Chapter 8 - Caring for Severely Ill Patients

			       CHAPTER 8


	  The debate about euthanasia and assisted suicide has

    highlighted pervasive and serious shortcomings in the care of

    terminally ill and chronically ill patients.  These patients, as

    well as others who experience pain and suffering, often receive

    inadequate relief from pain and other debilitating symptoms despite

    the fact that effective treatments are available.(1) In addition,

    many physicians fail to discuss treatment options and the

    possibility of forgoing treatment with patients in a timely and

    appropriate manner, leading to overtreatment and a sense of

    isolation and powerlessness on the part of patients and those close

    to them.

	  The Task Force believes that improving care for terminally and

    severely ill patients is critically important.  It is crucial not

    just as a response to those who seek assisted suicide and

    euthanasia, but as a basic obligation to all patients whose pain and

    suffering could be alleviated with responsible medical care.  The

    Task Force's recommendations for improving the provision of pain

    relief and care for severely ill patients are set forth below.

Decisions About Life-Sustaining Treatment

		    Patients' participation in treatment

	      decisions contributes to their sense of self

	      and well-being.  Physicians should seek

	      patients' participation in decisions about

	      withdrawing or withholding life-sustaining

	      treatment early enough in the course of

	      illness to give patients a meaningful

	      opportunity to have their wishes and values


	  Competent adults have a firmly established legal right to

    decide about treatment.  Unfortunately, this right often is not

    realized in clinical practice, leaving patients feeling helpless and

    fearful about the dying process.  Advance planning and discussion

    about treatment alternatives is the best way to give patients

    greater control over the course of their treatment.


    (1)	  See chapter 3.

    page 154		    WHEN DEATH IS SOUGHT

	  When health care professionals engage in a dialogue with

    patients about treatment, they manifest respect and care for

    patients and enhance patients' sense of dignity and self-worth.  In

    addition, patients' participation in the decision-making process

    fosters decisions that promote their interests and personal values,

    enabling them to guide their course of treatment and to refuse

    unwanted medical interventions.(2) Advance planning for decisions

    about life-sustaining treatment is especially important.  In

    addition to giving patients a greater role in the treatment process,

    advance discussions about life-sustaining treatment offer health

    care professionals the opportunity to assure patients that they will

    continue to receive care to alleviate pain and maximize their

    quality of life, even if they decide to forgo life-sustaining

    measures or aggressive medical treatments.

	  Two types of advance directives are widely used:  a living

    will, which specifies treatment wishes, and a health care proxy,

    which appoints someone (an "agent") to decide about treatment on the

    patient's behalf.(3) Given the difficulties of anticipating in

    advance the patient's medical condition and treatments that will be

    available at some future time, the Task Force on Life and the Law

    strongly endorses the health care proxy as the better approach.(4)

    Individuals can leave treatment instructions to guide their health

    care agent, but they are not required to do so.  However, all those

    who sign a health care proxy should be encouraged to discuss their

    treatment goals and general preferences with their agent.  When

    advising patients, health care professionals should also stress that

    the proxy is not just a way to refuse treatment, but a way to choose


    (2)	  See, e.g., New York State Task Force on Life and the Law,

	  When Others Must Choose:  Deciding for Patients Without

	  Capacity (New York:  New York State Task Force on Life and

	  the Law, 1992); President's Commission for the Study of

	  Ethical Problems in Medicine and Biomedical and Behavioral

	  Research, Deciding to Forego Life-Sustaining Treatment

	  (Washington:  U.S.  Government Printing Office, 1983); R. R.

	  Faden and T. L. Beauchamp, A History and Theory of Informed

	  Consent (New York:  Oxford University Press, 1986); E. D.

	  Pellegrino and D. C. Thomasma, For the Patient's Good (New

	  York:  Oxford University Press, 1988).

    (3)	  For discussion of law on advance directives see chapter

	  4, pp. 50-52.

    (4)	  New York State 'Task Force on Life and the law,

	  Life-Sustaining Treatment:  Making Decisions and Appointing a

	  Health Care Agent (New York:  New York State Task Force on

	  Life and the Law, 1987); T. E. Miller, "Public Policy in the

	  Wake of Cruzan:  A Case Study of New York's Health Care Proxy

	  Law," Law, Medicine and Health Care 18 (1990):  360-67.


    someone the patient trusts to consent to treatment and decide about

    the course of treatment in consultation with physicians.

	  The majority of patients and the public are already convinced

    about the importance of advance planning for medical decisions.(5)

    Studies consistently show that patients would like to discuss

    life-sustaining treatment and advance directives with their

    physician.  Furthermore, many patients expect their physician to

    initiate the conversation.  Relatively few patients, however, have

    actually discussed life-sustaining measures with their doctor.(6)

	  Physicians are often reluctant to discuss life-sustaining

    treatment or advance directives with patients, and wait for patients

    to raise the issue.  This failure to talk with patients appears to

    stem from diverse reasons.  These include unjustified concerns by

    some physicians that the discussion itself will harm the patient,

    discomfort and lack of experience in talking about dying, and a

    failure to recognize the conversation as an integral part of caring

    for dying and severely ill patients.  However, studies show that

    patients do not respond negatively to discussions about forgoing

    treatment or advance directives, nor do they experience an increased

    sense of anxiety or depression.(7) In fact, many patients are

    relieved to discuss the topic, even if they find the conversation


	  Some physicians do not talk with patients about treatment

    wishes or advance directives because of a paternalistic belief that

    physicians can best determine the course of treatment.  However,

    decisions about which treatments would be worthwhile or unacceptably

    burdensome reflect deeply held personal preferences and values.


    (5)	  L. L. Emanuel et al., "Advance Directives for Medical

	  Care - A Case for Greater Use," New England Journal of

	  Medicine 324 (1991):  889-95.

    (6)	  E. R. Gamble, P. J. McDonald, and P. R. Lichstein,

	  "Knowledge, Attitudes, and Behavior of Elderly Persons

	  Regarding Living Wills," Archives of Internal Medicine 151

	  (1991):  277-80; B. Lo, G. A. McLeod, and G. Saika, "Patient

	  Attitudes to Discussing Life-Sustaining Treatment," Archives

	  of Internal Medicine 146 (1988):  1613-15; T. E. Finucane et

	  al., "Planning with Elderly Outpatients for Contingencies of

	  Severe Illness," Journal of General Internal Medicine, 3

	  (1988):  322-35; R. H. Shmerling et al., "Discussing

	  Cardiopulmonary Resuscitation:  A Study of Elderly

	  Outpatients," Journal of General Internal Medicine 3 (1988):

	  317-21; J. S. flaas et al., "Discussion of Preferences for

	  Life-Sustaining Care by Persons with AIDS Predictors of

	  Failure in Patient- Physician Communication," Archives of

	  Internal Medicine 153 (1993):  124148; Emanuel et al.

    (7)	  P. Cotton, "Talk to People About Dying - They Can Handle

	  It, Say Geriatricians and Patients," Journal of the American

	  Medical Association 269 (1993):  321-22-1 1,0, McLeod, and


    page 156		   WHEN DEATH IS SOUGHT

    Studies have shown that physicians' judgements are influenced by

    their own personal views about the value of life with mental or

    physical impairment.(8) More generally, physicians are often poor

    judges of the choices that patients would make for themselves.  In

    several studies, physicians fared no better than chance alone at

    predicting their patients' wishes about treatment.(9)

	  Talking to patients about forgoing treatment and advance

    planning should be understood as an essential part of medical care.

    Ideally these conversations should take place within the context of

    an ongoing patient-physician relationship, beginning when patients

    are healthy.  In general, patients would prefer to talk with their

    physician about advance directives as part of a routine office visit

    in advance of illness.(10) The Patient Self-Determination Act, which

    requires health care facilities to inform patients about their right

    to decide about treatment and to prepare advance directives, also

    presents an opportunity to discuss advance planning as a routine

    matter.  In New York State, all patients admitted to a hospital,

    nursing home, or mental health facility, as well as those enrolled

    in numerous outpatient settings, must receive a copy of the health

    care proxy form.  The health care proxy can serve as a springboard

    for a dialogue between physicians and their patients.

	  Physicians should talk about treatment options and facilitate

    advance planning as soon as possible after serious illness has been

    diagnosed if the discussion has not occurred earlier.

