The Very Old Persons Bill of Rights
Table of Contents for my book on leaving life
Other measures of Quality of Life
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> Society should define Very Old Age as a special time
of life for which there are different rules and expectations that can allow
the VOP to have a fulfilling and pleasurable experience. > People should be taught about Very Old Age in school and by the media
so that they empathize with VOPs and can be with
them in ways that can be helpful and satisfying to all that are involved. > The VOP should have a disinterested advocate whose job it is to look
out for his interests, such as those listed below. > The VOP should have the opportunity to review his life. This will
allow him to relive his life and to find meaning in it. The life review would
serve as an enduring memorial, and provide the chance for him to pass on what
he has learned. It would also be a chance to
say "Thank-you", "I'm sorry", "I forgive you"
and "I love you", if for some reason he can't say these in person. > The VOP should have access to medical and other means of extending his
life, improving his quality of life, and of leaving life. He and his advocate
should be given complete information about any contemplated course of action
so that they can thoroughly explore its benefits
and costs. > The VOP should have contact with the
people who care about him, either through their physical presence or by
being part of a "virtual household" created by audio-visual contact
that is woven into their daily lives. > The VOP should have contact through touch with caring professionals,
loved ones, and animals. He should also be able to be in the actual (as well
as virtual) outdoors. > The immobile VOP should have access to a selection of virtual
realities, including those that are chemically enhanced, that can allow him
to be almost anywhere, do almost anything, and feel whatever he wants. >The VOP should have control of his sensory input; in particular, he
should have access to privacy provided either by the usual space/physical
barriers or by virtual/technological means. > The VOP should have a chance to be useful, in
addition to working on his life review. > The VOP should have contact with people of all ages. |
Super Retirement: Medical/chemical approaches, virtual reality and other possibilities for making Very Old Age more pleasant.
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.
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.
The Leaving Life Questionnaire: A guide to reflecting on your ideas and feelings about the end of life
“Downsizing the population: applying a business model to population control” and other articles
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[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
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... adapted from the
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.
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1. What do you value most about your life? (For example: living a long life, living an active life, enjoying the company of family and friends, etc.) 2. How do you feel about death and dying? (Do you fear death and dying? Have you experienced the loss of a loved one? Did that person’s illness or medical treatment influence your thinking about death and dying?) 3. Do you believe life should always be preserved as long as possible? 4. If not, what kinds of mental or physical conditions would make you think that life-prolonging treatment should no longer be used? Being:
5. Could you imagine reasons for temporarily accepting medical treatment for the conditions you described? 6. How much pain and risk would you be willing to accept if your chances of recovery from an illness or an injury were good (50-50 or better)? 7. What if your chances of recovery were poor (less than 1 in 10)? 8. Would your approach to accepting or rejecting care depend on how old you were at the time of treatment? Why? 9. Do you hold any religious or moral views about medicine or particular medical treatments? 10. Should financial considerations influence decisions about your medical care? 11. What other beliefs or values do you hold that should be considered by those making medical care decisions for you if you become unable to speak for yourself? 12. Most people have heard of difficult end-of-life situations involving family members or neighbors or people in the news. Have you had any reactions to those situations?
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www.vtethicsnetwork.org/WorkSheet1.htm
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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
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Response |
Desire for Life Questions |
Desire for Death Questions |
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True |
0 |
1 |
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False |
1 |
0 |
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.
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Description |
Desire |
Score |
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no information or refused to answer |
unknown |
0 |
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no desire to die soon |
none |
1 |
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has had occasional fleeting thoughts |
slight |
2 |
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often feels that he/she would like to die but not always |
mild |
3 |
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has a genuine desire for death; has discussed this desire with others but is not consumed with the prospect |
moderate |
4 |
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has difficulty diverting thoughts from the desire to die; prays for death |
strong |
5 |
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obsessed with the wish for death; talks of little else; asks of euthanasia; prays for death almost constantly |
extreme |
6 |
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.
www.medal.org/docs_ch1/doc_ch1.24.html
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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.
You can print out and take the one of the most popular tests, Ferrans and Power’s Quality of Life Index at this site:
"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.)
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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.
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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',
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,
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:
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
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