of Washington Medical School site and others.

BOOK TABLE OF CONTENTS

Personal Introduction

Core ideas and beliefs: These will help you to understand why you might agree or disagree with the ideas that follow.

The Situation Today: Choices open to those with an unacceptably low quality of life: What you face when you are "terminally" ill or suffering from an intolerable condition that is not going to get better.

Super Retirement: Medical/chemical approaches, virtual reality and other possibilities for making Very Old Age more pleasant.

Suffering: The difficulties of assessing physical and emotional pain when considering whether or not to leave life.

Reducing suffering by “opening the door”: How to make leaving life easier: Virtual reality, medication, other technology. Incentives for leaving life. Maladaptive instincts, irrational thinking and the decision to leave.

Modeling and Labeling: The effects of words, images and the media on reactions to leaving life

Pros, cons and unintended consequences of making leaving easier:Down the “slippery slope”? New decisions mean more confusion. The many and varied consequences of reducing the concern over actions and events that shorten life.

Help in making the decision: Preventing abuses: dealing with problems of financial and personal pressure to leave. The unsolvable problem of plunging into an unknowable afterlife.

The Self: What is it that no longer exists when you leave? Holding on to the self and resistance to pain medication and other relief from suffering. 

Conclusions: What it would be best for society to do or not to do — yet.

_______________________________________________[Top]_______

An extensive database of over 400 QOL instruments is provided by The Quality of Life Instruments Database.

You can print out and take the one of the most popular tests, Ferrans and Power’s Quality of Life Index at this site:

http://www.uic.edu/orgs/qli/

"The Quality of Life Index is a four-page 33-item inventory that asks for degree of satisfaction with your interpersonal and material environment, and with different aspects of yourself. It also asks you to weight the importance of each item so that more weight can be given to the more important items in the total score. The Ferrans and Powers QOL Index will help you to consider how your life is going in many areas and will stimulate ideas for change."

(Those of you who are familiar with testing will realize that a total score doesn’t have meaning until you relate it to the level of some other variable, or measure it against the level of a group to which you wish to compare yourself. For example, you might want to know how your QOL Index compares to others in your socioeconomic class.) ____________________________________________________

Examples of several other QOL indices follow below. These more limited scales ask you about feelings which result from how you are doing in a variety of areas.

The examples came from the following site, which also has descriptions of a number of others:

http://www.uib.no/isf/people/doc/qol/comp0000.htm#I3.

_____________________________________________________

Name:  Wessman & Ricks' `Elation - depression scale'

This question is answered for six weeks, every evening before retiring:

On average; how elated or depressed, happy or unhappy did you feel today....?

10   Complete elation, rapturous joy and soaring ecstasy

9    Very elated and in very high spirits. Tremendous delight and buoyancy.                 

8    Elated and in high spirits

7    Feeling very good and cheerful

6    Feeling pretty good, "OK"

5    Feeling a little bit low. Just so-so

4    Spirits low and somewhat 'blue'

3    Depressed and feeling very low. Definitely 'blue'

2    Tremendously depressed. Feeling terrible, really miserable, "just awful"

1    Utter depression and gloom. Completely down.

0    All is black and leaden. Wish it were all over.

Reference: Wessman, A.E. & Ricks, D.F., 'Mood and Personality', Holt, 1966, New York, USA

Name: Watson's PANAS ('past few days' version)

This scale consists of a number of words that describe different feelings and emotions. Read each item and mark the appropriate answer in the space next to that word. Indicate to what extent you felt this way during the past few weeks:

A  ___ nervous 

B  ___distressed

C  ___afraid

D  ___jittery

E  ___irritable

F  ___upset

G  ___scared

H  ___exiled

I  ___ashamed

J  ___guilty

K  ___hostile

L  ___active

M  ___determined

N  ___inspired

O  ___enthusiastic

P  ___alert

Q  ___attentive

R  ___proud

S  ___strong

T  ___interested

Answer options: 

1  very slightly or not at all

2  a little

3  moderately

4  quite a bit

5  extremely

Negative affect score (NAS): Sum of A to K

Positive affect score (PAS): Sum of L to T

Affect Balance Score  (ABS): PAS - NAS

Reference: Watson, D., 'Development and Validation of a Brief Measure of Positive and Negative Affect', Journal of Personality and Social Psychology, 1988, Vol. 54, 1063-

___________________________________________________________________

Name: Cantril's self-anchoring ladder rating of life (original)

Best-Worst possible life (O-BW)

Here is a picture of a ladder. Suppose we say that the top of the ladder represents the best possible life for you and the bottom represents the worst possible life for you.