    Unfortunately, physicians often wait until the end stages of illness

    to talk about withdrawing or withholding treatment.(11) This is too


     (8)   N. J. Farber et al., "Cardiopulmonary Resuscitation

	   (CPR):  Patient Factors and Decision Making," Archives of

	   Internal Medicine 144 (1984):  2229-32; L. J. Schneiderman et

	   al., "Do Physicians' Own Preferences for Life-sustaining

	   Treatment Influence Their Perceptions of Patients'

	   Preferences?"  Journal of Clinical Ethics 4 (1993):  28-33.

    (9)	   R. F. Uhlmann, R. A. Pearlman, and K, C. Cain,

	   "Physicians' and Spouses' Predictions of Elderly Patients'

	   Resuscitation Preferences," Journal of Gerontology 43 (1988):

	   M115-21; J. Oustander, A. Tymchuk, and B. Rahbar, "Health

	   Care Decisions Among Elderly Long-Term Care Residents and

	   Their Potential Proxies," Archives of Internal Medicine 149

	   (1989):  1367-72.

    (10)   Shmerling et al., 317-21; Finucane et al., 322-35.

    (11)   For example, a review of patient deaths over two months at

	   a major center for cancer treatment in New York City showed

	   that while DNR orders had been entered for 86% of patients

	   who died of cancer and all patients who died of AIDS, many

	   orders had been entered in the last days of life.  The median

	   interval between entry of the DIR order and death was only

	   six days, despite the fact that treatment for cancer and AIDS

	   usually offers an extended opportunity to discuss treatment

	   options with patients.  R. I. Misbin et al., "Compliance with

	   New York State's Do-Not-Resuscitate Law at Memorial

	   Sloan-Kettering Cancer Center:  A Review of Patient Deaths,"

	   New York State Journal of Medicine 93 (1993):  165-68.  A

	   study at a university hospital in Massachusetts of 389

	   patients with a DNR order who had a cardiac arrest found that

	   76% of patients lacked decision-making capacity when the

	   order was entered, even though only 11% lacked capacity when

	   admitted to the hospital.  S. E.  Bedell et al., "Do-

	   Not-Resuscitate Orders for Critically Ill Patient-, in the

	   Hospital:  How Are They Used and What Is Their Impact?"

	   Journal of the American Medical Association 256 (1986):



    late --many patients lose decision-making capacity as their illness

    progresses.  The discussion may also be more threatening to some

    patients if delayed too late in the course of illness.  Physicians

    should discuss treatment decisions at a time that is sensitive to

    patients' needs, and early enough to give patients a meaningful

    opportunity to think about and express their wishes or appoint

    someone they trust to act as their health care agent.

	  Talking to patients about advance decisions, illness, and

    dying should be addressed in medical education at all stages of

    training and practice.  A 1987 conference on the intellectual basis

    of medicine and its future called for significant changes in the

    medical school curriculum, decrying the failure of medical schools

    to train doctors adequately to conduct a medical interview and to

    talk to patients.(12) According to the American Medical Association

    (AMA), only three of 126 accredited medical schools in the United

    Sates require a class about death and dying.(13) At its 1993 annual

    meeting, the AMA adopted a resolution calling for a curriculum on

    "end-of-life care" for medical schools and residencies.  Recently

    developed courses for medical students and residents include role

    playing, group discussions, and individual conversations with dying


	  Health care providers and other segments of society should

    also conduct public education about advance directives.  Physicians

    are most directly responsible for informing their patients.  Other

    health care professionals can also assist patients to learn about

    these options.  Organizations outside the health care setting should


    (12)  The conference report described a "persistent inability

	  or unwillingness on the part of what is alleged to be a

	  majority of physicians to converse, to listen, to try to

	  understand, to learn about the patient's 'lifeworld,' the

	  natural history of the illness and the search for help, and

	  about the circumstances under which the illness arose and the

	  meaning to the individual of his or her symptoms and illness.

	  If this is not a medical disgrace, it must be close to it.

	  Indeed, lack of interviewing and communication skills is

	  probably the root cause of our malaise vis-a-vis the public

	  and our patients."  K. L.  White, The Task of Medicine

	  (Menlo Park, Cal.:  The Henry J. Kaiser Family

	  Foundation, 1988),33.

    (13)  B. Clements, "Final Journey,"American Medical News,

	  August 16,1993,9-12.

    (14)  Ibid.

    page 158		     WHEN DEATH IS SOUGHT

    contribute to public education; diverse groups in New York State now

    distribute information about advance directives and sample forms,

    including Choice in Dying, the American Association of Retired

    Persons, the New York State Catholic Conference, and Agudath Israel.

    The Task Force and the New York State Department of Health have

    distributed tens of thousands of health care proxy forms.  Social

    groups, religious congregations, and community organizations should

    also sponsor discussions about treatment decisions and encourage

    advance planning.

Improving Palliative Care

		    Health care professionals have a duty to

	      offer effective pain relief and symptom

	      palliation to patients when necessary, in

	      accord with sound medical judgment and the

	      most advanced approaches available.

	  Alleviation of pain and the symptoms of illness or disease

    makes a powerful contribution to the patient's quality of life.  It

    can also speed recovery and provide other tangible medical

    benefits.(15) Physicians and nurses have an ethical and

    professional responsibility to offer effective pain and symptom

    management.  This responsibility must be understood as central to

    the art of medicine and the delivery of medical care.(16) Attention

    to patients' symptoms should not be reserved for the end of life,

    nor should it be a sign that curative efforts have been abandoned.

    Palliative care should be understood to include symptom control at

    all stages of disease.

	  The failure to provide pain relief is a pervasive fault of

    current clinical practice.  It is also one of the most amenable to

    change.  Physicians and nurses who care for terminally ill patients

    have a special responsibility to develop the ability to provide

    effective pain and symptom management.  Hospitals and other health

    care facilities must create an environment in which patients and


    (15)   Acute Pain Management Guideline Pane, Acute Pain

	   Management: Operative or Medical Procedures and

	   Trauma, Clinical Practice Guideline, AHCPR pub no.

	   92-0032 (Rockville Md: Agency for Health Care Policy

	   and Research, U.S. Department of Health and Human

	   Services, Feb. 1992), 5-6.

    (16)   See American Medical Association, Council on Ethical

	   and Judicial Affairs, "Decisions near the End of Life,"

	   Journal of the American Medical Associaltion 267 (1992):

	   2231.  The American Nursing Association states; "The

	   main goal of nursing intervention for dying patients should

	   be maximizing comfort through adequate management of

	   pain and discomfort as this is consistant with the

	   expressed desires of the patient." "Position Statement

	   on Promotion of Comfort and Relief of Pain in Dying

	   Patients," 1991.  See also R.S. Smith, "Ethical Issues

	   Surrounding Cancer Pain," in Current and Emerging

	   Issues in Cancer Pain: Research and Practice, ed. C.R.

	   Chapman and K.M. Foley (New York: Raven Press,1993), 385-92.


    health care professionals regard pain relief as a priority of

    medical care.

	  Skill in prescribing and administering medications is

    essential for palliative care, but it is not sufficient.  In order

    to assess pain, the symptoms caused by illness, and the side effects

    of treatment, health care professionals must communicate with

    patients and listen carefully to their needs.  A patient's personal

    and social outlook as well as the pathological processes of disease

    will affect the patient's experience of pain.  Caring,

    communication, and support are important to patients in any state of

    health or illness.  For terminally and chronically ill patients,

    they are especially vital.

	  For these patients in particular, physicians and nurses must

    seek to provide comprehensive continuing care:  "a system of

    intensive and flexible care, focusing on symptom management, pain

    control, and the changing psychological and social state of the ..

    patient and family."(17) Pain relief is one of the first elements

    that should be addressed in the continuing care of a patient.(18) It

    is also a logical focus for society's initial efforts to improve

    palliative care.  The effective implementation of existing clinical

    knowledge and programs for pain management is almost certain to have

    an immediate impact on relieving suffering.  At the same time, pain

    relief should not be seen as a technical panacea, sufficient to

    respond to the suffering of all patients.  Pain relief is one

    discrete aspect of a larger problem.  The ways in which the health

    care system treats patients and responds to their suffering and

    despair more generally must also be improved, although these are

    admittedly broader and less concrete goals.


    (17)   N. 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 24, 1992, 371.

    (18)   V.  Ventafridda, "Continuing Care:  A Major Issue in Cancer

	   Pain Management," Pain 36 (1989):  138.

     page 160		  WHEN DEATH IS SOUGHT

		    Physicians and nurses must be aware that

	      psychological dependence on pain medication

	      rarely occurs in terminally ill patients.

