Chapter 3 - Clinical Responses to Pain and Suffering
CHAPTER 3
CLINICIAL RESPONSES TO
PAIN AND SUFFERING page 35
In recent decades, important advances have been made in the
field of "palliative care" ---the management of pain and symptoms
caused by severe illness. While the term has often been used to
describe care provided near the end of life for patients who are no
longer receiving curative treatments, increasingly the term refers
to the palliation of symptoms and care throughout the course of a
patient's illness. Medications and pain relief techniques now make
it possible to treat pain effectively for most patients. Personal
support and counseling can contribute to the management of pain and
other symptoms caused by severe illness and the side effects of
treatment. Overall, palliative care seeks to alleviate the personal
suffering experienced by patients.
Unfortunately, a serious gap exists between what medicine can
achieve and the palliative care routinely provided to most patients.
In many cases, patients do not receive adequate relief from pain,
even when effective treatments are available. Numerous barriers
hamper the delivery of pain relief and palliative care, including a
lack of professional knowledge and training, unjustified fears about
addiction among both patients and health care professionals,
inattention to pain assessment, and pharmacy practices. For many
patients, pain and suffering could be alleviated using medications
and techniques that have been widely publicized and require only
modest resources. In some cases, palliative care requires intensive
efforts by physicians and nurses, drawing upon their professional
commitment as well as their expertise and careful clinical
evaluation of each patient's needs.
Approaches in pain and symptom management have been most fully
developed for two groups of patients: patients with cancer, and
patients with acute pain, such as pain experienced following
surgery. Many of the general approaches and specific treatments
developed for these patients are also used to treat other patients.
For example, patients with human immunodeficiency virus (HIV)
page 36 WHEN DEATH IS SOUGHT
disease have symptoms similar to those of cancer patients and can
benefit from the same palliative treatments.(1)
Responding to chronic pain involves distinctive challenges.
Many aspects of palliative care for patients with chronic pain are
less well developed than the management of acute pain and cancer
pain; they have received far less attention in medical training,
research, and practice. Nevertheless, some advances in the
assessment and treatment of chronic pain have occurred in recent
years. Notable among these is the development of multidisciplinary
approaches to chronic pain and the growth of multidisciplinary pain
centers.(2).
Assessing Pain and Other Symptoms
Careful assessment and reassessment of pain and other symptoms
is central to pain and symptom management. This assessment may
include the patient's description of current pain, a "pain history"
of past and ongoing experiences of pain and their effect on the
patient's life, a history of analgesic (pain-relieving) medications
taken by the patient and their effects, and physical examination and
general evaluation of the patient. Determining the cause of pain
often helps to guide effective treatment. Evaluation of concurrent
physical symptoms is important as well, both because of their direct
impact on the patient's quality of life and because of their effect
on the patient's pain. Palliative care experts recommend that
health care professionals consider the patient's emotional, social,
and economic concerns. Like physical symptoms, these factors
contribute to the patient's experience of pain and are often a
direct cause of suffering.(3)
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(1) W. M. O'Neill and J. S. Sherrard, "Pain in Human
Immunodeficiency Virus Disease: A Review," Pain 54 (1993):
3-14. See also R. K. Portenoy, "Chronic Opioid Therapy in
Nonmalignant Pain," Journal of Pain and Symptom Management 5
(1990): S46-62.
(2) J. D. Loeser et al., "Interdisciplinary, Multimodal
Management of Chronic Pain," in The Management of Pain, cd.
J. J. Bonica, 2d cd. (Philadelphia: Lea and Febiger, 1990),
2107-20; H. Flor, T. Fydrich, and D. C. Turk, "Efficacy of
Multidisciplinary Pain Treatment Ccnters: A Meta-Analytic
Review," Pain 49 (1992): 221-30.
(3) Acute Pain Managcment Guideline Panel, Acute Pain
Management: Operative or Medical Procedures and Trauma,
Clinical Practice Guideline, AHCPR pub. no. 92-0032
(Rockville, Md.: U. S. Department of Health and Human Services,
Public Health Service, Agency for Health Care Policy and
Research, February 1992), 7-14; World Health Organization,
Cancer Pain Relief (Geneva: World Health Organization, 1986),
45-48; V. Ventafridda, "Continuing Care: A Major Issue in
Cancer Pain Management," Pain 36 (1989): 138; D. E.
