Chapter VII: Palliation
The experience of and response to pain
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Pain
•
Pain and suffering
•
Care givers’ responses to patients’ pain
The moral imperative to relieve pain: Autonomy, beneficence and consent
Physician-assisted suicide
•
Care giver’s role
•
Doctrine of double effect
•
Supreme Court decisions
The end of life and palliative care
•
Background
•
Evolution of the care giver role
•
Goals of care
•
Palliative care definition and philosophy
Mrs. H has been a resident of a long-term care facility for many years, during which her
COPD, diabetes and osteoarthritis have become more severe. She is now confined to a
wheelchair because of the intense pain in her back and hips, which she often describes as
excruciating. The mild analgesics, including Tylenol, that have been prescribed do not
bring relief and she has become increasingly immobilized, withdrawn and depressed.
When her nephew, Dr. A, visited recently, he was alarmed by the deterioration he saw in
his aunt. The person he remembered as vibrant and active was now saying, “I have no
life. All I have is pain.” When he asked what she would like to be able to do that the
pain prevented, he expected her to talk about missing her hiking, gardening and painting.
Instead, she replied, “Sleep. I don’t remember the last time I was able to sleep without
being awakened by pain.” Dr. A requests a meeting to discuss his aunt’s pain
management.
I.
The Experience of and Response to Pain
A.
Pain
Despite its subjective quality, the experience of pain is both real and reverberating. As
one writer describes it,
Pain is dehumanizing. The severer the pain, the more it overshadows the patient’s
intelligence. All she or he can think about is pain: there is no past pain-free
memory, no pain-free future, only the pain-filled present. Pain destroys
autonomy: the patient is afraid to make the slightest movement. All choices are
focused on either relieving the present pain or preventing greater future pain, and
for this, one will sell one’s soul. Pain is humiliating: it destroys all sense of selfesteem accompanied by feelings of helplessness in the grip of pain, dependency
on drugs, and being a burden to others. In its extreme, pain destroys the soul
itself and all will to live. (E.L. Lisson, “Ethical Issues Related to Pain Control,”
Nursing Clinics of North America, 22 (1987): 654.)
In the face of advances in science and technology, one care giver mandate remains
constant and compelling—the relief of pain. Even when cure is impossible, the duty of
care includes palliation. Moreover, the centrality of this obligation is both unquestioned
and universal, transcending time and cultural boundaries. People often distinguish
between physical and spiritual or emotional pain, that is, between pain that is
physiological or psychological in origin. However we speak of it, the relief of pain is
regarded as a primary moral goal of medicine because of its intimate connection with
patient well-being.
Although universally acknowledged, pain is a complex phenomenon for both the patient
and the physician, influenced as much by personal values and cultural traditions as by
physiological injury and disease. Indeed, if the perception of and response to pain are to
be understood in a useful way, they must be examined in the context of culture, gender,
power imbalances, morality and myth. These factors take on special importance in the
health care setting, where pain becomes an interpersonal experience between the sufferer
and the reliever. How pain is signified by the patient and understood by the provider
determines in large measure how it is valued and, ultimately, how it is treated.
B.
Pain and Suffering
An important theme that threads its way through the bioethics analysis is the distinction
between pain and suffering. In a classic 1982 article called “The Nature of Suffering and
the Goals of Medicine,” Dr. Eric Cassell wrote about pain as a physiological response of
the body and suffering as an existential assault on the person. He described how one
could experience pain without suffering when the goal is a noble or joyous one, using as
an example the pain of childbirth. Conversely, a person can suffer without physical pain
when he feels the disintegration of his personhood and his sense of control.
When pain and suffering are closely related, Cassell claims, it is for one or more of the
following reasons: the pain is overwhelming; the patient does not believe the pain can be
controlled; the source of the pain is unknown; or the pain is apparently without end.
Suffering is a threat, not merely to patients’ lives, but also to “their integrity as persons.”