	      While physical dependence is somewhat more

	      common, proper adjustment of medication can

	      minimize any negative effects.  Concerns about

	      psychological or physical dependence should

	      not prevent patients from receiving

	      appropriate palliative treatments.

	  Failure to provide adequate pain relief stems from diverse

    causes.  One significant reason for the inadequacy of current

    practices is that health care professionals are ill-informed about

    and overly fearful of addiction.  These fears are often shared by

    patients and family members, making them reluctant to seek pain


	  Palliative care experts stress the importance of

    distinguishing among tolerance, physical dependence, and

    psychological dependence on drugs.  Tolerance and physical

    dependence are both common physiological responses to prolonged

    administration of a medication such as morphine.  If tolerance

    develops, a patient requires larger or more frequent doses to

    achieve the same level of analgesia.  In most cases, a patient's

    need for increased amounts of opioids reflects increasing pain from

    the progression of the disease, not ongoing exposure to opioids.  If

    physical dependence occurs, the dosage of opioids must be reduced

    gradually to avoid symptoms of withdrawal when the patient no longer

    requires pain medication.(19) Health care professionals who are

    aware of these phenomena can adjust medication to provide adequate

    pain relief while minimizing and managing side effects.  Neither

    tolerance nor physical dependence should prevent patients from

    receiving needed pain medication.

	  Both tolerance and physical dependence are distinct from

    psychological dependence, or addiction.  Patients receiving opioid

    medications to relieve pain almost never develop psychological

    dependence.(20) In fact, they display responses to opioids that

    differ markedly from those of people who abuse such drugs for

    "recreational" or nonmedical purposes.(21) Psychological dependence


    (19)   American Pain Society, Principles of Analgesic Use in the

	   Treannent of Acute Pain and Cancer Pain, 3d ed.  (Skokie,

	   Ill.:  American Pain Society, 1992), 25-26.

    (20)   0ne study of over 10,000 patients without a prior

	   history of substance abuse who received opioids to treat pain

	   revealed only four documented cases of psychological

	   dependence; another study of similar size reported no such

	   cases.  R. K. Portenoy, "Chronic Opioid Therapy in

	   Nonmalignant Pain," Journal of Pain and Symptom Management 5

	   (1990):  S55.

    (21)   K. M. Foley, "The Relationship of Pain and Symptom

	   Management to Patient Requests for Physician-Assisted

	   Suicide," Journal of Pain and Symptom Management


    can represent a significant issue for one group of patients --those

    who have a history of substance abuse.  Nonetheless, steps can be

    taken to minimize the risk of psychological dependence with these


	  Even if the risk of psychological dependence were much higher

    than it actually is, opioid medications would still be appropriate

    therapy for some patients suffering significant pain, especially

    those who are terminally ill.  For most patients, opioids such as

    morphine represent the most effective means to relieve severe pain.

    While psychological dependence would be an unwelcome side effect, it

    would not outweigh the benefits these medications can provide for

    terminally ill patients.

	  Health care professionals must be educated about both the

    rarity of psychological dependence and the vital importance of

    palliation for patients in severe pain.(23) Misunderstanding about

    the risk of addiction, and corresponding reluctance to provide pain

    medication, deny patients needed and appropriate therapy.  Many

    patients and family members also have an exaggerated sense of the

    likelihood of "addiction" and the harm of psychological or physical

    dependence.  A 1993 study of public opinion about pain relief found

    that 87 percent of respondents expressed concern that they would

    become over-reliant on pain medication, and 82 percent feared that

    they would become addicted.(24) These considerations are extremely

    important to some individuals and will shape their willingness to

    seek or to accept pain relief.  Health care professionals should

    explore these concerns with patients and family members to dispel

    misunderstanding and encourage their acceptance of appropriate pain



    (22)   See 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, Research,

	   March 1994), 134-38; Acute Pain Management Guideline Panel,

	   60-62.  If the risk of psychological dependence is minimized

	   as far as possible consistent with adequate palliation, but

	   remains significant, a prudent judgement weighing the

	   risks and benefits of treatment could still support the

	   provision of needed treatment.  See the discussion

	   regarding the risk of hastening a patient's death, pp. 162-65.

    (23)   Many health care professionals have an inflated sense of the

	   risk of psychological dependence.  See, e.g., R.M. Marks and

	   E. J. Sachar, "Undertreatment of Medical Patients with

	   Narcotic Analgesics," Annals of Internal Medicine 78 (1973):

	   173-81; M. Angell, "The Quality of Mercy," New England Journal of

	   Medicine 3067 (1982): 98-99;and the discussion in chapter 3.

    (24)   Mellman Lazarus Lake, "Presentation of Findings:Mayday

	   Fund," September 1993.

    page 162		    WHEN DEATH IS SOUGHT

	  Patients and family members may also believe that if they

    receive opioids at one stage of the disease, the drugs will be less

    effective at a later stage when the pain is more severe.  While

    patients do develop tolerance to some pain relief medications,

    including opioids, there is no ceiling dosage.  If carefully

    adjusted to minimize side effects, doses can be increased

    substantially to maintain or increase palliation.  Furthermore, the

    physiology of pain is such that smaller doses of analgesia are

    required to prevent pain or treat moderate pain than are needed to

    treat pain that has become severe.(25)

		    The provision of appropriate pain relief

	      rarely poses a serious risk of respiratory

	      depression.  Moreover, the provision of pain

	      medication is ethically and professionally

	      acceptable even when such treatment may hasten

	      the patient's death, if the medication is

	      intended to alleviate pain and severe

	      discomfort, not to cause death.

	  One commonly identified barrier to adequate pain relief is the

    fear of health care professionals that pain medications such as

    opioids may hasten a patient's death.  In a major study of 687

    physicians and 759 nurses, 41 percent of respondents agreed with the

    statement that "clinicians give inadequate pain medication most

    often out of fear of hastening a patient's death."(26)

	  Opioids represent the primary means of pain relief for most

    patients in severe pain.(27) While these medications can slow the

    patient's breathing, when properly used the risk of respiratory

    depression that harms the patient or hastens death is minimal.

    According to one estimate, the risk of respiratory distress with the

    use of opioids is no more than one percent.(28) The risk is low

    because patients develop tolerance that lessens the potential side

    effects of opioids, such as respiratory depression or mental

    cloudiness.  Like other aspects of palliative care, providing

    opioids requires care and continual reassessment of the patient's

    condition.  When the level of medication is carefully adjusted,

    large doses of opioids can be provided safely in any health care

    setting, including a patient's home.


    (25)   See chapter 3.

    (26)   M. Z. Solomon et al., "Decisions Near the End of Life:

	   Professional Views on Life-Sustaining Treatments," American

	   Journal of Public Health 83 (1993):  14-23.

    (27)   See chapter 3.

    (28)   Angell.


	  It is widely recognized that the provision of pain medication

    is ethically and professionally acceptable even when the treatment

    may hasten the patient's death, if the medication is intended to

    alleviate pain and severe discomfort, not to cause death.(29) In an

    unusual case, a dying patient who had not received opioids

    previously might require a large dose to relieve sudden severe pain,

    posing a significant risk of hastening death.  Health care

    professionals should seek to minimize this risk, consistent with

    adequate treatment for pain and other symptoms.  Even if significant

    risk remains, the benefits of treatment will outweigh that risk in

    some cases.

	  Some Task Force members analyze such cases in terms of the

    principle of double effect.  According to this principle, an action

    with both good and evil effects is permitted if the action is not

    intrinsically wrong the agent intends only the good and not the evil

    effect, the evil effect is not the means to the good effect, and

    there is a favorable balance between the good and evil effects.(30)  A

    decision to provide pain medication in the case described above

    would be ethically acceptable under this analysis.  The

    administration of medication is not intrinsically wrong and is

    intended to alleviate the patient's pain, not to hasten the

    patient's death, although the risk of death could be anticipated.

    Respiratory failure is not intended, nor is it necessary to relieve

    pain.  In addition, because the patient is terminally ill and

    experiencing severe pain, the good achieved would outweigh the risk

    of harm.


    (29)   American Medical Association, Council on Ethical and

	   Judicial Affairs, Current Opinions (Chicago:  American

	   Medical Association, 1989), sec. 2.20, P. 13.  A Catholic

	   directive states that "it is not euthanasia to give a dying

	   person sedatives and analgesics for the alleviation of pain,

	   when such a measure is judged necessary, even though they may

	   deprive the patient of the use of reason, or shorten his

	   life."  National Conference of Catholic Bishops, Ethical

	   and Religious Directives for Catholic Health Facilities (St.

