1. ABSTRACTS
Workshop on Psycho-Oncology:
Alleviation of Fear, Frustration and Sense of Loss
Through Non-Pharmacological Treatment Modalities
desire to protect his or her patient. In the article ‘‘Setting Goals to
COMPASSIONATE HONESTY Maintain Hope,’’ Von Roenn and Von Gunten provide a strategy to
Charles L. Loprinzi, MD*, Lidia Schapira, MDw , Timothy Moynihan, direct physicians in their approach to honest, yet hopeful, disclosure
MD*, Gregory P. Kalemkerian, MDz, Charles von Gunten, MD, of a poor prognosis. Teaching patients to reframe the object of their
PhDy, and David Steensma, MD*. *Mayo Clinic, Rochester, MN; hope, and setting realistic, short-term goals allow the oncologist to
w Massachusetts General Hospital, Boston, MA; zUniversity of Michi- engage in a dialogue that focuses on life, instead of avoiding the topic
gan, Ann Arbor, MI; and yCenter for Palliative Studies, San Diego altogether.2 ‘‘Sign-posting’’ provides valuable clues to a patient and
Hospice, San Diego, CA. his loved ones that they have entered into a new and perhaps
unfamiliar or frightening territory. As noted by the authors, if a
person is driving on a highway, it is appropriate to have warning
INTRODUCTION signs to alert drivers as to when the exit is approaching. In a similar
Oncologists are actively involved in assisting patients in manner, patients and their loved ones need some warnings from
making difficult decisions, at the time of initial cancer diagnosis the doctor that signal that a change has occurred or that the end is
and for months or years thereafter. Such discussions involve near.
imparting the news of a new diagnosis of cancer or a recurrence, Smith3 provides a clear and logical strategy for helping
providing results of day-to-day tests or staging scans, and clarify goals and plans of care in the piece entitled ‘‘Tell It Like It
addressing prognosis, all of which must be done in a compassionate Is.’’ He advocates the use of a written document in which the
and sensitive manner. Cancer specialists need to help their patients doctor and patient record important information about the disease,
learn how to talk about difficult and meaningful subjects such as intention of treatment, and emergency contacts. This straightfor-
personal values, hopes and expectations, and to share the task of ward approach can be adapted to other situations and serve as a
making decisions about treatment and goals of care. Typically, the model for clarity and partnership between patients and their
most difficult discussions are those that address the lack of effective professional caregivers.
medical treatments. ‘‘Caring for Dying Patients: What is Right?’’4 describes the
The Art of Oncology: When the Tumor is not the Target is consequences of the all too familiar situation whereby patients with
the title of a section of the Journal of Clinical Oncology, which was advanced incurable cancers are not told the truth about their
initiated with the first issue of this millennium.1 One of the condition. They are sent home ‘‘to try to get stronger so that they
overriding themes of this section of the Journal of Clinical Oncology can become fit enough to receive chemotherapy.’’ The frequent
is to showcase the importance of honest disclosure, coupled with consequence of this scenario is that an ill patient comes back to an
the therapeutic effect of compassion. The section offers narratives emergency room with a life-threatening event. Without the patient
and didactic articles that provide useful advice and highlight the and family’s appropriate understanding of the situation and
opportunities for establishing healing connections between profes- possible complications that might occur, they are left to struggle
sionals and patients. A substantial number of the articles published alone without the professional guidance required to sort through
in this section of the Journal of Clinical Oncology address difficult treatment choices. This raises 1 of the central issues of the
‘‘compassionate honesty,’’ and these will form the primary basis patient-oncologist relationship, namely to ask and consider
for the current discussion. whether the one and only business of this relationship is the choice
and application of treatment. To be ‘‘fit for chemotherapy’’ implies
that chemotherapy is what the patient is ‘‘fighting for.’’ Should
TELL THE TRUTH chemotherapy be viewed as simply an assistive device to allow life,
Conversations about expectations of recovery, time frames, or as a priority in and of itself? At times, a conversation with a
and hope for a normal future are extremely important for cancer thoughtful oncologist can open up new avenues for relief of
patients and their loved ones. A common sentiment among many symptoms through palliative care, allowing the patient and family
oncology professionals is the need to nurture hope in their patients. to exert more control over future events.