Where on the ladder do you feel you personally stand at the present time?"    

[   10  ]  best possible life

[    9  ]

[    8  ]

[    7  ]

[    6  ]

[    5  ]

[    4  ]

[    3  ]

[    2  ]

[    1  ]

[    0  ]  worst possible life

The ladder question is preceded by: 1) Open-ended questions about the best possible life one could hope for and the worst possible life one could fear; and, 2) Ratings on the ladder of one's life five years ago, and where on the ladder one expects to stand five years from now.

Reference: Cantril, H., The pattern of human concern, Rutgers University Press, New Brunswick, New Jersey, USA, 1965

Name: Bradburn's 'Affect Balance Scale' (standard version)
 

"During the past few weeks, did you ever feel ....?" 

A   Particularly exited or interested in something?  Yes  No

B   So restless that you couldn't sit long in a chair?  Yes  No

C   Proud because someone complimented you on something you had done?

Yes  No

D Very lonely or remote from other people  Yes No

 Pleased about having accomplished something? Yes No 

F   Bored?  Yes  No

G   On top of the world?  Yes  No

H   Depressed or very unhappy?  Yes  No

I   Felt that things were going your way? Yes  No

J   Upset because someone criticized you? Yes  No

Answer options and scoring:

 yes = 1

 no  = 0

Summation:

-Positive Affect Score (PAS): A+C+E+G+I

-Negative Affect Score (NAS): B+D+F+H+J

-Affect Balance Score (ABS): PAS minus NAS

Possible range: -5 to +5

Name: Zersen's 'Befindlichkeits Skala' version 2 (B-S')

Below is a list of opposed attributes. Please indicate which applies best to your situation at this moment. Don't think too long. Place a cross next to the word this fits best. If you cannot decide, use the neither/nor option. Do not skip any lines.

"At the moment I am feeling.....:"

A ___ outgoing-------------------- inhibited

B ___ in good spirits------------ gloomy

C ___lacking in drive---------- motivated

D ___ ill---------------------- healthy

E ___ determined---------------- aimless

F ___ serious------------------ lighthearted

G ___ lacking in ideas-------- full of ideas

H ___ sensitive------------- thick-skinned

I ___ pessimistic---------------- optimistic

J ___ carefree-------------------- brooding

K ___ worn out-------------------- alert

L ___ capable of love----- incapable of love

M ___ guilty----------------------- innocent

N ___ exhausted----------------- revived

O ___ tired of living--------- enjoying life

P ___ good natured------------- mean

Q ___ merry------------------------- sad

R ___ loved-------------------------unloved

S ___ lazy------------------------- active

T ___ reserved----------------- responsive

U ___ full of life---------------  lifeless

V ___ spirited----------------------  inert

W ___ attentive-------------------  absent-minded

X ___ desperate------------------ hopeful

Y ___ content.....................discontent

Z ___ afraid.....................  unafraid

AA ___ vigorous...................powerless

AB ___ equable....................restless

Response options:

3  positive option

2  neither/nor

1  negative option

Summation: Mean score

Reference: Schwarz, D. & Strian, F., ' Psychometrische Untersuchungen zur Befindlichkeit psychiatrischer und inter-medizinischer Patienten' (Psychometric investigations on well-being in psychiatric and medical patients) Archiv für Psychiatrie und Nervenkrankheiten, 1972, vol. 216no. 1, p.  70

_____________________________________________________

Name: MISSOULA-VITAS QUALITY OF LIFE INDEX (MVQOLI)

The following description comes from Dr. Ira Byock's Dying Well web site.

Improving quality of life for patients is the primary goal for hospice care and for end-of-life care in any setting. The Missoula-VITAS Quality of Life Index (MVQOLI) is specifically designed to evaluate the patient's experience of quality of life during advanced illness."

Based on Dr. Ira Byock's model of growth and development at the end of life, the MVQOLI is used both as an assessment tool to inform care planning and as an outcome measure. The instrument produces a quality of life profile for each individual patient that graphically reveals the influence of  5 domains of experience on quality of life.

These domains are:

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