Only when one’s continued existence is threatened in this way can the experience of pain
properly be said to cause suffering. Thus, when patients are told their pain cannot be
managed, diminished, or controlled, they frequently experience suffering, because they
believe their personal intactness is jeopardized. In some instances, emotional isolation
adds to patients’ suffering, as when the physician suggests that the pain is only imagined.
It is impossible to spend any time in a clinical setting without recognizing this distinction
and it is one of the key issues in bioethics consultation. Patients are often asked to endure
pain in the pursuit of a cure or a remission and, in weighing the benefits and burdens of a
proposed treatment, the balance of current discomfort for future relief seems an ethically
appropriate one. The calculus is different when the intervention will impose pain or
suffering with no benefit.
Likewise, suffering without pain is evident in the patient with aphasia that prevents him
from communicating with his family, the trained athlete who can no longer care for her
most basic physical needs, the father who must accept that his infant will never develop,
and the artist trying to create faster than her eyesight is failing.
C.
Response to Patients’ Pain
Ms. P is a 27-year-old African American woman with sickle cell anemia, admitted to the
ER in sickle cell crisis. She has severe pain in her thighs, arms, hands and feet. She is
dehydrated and anemic. An ER resident orders an injection of Demerol for pain and a
normal saline IV for hydration. She is admitted to the hospital.
Following admission, Ms. P questions the nurses closely about her medication and
continues to complain of pain. During morning rounds the next day, the medical team
discovers that the patient knows a great deal about her disease and its management.
When she is not having a crisis, she is able to use a nonsteroidal anti-inflammatory drug,
such as Motrin, to manage her pain. She claims that, during a crisis, intravenous
morphine provides the most effective pain relief and she asks that she be given this drug
rather than Demerol. She even suggests dosages and schedules. In the past, she says,
she has self-administered the morphine with a patient-controlled analgesia (PCA) pump,
which allows her to have a steady drip on a round-the-clock (RTC) basis, as well as
supplementary morphine on a prescribe-as- needed (PRN) basis for breakthrough pain.
The medical team is somewhat dumbfounded by Ms. P’s request. The attending tells her
that, while her suggestion is considered, Demerol on a PRN basis will be continued. He
also asks who has treated her in the past so that he can confer with the physicians who
know her well. Ms. P says that she has no primary care physician, but provides the
names of several hospitals where she has received care during the past few years.
After leaving Ms. P’s room, the team discusses her case. One resident questions her
detailed request for particular type of pain medication. He is concerned that she may be
an addict trying to get a fix and that she likes the euphoria from the morphine. Another
resident points out that Demerol provides a more euphoric effect than a morphine drip or
other opioids, such as methadone.
Just as patients’ attitudes about and responses to pain are affected by their personal and
cultural values, so are those of their care providers. For example, physicians' clinical
judgments about pain are influenced by group-based factors, including age, gender, race,
ethnicity and physical appearance, with more attractive patients perceived as
experiencing less pain than those who are unattractive.
Studies have found that, because women are often seen as emotionally labile and prone to
exaggerating pain complaints, they are given analgesia less frequently and sedation more
frequently than male patients. Likewise, younger patients of both genders tend to receive
more frequent pain medication than their elders. Physicians have been found to respond
differently to the pain of patients from ethnic backgrounds different from their own. The
balance of power between provider and patient is yet another theme in the pain
management interaction. So long as therapeutic control is vested in the care giver, the
patient remains the passive victim of pain, a supplicant in the standard p.r.n. regimen.
Physicians’ responses to their patients’ pain are also shaped by their understanding—
often misunderstanding—of pain and the agents for its relief. Numerous studies have
shown that inadequate professional education and susceptibility to misconceptions about
opioid addiction and related regulations undermine effective analgesia. These
misconceptions are also shared by the lay public. Americans tend to reject what they
believe to be effective medicinal pain relief because they fear overreliance and/or
addiction. These fears, plus concerns about legal liability, are reflected in the stringent
laws regulating drug prescription and the suspicions of health care providers who see
patient requests for pain relief as drug-seeking behaviors related to addiction.