Many colleagues are afraid of causing harm by forthrightly On another practical and perhaps less emotional level,
addressing issues of prognosis when the outlook is grim. This is readers can learn from ‘‘Treatment Decision Aids’’ about how to
only normal, as is the desire to protect patients from harm or discuss the pros and cons of the use of chemotherapy in the setting
disappointment. It is easy to imagine situations where the doctor of advanced or incurable cancer.5 In this article, Leighl discusses
means well and avoids addressing important issues out of a genuine how to help patients weigh potential treatment benefits and risks,
so that they can be better informed and ready to participate in a
shared decision-making process.
Funding Organization: Department of Health and Human Services, Pediatric oncology poses unique challenges for doctors who
Palliative Care Host Organization: Ministry of Health, Nicosia, must communicate with both patients and their parents, and may
Cyprus, May 8-10, 2009. need to balance and integrate different perspectives. Two pieces
The opinions or views expressed in this supplement are those of the
focus on compassionate honesty in pediatrics: ‘‘The Day One
authors, and do not necessarily reflect the opinions of the journal
Talk’’6 and ‘‘Tell the Children.’’7 The first article stresses the
editors, the DHHS, NCI or Wolters/Kluwer/Lippincott Williams &
Wilkins. importance of providing sufficient information and building a
Scientific Organization Partners: American Cancer Society, Interna- respectful and supportive partnership between oncology profes-
tional Union against Cancer, Oncology Nursing Society, Interna- sionals and families. The authors favor a planned and yet flexible
tional Network for Cancer Treatment and Research, SUVAK— approach from ‘‘Day One,’’ cautioning clinicians to take their cues
New Hope in Health Foundation, Turkey, International Agency for from parents and families and to be as clear and compassionate as
Research in Cancer (WHO). possible. They also address the need for the pediatric oncologist to
Copyright r 2010 by Lippincott Williams & Wilkins relay information directly to his or her patient, and remind us that
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2. J Pediatr Hematol Oncol Volume 32, Number 1, January 2010 Abstracts
well-informed children and adolescents can better cope with illness was told she was receiving chemotherapy, thus boosting her belief
and treatment. The second article, ‘‘Tell the Children,’’ explores the that everything possible was being done; it is possible that this
difficult topic of informing children that death is imminent. Using understanding helped her to die peacefully at home. Although
2 case vignettes, the authors compare and contrast different most oncologists would be uncomfortable with this deception,
approaches. In one case, parents forbade doctors and hospice the author’s discussion of the situation reflects a thoughtful and
workers from talking about death, both with the dying child and compassionate individualized approach concordant with the
his sibling. In the other, a family invited open communication and patient and her family’s stated wishes. Those who wish to read
included a healthy sibling in the final hours of the dying child’s life. more on the protective mechanisms commonly used by patients
The authors’ clear message is that developmental theory and facing death will appreciate Rouseau’s article, ‘‘Death Denial,’’
research confirms both the importance of honesty and the ability of which explicitly addresses the useful role of denial in patients with
children to accept death. Although honest recognition of a child’s advanced cancer.13
approaching death can be unbearably sad, progress in pediatric In ‘‘But Doctor, What Have I Got to Lose?’’ Harnett and
palliative care now allows patients and their families to receive the Moynihan14 point out the important trade-offs a patient must
coaching, assistance, and support they need through end of life consider before trying chemotherapy when the chance of benefit is
and, for families, into the period of bereavement. quite low. If the possibility of response is low, the risks of
treatment-related toxicities need to be carefully discussed and
NECESSARY COLLUSION considered. Such toxicities include premature death, reduced
quality of life, and loss of opportunities to accomplish the
One of the most controversial pieces in the Art of Oncology
series is ‘‘Necessary Collusion: Prognostic Communication with important tasks that often come in the waning days of one’s life,
Advanced Cancer.’’8 Helft, an oncologist and ethicist, argues that such as planning for physical and psychosocial needs of loved ones.
