Appendices
Appendix A
INITIAL ASSESSMENT FOR CANCER PAIN page 185
From A. Jacox et al., Management of Cancer Pain, Clinical
Practice Guideline no. 9, AHCPR pub. no. 94-0592 (Rockville, Md.:
U. S. Department of Health and Human Services, Public Health
Service, Agency for Health Care Policy and Research, March 1994),
25.
page 186 WHEN DEATH IS SOUGHT
A. Assessment of pain intensity and character
1 .Onset and temporal paftern-When did your pain start? How often
does it occur? Has its intensity changed?
2. Location-Where is your pain? Is there more than one site?
3. Description-What does your pain feel like? What words would you
use to describe your pain?
4. Intensity-On a scale of 0 to 1 0, with 0 being no pain and 1 0
being the worst pain you can imagine, how much does it hurt right
now? How much does it hurt at its worst? How much does it hurt
at its best?
5. Aggravating and relieving factors-What makes your pain better?
What makes your pain worse?
6. Previous treatment-What types of treatments have you tried to
relieve your pain? Were they and are they effective?
7. Effect-How does the pain affect physical and social function?
B. Psychosocial assessment
Psychosocial assessment should include the following:
1 .Effect and understanding of the cancer diagnosis and cancer
treatment on the patient and the caregiver.
2. The meaning of the pain to the patient and the family.
3. Significant past instances of pain and their effect on the patient.
4. The patient's typical coping responses to stress or pain.
5. The patient's knowledge of, curiosity about, preferences for, and
expectations about pain management methods.
6. The patient's concerns about using controlled substances such as
opioids, anxiolytics, or stimulants.
7. The economic effect of the pain and its treatment.
8. Changes in mood that have occurred as a result of the pain
(e.g., depression, anxiety).
C. Physical and neurologic examination
1. Examine site of pain and evaluate common referral patterns.
2. Perform pertinent neurologic evaluation.
* Head and neck pain-cranial nerve and fundoscopic evaluation.
* Back and neck pain-motor and sensory function in limbs; rectal
-and urinary sphincter function.
D. Diagnostic evaluation
1 .Evaluate recurrence or progression of disease or tissue injury
related to cancer treatment.
* Tumor markers and other blood tests.
* Radiologic studies.
* Neurophysiologic (e.g., electromyography) testing.
2. Perform appropriate radiologic studies and correlate normal and
abnormal findings with physical and neurologic examination.
3. Recognize limitations of diagnostic studies.
* Bone scan-false negatives in myeloma, lymphoma,
previous radiotherapy sites.
* CT scan-good definition of bone and soft tissue but
difficult to image entire spine.
* MRI scan-bone definition not as good as CT, better images of spine
and brain.
page 187 Appendix B
BRIEF PAIN INVENTORY (SHORT FORM)
This form was developed by the Pain Research Group, Department
of Neurology, University of Wisconsin-Madison, and is used with
permission. It appears in A. Jacox et al., Management of Cancer
Pain, Clinical Practice Guideline no. 9, AHCPR pub. no. 94-0592
(Rockville, Md.: U. S. Department of Health and Human Services,
Public Health Service, Agency for Health Care Policy and Research,
March 1994), 228-29.
page 188 When Death Is Sought
Brief Pain Inventory (Short Form)
Brief Pain Inventory (Short Form)
Study ID#_________________________________ Hospital# ______________
Do not write above this line
Date: __/__/__
Time:_________
Name: ______________________________________________________________________
Last First Middle Initial
1) Throughout our lives, most of us have had pain from time to time
(such as minor headaches, sprains, and toothaches). Have you had
pain other than these everyday kinds of pain today? 1. Yes 2. No
2) On the diagram, shade in the areas where you feel pain.
[The graphic diagram contained in the orignial printed ]
[version of this report cannot be displayed in the text]
[format used for this electronic version. ]
3) Please rate your pain by circling the one number that best
describes your pain at its worst in the past 24 hours.
0 1 2 3 4 5 6 7 8 9 10
No Pain as bad as
pain you can imagine
4) Please rate your pain by circling the one number that best
describes your pain at its least in the past 24 hours.
0 1 2 3 4 5 6 7 8 9 10
No Pain as bad as
pain you can imagine
5) Please rate your pain by circling the one number that best
describes your pain on the average.