Weissman et al., Handbook of Cancer Pain Management, 3d ed.
(Madison: Wisconsin Pain Initiative, 1992), 2-3; Loeser et al.,
2108,2112.
CHAPTER 3 - CLINICAL RESPONSES TO PAIN AND SUFFERING page 37
For both chronic and acute conditions, palliative care experts
recommend an interdisciplinary approach to pain and symptom
management. Input from the patient and family members is crucial.
Health care professionals should develop an individualized plan for
pain and symptom management, in response to the patient's symptoms
and physical and personal characteristics. For example, if a
patient requires an opioid medication such as morphine,
individualized decisions must be made about the route of
administration, the dosage, and the schedule of administration. For
patients undergoing surgery, the plan should be formulated
preoperatively. Frequent reassessment of the patient's pain and
symptoms is also important, in order to determine the effectiveness
of the plan and to respond to changes in the patient's condition.(4)
Managing Pain
For some patients, pain can be reduced by treatments aimed at
the underlying cause. Pain often indicates a disease or injury that
can be treated. Even if a patient is terminally ill and no longer
receiving curative therapy, interventions aimed at the patient's
underlying illness may serve a palliative function. For example, a
cancer patient may benefit from localized radiation intended to
shrink a tumor and lessen pain.(5) For some acquired
immunodeficiency syndrome (AIDS) patients, oral pain arising from
infection, or headaches caused by toxoplasmosis, could be alleviated
by treating the underlying infection.(6)
Medications are a basic component of pain management for most
patients. According to the American Pain Society, "drug therapy is
the mainstay of treatment for the management of acute pain and
cancer pain in all age groups."(7) Two types of analgesic
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(4) Acute Pain Management Guideline Panel; American Pain Society,
Principles of Analgesic Use in ihe Treatment of Acute Pain and
Cancer Pain, 3d ed. (Skokie, Ill.: Amcrican Pain Society,
1992). Palliative care experts also note that it is casier to
prevent pain than to bring pain under control. Accordingly,
they recommend that patients generally receive analgesics on a
regular basis, around the clock, rather than in response to pain
or "as needed" (PRN).
(5) Weissman et al., 3-4; Ventafridda, 140; World Health
Organization, Cancer Pain Relief and Palliative Care: Report of
a WHO Expert Committee, WHO Technical Rcport Series 804
(Geneva: World Health Organization, 1990), 11.
(6) O'Neill and Sherrard.
(7) American Pain Society, 3.
page 38 WHEN DEATH IS SOUGHT
medications are most widely used: nonsteroidal
anti-inflammatory drugs (NSAIDS), such as aspirin and acetaminophen;
and opioids, such as codeine and morphine. In some cases, other
"adjuvant" analgesics would be effective. For example,
antidepressant or anticonvulsant drugs could serve to reduce
neuropathic pain.(8)
Nonsteroidal anti-inflammatory drugs are generally used to
treat mild to moderate pain. These drugs often provide adequate
palliation for patients after a relatively noninvasive surgical
procedure, or for cancer patients with mild pain. If pain persists
or increases, patients may be given opioid medications.(9) Opioids
are frequently used to treat patients with moderate to severe pain
after surgery or patients with a potentially terminal illness.
While ongoing opioid therapy raises special concerns for patients
with chronic pain who are not terminally ill because of the risk of
tolerance and long-term physical dependence, such treatment can be
appropriate in some cases.(10)
An approach of an "analgesic ladder," proposed by the World
Health Organization (WHO), has been widely accepted in treating
patients with cancer and other diseases. The next "step" after
NSAIDS would be a weak opioid drug combined with a non-opioid; for
example, codeine combined with acetaminophen. Patients with
continuing severe pain would receive a strong opioid, such as
morphine.(11)
With all drugs, health care professionals must be alert to
possible side effects and treat them appropriately. Dosages must be
adjusted carefully to provide adequate palliation while minimizing
side effects. The analgesic needs of patients often change. For
example, a cancer patient may require increasing doses of morphine
as the disease worsens.
Patients may develop tolerance to pain medication such as
opioids. When this occurs, larger or more frequent doses are needed
to produce the same analgesic effect. If a patient becomes
physically dependent on opioids or other drugs, any reduction of
dosage must be gradual to avoid symptoms of abstinence syndrome,
(8) World Health Organization, Cancer Pain Relief; American Pain
Society; Weissman et al.
