Chapter 3 - Clinical Responses to Pain and Suffering

			       CHAPTER 3


			   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


    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)


       (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.,



	  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


    (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


	  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.


    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


	  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


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


   (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.


    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)


	  (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,


	  (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.


    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


    (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


    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


	  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


     (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.


    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


	  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


	  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


    (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


    (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.


    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)


    (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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