0 1 2 3 4 5 6 7 8 9 10
No Pain as bad as
pain you can imagine
Appendices page 189
6) Please rate your pain by circling the one number that tells how
much pain you have right now.
0 1 2 3 4 5 6 7 8 9 10
No Pain as bad as
pain you can imagine
7) What treatments or medications are you receiving for your pain?
8) In the past 24 hours, how much relief have pain treatments or
medications provided? Please circle the one percentage that most
shows how much relief you have received.
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
No Complete
relief relief
9) Circle the one number that describes how, during the past 24
hours, pain has interfered with your:
A. General activity
0 1 2 3 4 5 6 7 8 9 10
Does not Completely
interfere interferes
B. Mood
0 1 2 3 4 5 6 7 8 9 10
Does not Completely
interfere interferes
C. Walking ability
0 1 2 3 4 5 6 7 8 9 10
Does not Completely
interfere interferes
D. Normal work (includes both work outside the home and housework)
0 1 2 3 4 5 6 7 8 9 10
Does not Completely
interfere interferes
E. Relations with other people
0 1 2 3 4 5 6 7 8 9 10
Does not Completely
interfere interferes
F. Sleep
0 1 2 3 4 5 6 7 8 9 10
Does not Completely
interfere interferes
G. Enjoyment of life
0 1 2 3 4 5 6 7 8 9 10
Does not Completely
interfere interferes
Source: Pain Research Group, Department of Neurology, University of
Wisconsin-Madison. Used with permission. May be duplicated and
used in clinical practice.
Page 190 intentionally left blank
Page 191 Appendix C
American Pain Society Quality
Assurance Standards for Relief of
Acute Pain and Cancer Pain
These standards were developed by the Committee on Quality
Assurance Standards, American Pain Society (Mitchell B. Max, chair).
They appear in Proceedings of the VI World Congress on Pain, ed. M.
R. Bond, J. E. Charlton, and C. J. Woolf (New York: Elsevier
Science Publishers, 1991), 185-89.
Pages 192 - 196 Pages in unreadable format
Page 197 Appendix D
Detection and Diagnosis
of Depression
From Depression Guideline Panel, Depression in Primary Care:
Detection, Diagnosis, and Treatment, Quick Reference Guide for
Clinicians, no. 5, AHCPR pub. no. 93-0552 (Rockville, Md.: U. S.
Department of Health and Human Services, Public Health Service,
Agency for Health Care Policy and Research, April 1993), 2-9.
Further information, including guidelines for treating major
depression, may be found in this publication and in the Depression
Guideline Panel's Depression in Primary Care, Clinical Practice
Guideline, no. 5, vols. 1 and 2, AHCPR pub. nos. 93-0550 and 93-0551
(Rockville, Md.: U. S. Department of Health and Human Services,
Public Health Service, Agency for Health Care Policy and Research,
page 198 WHEN DEATH IS SOUGHT
The following step-wise process can assist primary care
practitioners in detecting, diagnosing, and treating major
depression.
1 . Maintain a high
index of suspicion and
evaluate risk factors.
Surveys consistently show that 6 to 8 percent of all outpatients in
primary care settings have major depressive disorder; women are at
particular risk for depression. Although sadness is frequently a
presenting sign of depression, not all patients complain of sadness,
and many sad patients do not have major depression. Comnion
complaints of patients in primary care settings with major
depressive disorder include:
* Pain-including headaches, abdominal pain, and other body aches.
* Low energy-excessive tiredness, lack of energy or a reduced
capacity for pleasure enjoyment.
* A mood of apathy, irritability, or even anxiety rather than, or in
addition to, any overt sadness may be present.
* Sexual complaints--problems with sexual functioning or desire.
The clinician should he doubly alert to the likelihood of depression
in individuals under age 40.
Additional clinical clues that raise the likelihood of a major
depressive disorder include:
* Prior episodes of depression.
* A family history of major depressive or bipolar disorder.
* A personal or family history of suicide attempt(s).
* Concurrent general medical Appendices 199 illnesses.
* Concurrent substance abuse.
* Symptoms of fatigue, malaise, irritability, or sadness.