	   Louis:  Catholic Health Association of the United States,

	   1975), 13-14, par. 29.  See similarly the Vatican's 1980

	   "Declaration on Euthanasia," in President's Commission,


	   A Jewish authority agrees that "relief of pain is

	   adequate reason to assure palliation therapy, even with

	   attendant risk."  D. M. Feldman and F. Rosner, ed.,

	   Compendium on Medical Ethics, 6th ed.  (New York:  Federation

	   of Jewish Philanthropies, 1984).  See similarly I.

	   Jakobovits, Jewish Medical Ethics, 2d ed.  (New York:  Bloch,

	   1975), 276.  See also New York State Task Force on Life and

	   the Law, When Others Must Choose, 208- 11; President's

	   Commission, 77-82.

    (30)   T. L. Beauchamp and J. F. Childress, Principles of

	   Biomedical Ethics, 3d ed.  (New York:  Oxford University

	   Press, 1989), 127-28.  Evaluation of the balance of good and

	   evil effects is classically phrased in terms of

	   proportionality.  Most instances of causing unintended but

	   foreseeable deaths would be judged as morally wrong on this

	   basis because the negative effect of the patient's death

	   would outweigh any good effects, but exceptions are possible

	   in cases such as the one described.

     page 164		   WHEN DEATH IS SOUGHT

	  Other Task Force members do not accept all elements of this

    principle of double effect but agree that intentions can be a

    significant and decisive factor in evaluating actions.  They note

    that many medical interventions, including high-risk surgery, intend

    to cure the patient or to relieve pain, but entail some identifiable

    and foreseeable risk to life.  Society has granted physicians the

    authority to evaluate the risks and benefits of treatment, to

    recommend a course of treatment, and to provide treatments chosen by

    a patient or a surrogate in pursuit of accepted medical goals.

    Judgments about potentially risky and life-threatening interventions

    undertaken to cure the patient or relieve pain fall squarely within

    the scope of the physician's professional role.(31)

	  Whether a given dose of morphine is appropriate for pain

    relief cannot be determined simply by looking at the number of

    milligrams prescribed, but must be assessed on a case-by-case basis

    using prudent medical judgment.  Large doses may be required to

    relieve pain for some patients, and can be administered without

    undue risk.  If the patient has received increasing doses of

    morphine over time, for example, he or she may sustain a larger dose

    without significant likelihood of harm.

	  A greater risk of side effects, including depressed

    respiration and the possibility of death, would be acceptable for a

    dying patient in severe pain, provided that the patient or those

    deciding on his or her behalf have been informed of and accept this

    risk.  For the rare patient who requires sedation that renders him

    or her unconscious in order to avoid intolerable suffering during

    the end stage of the dying process, the administration of morphine

    to maintain a state of unconsciousness may be medically necessary

    and appropriate.(32) Physicians should discuss these decisions with

    the patient and with other health care professionals caring for the

    patient.  Open discussion of these and other alternatives promotes

    good medical care and can prevent misunderstanding.

	  Similar considerations apply when health care providers do not

    administer medications directly, but write a prescription or give

    patients medicine to use at home.  Physicians regularly provide

    patients with a supply of pain medication that can last for 30 to 90

    days.  In some cases, a physician may perceive a risk that the

    patient will use the medication to commit suicide.  As discussed


    (31)   President's commission, 77-82.

    (32)   In these cases, sedative drugs often are used in

	   combination with the opioid that is being administered to

	   manage pain.


    below, when health care professionals believe that a patient may be

    considering suicide, they should encourage the patient to talk about

    his or her suicidal thoughts, and respond to concerns that may be

    causing distress, such as inadequate symptom control or clinical


	  For patients who express suicidal ideation or pose a risk of

    suicide, the physician must formulate an individualized judgment,

    weighing the potential benefits of palliation in the home setting

    against the risk of suicide.  He or she should consider several

    factors, including the likelihood of suicide, the severity of the

    patient's pain or symptomatic distress, and the possibility of

    alternative treatments or means of providing the medication that

    minimize the risk of suicide.  Physicians must also consider the

    benefit of and need for psychiatric counseling and treatment.

	  A physician may decide that the risk of providing large doses

    of pain medication is too great, given the circumstances of a

    particular case.  In some cases, however, a physician may

    appropriately determine that the benefit of or need for pain

    medication outweighs a risk that the patient will commit suicide.

    These cases are legally and ethically distinct from situations when

    a physician provides drugs with the intention of assisting the

    patient to commit suicide.

		    The education of health care

	      professionals about pain relief and palliative

	      care must be improved.  Training in pain

	      relief and palliative care should be included

	      in the curriculum of nursing schools, medical

	      schools, residencies, and continuing education

	      for health care professionals.  In addition,

	      biomedical research facilities should engage

	      in further research in the physiology of pain

	      and its appropriate relief, both at the basic

	      and the clinical levels.

	  Health care professionals often lack the clinical knowledge

    and experience needed to provide effective palliative care.  These

    deficiencies must be addressed in all contexts in which professional

    education occurs.  In recent years, curricula have been developed

    that can serve as valuable resources.  The most extensive document

    is the Core Curriculum for Professional Education in Pain, developed

    by the International Association for the Study of Pain.(34) The

    American Society of Clinical Oncology and the International Society

    of Nurses in Cancer Care have also developed curricula.(35)


    (33)   See pp. 177-81.

    (34)   International Association for the Study of Pain, Task

	   Force on Professional Education, Core Curriculum for

	   Professional Education in Pain (Seattle: IASP Publications

	   1991).  Information on obtaining this document and other

	   resources appears in Appendix G.

    (35)   American Society of of Clinical Oncology, "Cancer Pain

	   Assessment and Treatment Curriculum Guidelines," Journal

	   of Clinical Oncology 10 (1992):  1976-82; R. Tiffany,

	   "A Core Curriculum for a Post Basic Course in

	   Palliative Nursing Care,"  Palliative Medicine 4 (1990):

	   261-70.  Other resources include textbooks, such as

	   J.J. Bonica, The Management of Pain, 2d ed. (Philadelphia:

	   Lea and Febiger, 1990).  See also the many references

	   provided in the curricula and in the American Pain

	   Society's Principles of Analgesic Use.  Medical and

    page 166		 WHEN DEATH IS SOUGHT

	  Perhaps most importantly, educators must convey to nursing and

    medical students that pain and symptom management are a basic and

    essential component of medical care for professionals in all areas

    of medical practice.  Too often, education about pain relief takes

    place only within departments of anesthesia, where study is focused

    largely on the treatment of post-operative pain.  The relief of pain

    related to terminal and chronic illnesses must also be integrated

    into the medical and nursing curriculum, particularly in specialties

    such as oncology, where the treatment of pain should be a central

    concern.  The importance of pain and symptom management must be

    stressed during medical and nursing school as well as during

    clinical training.  For medical students, education during residency

    is especially important in shaping their future orientation for

    medical practice.  Palliative care must be an integral part of

    residency training.

	  Continuing education for health care professionals is also

    vital.  Many practicing physicians and nurses require continuing

    education about pain relief to remedy deficiencies in their initial

    professional training.  Health care professionals should also be

    regularly informed about advances in the field.  All means of

    continuing education should be used to educate doctors and nurses

    about palliative care, including professional workshops and grand

    rounds in hospitals.

	  In recent years, general guidelines for the treatment of pain

    have been issued by organizations such as the Agency for Health Care

    Policy and Research and the American Pain Society (APS).(36) These

    guidelines offer a valuable framework and resource for improving

    palliative care.  Physicians and nurses may also benefit from

    several easy-to-use references on pain relief that are now

    available.(37) These resources will not be effective, however,


    (36)   Acute Pain Management Guideline Panel; Jacox et al.;

	   American Pain Society.

    (37)   These include the American Pain Society's Principles of

	   Analgesic Use; D. E.Weissman et al., Handbook of Cancer Pain

	   Management, 3d ed. (Madison: Wisconsin Pain Initiative, 1992);

	   and Washington State Medical Association, Pain Management

	   and Care of the Terminal Patient (Seattle; Washington State

	   Medical Association, 1992).


    without both institutional commitment to implement the guidelines

    and effective programs to educate health care professionals.