as a physician’s responsibility is to provide hope for patients, Five specific directives, first proposed by Ira Byock in ‘‘Dying
sharing bad news may sometimes interfere with this objective. He Well,’’15 are reiterated in this piece, including the need for dying
patients to tell their family and loved ones: ‘‘please forgive me for
suggests that many patients really do not want to hear bad news,
doing those things that I have done to you that were not right, I
despite asking about what is going to happen to them, and argues
that patients often want the physician to portray all news in the forgive you for what you might have done to me that was not best,
best possible light, even if it means distorting or withholding thank you for all that you have done for me, I love you, and
certain facts. In a commentary, Kalemkerian points out that The goodbye.’’
argument made by Helft in favor of ‘‘necessary collusion’’ in the
discussion of prognosis between patients with cancer and their
oncologists is predicated on the presumption that the primary goal HOW TO DELIVER BAD NEWS
of oncologic care is to maintain hope. If this was the case, then it Recognizing the central and recurring theme of breaking sad
would be difficult to argue against such an approach. However, the news to patients, the ‘‘Art of Oncology’’ features many articles on
primary goal of oncologic service is to care for patients with cancer this subject. They vary considerably in tone and content and
in a comprehensive manner, with appropriate attention paid to include moving narratives and evidence based guidelines for
their physical, psychological, and practical needs. Helping patients practice. One of the earlier articles in the series, entitled, ‘‘Giving
maintain hope is but one part of this, not the core principle.’’9 Bad News to Cancer Patients: Matching Process and Content,’’
Oncologists should understand how to have a conversation with discusses the angst experienced by doctors when giving bad news to
patients that encompasses more than hope for cure. This article and patients, especially when it is unexpected, or the patient or family is
its counterpoint reflect conflicting opinions among oncologists both not ready for it.16 The authors provide suggestions to help
about core professional values, and the duty to inform patients, to clinicians understand the task, process components, and deliver
allow them to make informed choices based on an accurate information in a compassionate and effective manner.
representation of their medical condition. The SPIKES mnemonic (setting up the discussion, delineating
‘‘Concealment of Information in Clinical Practice: Is Lying the patient perception of the situation, obtaining an invitation to
Less Stressful than Telling the Truth?’’ may help explain why provide information, providing the knowledge of the situation,
physicians do not always provide realistic information to patients. assessing patient emotions, and summarizing the discussion while
The article presents data from behavioral research that documents setting goals) was introduced by Baile et al17 to outline a method of
the stress experienced by those who tell the truth about poor delivering bad news. ‘‘Discussing Bad News in the Outpatient
prognostic information. The authors conclude that it is often easier Oncology Clinic: Rethinking Current Communication Guidelines’’
for physicians to lie to patients than to tell them the truth.10 further elaborates on the topic and identifies 3 additional aspects of
these discussions as they occur in real life.18 First, that physicians are
often not able to plan ahead of time for all ‘‘bad news’’ interactions
DON’T GIVE UP ON ME because many times, there is no advanced warning that bad news
There are patients who want to be treated ‘‘aggressively’’ needs to be delivered. Bad news may be a part of almost any
despite understanding that such treatments may cause more outpatient or inpatient oncology encounter, which may not allow an
suffering and have little chance of improving quality or length opportunity to set up a bad news discussion with a dedicated room,
of life. To oncologists, the word ‘‘aggressive’’ denotes intensive extended time, or all patient-desired family members present. Second,
treatments that are almost invariably accompanied by adverse bad news interactions often do not focus on one central piece of
effects and, in the setting of advanced cancer, may well add to the information, but rather involve multiple aspects. Finally, bad news
burden of symptoms experienced by the patient. For some, the use interactions are rarely dyadic—more frequently they involve a
of ‘‘aggressive treatment’’ signifies that everything possible was clinician, patient, and at least 1 relative or loved one. Clinicians
done to offer the patient a chance to extend his survival. In the need to know how to acknowledge the patient and family together
powerful poem, ‘‘Can You Cure Him for the Baby’s Sake?’’ Mehta and, with the patient’s consent, to balance each person’s specific
describes a patient and his partner who persuade a physician to needs for information, attention, and support.