(9) Acute Pain Management Guideline Panel, 16-17. Especially
when patients have multiple sources and types of pain, more tha
one type of analgesic may be administered simultaneously.
(10) R. K. Portenoy, "Opioid Therapy for Chronic Nonmalignant
Pain: Current Status in Progress in Pain Research and
Management, ed. 11. L. fields and J. C. Liebeskind (Seattle:
IASP Press, 1993), 247-87.
(11) World Health Organization, Cancer Pain Relief; American
Pain Society; Weissman et al. People frequently
have more than one site and type of pain, requiring a
combination of drug therapies.
CHAPTER 3 -- CLINICAL RESPONSES TO PAIN AND SUFFERING page 39
or withdrawal. Physical dependence should not be confused
with psychological dependence, or addiction. Addiction has been
defined as a "behavioral pattern of drug use, characterized by
overwhelming involvement with a drug (compulsive use), the securing
of its supply, and the tendency to relapse after withdrawal."(12)
Psychological dependence is extremely rare in patients receiving
opioids or other medications for pain control. These patients do
not exhibit the compulsive behavior, or the uncontrolled escalation
of dosage in the absence of symptoms, that characterize
addiction.(13)
The appropriate dosage of pain medication can vary
tremendously among patients or for the same patient over time. For
example, a study of 90 advanced cancer patients found that more than
half changed their dosage of opioids by 25 percent or more during
the last four weeks of life. While half the patients received less
than 100 IM morphine equivalent milligrams per day of opioid
analgesics, some patients with neuropathic pain required more than
nine times that dosage. When opioid dose is carefully adjusted to
control side effects, large doses of opioids can be administered
safely, either in the hospital or the patient's home.(14)
Nonpharmacologic treatments can also be effective,
independently or in conjunction with medications. Cognitive and
behavioral approaches can lessen pain and give patients a sense of
control, whether the patient is experiencing acute pain following
surgery or chronic pain associated with cancer. These approaches
include relaxation exercises, imagery, and distraction. Physical
agents, such as applications of heat or cold, may also help to
alleviate pain. Anesthetic interventions can block nerve
transmission on a temporary or ongoing basis. In some extreme
cases, neurosurgery to cut nerves may be appropriate.(15) In other
cases, when pain is otherwise intractable, the combination of
intraspinal administration of opioids and local anesthetic can
provide effective palliation.(16)
(12) J. H. Jaffe, "Drug Addiction and Drug Abuse," in The
Pharmacological Basis of Therapeutics, ed. A. G. Gilman et al.,
7th ed. (New York: Macmillan, 1985), 532-81, cited by
Portenoy, S53.
(13) Portenoy, S53-54-, Weissman et al., 12-13; A. Jacox ct 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), 50-51. See
chapter 8, n. 20.
(14) N. Coyle et al., "Character of Terminal Illness in the
Advanced Cancer Patient: Pain and Other Symptoms During the
Last Four Weeks of Life," Journal of Pain and Symptom Management
5 (1990): 83-93.
(15) Weissman et al.; G. W. flanks and D. M. Justin, "Cancer
Pain: Management," Lancet 339 (1992): 1035; Acute Pain
Management Guideline Panel, 21-26.
page 40 WHEN DEATH IS SOUGHT
Taken together, modern pain relief techniques can alleviate
pain in all but extremely rare cases. Effective techniques have
been developed to treat pain for patients in diverse conditions.(17)
On the basis of studies, for example, it has been estimated that for
90 percent of cancer patients, pharmacological treatments alone can
alleviate pain and symptoms to an extent that patients find
adequate.(18) Other patients can benefit from different approaches.
Some patients whose symptom palliation is "inadequate" may
nonetheless gain significant relief from pain. For example, a
patient's pain may be alleviated when he or she is stationary, but
pain arising from movement might confine the patient to bed most of
the time.(19)
Palliative care experts believe that the number of patients
with unavoidable and intolerable pain is very small. For these
patients, sedation to a sleeplike state, while far from an ideal
option, would prevent the patient from experiencing severe pain and
suffering.(20) This option is considered in rare cases for
terminally ill patients during the last days or weeks of their
lives.(21)
Treating Other Symptoms of Illness
Seriously ill patients generally require treatment for
distressing symptoms other than pain, which may arise from the
disease or as a side effect of treatment. Symptoms such as
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(16) E. S. Krames, "The Chronic Intraspinal Use of Opioid and
Local Anesthetic Mixtures for the Relief of Intractable Pain:
When All Else Fails!" Pain 55 (1993): 1-4.