	  Activities at the state level can also enhance public and

    professional education about pain relief.  For example, in

    Wisconsin, as part of a comprehensive statewide approach to improve

    pain management, the Wisconsin Cancer Pain Initiative has sponsored

    meetings and workshops for professional education and has devised a

    curriculum on cancer pain management.  The Initiative has developed

    a network of almost 300 health care professionals to serve as

    informal resources in their community and as advocates for improved

    pain control.(38)

	  New York's extensive network of biomedical research facilities

    can also play a critical role in improving pain relief and

    palliative care.  These institutions should devote greater resources

    to researching the physiology of pain and its appropriate relief, at

    both the basic and the clinical levels.  Such research is

    particularly important for individuals suffering from chronic pain,

    for whom existing pharmacological treatments may not be appropriate.

		    Hospitals and other health care

	      institutions should explore ways to promote

	      effective pain relief and palliative care and

	      to remove existing barriers to this care.

	  Hospitals and other health care facilities have the

    responsibility to promote high quality medical care within their

    institutions.  This responsibility should encompass the delivery of


    (38)  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., vol16 (New York:  Raven Press,

	  1990),499-503; D. E. Weissman, M. Gutmann, and J. L. Dahl,

	  "Physician Cancer Pain Education:  A Report from the

	  Wisconsin Cancer Pain Initiative," Journal of Pain and

	  Symptom Management 6 (1991):  44548.  One innovation of the

	  Wisconsin Cancer Pain Initiative is the Cancer Pain Role

	  Model program, established in 1990.  D. E. Weissman, J. L.

	  Dahl, and J. W. Beasley, "The Cancer Pain Role Model Program

	  of the Wisconsin Cancer Pain Initiative," Journal of Pain and

	  Symptom Management 8 (1993):  29-35. ne Mayday Fund, a

	  private foundation devoted to relieving pain and associated

	  suffering, funds professional educational programs, including

	  a one-day role model training program for social workers, a

	  two-day course for primary care faculty physicians, and

	  training programs for physicians and nurses ranging from one

	  to four weeks to a one-year fellowship.  Mayday Fund, "1993

	  Role Model Program."

    page 168		 WHEN DEATH IS SOUGHT

    adequate pain and symptom management.  Institutions must clearly

    identify pain and symptom management as a professional

    responsibility of physicians and nurses.(39) They also must provide

    the resources needed for such care, including reference materials,

    in-service training, and the availability of clinicians with

    expertise in palliative care.

	  Facilities also can improve pain management by making

    patients' pain more "visible" for health care professionals.

    One basic way to achieve this goal is to train nurses and physicians

    to ask patients about their pain on a regular basis.  Measures of

    pain intensity and relief should then be recorded in the medical

    record and prominently displayed.

	  Hospitals and nursing facilities should also address

    palliative care in their quality-assurance procedures.  In 1991, the

    American Pain Society proposed "Quality Assurance Standards for

    Relief of Acute Pain and Cancer Pain."(40) Its recommendations are

    designed to improve the treatment of all types of pain.  The APS

    emphasizes the need for systems "to assure that the occurrence of

    pain is recognized and that when pain persists, there is rapid

    feedback to modify treatment."  Among other steps, the standards

    recommend that:

	      (1) health care professionals should

	      record pain and pain relief in the

	      medical chart;

	      (2) each clinical unit should

	      identify levels of pain and relief

	      that would trigger a review

	      ofcurrent pain therapy, and should

	      survey patient satisfaction;

	      (3) institutions should make

	      information about analgesics readily


	      (4) facilities should inform

	      patients that they will receive

	      attentive analgesic care; and

	      (5) facilities should monitor

	      adherence to these practices.


    (39)    A statement by a Task Force on Practitioner-Assisted

	    Suicide at the University of Rochester Medical Center could

	    provide a model for other institutions.  Rejecting the

	    options of assisted suicide and euthanasia, the group

	    unanimously recommended "that greater attention be paid to

	    the clinical problems of the dying patient.  Although these

	    issues are presently covered within the Medical and Nursing

	    School curriculum, [we] would like to see increased attention

	    to these matters at all levels of educational development for

	    our students, staff, residents and faculty."  January 25,


      (40)  The proposal appears as Appendix C below.  American Pain

	    Society, Committee on Quality Assurance Standards, "American

	    Pain Society Quality Assurance Standards for Relief of Acute

	    Pain and Cancer Pain," in Proceedings of the VIth World

	    Congress on Pain, ed.  M. R. Bond, J. E. Charlton, and C. J.

	    Woolf (New York:  Elsevier Science Publishers. 1991).


		    Public education is essential to improve

	      pain relief practices.  Nurses and physicians

	      should create an atmosphere that will

	      encourage patients to seek relief of pain.  To

	      the extent possible, strategies for pain

	      relief should give patients a maximal sense of

	      involvement and control.

	  Many patients believe that they should not discuss their pain

    and symptoms with health care professionals.  They do not realize

    the extent to which symptom palliation is possible, and may feel

    that talking to their doctor or nurse about pain and symptoms would

    be pointless or would be perceived as complaining or weakness.(41)

	  Health care professionals should encourage patients to report

    their symptoms and seek relief from pain.  Awareness of patient

    symptoms, like physical findings and laboratory tests, can

    contribute to formulating a diagnosis and assessing a patient's

    condition.  Alleviating pain and suffering often facilitates the

    healing process and markedly improves the patient's quality of life.

    Health care professionals should also seek the participation of

    family members or others close to the patient in pain relief

    efforts.  While individuals are often reluctant to seek pain relief

    for themselves, they do so more readily for family members.  (42)

	  Whenever possible, pain and symptom management should involve

    patients and give them a sense of control.  For many patients,

    behavioral techniques are helpful.  In some cases in which oral

    medications do not relieve pain sufficiently, patient-controlled

    analgesia using an infusion pump may be possible.  Patient

    participation can contribute to effective analgesia and add to the

    patient's feeling of independence.

	  Materials and programs have been developed to educate patients

    and help them to seek pain relief effectively.  These can serve to

    complement discussions with health care professionals, or compensate


    (41)   Meliman Lazarus Lake.

    (42)   Ibid.

    page 170		  WHEN DEATH IS SOUGHT

    in part for the failure of health care professionals to provide

    information and encourage patients to talk about their pain and

    symptoms.(43) Several organizations are also available to provide

    information and assistance to patients.(44)

		    Insurance companies and others

	      responsible for health care financing should

	      promote effective pain and symptom management

	      and address barriers that exist for some


	  While the personal and financial resources required for

    effective palliative care are more modest than those used for some

    forms of curative therapy, they can be significant.  Some insurance

    companies will pay only for a supply of medication lasting 21 or 30

    days, even when larger quantities are appropriate and it is

    difficult for the patient to obtain a new supply.(45) Some policies

    do not pay for hospitalization required to alleviate pain or for

    appropriate palliative care in the home.(46) Patients without

    medical insurance face far more imposing barriers to receiving

    palliative treatment.  While deficiencies in the provision of

    palliative care are widespread, disadvantaged patients receive the

    least support and care during the dying process as well as other

    stages of illness.

	  The World Health Organization has recommended that health care

    resources for palliative care should be increased, and that

    resources for curative treatments, especially those of questionable


    (43)   The Agency for Health Care Policy and Research has

	   produced two booklets for patients:  Acute Pain Management

	   Guideline Panel, Pain Control After Surgery:  A Patient's

	   Guide, AHCPR pub. no. 92-0021 (Rockville, Md.:  U. S.

	   Department of Health and Human Services, Public Health

	   Service, Agency for Health Care Policy and Research, 1992);

	   and Agency for Health Care Policy and Research, Managing

	   Cancer Pain AHCPR pub. no. 94-0595 (Rockville, Md.:  U. S.

	   Department of Health and Human Services, Public Health

	   Service, Agency for Health Care Policy and Research, 1994).

	   The American Cancer Society and National Cancer Institute

	   have prepared a clear and comprehensive booklet entitled

	   Questions and Answers About Pain Control:  A Guide for People

	   with Cancer and Their Families (1992).  Shorter booklets on

	   cancer pain relief, directed to adult patients, adolescents,

	   and parents of children with cancer, are available from the

	   Wisconsin Pain Initiativc.

    (44)   In the New York City metropolitan area, Cancer Care

	   promotes education about pain relief.  The organization also

	   provides guidance, social services, and financial assistance

	   to cancer patients and loved ones.  The Cancer Information

	   Service of the National Cancer Institute also offers

	   information about pain management and other cancer-related

	   issues to patients, families, health care professionals, and

	   the general public.  See list of resources in Appendix G.

    (45)   Federal regulations do not allow prescriptions for

	   certain drugs such as morphine to be refilled.