* Recent stressful life events and lack of social supports. (Stress
should not be used to "explain away" depression; stress may
precipitate a depression in some cases.)
2. Detect depressive
symptoms with a or
clinical interview.
Major depressive disorder is a syndrome consisting of a
constellation of signs and symptoms that are not normal reactions to
life's stress. A sad or depressed mood is only one of the several
possible signs and symptoms of major depressive disorder. The
clinician may find it useful to provide the patient with a written
list of depressive symptoms (pages 3 and 4) and ask the patient to
indicate any symptoms experienced. This patient self- report can
increase the likelihood of detecting major depression.
Appendices page 199
Diagnosis
Diagnostic criteria for
major depressive disorder.
For major depressive disorder, at least five of the following
symptoms are present during the same time period, and at least the
one of the first two symptoms must be present. In addition,
symptoms must be present most of the day, nearly daily, for at least
2 weeks.
* Depressed mood most of the day, nearly every day.
* Markedly diminished interest or pleasure in almost all activities
most of the day, nearly every day (as indicated either by subjective
account or observation by others of apathy most of the time).
* Significant weight loss/gain.
* Insomnia/hypersoinnia.
* Psychomotor agitation/retardation.
* Fatigue (loss of energy).
* Feelings of worthlessness (guilt).
* Impaired concentration (indecisiveness).
* Recurrent thoughts of death or
suicide.
All depressed patients should be assessed for the risk of suicide by
direct questioning about suicidal thinking, impulses, and personal
history of suicide attempts. Patients arc reassured by questions
about suicidal thoughts and by education that suicidal thinking is a
common symptom of the depression itself and not a sign that the
patient is "crazy."
Table 1 lists the risk factors associated with completed suicide.
If suicide is a distinct risk (specific plans or significant risk
factors exist), consult a mental health specialist immediately. The
patient may need specialized care or hospitalization.
Table 1. Suicide risk factors
...................................
. Psychosocial and clinical .
. Hopelessness .
. Caucasian race .
. Male gender .
. Advanced age .
. Living alone .
. History .
. Prior suicide attempts .
. Family history of suicide .
. attempts .
. Family history of .
. substance abuse .
. Diagnostic .
. General medical illnesses .
. Psychosis .
. Substance abuse .
...................................
Bipolar illness. A small percentage of patients with major
depressive disorder have bipolar illness. These patients experience
mood cycles with discrete episodes of depression and mania. In
between episodes, they may feel perfectly normal.
page 200 WHEN DEATH IS SOUGHT
Diagnostic criteria for mania. For mania, at least four of the
following symptoms, including the first one listed, must be present
for a period of at least 1 week.
* A distinct period of abnormally and persistently elevated,
expansive, or irritable mood.
* Less need for sleep.
* Talkative or feeling pressure to keep talking.
* Distractibility.
* Flight of ideas.
* Increase in goal-directed activity (either socially, at work or
school, or sexually) or psycomotor agitation.
* Inflated self-esteem or grandiosity.
* Excessive involvement in pleasurable activities which have a high
potential for painful consequences (buying sprees, sexual
indiscretions, or foolish business investiments). low interest
3. Diagnose the mood disorder
using clinical
history and interview.
Many patients are aware of only some symptoms and may minimize their
disability. Interviewing someone who knows the individual well (a
spouse, close friend, or relative) can be extremely valuable in
obtaining an accurate picture of the patients, symptoms, degree of
disability, and course of illness.
-----------------------------------------------------------
| Figure 1.Differential diagnosis of primary mood disorders|
___________________________________________________________
.............. ............ .............
. Sad mood . Yes .5 out of 9. Yes ............. No .Major .
. or . ---> . symptoms . ---> .Prior manic. ---> .depressive .
.low interest. . now? . .episode? .\ Y . disorder .
.............. ............ ............. \ E .............
No | \S
v \
..............
. 5 out of 9 . Yes ............. Yes ..........
. symptoms in. ---> .Prior manic. ---> .Bipolar .
. the past? . . episode . .disorder.
. ___________. ............. \ N ..........
No | \O
v \
.............. ........... \ ...............
. More than . Yes .Dysthymic. . Major .
. 2 years of. ---> .disorder . . depressive .
. persistent. \ ........... . disorder in .
. symptoms? . \ N . partial .