(17) See, e.g., Acute Pain Management Guideline Panel, 4.
(18) Jacox et al., 8. An estimate of 90-95% adequacy is given by
Elliot S. Krames (2), citing World Health Organization, Cancer
Pain Relief, 2d ed (Geneva: World Health Organization, 1989).
(19) Personal communication, Russel K. Portenoy, M.D., Director
of Analgesic Studies, Pain Service, Department of Neurology,
Memorial Sloan-Kettering Cancer Center.
(2O) See chapter 5, n. 59.
(21) In one case reported in the medical literature, a
28-year-old woman with metastatic cancer suffered from
increasing pain that was only partially relieved by opioids.
Radiation therapy and anesthetic interventions also failed to
provide adequate pain relief. Following the wishes of the
patient and her surrogate decision maker, the patient was kept
in a state of light sedation until her death two days later. R.
D. Truog et al., "Barbiturates in the Care of the Terminally
Ill," New England Journal of Medicine 327 (1992): 1678.
CHAPTER 3 -- CLINICAL RESPONSES TO PAIN AND SUFFERING page 41
nausea, inability to sleep, and loss of appetite can be
addressed by pharmacological and other means. For example, a
patient experiencing dyspnea (difficulty in breathing) might be
helped by the administration of oxygen or by opioids to reduce the
sensation of breathlessness.(22) In some instances, relatively
simple measures, such as dietary changes, can ameliorate a
particular symptom.
While evaluating the patient's physical pain or symptoms,
health care professionals may identify symptoms of depression or
other psychiatric disorders. Psychiatric consultation should be
considered in these cases. As discussed above, major depression is
relatively common among severely ill patients. While often
difficult to diagnose, depression is distinct from normal feelings
of sadness that generally accompany terminal illness. Depression in
terminally ill patients generally can be treated successfully using
antidepressant medications and psychotherapeutic interventions.(23)
In general, symptom management requires a comprehensive
approach. Health care professionals should encourage patients to
talk about their symptoms, formulate and implement means to relieve
each of the multiple symptoms that may be distressing a patient, and
continue to reassess and respond to the patient's needs.(24) As the
World Health Organization notes, "Treatment of multiple symptoms is
demanding. Therapeutic efforts must consider the interaction of
symptoms, the causal factors involved, and maintenance of the
delicate balance between relief, adverse drug effects, and patients'
expectations."(25) WHO and others suggest that these efforts can
best be carried out by an interdisciplinary palliative care team
working together with the patient, family members, and other health
care professionals involved in the patient's care.(26)
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(22) F. DeConno, A. Caraceni, and E. Spoldi, "Pharmacological
Treatment of Dyspnoea in Terminal Cancer Patients," in ny Do We
Care?, Syllabus of the Postgraduate Course, Mcmorial
Sloan-Kettering Cancer Center, New York City, April 24, 1992,
32940.
(23) See A. J. Roth and J. C. Holland, "Treatment of Depression
in Cancer Patients," Primary Care in Cancer 14 (1994): 24-29;
and the discussion in chapter 1.
(24) Ventafridda 140; Coyle et al. 90; J. Schiro, "Symptom
Management and the Hospice Patient," in Washington State Medical
Association, Washington State Physicians Insurance, and
Washington State Cancer Pain Initiative, Pain Management and
Care of the Terminal Patient (Seattle: Washington State Medical
Association, 1992),16S-83.
(25) World Health Organization, Cancer Pain Relief and Palliative
Care, 4142.