administer chemotherapy when most would consider such treat- An early piece in the ‘‘Art of Oncology’’ series addresses the
ment futile.11 In an accompanying commentary, Fetting discusses frequently asked question, ‘‘Doc, How Much Time Do I Have?’’ by
the moral distress that such demands bring on oncologists, other describing a role play in which experienced physicians were asked
members of the healthcare team, and society. A variation on this to address this question in a simulated clinical encounter.19 The
theme is described in ‘‘Another Infusion of Hope.’’12 This describes physicians’ responses were videotaped and transcribed, portraying
an Italian patient who asked not to receive bad prognostic the different ways that experienced clinicians respond to this
information and wished to continue to receive chemotherapy, question. This piece led to a subsequent article in which Schapira et
leading her physicians and family to administer an intravenous al20 argue that this question should be addressed with another
vitamin to her while she was being cared for at home. The patient direct question back to the patient asking them why they wish to
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3. Abstracts J Pediatr Hematol Oncol Volume 32, Number 1, January 2010
know this information. By exploring the patient’s concerns and ethical dilemmas, particularly in the United States, where legal and
fears and addressing them explicitly, conversations with patients cultural forces favor complete disclosure and mandate that patients
can be greatly enriched. be given informed consent for treatment.
One of the more popular articles in the Art of Oncology A candid and inspiring piece, ‘‘Surprised by Hope,’’
series is ‘‘Just Say Die.’’21 The use of indirect language and discusses a situation in which a patient specifically told her
euphemism, such as ‘‘end of life,’’ and the avoidance of the words oncologist, after she had received a realistic assessment about her
‘‘die’’ and ‘‘death’’ are all too common in our verbal communica- cancer and treatment options, that she wanted her oncologist to
tions and published literature. In making his point, the author asks be more optimistic about her case.36 This patient, appropriately
whether doctors should talk about ‘‘beginning of life care,’’ instead informed, ‘‘had her eyes wide open, but preferred to wear rose-
of ‘‘infant care.’’ colored glasses.’’ The doctor responded by avoiding confrontation
The ‘‘Power of Silence’’ discusses the usefulness of allowing and honoring her patient’s clear request.
silence when giving patients bad news.22 This piece recounts a
situation where the physician team sat in silence with a patient and
family for a prolonged time—30 to 40 minutes. For many of us, HOW GIVING BAD NEWS AFFECTS THE
even 30 seconds may feel like a century and a minute or two ONCOLOGIST
requires focus and discipline; in the right setting, however, silence Oncology professionals are personally affected by caring for
can have a marked therapeutic effect. patients on a daily basis with life-threatening illnesses who face
‘‘The Sentinel’’ was written by an otolaryngologist who loss, disability, and death. In ‘‘The Narrow Path,’’ Steensma
describes a patient with anaplastic thyroid cancer.23 When the illustrates the fine line that physicians need to walk to remain
patient asked his physician, ‘‘What will kill me? What will emotionally close to their patients while still maintaining a safe
happen?’’ the physician had difficulty responding; he found himself distance from their suffering.37 He also describes the serious
unable to tell the patient that he might exsanguinate from an acute consequences of falling off to either side of this narrow path.