.............. \ O . remission .
\ ...............
...................
.Depression not .
. otherwise .
. specified .
.(recurrent brief,.
. minor, mixed .
. anxiety/ .
. depression) .
...................
Appendicies page 201
Practitioners should always ask about prior manic episodes, since
bipolar disorder, if present, requires a different treatment
approach, Figure I shows the diagnostic decisions needed to arrive
at a diagnosis of a primary mood disorder.
4. Evaluate patients
with a complete
medical history and physical
examination.
The patient's initial complaints should be evaluated
thoroughly with a medical review of systems and a physical
examination. If no cause or associated factors can be found for the
initial presenting medical complaint, diagnose the Appendices 201
patient for primary mood syndrome.
5. Identity and treat
potential known causes
(if present) of mood
disorder.
Approximately 10-1 5 percent or more of major depressive
conditions are caused by general medical illnesses or other
--------------------------------------------------
| Figure 2.Conditions assoicated with mood symptoms |
| or major depressive episodes |
---------------------------------------------------
Associated Initial
Condition: Treatment
Objective:
............. Yes .............
. Substance . --> . Substance . -> |
. abuse . . abuse 1 . |
............. ............. |
| |
v |
............. Yes ................ |
. Concurrent. --> . Change . |
. medication. . medications . -->
............. ................ |
| |
v |
.............. ............. | ............. ...........
. General . Yes . General . | . Mood . Yes . Treat .
. medical . --> . medical . ---> |-->. Disorder . --> . Mood. .
. disorder . . disorder 1. | . Persists? . . Disorder.
.............. ............. | ........... . ...........
| |
v |
............... ............... |
. Causal, . Yes . Causal, . |
. nonmood . --> . nonmood . |
. psychiatric . . psychiatric. ---|
. disorder . . disorder . |
............... ............... |
| |
v |
................ ................. |
. . . . |
.Grief reaction. Yes..Grief reaction . -| (1) Depending on the clinical
. . . .-->
. . --> . . | and the patient's history,
................ ................. | both the mood disordr and the
| | associated condition may be
v | primary treatment objectives.
................ |
. Primary mood . Yes |
. disorder . --> |
................------------------------|
page 202 WHEN DEATH IS SOUGHT
conditions (see figure 2). Generally, the principal is to
treat the associated condition first. If the depression persists
after treatni nt of the associated condition, major depressive
disorder should be diagnosed and treated, Potential associated
conditions include:
** Substance abuse. Too much alcohol, use of illicit drugs, or
abuse of prescription medicines can cause or complicate a major
depressive episode. In most cases, once the substance has been
discontinued. the depression lifts (Figure 3).
** Concurrent medication. Depression may be an idiosyncratic side
effect of many medications. However, the clinician should be aware
that this effect is uncommon and usually occurs within days to weeks
of starting the medication. Current disorder, and some cases of
evidence clearly implicates only reserpine, glucocorticoids, and
anabolic steroids with the de novo development of depression as a
potential side effect of the drug. Changing to a different
medication often relieves the depression (Figure 4).
** General medical disorders. Depression can occur in the presence
of general medical condition (Figure 4) (most commonly, autoimmune,
neurologic, metabolic, infectious, oncologic, and endocrine
disorders, among others). There are several possibilities in such
cases: The general medical disorder and the mood disorder
biologically causes or triggers a depression; for example,
hypothyroidism can be accompanied by depressive symptoms. In this
case, treat the general medical disorder first. The general medical
disorder psychologically results in depression; for example, a
patient with cancer may become clinically depressed as a reaction to
the prognosis, pain or incapacity, although most patients with
cancer do not suffer a major depressive episode. In this case,
treat the depression as an independent disorder. The general
medical disorder and the mood disorder are not causally related. In
this case, treat the depression.
** Other causal nonmood 203 psychiatric disorders. These generally
include eating disorders, and some cases of panic disorder (Figure
3). When generalized anxiety disorder co-exists with major
depression, treatment should be directed toward the major depression
first. If panic disorder is present only during major depressive
episodes, the major depression is treated first. If panic disorder
and major another depression are both present and the panic disorder
has been present without episodes of major depression in the past,
the clinician must judge which is the most significant condition
(e.g., by family history, the level of current disability
Appendices page 203
--------------------------------------------------------------
| Figure 3. Relationship between major depressive and |
| other current psychiatric disorders |
______________________________________________________________
Patient presents with depreession and another
nonmood psychiatric disorder
|
|
v
.................. ....................