(26) World Health Organization, Cancer Pain Relief and Palliative
Care, 42; Ventafridda.
page 42 WHEN DEATH IS SOUGHT
Palliative care experts underscore the importance of a
comprehensive approach that addresses the broad range of needs of
severely ill patients. This approach is often referred to as
continuing care or supportive care.(27) The goals of continuing care
include relief from pain and other distressing symptoms,
psychological and personal support for the patient and family, and
assistance to help the patient maintain his or her daily activities,
independence, and dignity.(28) Initially developed by hospices
caring for the terminally ill, this approach has since expanded to
other health care contexts. Continuing care may be provided to
patients in a variety of health care settings, including hospitals
and home care. Such care may be crucial for patients at any stage
of disease, including those who have just been diagnosed and those
nearing the end of a long illness.(29)
Patients with severe ongoing pain often benefit from a
multidisciplinary approach that helps them to modify behavioral
patterns and increase their ability to function.(30) Chronically ill
patients and others can benefit from rehabilitative therapy,
modification of their home and working environment, and
technological aids such as adapted telephones.(31) For all
-----------------------------------------------------------------
(27) Ventafridda; N.M. Coyle, "Continuing Care for the Cancer Patient
with Chronic Pain,", in Why Do We Care?, Syllabus of the
postgraduate Course, Memorial Sloan-Kettering Cancer Center,
New York City, April 2-4, 1992, 371-77.
(28) World Health Organization, Cancer Pain Relief, 22-23;
Ventafridda; Coyle, "Continuing Care."
(29) World Health Organization, Cancer Pain Relief, 22-23;
Ventafridda; Coyle, "Continuing Care."
(30) Loeser et al.
(31) S. S. Dittmar, Rehabilitation Nursing.- Process and
Application (St. Louis: C. V. Mosby, 1989). For example,
journalist Terry Mayo Sullivan found the loss of the ability to
speak one of the most devastating effects of her ALS. "It was
another cruel irony: I had devoted my professional life to the
business of communication, yet I couldn't make my simplest
desire known." She became angry and frustrated, and wanted to
end her life. Her quality of life improved dramatically when
her husband devised a means for her to communicate via a
personal computer using her neck muscles. "Rather than being
bound by despair, I look forward to living each day, sharing
laughter and joy with my husband, family, friends, and wonderful
caretakers. That's not to say my life is easy: Fighting ALS is
frustrating, heart-breaking, and time-consuming. ... [But] my
life has meaning again, and I plan to live it fully in the time
I have remaining." T. M. Sullivan, "The Language of Love,"
Ladies' Home Journal, March 1994,24-28.
CHAPTER 3 -- CLINICAL RESPONSES TO PAIN AND SUFFERING page 43
severely ill patients, communication and personal support can
be crucial. In the words of one physician suffering from
amyotrophic lateral sclerosis (ALS):
The absence of a magic potion against
the disease does not render the physician
impotent. There are many avenues that can be
helpful for the victim and his family. I am
often surprised and moved by the acts of
kindness and affection that people perform.
Fundamentally, what the family needs is a
sense that people care. No one else can
assume the burden, but knowing that you are
not forgotten does ease the pain.(32)
Current Clinical Practice
Despite dramatic advances in pain management, the delivery of
pain relief is grossly inadequate in clinical practice. The
assessment of one physician a decade ago, that the treatment of
severe pain in hospitalized patients is "regularly and
systematically inadequate," remains true today.(33) Studies have
shown that only 25 to 70 percent of post-operative pain, and 20 to
60 percent of cancer pain, is treated adequately.(34) In one study
of 897 physicians caring for cancer patients, 86 percent reported
that most patients with cancer are undermedicated. Only 12 percent
characterized their pain management training in medical school as
excellent or good.(35). In another study of 687 physicians and 759
nurses, 81 percent of respondents agreed with the statement, "The
most common form of narcotic abuse in the care of the dying is
undertreatment of pain."(36) A recent study reported that patients
with pain that
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(32) D. Rabin, P. L. Rabin, and R. Rabin, "Compounding the
Ordeal of ALS: Isolation from My Fellow Physicians," New
England Journal of Medicine 307 (1982): 506-9.
(33) M. Angell, "The Quality of Mercy," New England Journal of
Medicine 306 (1982): 98-99.
(34) Russell K. Portenoy, presentation to the Task Force, May 13,1992.
(35) J.H. Von Roenn et al.,,"Physician Attitudes and Practice
in Cancer Pain Management: A Survey from the Eastern Cooperative
Oncology Group," Annals of Internal Medicine 119 (1993): 121-26.