Reluctance to provide adequate pain medication has also been related to physician fears
that analgesics, especially opioids, will “kill patients.” The unsurprising result is the
routine undermedication of even terminally ill patients.
These findings may have their roots in beliefs that are common to Western cultures. It
has been suggested that the current standard of treating acute pain responsively rather
than preventively stems from two persistent Western myths: (1) enduring pain is a
character-building, moral-enhancing endeavor; and (2) patients who receive pain
medication become addicted to the drugs.
II.
The Moral Imperative to Relieve Pain: Autonomy, Beneficence and Consent
The relief of pain is more than a professional obligation, it is a moral imperative. Pain
and its relief implicate two of the fundamental ethical principles—autonomy and
beneficence—and discussions of pain management and informed consent highlight the
tension between the two principles.
Principled analyses of the therapeutic relationship suggest that it is the dual obligation of
physicians to respect and promote the autonomy of their patients and to protect and
enhance their well-being. Relieving pain is considered a conditional obligation,
something care givers ought to do unless some other duty or moral consideration takes
precedence. One such consideration is the refusal of a decisionally capable patient to
have her pain relieved. For example, if a patient with the capacity to make health care
decisions says she wants the pain to continue because for her it has redemptive meaning,
then the obligation to relieve pain is overridden. The patient is saying that, although in
pain, she is not suffering or that the suffering is chosen and accepted.
A more common reason for electing to experience pain is the choice of cognition and
affective response over relief. Many patients refuse higher doses or more potent pain
medication because they do not want to chemically compromise their intellectual and
emotional awareness. For these individuals, the choice is a deliberate value-based
balance between relief of pain and erosion of personality.
But suppose a patient is incapacitated and clearly in pain. Should efforts always be made
to provide relief or is consent necessary? While honoring the wishes of a capable
individual shows respect for the person, withholding relief from one who cannot decide
or communicate would be a form of abandonment, indefensible for care givers.
Compassion, then, is the basis of a moral presumption favoring pain relief for the patient
who can no longer choose or whose intent is in question. Pain is not always disvalued,
but it is something we need a compelling reason not to treat. The most humane approach,
and the one to which physicians are disposed, is to relieve pain until clear evidence of
patient refusal is forthcoming.
Fortunately, in the context of pain management the twin duties of respect for autonomy
and beneficence are not mutually exclusive or even necessarily conflicting. Rather,
principled and compassionate caring embraces both the respect for and the protection of
persons. Thus, no expressed informed consent is required precisely because providing
relief from pain is central to the very notion of healing and, for that reason alone, it
requires no additional justifications.
Let us return to Mrs. H, the nursing home resident with multiple medical problems and
severe pain. Her suffering is persistent and significant enough to interfere with her
activities. Despite her best efforts, her pain has become the focus of her attention and has
profoundly impaired her quality of life. Far from rejecting pain medication, she is clearly
asking for relief. Her care team has both a clinical and an ethical mandate to carefully
assess her pain, discuss with her the benefits, burdens and risks of the analgesic options,
and provide her with sufficient analgesia to relieve her suffering. The team should also
identify and address the barriers to adequate pain relief that prevented her symptoms
from being appropriately managed.
III.
Physician-Assisted Suicide
The lab results of Diane’s blood tests confirmed Dr. Quill’s worst fears—she did indeed
have leukemia. His obvious distress reflected both the disappointment common to
physicians whose patients contract life-threatening illnesses, as well as the special
concern he had for someone who had been his patient for many years and with whom he
had developed a close and trusting therapeutic relationship. In addition, he had great
admiration for the strength and determination with which she had overcome significant
physical and emotional difficulties. In the process, she strengthened her relationships
with her husband, college-age son, and friends and reinvigorated her business and
artistic work.