.Is the disorder . Yes . Treat Substance .
.substance abuse . --> . Abuse (4) .
.................. ....................
| |
v NO v
................. .................... ....................
. Treat the . Yes . Is the Disorder . . Is depression .
. depression(1) . --> . generalized . . still present? .
............... . . anxiety? . ....................
.................. . | | YES
No | NO | |
v | |
..................... ................... v v
. Treat the . . Is the disorder. STOP ...............
. eating disorder . YES . an eating . . Treat the .
. or obsessive- . --> . disorder or . . depression .
.
. compulsive . . obsessive- . ...............
. disorder? . . compulsive .
................... . . disorder? .
| ...................
v |
NO v
.................... .................... .................
. Is Depression . . Is the disorder . YES . Decide which .
. still present? . . panic disorder? . --> . is primary(3) .
.................. . .................... . and treat (2) .
| | | .................
v No V YES |
...... ............... |
.STOP. . Treat the . | NO
...... . depression . |
............... |
v
...................... ...................
. Treat the . Yes . Is the disorder .
. depression; . --> . a personality .
. reevaluate for . . disorder? .
. personality . ...................
. disorder; if still.
. present, treat .
......................
(1) When the depression is
treated, the anxiety
disorder should resolve as
well.
(2) Choose medications known
to be effective for both the
depression and the other
psychiatric disorder.
(3) Primary is the most severe,
the longest standing by
history, or the one that runs
in the patient's family.
(4) In certain cases (based on
history), both major
depression and substance
abuse may require
simultaneous treatment.
page 204 WHEN DEATH IS SOUGHT
--------------------------------------------------------
| Figure 4. Relationship between major depressive and |
| other current general medical disorders |
________________________________________________________
................................ ..................................
. Patient has depression, . . Patient has depression, .
. a concurrent . . a concurrent .
. general medical condition, . . general medical condition, .
. and is on . . and is NOT .
. medication for the latter. . . on medication for the latter..
................................ ..................................
|
v
......................................
. Medication causes the depression? .
......................................
|
.......................
|
v
----------------------------------------
| |
| NO v
YES | ................................
(Maybe) | . General medical disorder .
v . causes the depression? .
................ ................................
. Modify . | | NO
. Medication . | | | Yes
. Regime . | | | (Maybe)
................ | | v
| | | .................
v | | . Optimize .
................... | | . treatment of .
. Depression still. YES | | . the general .
. present? . --------------------- | . medical .
................... | . disorder .
| | .................
NO v | |
| v
| ....................
.......... | . Depression still .
. STOP . v . present? .
.......... ....................
....................... |
. . v No
. Treat the depression. .......
....................... . STOP.
.......
Note:In some clinical situations, treatment of the depression (e.g.,
if severe, incapacitating, or life-threiitening) cannot be del@iyed
until treatment for the general medical disorder has been optimized.
Appendices page 205
that condition first. (Some medications have proven effective for
both disorders and, therefore, may be preferred in such situations.)
If a "personality disorder" is suspected, the major depressive
disorder is treated first, whenever feasible. grief reaction. it is
important to differentiate a normal grief reaction from depression.
A normal grief reaction persists for 2 to 6 months and improves
steadily without specific treatment. Most grief reactions do not
meet criteria for a major depressive episode. Grief reactions are
usually seen by patients as normal and appropriate. While
unpleasant, they rarely cause significant and prolonged impairment
in work or other functions. Some individuals experience symptoms of
depression along with the grief reaction. If the major depressive
episode persists for more than 2 months after the loss, a major
depressive disorder should be diagnosed and treated.
6. Reevaluate for
mood disorders.
If the depression persists after treatment of the associated
psychiatric, general medical, or substance abuse disorders,
the depression should be diagnosed and treated.
April 1993).
References in the Depression Guideline Panel's text are to
American Psychiatric Association, Diagnostic and Statistical Manual
of Mental Disorders, 3d rev. ed. (Washington: American Psychiatric
Press, 1987).
