Pessimism Is No Poison - e-sanitas

VOLUME 28 ⅐ NUMBER 4 ⅐ FEBRUARY 1 2010 THE ART OF ONCOLOGY

JOURNAL OF CLINICAL ONCOLOGY

Pessimism Is No Poison

Lidia Schapira, Phyllis Butow, Richard Brown, and Frances Boyle

From the Department of Medicine, Divi- INTRODUCTION their diagnosis, treatment options, and the possible
sion of Hematology-Oncology, Massa- adverse effects of treatments.1-3 However, their need
chusetts General Hospital, Boston, MA; Dee Jones is 35 years old, married, and the mother of for information, both quantitative and qualitative,
Social and Behavioral Health, Virginia three children, all younger than15 years of age. She may change over time and may be influenced by
Commonwealth University School of had been healthy all of her life before she presented many factors. Physicians are frequently asked to give
Medicine, Richmond, VA; School of with a 2-week history of abdominal discomfort and prognostic information, and more specifically, to
Psychology, Medical Psychology anorexia. Evaluation revealed moderate jaundice, estimate how long an individual patient is likely to
Research Unit, University of Sydney; an enlarged liver, and abnormal liver function live. This is challenging on multiple levels. It is al-
and the Department of Cancer Medi- tests. An image of the abdomen showed a pancre- most impossible to be precise in providing a prog-
cine, Mater Hospital, Sydney, Australia. atic mass and widespread metastatic disease to the nostic estimate of life expectancy unless the patient
liver. A liver biopsy confirmed a diagnosis of meta- is imminently dying. Communicating uncertainty
Submitted July 4, 2009; accepted July static pancreatic carcinoma. She received first-line and providing numerical estimates to patients in a
31, 2009; published online ahead of chemotherapy for pancreatic cancer and returned 6 way that is both clear and supportive is difficult. It is
print at www.jco.org on November 16, weeks later for re-evaluation. She had evidence of not surprising that physicians often avoid this alto-
2009. disease progression, increasing pain, weight loss, gether with consequences that are well known and
and was bedridden more than 50% of her wak- later regretted—too many patients receive intensive
Authors’ disclosures of potential con- ing hours. or aggressive care in the final days of life without
flicts of interest and author contribu- benefit. The end results of such medical decisions are
tions are found at the end of this A staff oncologist, accompanied by a first-year far reaching, given that they affect family and profes-
article. oncology fellow, visited with the patient. With the sional caregivers. Bereaved relatives and friends may
patient acknowledging that she wanted to hear prog- suffer and later regret the use of aggressive treatment
Corresponding author: Lidia Schapira, nostic information, the medical oncologist had a in the final days of life, which consumed their time,
MD, Massachusetts General Hospital, heart-to-heart discussion with the patient. The se- attention, and resources. Nurses and young physi-
55 Fruit St, Boston, MA 02114; e-mail: nior oncologist noted that survival is typically mea- cians are often distressed when they become unwill-
[email protected]. sured in weeks. They discussed treatment options ing participants in futile efforts to prolong the life of
ranging from additional chemotherapy to participa- a patient with a terminal illness. Clearly, the answer
© 2009 by American Society of Clinical tion in an early-phase clinical trial. They talked lies in avoiding such situations through improved
Oncology about symptom management and hospice care. communication between patients and doctors.
They agreed that no further cytotoxic chemotherapy
0732-183X/10/2804-705/$20.00 would be used. The conversation was difficult for all: Providing clear prognostic information is a sine
the patient and her husband cried and the oncologist qua non for reasonable decision making. Armed
DOI: 10.1200/JCO.2009.25.0027 was visibly moved. with a clear understanding of the natural history of
the illness with and without treatment and a numer-
After leaving the room, the staff oncologist and ical estimate of life expectancy, a reasonable person
fellow discussed the consultation. The fellow asked can sort through his goals and priorities, prepare for
the oncologist why he was so pessimistic when talk- treatments with uncertain outcomes, and think
ing with the patient. Why did he say things to make about death and its aftermath. In practice, physi-
the patient and her husband cry? Shouldn’t he have cians balance the ethical mandate to inform patients
given the patient more hope? Would it not have with the need to protect them from harm, including
been better for the patient to hear this dire news in the anxiety and hopelessness engendered by a poor
chunks over the course of several clinic visits? After prognosis. Medical views regarding prognostic dis-
all, the patient was so young she may just beat cussions reflect this tension and can lead to different
the odds. behaviors or recommendations on the basis of the
beliefs of the individual clinician. If one believes that
DISCUSSION beneficence requires that a physician act in the good
of another, then one can justify withholding upset-
There is ample evidence that oncology patients in ting information or obfuscating important facts.
Western cultures prefer to be well informed about