Now they faced this devastating news together, going through the confirmatory tests and
discussing with her husband the various options, including chemotherapy, followed by
radiation and possible bone marrow transplants. Even with the most aggressive
treatment regimen, the chances for long-term survival were 25%; the certain outcome of
no treatment was death within a few months. After considerable discussion and
reflection, Diane decided not to undergo chemotherapy because she was convinced that
she would not survive it and that the quality of whatever time she had left was more
important than the unlikely benefits of treatment. Despite Dr. Quill’s misgivings and her
family’s attempts to persuade her to change her mind, she remained steadfast in her
determination to make the most of her time at home. Ultimately, her family and
physician reluctantly supported her decision.
Dr. Quill had known throughout their relationship that, for Diane, regaining and
maintaining control of her life was a central value. Now he realized that being in control
of her dying was just as important to her as she faced the end of her life. She became
preoccupied with concern about deteriorating, lingering, being helpless and in pain. Her
anxiety about the prospect of a protracted death became so severe that it threatened to
undermine the quality end of life she had as her goal. She asked Dr. Quill to help her
avoid the painful, debilitating and dehumanizing ravages in store by providing drugs that
she could take to end her life when she chose. She was convinced that having the ability
to control her death would give her the dignity and peace of mind that she needed.
After extensive discussion and psychiatric consultation, Dr. Quill acceded to Diane’s
unwavering determination, prescribed the barbiturates and provided the information
necessary for her to take her own life. She was able to spend the next several months
focusing on the people, relationships and activities that were most important to her. She
received aggressive palliative treatment but, eventually, she determined that the benefits
of life no longer outweighed its burdens. Her death was on her own terms, at the time
and in the manner of her choosing. Yet, concerns about potential legal liability
prevented her from having her family or physician with her at the end and she died alone.
A.
Care Giver’s Role
Discussions of pain, suffering and death lead inevitably to the subject of physicianassisted suicide. “Assisted death” as a synonym for voluntary euthanasia remains illegal
in all states but Oregon. While all states have decriminalized suicide, most states punish
those who assist another to commit suicide, although these prosecutions are rare and
unsuccessful. The ethical analysis of assisted dying addresses the issues of physician
obligations, individual autonomy, public policy and the ethical imperative to relieve
suffering.
At the very core of the healing professions is the principle of nonmaleficence, the maxim
“Do no harm.” The concept of killing patients, however passively, is an anathema to
those who devote themselves to promoting and protecting life. Yet, there has been a
perceptible shift in the dialogue. Many have come to see assisting a rational suicide as
the last act in a compassionate continuum of care and forcing the patient to take that final
step alone as an act of abandonment. Others argue that, in vulnerable and disempowered
populations, such as the poor and elderly, the right to die may become the obligation to
die as a way of relieving family or society of the unwanted burden of their care.
Ultimately, there is concern that the individual, morally justified act of assisted suicide
could become the generalized policy of euthanasia.
A critical distinction is the doctrine of double effect, which holds that a single act
having two foreseen effects, one good and one bad, is not morally or legally prohibited if
the harmful effect is not intended. The doctrine, which has its basis in Catholic theology,
requires that:
•
the act itself is not wrong;
•
the good effect is the result of the act and not the bad or harmful effect; and
•
the benefits of the good effect outweigh the foreseen but unintended bad
effect.
All three conditions are essential to prevent the doctrine from being abused or perverted
in an effort to justify actions intended to cause harm.
Correctly applied, however, the doctrine of double effect permits the administration of
sufficient opioids to relieve pain at the end of life, knowing that it could depress
respirations enough to hasten death. Providing analgesia is not inherently wrong; the
desired good effect (relief of pain) is the result of the act (providing analgesia), not the
bad effect (death); and the benefits of relieving pain at the end of life outweigh the
foreseen but unintended hastening of death. Using the rationale of the doctrine of double
effect, the intervention is both approved and protected.
B.