    (46)   Foley,  292.


    effectiveness, could be reduced.(47) Others believe that the

    resources needed for effective palliative care could be provided

    without significantly diminishing the provision of curative therapy.

	  Access to palliative care and pain relief must no doubt be

    addressed as part of the broader question of access to health care

    --in particular, in the context of current deliberations on health

    care reform.  The complex issues of access to health care and

    allocation of health care resources are beyond the scope of this

    report.  Nevertheless, it appears that much can and should be done

    to remove financial barriers and to promote effective pain and

    symptom management.

		    New York State statutes and regulations

	      should be modified to improve the availability

	      of medically necessary analgesic medications,

	      including opioids.  This should be done in a

	      balanced manner that acknowledges the

	      importance of avoiding drug diversion.

	  Statutes and regulations governing controlled substances must

    strike a careful balance between two important public health goals.

    On the one hand, the law must encourage the availability of

    analgesic medications, including opioids, for individuals who need

    them for legitimate medical uses.  On the other hand, the law should

    prevent diversion of these same drugs to persons who will abuse


	  Experience has shown that certain provisions of current New

    York law pose obstacles to the availability of medication to relieve

    pain or severe discomfort.  The Task Force believes that these

    provisions should be modified to enhance the appropriate care and

    treatment of seriously ill patients.  Specifically, the Task Force

    recommends the following changes to New York statutes and


	  First, statutes and regulations governing controlled

    substances should include a positive statement that opioids and

    similar drugs have a useful and legitimate medical purpose and that

    they must be available to patients whenever medically appropriate.

    Such a statement --which is already present in federal statutes and

    regulations --would undercut the prevailing public perception that

    controlled substances are inherently harmful, and would provide


    (47)  World Health Organization, Cancer Pain Relief and

	  Palliative Care:  Report of a WHO Expert Committee, WHO

	  Technical Report Series 804 (Geneva:  World Health

	  Organization, 1990),

    page 172		  WHEN DEATH IS SOUGHT

    legal support for policies that actively encourage medical use of

    these drugs.(48) In addition, an affirmative statement supporting

    the use of controlled substances in the medical context might lessen

    the stigma attached to the provision and use of analgesic

    medications, further reducing impediments to the legitimate use of

    these medications.

	  Second, the Task Force urges the legislature to eliminate the

    requirement that health care practitioners report addicts and

    habitual users to the Department of Health.(49) This requirement

    stigmatizes individuals who use controlled substances for medical

    purposes.  In addition, it places physicians in an awkward position

    in relation to patients they must report, and may cause some

    individuals to refuse needed pain relief.  The Task Force also

    recommends that the legislature modify the definition of the terms

    "addict" and "habitual user" in the Public Health Law to exclude

    patients who use controlled substances in a medically appropriate

    manner.(50) By applying such labels to patients who use controlled

    substances for the relief of pain or severe discomfort, the law

    unjustifiably gives credence to physicians' and patients' fears that

    patients will become dependent on medically necessary drugs.(51) As

    discussed above, these fears are largely unfounded.(52) It is also

    inappropriate to apply a term so charged with negative connotations

    to patients who use drugs for legitimate medical purposes.(53)

	  Third, the Task Force proposes that barriers to obtaining

    long-term supplies of medically necessary controlled substances

    should be modified.  These barriers in existing statutes and


      (48)  See Controlled Substanecs Act, 21 U.S.C. 801 (1993) ("Many

	    of the drugs included within this title have a useful and

	    legitimate medical purpose and are necessary to maintain the

	    health and general welfare of the American people."); 21

	    C.F.R.  Part 1306.07(c) (1993) ("This section is not intended

	    to impose any limitation on a physician or authorized

	    hospital staff to ... administer or dispense (including

	    prescribe) narcotic drugs to persons with intractable pain in

	    which no relief or cure is possible or none has been found

	    after reasonable efforts.).

     (49)   N.Y.  Public I lealth Law 3372 (McKinney 1985); 1 0

	    N.Y.C.R.R.  80.108.

     (50)   N.Y. Public Health law  3302(l) & (17) (McKinney 1985).

     (51)   According to a 1993 national survey, 82% of all Americans

	    fear that they would become addicted to pain medication, and

	    87% fear that they would become over-reliant on it, Mellman

	    Lazarus Lake.

     (52)   See the discussion in this chapter and in

	    chapter 1.

     (53)   Significantly, the federal definition of the term "addict"

	    does not include patients who use controlled substances to

	    relieve chronic pain.  See D. E. Joranson, "Federal and State

	    Regulation of Opioids," Journal of Pain and Symptom Management

	    5 (1990):  S12, S14.


    regulations can impose severe burdens on patients who live far away

    from a pharmacy that stocks controlled substances, or whose

    insurance plans require the use of mail-order pharmacies that delay

    access to the medication.(54) For example, although physicians may

    prescribe a three-month supply of certain controlled substances to

    relieve pain for patients over 65 who suffer from chronic and

    incurable diseases,(55) chronically and incurably ill patients under

    age 65 must obtain a new prescription for pain medication every 30

    days.(56) This regulation should be eliminated.(57) Likewise,

    current regulations permit a physician to issue an additional

    prescription for Schedule II substances only when the patient has

    exhausted all but a seven-day supply of the previous

    prescription.(58) The Department of Health should modify this

    prohibition to permit the earlier issuance of second prescriptions

    in hospital pharmacies, or prescriptions for particular patients

    based on specified medical criteria.

	  Fourth, the Task Force urges the Department of Health to

    consider regulations that would facilitate the use of controlled

    substances on a trial basis.  Patients react differently to pain

    medications, and often physicians can determine the appropriate

    medication for a patient only after trial and error with a variety

    of dosages or drugs.  If patients must purchase a full prescription

    of each medication they try, the costs can be prohibitive.  The

    Department of Health should therefore evaluate the benefits of

    permitting pharmacies to fill prescriptions partially for controlled

    substances, as is currently permitted in the hospice setting.(59)

    This policy would allow patients to try a drug for a short time

    period without purchasing the full prescription.

	  Finally, the legislature and the Department of Health should

    assess the administrative and economic feasibility of eliminating

    the triplicate prescription system for controlled substances.  Under


    (54)   R. K. Portenoy, "The Effect of Drugs Regulation on the

	   Management of Cancer Pain," New York State Journal of

	   Medicine 91 (1991):  16S.

    (55)   10  N.Y.C.R.R.  80.67(d)(1)(iii) & 80.69(d)(1)(iii).

    (56)   10 N.Y.C.R.R.  80.67(c).

    (57)   The Department of Health should also study the need and

	   appropriateness of explicitly allowing a three-month supply

	   of controlled substances for the relief of severe discomfort,

	   as well as pain.

    (58)   10 N.Y.C.R.R.  80.67(c); 80.69.  Patients may refill

	   prescriptions for other medications earlier than seven days

	   prior to the date the previously dispensed supply would be

	   exhausted only if specifically authorized by the prescriber.

	   N.Y.  Public Health law  3339 (McKinncy 1985).

    (59)   10 N.Y,C.R.R.  80.73.

    page 174		  WHEN DEATH IS SOUGHT

    this system, copies of each prescription are retained by the

    physician and the pharmacy and an additional copy is sent to the

    Department of Health.  Many physicians have criticized the

    triplicate prescription program as unnecessarily intrusive and as a

    deterrent to the prescription of medically useful controlled

    substances.(60) Although these criticisms are not supported by

    empirical data,(61) a simplified system might assuage physicians'

    concerns while retaining the record-keeping benefits that the

    triplicate system provides.  One alternative to the triplicate forms

    would be a single serialized form that pharmacies could transmit

    electronically to the Department of Health.  The Department of

    Health and others should study the feasibility of this and other

    reporting systems with the goal of replacing the current triplicate


	  While statutory and regulatory reform is important, changes in

    the law will not, in themselves, eliminate the underutilization of

    medically necessary controlled substances.  Barriers to effective

    pain relief arise from many sources, including lack of information

    on the part of health care professionals and insufficient

    professional commitment to palliative care.  Along with the

    modification of statutes and regulations, education and outreach

    will be essential to eradicate these barriers.  To this end,

    professional organizations should play an active role in clarifying

    the ethical and legal acceptability of prescribing controlled

    substances for medical purposes.  In particular, the perceived risk

    of sanctions often bears little relation to the actual "risks"

    of prescribing medications in accord with accepted medical

    standards.  While clarification from the Department of Health and an

    affirmative statement of the value of narcotic analgesics will be

    valuable, these steps will have little affirmative impact unless

    health care professionals are informed and responsible about any

    clarification that is offered.