Appendix E
Questions to Ask In the Assessment
of Depressive Symptoms for
Severely Ill Patients
This list of questions was formulated by Jimmie C. Holland,
M.D., who served as a consultant to the Task Force. The process of
evaluating clinical depression in cancer patients is discussed in A.
J. Roth and J. C. Holland,"Treatment of Depression in Cancer
Patients," Primary Care in Cancer 14 (1994): 24-29.
Mood
* How well are you coping? Well? Poorly? (Well being)
* How are your spirits? Down? Blue? Depressed?Sad? Do you
cry sometimes? How often? Only alone? (Mood)
* Are there things you still enjoy doing or have you lost
pleasure in the things you used to do? (Anedonia)
* How does the future look to you? Bright? Black? (Hopelessness)
* Do you feel you can change things or are they out of
control? (Helplessness)
* Do you worry about being a burden? Feel others might be better
off without you? (Worthlessness, guilt)
Physical Symptoms
(Evaluate in the context of illness-related symptoms.)
* Do you have pain which isn't controlled? (Pain)
* How much time do you spend in bed? Weak? Fatigue easily? Rested
by sleep? (Fatigue)
* How are you sleeping? Trouble going to sleep? Awake early?
Often? (Insomnia)
* How is your appetite? Food tastes good? Weight loss or
gain? (Appetite)
* How is your interest in sex? Extent of sexual activity?
Concerned about partner? (Libido)
* Do you think or move more slowly? (Psychomotor slowing)
Suicidal Risk
(Open with a statement acknowledging the normality of suicidal
thoughts for those with the patient's illness; asking about these
thoughts does not enhance risk.)
* Many patients with your illness have passing thoughts about
suicide, such as"I might do something if it gets bad enough."
Have you ever had thoughts like that? (Acknowledge normality)
* Do you have thoughts of suicide? How? Plan? (Level of risk)
* Have you ever had a psychiatric disorder, depression,
or made a suicide attempt? (Prior history)
* Have you had a problem with alcohol or drugs? (Substance abuse)
* Have you lost anyone close to you recently? (Bereavement)
Appendix F
Requests for Euthanasia
and Assisted Suicide: Nursing
Management Principles
From N. Coyle,"The Euthanasia and Physician-Assisted Suicide
Debate: Issues for Nursing," Oncology Nursing Forum 19, no. 7
suppl. (1992): 45.
* Establish a rapport with the patient.
* Know the issues for the individual patient.
---Inadequate symptom control
---Depression, hopelessness, spiritual despair
---Being a burden on the family
---Altered quality of life and
unacceptable limitations
---Has lived a full life and wants
to die while still in control
* Address the issues.
* Do not act independently; involve colleagues from other
disciplines.
* Address suicide vulnerability factors.
* Assess family status and adequacy of support resources.
* Know the law.
Reprinted from the Oncology Nursing Forum with permission from
the Oncology Nursing Press, Inc.
Appendix G
Additional Resources
Academy of Hospice Physicians
500 Dr. M. L. King Street N., Suite 200
St. Petersburg, FL 33705
(813) 823-8899
Agency for Health Care Policy
and Research (AHCPR)
Executive Office Center, Suite 501
2101 East Jefferson Street
Rockville, MD 20852
(800) 358-9295 to order publications
Agency of the Department of Health and Human Services that has
produced separate guides for patients and clinicians on a number of
topics, including acute pain management, cancer pain management, and
depression. These are available free of charge.
Acute pain management: Pain Control After Surgery: A
Patient's Guide, Clinical Practice Guideline on Acute Pain
Management, Quick Reference Guide on Acute Pain Management in
Adults, and Quick Reference Guide on Acute Pain Management in
Infants, Children, and Adolescents.
Cancer pain management: Managing Cancer Pain (Patient Guide),
Clinical Practice Guideline on Management of Cancer Pain, and Quick
Reference Guide on Management of Cancer Pain: Adults.
Depression: Depression Is a Treatable Illness: A Patient's
Guide, Clinical Practice Guideline on Depression in Primary Care
(vols. 1 and 2), and Quick Reference Guide on Depression in Primary
Care: Detection, Diagnosis, and Treatment.