Supreme Court Decisions
In June 1997, the United States Supreme Court ruled in two cases seeking to turn the
right to refuse treatment into a right to assisted death. The plaintiffs in Washington v.
Glucksberg claimed that the Fourteenth Amendment due process clause could embrace
the right to determine the time and manner of one’s death. The plaintiffs in Vacco v.
Quill claimed that, under the Fourteenth Amendment equal protection clause, terminally
ill patients without the opportunity to reject life-sustaining measures should have the
same right to end their lives.
The Supreme Court rejected both arguments in two rulings that have more to do with
palliative care than assisted suicide. The Court held that, while there is no
constitutionally protected right to assisted suicide, there is a protected interest in pain
relief. The Court reaffirmed the doctrine of double effect, saying that it is both legally
and ethically appropriate to give terminally ill patients as much medication as necessary
to relieve pain, even if the effect is to hasten death. The Court also strongly reaffirmed
the distinction between foregoing life-sustaining treatment and assisted suicide. Finally,
the decisions indicated that if states did not statutorily make it easier and less threatening
for physicians to provide adequate analgesia to patients who need it, the Court would not
rule out the possibility of revisiting the issue of assisted suicide in a future case. The
importance of these rulings to compassionate care cannot be overstated.
IV.
A.
The End of Life and Palliative Care
Background
Among health care’s most important challenges is the need to improve palliation. Both
the public and professionals are troubled by the reality of overtreated disease and
undertreated pain, especially at the end of life. Considerable research and literature
demonstrate that the health care profession does a shockingly inadequate job of pain
management and that many people who request assistance in killing themselves are
actually asking for the assurance of pain relief.
Part of the blame falls to the legal and lay communities that have created a climate in
which physicians are reluctant to provide drugs for fear of legal liability, even though
there has never been in this country a successful prosecution in a case of patient death
when a narcotic was given with the intent to relieve pain. It should be a matter of
concern when the debate centers on the questionable constitutional right of terminally ill
patients to receive physician assistance in ending rather than easing their lives.
B.
Evolution of the Care Giver Role
Providing comfort at the end of life is neither a departure from nor an abdication of the
traditional responsibilities of medicine. Indeed, it is worth remembering that, until the
middle of the last century, the cure of disease and the prevention of death were not the
primary therapeutic goals because they were largely beyond the capability of those who
ministered to the sick; rather, they were the hoped-for by-products of efforts aimed at
easing the discomfort of the afflicted.
It was only with the relatively recent advent of biotechnology that “care givers” came to
be seen as “cure givers,” and comfort came to be seen as what was left when there was
“nothing more to do.” In the process, death was perceived as a failure of skill and dying
made professionals uncomfortable. Now, increasingly sophisticated science and skill
present the biotechnological imperative, and we are faced with questions of when, how
and even whether to die.
C.
Goals of Care
For this reason, a bioethics analysis begins with the question, “What is the overall goal of
care for this patient?,” not “What is the goal of this intervention?” The tendency to do
everything makes it easy to justify this one treatment and then the next and then the next.
The patient’s interest is better served by asking, “Where does this treatment fit into the
overall plan of care? If it advances the goal, then we should begin or continue it. If not,
we probably have no business doing it.” Using this approach permits the initiation of a
life-sustaining treatment, such as dialysis or ventilatory support, for a limited time with
the clear understanding that, if it does not achieve the desired effect, it can be
discontinued.
Keeping the goals at the center of care planning also permits a wider range of therapeutic
options, which is especially important at the end of life. Interventions can and should be
evaluated in terms of what they can accomplish for the patient rather than categorized
according to conventional labels. For example, surgery, radiation or antibiotics can be
appropriately considered for a dying patient when it is clear that the goal is comfort rather
than cure. When patients are beyond the reach of medicine’s ability to improve their
quality of life, palliative care can profoundly affect the quality of their death..
D.