    (60)   See P. B. Farnsworth, "Triplicate Prescription in New

	   York:  History and Review," New York State Journal of Medicine

	   91 (1991):  SS; Portenoy, 16S ("The multiple copy

	   prescription is a tangible reminder to the physician of the

	   intense scrutiny that accompanies the prescription of these

	   drugs, and awareness of this scrutiny may ... increase the

	   clinician's perception that some personal risk accrues from

	   the administration of these agents to patients.").

    (61)   Criticisms of the triplicate prescription program tend

	   to focus on the Department of Health's 1987 investigation of

	   an oncologist who had failed to write dates and patient ages

	   on all of his forms.  See, e.g., Joranson, S17.  This

	   investigation appears to have been an isolated incident and

	   does not provide evidence of a systematic problem.  In fact,

	   data compiled by the Department of Health suggest that the

	   triplicate prescription system has not deterred physicians from

	   prescribing controlled substances for medical purposes.

	   Between 1980 and 1991, for example, annual prescriptions for

	   morphine increased from 5,555 to 40,164.  J. D. Eadie,

	   Director, Division of Public Health Protection, New York State

	   Department of Health, "Memorandum to the New York State Task

	   Force on Life and the Law," August 13, 1993.


	  Pharmacists must also be educated about the importance of

    providing controlled substances for pain relief and their

    responsibility to do so.  At a minimum, they should be encouraged to

    stock medically necessary controlled substances routinely.  If

    encouragement fails, the Department of Health should consider

    regulations aimed at promoting availability, such as a requirement

    that pharmacies provide controlled substances within 24 hours of a

    patient's request.

Diagnosing and Treating Depression

		    Health care professionals should be

	      familiar with the characteristics of major

	      depression and other common psychiatric

	      illnesses, as well as the possibility for

	      treatment.  They must be sensitive to the

	      special factors complicating the diagnosis of

	      these conditions among the elderly and the

	      terminally ill.  Physicians must also be

	      trained to distinguish major clinical

	      depression from the sadness and temporary

	      reactive depression that often accompany

	      terminal illness.  Major clinical depression

	      is generally treatable and can be treated

	      effectively even in the absence of improvement

	      in the underlying disease.  Patients should

	      also receive appropriate treatment for less

	      severe depression that often accompanies

	      terminal illness.

	  Depression is frequently underdiagnosed and undertreated,

    especially for the elderly and for patients with chronic or terminal

    medical conditions.(62) Health care professionals must be aware of

    the risk factors for depression and the common symptoms that

    patients experience when suffering from depression.  Risk factors

    for major depression include personal or family history of

    depressive disorder, prior suicide attempts, female gender, lack of

    social supports, stressful life events, and current substance



    (62)   See chapter 1 for complete discussion.

    (63)   Depression Guideline Panel, Depression in Primary Care,

	   vol. 2, Treatment of Major Depression, Clinical Practice

	   Guideline, no. 5, AHCPR pub. no. 93-0551, (Rockville, Md.:

	   U. S. Department of Health and Human Services, Public Health

	   Service, Agency for Health Care Policy and Research, April

	   1993), 1.

    page 176		   WHEN DEATH IS SOUGHT

	  Major depression is marked by the presence of symptoms for at

    least two weeks, almost every day, all day.  These symptoms include

    either depressed mood (feeling sad or blue) or loss of interest in

    activities that are normally pleasurable.  In addition, patients

    with depression experience at least three of the following symptoms:

	      (1) significant weight loss/gain,

	      (2) insomnia/hypersomnia,

	      (3) psychomotor agitation/retardation,

	      (4) fatigue,

	      (5) feelings of worthlessness (guilt),

	      (6) impaired concentration (indecisiveness),

	      (7) recurrent thoughts of death or suicide.

	  Other physical or psychological symptoms such as headaches,

    aches and pains, digestive problems, sexual problems, pessimistic or

    hopeless feelings, and anxiety may also accompany depression.

	  Patients with serious medical conditions, especially terminal

    illnesses, may develop a range of depressive symptoms short of major

    depression.  Experience with cancer patients indicates that with the

    initial diagnosis, patients often respond with shock and disbelief

    or denial of the diagnosis.  Subsequently, patients may experience

    sad or depressed moods, anxiety, and other symptoms commonly

    associated with depression.  Symptoms usually dissipate within two

    to three weeks once the patient is receiving treatment or has

    adjusted to his or her situation.  These episodes, referred to as

    "reactive depressive symptoms" or "adjustment disorder with

    depressed symptoms," can reoccur at various times during the course

    of an illness.(64)

	  Physicians and other health care professionals must be able to

    assess depression and the risk of suicide.  Since many individuals

    do not seek out mental health professionals to treat depression,

    primary care physicians and physicians treating patients with

    terminal and chronic illness should evaluate patients for depression

    during a regular medical visit.(65) Diagnosing the physical symptoms

    of depression may be especially difficult for patients with

    coexisting medical conditions because some physical symptoms

    associated with depression may be caused by the illness or



    (64)   A.J. Roth and J.C. Holland, "Treatment of Depression," Primary

	   Care in Cancer 14 (1994):24-29.

    (65)   Appendix E contains a series of questions that can assist

	   physicians in evaluating the patient and determining the

	   presence and severity of depression.

    (66)   Dr. William S. Breitbart, Assistant Attending Psychiatrist,

	   Psychiatry Service, Department of Neurology, Memorial

	   Sloan-Kettering Cancer Center, presentation to the

	   New York State Task Force on Life and the Law, May 13, 1992.


	  More than 80 percent of patients diagnosed with major

    depression can be effectively treated.(66) The National Institutes

    of Health (NIH) Consensus Panel on Depression in Late Life lists

    five goals for treating depression:

	    (1) decreasing symptoms of depression,

	    (2) reducing risk of relapse and recurrence,

	    (3) increasing quality of life,

	    (4) improving medical health status, and

	    (5) decreasing health care costs and morrtality.(67)

    The initial phase of treatment should attempt to bring about a

    remission of the symptoms.  Following remission, therapy should

    ordinarily be continued for the next six to nine months to prevent

    relapse and recurrence.  Finally, for some patients, a third phase

    of maintenance therapy will be necessary beyond the first year of

    treatment to prevent further relapse (68).

	  Health care professionals must understand that even in

    patients with coexisting medical conditions, major depression can be

    successfully treated through pharmacological treatments and

    psychotherapy.  In fact, experts contend that cancer patients often

    respond to lower dosages of antidepressants and in a shorter

    interval of time than physically healthy patients with

    depression.(69) In contrast, most elderly patients who are depressed

    respond to treatment more slowly than younger patients.  Patients

    diagnosed with major depression should be referred to a psychiatrist

    for appropriate treatment.  The primary care physician and other

    professionals such as social workers, psychologists, and clergy, may

    provide critical support to patients who experience depressive

    symptoms without major depression.

Responding When a Patient Requests Assisted

Suicide or Euthanasia

		    It is common for terminally ill patients

	      to have suicidal ideation, although patients

	      rarely act on such thoughts.  Physicians

	      should create an atmosphere within which

	      patients feel comfortable expressing suicidal

	      thoughts.  Discussion with a physician or

	      other health care professional about suicide

	      does not prompt suicide; on the contrary,

	      talking with health care professionals often

	      decreases the risk of suicide.

	  Suicidal thoughts and suicidal actions represent distinct

    phenomena, especially for terminally ill patients such as those with

    acquired immunodeficiency syndrome (AIDS) or cancer.  Many patients

    with advanced disease think about suicide at some point in the

    course of their illness.  These thoughts usually stem from


    (67)   NIH Consensus Development Panel on Depression in Late Life,

	   "Diagnosis and Treatment of Depression in Late Life," Journal

	   of the American Medical Association 268(1992):1018-24.

    (68)   G. J. Kennedy, "Depression in the Elderly," in Psychiatry

	   1993, ed.  R. Michaels et al., vol. 2 (Philadelphia:  J. P.

	   Lippincott, 1993), 1-1 1.