(36) M. Z. Solomon et al., "Decisions Near the End of Life:
Professional Views on Life-Sustaining Treatments," American
Journal of Public Health 83 (1993): 18-19. The majority of
respondents expressed dissatisfaction with the current lack of
patient involvement in treatment decisions; most were not
satisfied with the extent to which patients are informed of care
alternatives, staff finds out what critically and terminally ill
patients want, or patients' wishes are recorded in the medical
record.
page 44 WHEN DEATH IS SOUGHT
is not attributed to cancer receive even poorer analgesic
treatment than patients with cancer-related pain. It also found
that individuals treated at centers that served predominantly
minority patients were three times more likely than those treated
elsewhere to receive inadequate pain treatment. Elderly individuals
and women were also more likely than others to receive poor
treatment.(37)
Diverse factors hamper pain and symptom management and pain
relief in particular. The knowledge and attitudes of health care
professionals are a principal barrier. Some studies reveal
significant gaps in health care professionals' knowledge and
training about pain relief.(38) In general, researchers report that
many doctors and nurses are poorly informed about, and have limited
experience with, pain and symptom management. Health care
professionals appear to have a limited understanding of the
physiology of pain and the pharmacology of narcotic analgesics.
Accordingly, many lack the understanding, skills, and confidence
necessary for effective pain and symptom management.(39).
Studies also indicate that physicians and other health care
professionals are excessively and unjustifiably concerned about the
risk of addiction and respiratory depression, even though these
responses to pain medication are extremely rare and can be prevented
when treatment is appropriately monitored.(40) In one study of 2,459
nurses, only 24.8 percent knew that the rate of psychological
dependence in patients treated with narcotic drugs for pain is less
than one percent; 21.6 percent thought that addiction occurs in
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(37) C. S. Cleeland et al., "Pain and Its Treatment in
Outpatients with Metastatic Cancer," New England Journal of
Medicine 330 (1994): 592-96. See also Jacox et al., 138-39.
(38) For example, in one study of 2,459 nurses participating in
workshops on pain, only 25% correctly identified propoxyphene
(Darvon) as a narcotic. M. McCaffery et al., "Nurses' Knowledge
of Opioid Analgesic Drugs and Psychological Dependence," Cancer
Nursing 13 (1990): 21-27. See also J. Hamilton and L. Edgar,
"A Survey Examining Nurses' Knowledge of Pain Control," Journal
of Pain and Symptom Management 7 (1992): 18-26; T. E. Elliot
and B. A. Elliot, "Physician Attitudes and Beliefs about Use of
Morphine for Cancer Pain," Journal of Pain and Symptom Management
7 (1992):14148.
(39) J. L. Dahl et al., "The Cancer Pain Problem: Wisconsin's
Response," Journal of Pain and Symptom Management 3 (1988): S3;
K. M. Foley, The Relationship of Pain and Symptom Management to
Patient Requests for Physician-Assisted Suicide," Journal of Pain
and Symptom Management 6 (1991): 290; personal communication,
Kathleen M. Foley, Chief, Pain Service, Department of Neurology,
Memorial Sloan-Kettering Cancer Center, March 4, 1993.
(4O) Foley, 291-92-1 Solomon et al., 18-20.
CHAPTER 3 -- CLINICAL RESPONSES TO PAIN AND SUFFERING page 45
25 percent or more of these patients.(41) In a more recent
study of practicing physicians, 20 percent incorrectly reported that
addiction is a serious concern in prescribing opioids in cancer pain
management.(42)
Other factors are also significant obstacles for the delivery
of good palliative care. Professional training and patterns of
practice may lead health care professionals to focus on diagnosable
or measurable clinical indicia, such as structural lesions,
laboratory tests, and measurements of vital signs, to the exclusion
of pain. Pain and distressing symptoms may not be entered in the
medical record or clearly displayed. The care of a hospitalized
patient is often fragmented among many health care professionals,
none of whom regards pain management as his or her responsibility.
In addition, accountability for pain and symptom management does not
clearly rest with any one member of the care team, nor are these
areas of clinical practice usually addressed by quality assurance
procedures.(43)
Patients at home can face special difficulties in receiving
pain medication. In some cases, regulations intended to prevent
diversion and illegal use of opioids may make it more difficult for
patients to receive medications. For example, some states limit the
dosage of certain pain medications that a patient can obtain with a
prescription, effectively restricting a patient to one week's
supply. Other regulations designed to prevent abuse may stigmatize
patients by requiring that physicians report patients using such
drugs as "habitual users." Some physicians may fail to prescribe
opioids because of fears about regulatory scrutiny, although it
appears that these concerns may often reflect misunderstanding about
regulatory requirements.(44)
Pharmacy practices may also be a stumbling block for patients
seeking to obtain adequate pain relief. Some pharmacies do not
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(41) McCaffery et al., 21-27. In another study of 318 nursing
staff membcrs, 21% of respondents believed that the risk of
addiction was 50% or grcater. Hamilton and Ugar.