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Schapira et al

This may lead to short-term benefits and calm the physician’s anxiety Thirty years ago, Spiegel19 showed that patients who were able to
over conveying bad news, but can cause long-term harm by depriving openly acknowledge and discuss their fears were also more able to
the patient and his/her family from using the time left to complete express positive and hopeful feelings. Factors that influence a patient’s
important tasks. Doctors endorsing this philosophy argue vehemently hopefulness are the physician’s willingness to talk about prognosis, to
that the modern practice of full disclosure is cruel and insensitive, answer questions and provide information openly and honestly when
contrary to patients’ best interests and disruptive to the benefits arising asked, to offer the most up-to-date treatment, and to also provide
from denial and hope.4-7 If one is guided by paternalism, then emotional support.20 In a systematic review of the literature on sus-
perhaps one can justify making important decisions on a patient’s taining hope in the context of terminal illness, Clayton et al20 quote
behalf on the basis of a perception of what is presumed best for that evidence suggesting that if the oncologist can talk about death and
individual. In contrast, if one is guided by the conviction that every dying comfortably and without fear, the patient will be more able to do
adult with capacity has the right to make their own autonomous so, and this can be very comforting. This suggests that offering reas-
decisions, then all data and facts should be made available to the surance that the patient/caregiver will be supported throughout the
patient. This is not to say that we encourage dumping of truth, but illness trajectory and emphasizing what can be done are of value
rather endorse open and frank communication. to patients.

In fact, few physicians would dispute the ability and right to There is a delicate balance between fostering realistic hope and
self-determination; however, soft paternalism remains very common, creating false expectations of longevity. Robinson et al21 analyzed
as physicians constantly sort through and censor the type and quantity audio-recorded encounters between 51 oncologists and 141 patients
of information that needs to be conveyed.8 This was well illustrated in with advanced cancer with good (n ϭ 69) or poor (n ϭ 72) concor-
an ethnographic study of communication between oncologists and dance about chance of cure. Encounters were coded for communica-
patients with small-cell lung cancer that documented just how con- tion factors that might influence oncologist-patient concordance,
versations shifted from the bad news of diagnosis and prognosis to the including oncologist statements of optimism and pessimism. When
good news of treatment planning.9 Patients infrequently asked about oncologists made at least one statement of pessimism, patients were
prognosis and physicians rarely offered such information, assuming more likely to agree with their oncologist’s estimated chance of cure
that when patients did not ask, they did not want to know. Other (odds ratio, 2.59; 95% CI, 1.31 to 5.12). Statements of optimism and
studies have noted similar collusive tendencies in physician-patient uncertainty were not associated with an increased likelihood that
communication in oncology.10,11 patients would agree or disagree with their oncologists about chance of
cure. The authors concluded that the best communication strategy to
Multiple studies demonstrate that a clear majority of patients maximize patient knowledge for informed decision making, while
with cancer want prognostic information. Two recent systematic re- remaining sensitive to patients’ emotional needs, may be to emphasize
views encompassing more than 100 studies concluded that most pa- optimistic aspects of prognosis, while also consciously and clearly
tients want specific information about their risks and prognosis, communicating pessimistic aspects of prognosis. A fitting metaphor is
including the chances of cure, the extent of disease spread, their life that of a seesaw or pendulum, with optimism and pessimism on each
expectancy (eg, the chances of living 1 or 5 years), best- and worst-case end and realism in the middle. The oncologist then assists the patient
scenarios, the possible effects of cancer on their lives, and possible in this balancing act by moving towards pessimism if that is what is
adverse effects of treatment. For many patients, these needs for infor- needed to bring the patient closer to the middle—the safest place to be.
mation do not diminish as their prognosis worsens.3,12,13 In fact, they
may become more important as the need to prepare and assemble So, is a little pessimism actually helpful in prognostic conversa-
family members, reach important milestones, and get their affairs in tions? One can easily imagine that a sincere doctor who acknowledges
order become more acute. his own concern about future outcomes and is willing to say so to the
patient may earn the patient’s trust.22 In so doing, the therapeutic
This brings us to the question of hope. Hope has been de- alliance is strengthened and allows the patient to come to terms with
scribed as an essential element in human life, and one that is the sad reality of the situation. This is the essence of therapeutic
integral to a person’s quality of life and well-being.14,15 Having engagement. The evidence suggests that discussion of prognosis does
things to hope for is an important coping strategy for all patients not take away hope, but rather leads to greater patient satisfaction,
with cancer.16,17 It is in the name of preserving hope that informa- lower anxiety, and lower depression. Several recent studies reinforce
tion is most often withheld. The desire to preserve and foster hope, the concept that knowing one’s prognosis and discussing preferences
no matter how poor the prognosis, drives the individual doctor to for care at the end of life does not lead to despair and depression, and
decide in the moment how much is actually discussed and how it is on the contrary, allows for a better adjustment to serious illness.2,23
framed.13 It is worth noting that the physician too needs to feel
hopeful in order to convey this important sentiment that has The senior oncologist in this scenario decided to share prognostic
resisted proper characterization. Medical literature has taken a information without censoring. We can only imagine that this took
rather narrow view on hope by placing undue emphasis on the considerable discipline and effort, since oncologists are typically ex-
object of such hope and framing the discussion in terms of tangible pected to focus on treatment-oriented solutions. Responding to such
outcomes, such as remission or cure of disease.18 However, one can poignant situations requires a willingness to recognize the fundamen-
hope for many things, such as to be pain free, to have meaningful tally human and deeply personal nature of suffering.
relationships, to reach an important goal or event, to maintain
dignity, and to have a good death. The best way to help individual AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST
patients is to ask them directly what they hope for and use that as a The author(s) indicated no potential conflicts of interest.
focal point for discussing prognosis and setting realistic expectations.

706 © 2009 by American Society of Clinical Oncology JOURNAL OF CLINICAL ONCOLOGY

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201.51.53.112.

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The Art of Oncology

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