    (69)   Roth and Holland,

    page 178		   WHEN DEATH IS SOUGHT

    suffering, depression, and an overwhelming sense of hopelessness or

    helplessness.  For some patients, framing the option of suicide may

    provide a sense of control:  "If it gets too bad, I always have a

    way out."  However, few patients who experience suicidal ideation

    actually attempt or complete suicide.  When offered personal support

    and palliative care, most patients adapt and continue life in ways

    they might not have anticipated.  Clinicians often observe that

    patients are able to sustain and cope with tremendous suffering as

    they approach death.  Life often becomes more precious as it becomes


	  Nevertheless, suicidal thoughts must be taken seriously.  They

    reflect deep personal suffering.  A patient's suicidal thoughts may

    indicate a worsening of disease or insufficiencies in current

    therapy.  In many cases they are accompanied by treatable

    psychiatric conditions.  Health care professionals should actively

    explore indications of suicidal thinking and should respond

    appropriately when a patient expresses such thoughts.

	  It is well-established that talking about suicidal thoughts

    does not increase the risk of suicide and, indeed, generally

    decreases that risk.  A physician or nurse who learns of a patient's

    suicidal thoughts can often help the patient address the factors

    leading to those thoughts.  Acknowledging the patient's concerns and

    manifesting empathy and care can itself be therapeutic.  Conversely,

    the failure of health care professionals to create an environment in

    which patients feel comfortable talking about suicide can increase

    the patient's suffering and sense of isolation, making suicide more

    likely in some cases.(71)

	  Some health care professionals, like other people, find it

    extremely difficult to talk about suicide with patients.  Medical

    and nursing training often does little to prepare them for this

    responsibility.  Physicians and nurses who feel unable to discuss

    suicide with a patient must involve another health care professional

    who can provide this critical aspect of patient care.  In addition,

    health care professionals must determine if psychiatric consultation

    is appropriate and necessary.  At a minimum, all health care

    professionals must be sensitive to potential suicidal ideation.

    Explicitly or tacitly discouraging a patient from expressing

    suicidal ideation can make it more difficult for a patient to cope

    with his or her thoughts and feelings.


    (7O)   William Breitbart, "Cancer Pain and Suicide," in Advances

	   in Pain Research and Therapy, ed.  K. Foley, J. J. Bonica.

	   and V. Ventafridda, vol. 16 (New York:  Raven Press,


    (71)  Ibid.


		    When a patient requests assisted suicide

	      or euthanasia, a health care professional

	      should explore the significance of the

	      request, recognize the patient's suffering,

	      and seek to discover the factors leading to

	      the request.  These factors may include

	      insufficient symptom control, clinical

	      depression, inadequate social support, concern

	      about burdening family or others, a sense of

	      hopelessness, spiritual despair, loss of

	      self-esteem, or fear of abandonment.  These

	      issues should be addressed in a process that

	      involves both family members and health care


	  Any response to a request for assisted suicide or euthanasia

    is morally weighty.  A ready agreement to the request could confirm

    a patient's sense of despair and worthlessness.  An attempt to

    ignore or evade the request may make a patient feel that his or her

    suffering is not taken seriously, adding to a sense of helplessness.

    Clinicians who hold diverse views about assisted suicide and

    euthanasia generally agree about the ways in which a physician or

    nurse should respond when a patient makes such a request.  All

    concur that in most cases patients' concerns can be addressed in

    ways other than assisted suicide or euthanasia.(72)

	  A request for assisted suicide or euthanasia may arise from

    diverse causes, including inadequate symptom control, clinical

    depression, a lack of social or financial resources, concern about

    burdening family or others, spiritual crisis, hopelessness, loss of

    self esteem, or fear of abandonment.  In many cases, multiple

    factors contribute to a patient's sense of despair.  Physicians,

    nurses, social workers, and other health care professionals must be

    prepared to listen carefully and explore the meaning of the request.

    This interaction can identify the clinical treatment or psychosocial

    support the patient may need.  The process of communication itself

    often helps the patient feel less alone and desperate.

	  Some of the factors leading to a patient's suffering and

    desire for suicide are clearly within the purview of medical

    practice.  These can and must be addressed.  As discussed throughout


    (72)   T. E. Quill, "Doctor, I Want to Die," Journal of the

	   American Medical Association 270 (1993):  872, See also N.

	   Coyle, "The Euthanasia and Physician-Assisted Suicide

	   Debate:  Issues for Nursing," Oncology Nursing Forum 19, no. 7

	   suppi.  (1992):  45; J. Teno and J. Lynn, "Voluntary Active

	   Euthanasia:  'The Individual Case and Public Policy,"

	   Journal of the American Geriatrics Society 39 (1991):

	   827-30-1 Breitbart, "Cancer Pain," 409-10.

    page 180		    WHEN DEATH IS SOUGHT

    the report, many patients receive inadequate pain and symptom

    management.  An acceptable level of pain relief can be provided to

    almost all patients.  Furthermore, many terminally ill patients,

    especially those who consider actively ending their lives, are

    clinically depressed.  Their depression, like that of others,

    generally responds to psychiatric treatment.

	  Interventions to increase a patient's functioning can also

    serve to reduce suffering and improve the quality of life.  For

    example, an individual suffering from quadriplegia can benefit from

    rehabilitative therapy and from devices to enhance their

    mobility.(73) For some individuals suffering from amyotrophic

    lateral sclerosis (ALS), the ability to communicate may be most

    crucial and can be enhanced with technological assistance.(74)

    Treatment for symptoms such as severe nausea or difficulty breathing

    may also significantly improve the patient's quality of life.(75)

	  Other types of suffering are more difficult to address.

    Responding to a patient's personal and psychosocial needs can

    usually be accomplished best with the participation of family

    members and others close to the patient.  Professional colleagues

    can also offer valuable assistance.  A social worker can address

    psychosocial problems.  A chaplain can respond to a patient

    undergoing a spiritual crisis.  Nonetheless, referral to a social or

    spiritual "specialist" will rarely suffice to resolve a patient's

    concerns.  The process of dying, or chronic illness, is complicated

    and profound.  The patient's experience of suffering often has

    deeply personal meanings or sources.(76) Without the ongoing

    involvement of health care professionals and others close to the

    patient, the patient will feel abandoned.(77)


    (73)   D. R. Patterson et al., "When Life Support is Questioned

	   Early in the Care of Patients with Cervical-Level

	   Quadriplegia," New England Journal of Medicine 328 (1993):

	   506-9; Sharon S. Dittmar, Rehabilitation Nursing.- Process

	   and Application (St, Louis:  C. V. Mosby, 1989).

    (74)   T. M. Sullivan, "The Language of Love," Ladies' Home Journal,

	   March 1994,24-28.

    (75)   See chapter 1.

    (76)   As Arthur Kleinman writes of those facing chronic illness:

	   "in the long, oscillating course of chronic disorder, the

	   sick, their relatives, and those who treat them become aware

	   that the meanings communicated by illness can amplify or

	   dampen symptoms, exaggerate or lessen disability, impede or

	   facilitate treatment.  ...  However, these understandings

	   often remain unexamined, silent emblems of a covert reality

	   that is usually dealt with indirectly or not at all."  The

	   Illness Narratives:  Suffering Healing and the Human

	   Condition (New York:  Basic Books, 1988), 9.

    (77)   As ethicist Paul Ramsey explains:  "If the sting of death

	   is sin, the sting of dying is solitude.  What doctors should

	   do in the presence of the dying is only a special case of

	   what should be done to make a human presence felt to the

	   dying.  Desertion is more choking than death, and more

	   feared. The chief problem of dying is how not to die alone."

	   The Patient as Person (New Haven:  Yale University Press,

	   1970), 134.  The importance of the personal and psychosocial

	   support provided by health care professionals is discussed in

	   M. A. Boyle and R. L. Ciuca, "Amyotrophic Lateral

	   Sclerosis,"American Journal of Nursing 1 (1975):  66-68.


	 Marashaling personal and professional resources will often

    help patients even in the most difficult circumstances.  In the words

    of a director of a support care program:

		    Clearly defined goals, a time frame for

	      assessing the effectiveness of a treatment

	      measure, continuity of care, and working with

	      the family as a unit all help to lessen the

	      feelings of abandonment and hopelessness that

	      frequently accompany requests for euthanasia

	      or physician-assisted suicide.(78)

	  Even more so than with conventional medical interventions,

    attempts to address the concerns that lead a patient to request

    suicide assistance or euthanasia carry no guarantee of success.

    Medicine, and even an expanded program of supportive care, will not

    eliminate all suffering.  Still, conscientious pain management and

    supportive care can do much to alleviate suffering.  In most cases,

    they can help the patient achieve a resolution that he or she finds

    tolerable.  In all cases, they manifest a commitment not to abandon

    the patient.


     (78)   Coyle, "The Euthanasia and Physician-Assisted Suicide

	    Debate," 45.

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