(42) Elliot and Elliot, 144.
(43) Dahl et al.; M. B. Max, "Improving Outcomes of Analgesic
Treatment: Is Education Enough?" Annals of Internal Medicine
113 (1990):885-89,
(44) Dahl et al.; D. E. Joranson, "Federal and State Regulation
of Opioids," Journal of Pain and Symptom Management 5 (1990):
S12-23; -K. M. Foley, personal communication. Some physicians
in New York State point to the requirement for triplicate
prescription forms as a significant barrier to adequate pain
relief practices. Data collected by the Department of Health
about prescribing practices for opioids as well as other drugs
do not support this contention. For further discussion see the
Task Force's recommendations for regulatory change, chapter 8,
pp. 171-75.
page 46 WHEN DEATH IS SOUGHT
stock certain pain relief medications for a variety of
reasons, including low profit margins and the fear of theft.
Pharmacists also may desire to avoid both paperwork and potential
regulatory scrutiny. According to one estimate, only 10 to 20
percent of pharmacies in New York City carry regulated drugs such as
morphine. In some cases, inaccurate knowledge or negative attitudes
may lead pharmacists to convey to patients an exaggerated sense of
the risks of opioid treatment and to discourage them from using
adequate amounts of a prescribed drug.(45)
The attitudes and knowledge of patients and their families are
also crucial for pain management. Patients may not be aware of the
possibilities for managing pain, and so may "suffer in silence."
They also may not know how to obtain desired therapy. Many patients
are misinformed and deeply concerned about the risks of addiction
and side effects. Others may believe that using strong analgesics
will preclude adequate palliation in later stages of the disease.
Patients may also underreport pain to avoid confirming the progress
of disease, because they are fearful of distracting their doctor
from curative therapy, or because they do not want to seem difficult
or demanding to health care professionals. In one study, 45 percent
of patients agreed with the statement, "Good patients avoid talking
about pain." This belief was especially common among older patients
and those with lower levels of education and income.(46)
Finally, patients often face financial barriers in receiving
adequate palliative care. In some cases, insurance coverage will
not pay for hospitalization when needed to control pain or for the
home use of equipment such as infusion pumps. In other cases,
policies may pay for the use of technological interventions but not
for simpler and less expensive medications.(47)
In recent years, various programs have been developed and
implemented to address these barriers. Some focus on education for
health care professionals, including continuing education as well as
training in nursing schools, medical schools, and residencies.
Others attempt to change practice by formulating practice
guidelines, developing clinical models, and establishing quality
assurance procedures. Informational materials and
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(45) Dahl et al.; Foley, 292; K. M. Foley, personal communication.
(46) S. E. Ward et al., "Patient-Related Barriers to Management
of Cancer Pain," Pain 52 (1993): 319-24; Dahl et al. See also
Meliman Lazarus Lake, "Presentation of Findings: Mayday Fund,"
September 1993, and the discussion in chapter 8.
(47) Foley, 292; B. R. Ferrell and M. Rhiner, "High-Tech
Comfort: Ethical Issues in Cancer Pain Management for the
1990s," Journal of Clinical Ethics 2 (1991): 108-112.
CHAPTER 3 -- CLINICAL RESPONSES TO PAIN AND SUFFERING page 47
programs have been developed to educate patients. Some states
have undertaken regulatory changes to increase the availability of
opioids to patients while continuing to guard against drug diversion
and misuse.(48)
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(48) See, e.g.,J.L. Dahl and D.E. Joranson, "The Wisconsin Cancer
Pain Initiative," in Advances in Pain Research and
Therapy, ed. K.M. Foley et al., vol 16 (New York:
Press, 1990), 499-503; J. A. Spross, "Cancer Pain Relief: An
International Perspective," Oncology Nursing Forum 19 (suppl.):
5-11; and the discussion in chapter 8.
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