Alzheimer's Association
919 N. Michigan Avenue, Suite 1000
Chicago, IL 60611-1676
(800) 272-3900 or (312) 335-8700
American Cancer Society
1599 Clifton Road, N.E.
Atlanta, GA 30329-4251
(800) ACS-2345
Provides information about cancer, treatment, and services to
patients and families, as well as health care professionals.
Together with the National Cancer Institute, publishes Questions and
Answers About Pain Control: A Guide for People with Cancer and
Their Families.
American Chronic Pain Association
P.O. Box 850
Rocklin, CA 95677-0850
(916) 632-0922
American Pain Society
5700 Old Orchard Road, First Floor
Skokie, IL 60077-1057
(708) 966-5595
Publishes Principles of Analgesic Use in the Treatment of
Acute Pain and Cancer Pain and a membership directory of health care
professionals and institutions, and conducts educational programs.
American Society of Clinical Oncology
435 N. Michigan Avenue, Suite 1717
Chicago, IL 60611-4067
(312) 644-0828
Conducts educational programs for physicians. The
Society's"Cancer Pain Assessment and Treatment Curriculum
Guidelines" appear in Journal of Clinical Oncology 10 (1992):
1976-82.
American Spinal Injury Association
355 E. Superior, Room 1436
Chicago, IL 60611
(312) 908-6207
A source of information for health care professionals.
Amyotrophic Lateral Sclerosis (ALS) Association
21021 Ventura Boulevard, Suite 321
Woodland Hills, CA 91364-2206
(800) 782-4747 or (818) 340-7500
Provides education, information, and referral services to
assist ALS patients and their families, and information for health
care professionals. Publications include Managing ALS guides for
patients and family members.
Arthritis Foundation
1314 Spring Street, NW
Atlanta, GA 30309
(404) 872-7100
Cancer Care
1180 Avenue of the Americas, Second Floor
New York, NY 10036
(212) 221-3300
Provides support services, counseling, and information for
cancer patients and families.
Centers for Disease Control (CDC),
National AIDS Hotline
(800) 342-2437; Spanish
(800) 344-7432;
TDD (800) 243-7889
A source of information about HIV/AIDS and support services.
Commission on Accreditation of
Rehabilitation Facilities
101 N. Wilmot Road, Suite 500
Tucson, AZ 85711
(602) 748-1212 (voice or TDD)
Provides lists of accredited facilities and programs.
Gay Men's Health Crisis
129 West 20th Street
New York, NY 10011-0022
(212) 807-6655
Provides support services and legal advice for people with
AIDS.
International Association for the Study of Pain (IASP)
909 NE 43rd Street, Suite 306
Seattle, WA 98105
(206) 547-6409
Publishes Core Curriculum for Professional Education in Pain.
International Hospice Institute
1275 K Street, NW, 10th Fl.
Washington, D. C. 20005
(202) 842-1600
Mayday Fund
30 Rockefeller Plaza, 55th Floor
New York, NY 10112
(212) 649-5800
A private foundation that provides grants and executes
programs to reduce the human problems associated with pain and its
consequences.
Memorial Sloan-Kettering Cancer Center
1275 York Avenue
New York, NY 10021
(212) 639-2000Pain Hotline (212) 639-7918
Hospital and research institution that is a WHO Collaborating
Center for Cancer Pain Research and Education. Operates Network
project that trains educators and clinicicans nationwide in
palliative care.
Muscular Dystrophy Association
New York Metropolitan Chapter:
10 E. 40th Street, Suite 4105
New York, NY 10016
(212) 679-6215
National Office:
3300 E. Sunrise Drive
Tucson, AZ 85718
(602) 529-2000
National Cancer Institute,
Cancer Information Service
Office of Cancer Communications,
Building 31, Room 10A24
Bethesda, MD 20892
(800) 4CANCER
Provides information for patients and families, are
professionals, and the public about pain control and other topics
related to cancer.
National Chronic Pain Outreach Association
7979 Old Georgetown Road, Suite 100
Bethesda, MD 20814-2429
(301) 652-4948; fax (301) 907-0745
Offers information and pamphlets for patients, information
about chronic pain support groups, and referrals to pain management
specialists and clinics.
