CHAPTER 8
CARING FOR SEVERELY ILL PATIENTS page 153
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
respected.
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.
CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 155
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
difficult.
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
Saika.
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):
233-37.
CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 157
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
patients.(14)
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.
CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 159
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
relief.
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
CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 161
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
patients.(22)
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
medication.
------------------------------------------------------------------------
(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.
CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 163
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,
304-5.
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.
CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 165
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
depression.(33)
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).
CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 167
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
available;
(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,
1994.
(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).
CHAPTER 8 --CARING FOR SEVERLY ILL PATIENTS page 169
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
patients.
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.
CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 171
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
them.
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
regulations.
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.
CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 173
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
system.
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.
CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 175
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
abuse.(63)
-----------------------------------------------------------------------
(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
medications.
---------------------------------------------------------------------------
(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.
CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 177
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
shorter.(70)
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.
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(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,
1990),400401.
(71) Ibid.
CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 179
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
professionals.
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
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(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)
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(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.
CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 181
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.
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(78) Coyle, "The Euthanasia and Physician-Assisted Suicide
Debate," 45.
Pages 182, 183, 184 Intentionally Left Blank
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