Palliative Care Definition and Philosophy
Clinical ethics consultation services and ethics committees are regularly confronted with
end-of-life issues. As more institutions establish dedicated palliative care teams, the
collaboration between the two services creates a powerful set of resources to benefit
patients at or approaching the end of life. The following definition and philosophy of
palliative care, including principles and clinical guidelines, were developed by the
Bioethics Committee at Montefiore Medical Center.
1.
Definition
Palliative care is active intervention, which has as its goal the achievement of maximum
comfort and function of the total patient. While palliation can and should always be an
integral part of the entire spectrum of patient care, it stands alone as the care for the
patient who has been diagnosed with an irreversibly deteriorating or terminal condition
and for whom curative treatment is no longer the goal of care.
Palliative care shares with cure-oriented care the qualities of plan-driven activity,
purposeful organization and evaluation, range of treatment options, care giver-patient
engagement and collaborative decision making. The only distinguishing characteristic is
the goal of care: palliation has compassionate caring rather than cure as its goal. Because
palliation remains on the care continuum after cure is no longer the goal, it may
encompass particular comfort measures posing risks to life that might not have been
acceptable when cure was still the goal of care.
2.
Clinical Issues
•
Most decisions, particularly about health care matters with significant
implications, are determined by how the issues are framed. This is perhaps
most apparent in relation to end-of-life care. The willingness of patients and
families to embrace or even accept the notion of palliative care will depend on
whether it is presented as a defeat or an opportunity to make the most of the
time remaining. Withholding or withdrawing life-sustaining measures can be
seen as depriving the patient of needed treatment or protecting the patient
from unnecessary and burdensome interventions.
•
When patients are aware at any level, their interests are paramount. When
patients are beyond help and beyond suffering, the interests of their loved
ones may be elevated. When the family of a comatose patient says, “We can’t
let go just yet. His daughter is coming from California on Sunday,” it may be
appropriate to say, “Let’s wait 48 hours before discontinuing life support. But
let’s be clear about why we are doing this—not because we are hoping for a
miracle cure for him, but because you need the time.”
•
There is a difference between truth telling and truth dumping. Most dying
patients, including children, deserve to have their questions answered and not
be protected into isolation because others are uncomfortable. This is precisely
the time patients need to know they are not alone.
•
Patients and families who insist on “doing everything” should trigger an
analysis of whose needs are being met and who is being burdened. There is
no obligation to provide ineffective treatment and no right to impose pain and
suffering on the patient just to exhaust every therapeutic possibility.
3.
Philosophy

Promoting the patient’s physical and emotional comfort is always a
therapeutic goal. There is a time when this becomes the therapeutic goal—a
time when care, not cure, becomes paramount.

Care givers have a responsibility to communicate to patients and families their
commitment to promoting patient comfort, and to provide reassurance that the
patient will not be abandoned.

Care givers have a responsibility to shift the focus from the interventions that
are being discontinued to all the comfort measures that will be continued or
initiated.

Care givers have a responsibility to recognize when the goal of care shifts
from cure to comfort, and to engage patients, families and other care givers in
discussing and planning for the change in orientation.

Palliation is a multidisciplinary undertaking, involving the patient and family,
and calling on the efforts and skills of medicine, nursing, pain management,
bioethics, social services, pastoral care, and recreational therapy.
•
Because notions of health, illness, pain and relief are perceived and
interpreted according to the background and traditions of patients and care
givers, knowledge of and respect for culture and religion are integral to the
responsibilities of care givers.
•
Palliation is not all that is left when there is nothing left to do.
•
Palliation is not a response that begins when the patient is in pain.
•
Palliation is a philosophy and a set of active behaviors that continue
throughout the therapeutic process, becoming the single focus of care giving
for the patient and family as death nears.
Conclusion
The role of the physician—to promote the patient’s well-being—takes on a heightened
intensity at the end of life. In times of death and dying—when patients and their loved
ones look to you for skill and guidance—you are sometimes most ethical and
compassionate by supporting a pain-free, peaceful and dignified death as a legitimate
care goal.
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