National Coalition for Cancer Survivorship
1010 Wayne Avenue, 5th Floor
Silver Spring, MD 20910-9796
(301) 650-8868
Publications include Teamwork: The Cancer Patient's Guide to
Talking with Your Doctor, and Charting the Journey: An Almanac of
Practical Resources for Cancer Survivors.
National Headache Foundation
5252 North Western Avenue
Chicago, IL 60625
(800) 843-2256 or (312) 878-7715
National Hospice Association
1901 N. Moore Street, Suite 901
Arlington, VA 22209
(800) 658-8898
Offers information and referral services.
National Multiple Sclerosis Society
733 Third Avenue
New York, NY 10017
(800) LEARNMS
National Spinal Cord Injury Association
600 W. Cummings Park, Suite 2000
Woburn, MA 01801
(617) 935-2722
National Spinal Cord Injury Hotline
(800) 526-3456
Offers information about spinal cord injury and living with
spinal cord injury, as well as referral services and access to
support groups.
Oncology Nursing Society
501 Holiday Drive
Pittsburgh, PA 15220
(412) 921-7373
Publications include Cancer Related Resources in the U. S. and
ONS Position Paper on Cancer Pain.
Rehabilitation Nursing Foundation,
Association of Rehabilitation Nurses
5700 Old Orchard Road, First Floor
Skokie, IL 60077-1057
(708) 966-3433
Publishes The Specialty Practice of Rehabilitation Nursing: A
Core Curriculum.
United Cerebral Palsy Foundation Association
1522 K Street, NW, Suite 1112
Washington, DC 20005
(800) 872-5827
Offers a referral service and information about interventions,
patient and family support, assisted technology, and employment.
Washington State Medical Association
2033 Sixth Avenue, #1100
Seattle, WA 98121
(206) 441-9762
Publishes Pain Management and Care of the Terminal Patient, a
handbook for health care professionals.
Wisconsin Cancer Pain Initiative
3675 Medical Science Center
University of Wisconsin Medical School
1300 University Avenue
Madison, WI 53706
(608) 262-0978
Pamphlets for patients include Cancer Pain Can Be Relieved,
Children's Cancer Pain Can Be Relieved, and Jeff Asks About Cancer
Pain (for adolescents). Also publishes a Handbook of Cancer Pain
Management for health care professionals.
World Health Organization
WHO Publications Center USA
49 Sheridan Avenue
Albany, NY 12210
(518) 436-9686
Publishes Cancer Pain Relief (1986) and Cancer Pain Relief and
Palliative Care (1990).
Other Publications
Bonica, John J., ed., The Management of Pain, 2d ed.
(Philadelphia: Lea and Febiger, 1990). A comprehensive two-volume
work for health care professionals.
Cowles, Jane, Pain Relief: How to Say No to Acute, Chronic,
and Cancer Pain (New York: MasterMedia, 1993). A comprehensive and
accessible guide for patients; includes extensive lists of
resources.
Dittmar, Sharon S., Rehabilitation Nursing: Process and
Application (St. Louis: C. V. Mosby, 1989). Includes as an
appendix a list of"Organizations for the Disabled."
Doyle, Derek, Geoffrey W. C. Hanks, and Neil MacDonald, eds.,
Oxford Textbook of Palliative Medicine (New York: Oxford University
Press, 1993).
Holland, Jimmie C. and Julia H. Rowland, eds., Handbook of
Psychooncology (New York: Oxford University Press, 1989).
Other Reports by the Task Force
* When Others Must Choose: Deciding for Patients
Without Capacity, May 1992 (288 pp.)
* Surrogate Parenting: Analysis and Recommendations
for Public Policy, May 1988 (,143 pp.)
* Transplantation in New York State: The Procurement
and Distribution of organs and Tissues,
January 1988 (164 pp.)
* Fetal Extrauterine Survivability, January 1988 (13 pp.)
* Life-Sustaining Treatment: Making Decisions and
Appointing a Health Care Agent, July 1987 (180 pp.)
* The Determination of Death, July 1986 (48 pp.)
* Do Not Resuscitate, Orders, April 1986 (113 pp.)
* The Required Request Law, March 1986 (16 pp.)
copies of Task Force reports can be obtained by writing or
calling:
Health Research Inc.
Health Education Services
P.O. Box 7126
Albany, NY 1224
(518) 439-7286