carotid artery rupture. A commentary on this article entitled ‘‘Fellow Suffering’’ was written by an oncology fellow in
‘‘Missed Opportunities,’’ by Moynihan and von Gunten,24 reminds New York City at the time of the 9/11 terrorist attacks.38 The
us that the situation described in ‘‘The Sentinel’’ demanded a author notes that she was not affected as much by this tragedy as
resolution. If the specialist was unable to answer the patient’s she might have expected, because she had already seen such
questions, then perhaps a palliative care team could have helped. extensive human suffering and so many tragic consequences during
To this end, it is not necessary for one cancer specialist to provide her months on the oncology wards. The author also relates that
all services, as long as he or she delegates important aspects to fellows can provide mutual support and advice by more openly
other colleagues and together they function as a multidisciplinary discussing their experiences with each other.
team assembled to meet all of the patient’s needs.
The Art of Oncology series includes several articles that
address the difficulties posed by discussions of resuscitation CONCLUDING REMARKS
preferences and hospice referrals. Both of these topics require There are advantages to both the patient and physician to
ample use of direct, but compassionate, honesty, as noted by von being honest and forthright, even if the truth is disappointing or
Gunten in 2 separate articles.25,26 Another perspective regarding frightening. Honest communication of clinical reality allows
the consequences of failing to discuss such issues is offered in, patients to make better informed decisions regarding treatment
‘‘Overcoming Obstacles to Hospice and Palliative Care: An Ethical options, fully prepare for eventualities, have worthwhile discus-
Examination of Inertia and Inaction.’’27 sions with loved ones, and not miss opportunities to do whatever is
Practical suggestions for teaching and improving commu- important to them with their remaining time. There are patients
nication skills are provided by Back et al28 in 4 articles in this series. who may not welcome such openness, but most do appreciate
The authors initially describe their use of role play to teach knowing what lies ahead. Learning how to impart such information
communication skills to medical oncology fellows. Subsequently, in a sensitive and compassionate manner requires not only good
they provide practical tips for discussing prognosis with patients, intentions, but strong communication skills (that we now know can
both those who are prepared to engage in such discussions29 and be taught) and the discipline to do what will serve the patient best,
those who are reluctant to initiate or participate in these conversa- rather than what is easiest or feels good. By providing stories of
tions.30 Finally, this group recently published a manuscript describing personal reflection as well as guidelines and practical advice, Art of
a method for teaching oncologists how to train oncology fellows to Oncology promotes lifelong learning, which enhances the practice
have better communication skills, by using role play situations.31 of oncology for both our patients and ourselves.
Testimonials written by oncology fellows have also been References:
published in this section, providing insights into the training and 1. Loprinzi C, Canellos GP. The art of oncology—when the
experience of junior specialists.32,33 Perspectives from oncologists- tumor is not the target. J Clin Oncol. 2000;18:3.
in-training enrich our collective experience as a community of multi- 2. Von Roenn JH, von Gunten CF. Setting goals to maintain
generational professionals, and remind us of the hard work involved hope. J Clin Oncol. 2003;21:570–574.
in climbing the steepest part of our professional ‘‘learning curve.’’ 3. Smith TJ. The art of oncology: when the tumor is not the
target. Tell it like it is. J Clin Oncol. 2000;18:3441–3445.
4. Bretscher M. Caring for dying patients: what is right? J Clin
PLEASE DON’T GIVE ME (US) BAD NEWS Oncol. 2000;18:233–234.
How should oncologists respond to a request to withhold 5. Leighl NB, Butow PN, Tattersall MH. Treatment decision aids
information? ‘‘Truth or Consequences, What to do When your in advanced cancer: when the goal is not cure and the answer is
Patient Doesn’t Want to Know’’ deals with this important scenario not clear. J Clin Oncol. 2004;22:1759–1762.
by addressing the consequences of denial for the patient, the family, 6. Mack JW, Grier HE. The day one talk. J Clin Oncol. 2004;22:
and the healthcare professionals involved.34 It begins with a 563–566.
powerful description of a clinical case, written by a medical student 7. Hilden JM, Watterson J, Chrastek J. Tell the children. J Clin
as she grapples with these issues. Her story ends with the Oncol. 2000;18:3193–3195.
unsuccessful resuscitation of a young woman with advanced 8. Helft PR. Necessary collusion: prognostic communication with
cancer. The author’s own reaction and feelings, and those of her advanced cancer patients. J Clin Oncol. 2005;23:3146–3150.
supervisors, serve as a reminder of the impact of futile resuscitation 9. Kalemkerian GP. Is collusion necessary? A commentary on
attempts and the attendant moral distress for all involved. The necessary collusion. J Clin Oncol. 2005;23:3153–3154.
related topic of what happens when a family member tells the 10. Panagopoulou E, Mintziori G, Montgomery A, et al. Conceal-
doctor to withhold information from the patient is addressed in ‘‘A ment of information in clinical practice: is lying less stressful than
Request for Nondisclosure: Don’t Tell Mother.’’35 This issue poses telling the truth? J Clin Oncol. 2008;26:1175–1177.
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4. J Pediatr Hematol Oncol Volume 32, Number 1, January 2010 Abstracts
11. Mehta P, Fetting J. Can you cure him, for the baby’s sake? we communicate in verbal or nonverbal language is controversial,
J Clin Oncol. 2003;21:4064–4065. we know that nonverbal communication1 is the oldest form of
12. Giorgi F, Bascioni R. Another infusion of Hope. J Clin Oncol. communication there is. Nonverbal communication may be
2009. In press. through hand gestures, facial expression, or eye contact. It can
13. Rousseau P. Death denial. J Clin Oncol. 2000;18:3998–3999. occur through any sensory channel—sight, sound, smell, touch, or
14. Harnett PR, Moynihan TJ. But doctor, what have I got to taste. How clinicians communicate with patients and families can
losey? J Clin Oncol. 2001;19:3294–3296. be studied in various contexts: including verbal communication,
15. Byock I. Dying Well: The Prospect For Growth at the End of nonverbal communication, and art. Expressive arts therapy uses
Life. East Rutherford, NJ: Putnam-Riverhead; 1997. music, dance, art, and writing to promote growth and healing.
16. Baile WF, Beale EA. Giving bad news to cancer patients: These nonverbal creative ways allow us to express our feelings.2
matching process and content. J Clin Oncol. 2001;19:2575–2577. The relationship between the counselor and the patient or
17. Baile WF, Buckman R, Lenzi R, et al. SPIKES-A six-step bereaved family member is fundamental to the therapeutic process
protocol for delivering bad news: application to the patient in counseling. Trust and acceptance are the foundation of the basic
with cancer. Oncologist. 2000;5:302–311. tenets of the therapeutic relationship. The therapist who is an
18. Eggly S, Penner L, Albrecht TL, et al. Discussing bad news in effective communicator conveys empathy and understanding,
the outpatient oncology clinic: rethinking current communica- enhances the therapeutic climate, and allows bereaved families to
tion guidelines. J Clin Oncol. 2006;24:716–719. feel understood and not abandoned by the medical staff after their
19. Loprinzi CL, Johnson ME, Steer G. Doc, how much time do loved one has died. This helping relationship, as Carl Rogers had
I have? J Clin Oncol. 2000;18:699–701. previously described in his client-centered humanistic model, is
20. Schapira L, Eisenberg PD, MacDonald N, et al. A revisitation of built on honesty and open, direct communication between the
‘‘Doc, how much time do I have?’’ J Clin Oncol. 2000;18:2640–2643. counselor and the client (http://www.nrogers.com/carlrogers-
21. Berry SR. Just say die. J Clin Oncol. 2008;26:157–159. bio.html Retrieved April 19, 2009).
22. Himelstein BP, Jackson NL, Pegram L. The power of silence. This study will explore the bereavement model of non-
J Clin Oncol. 2001;19:3996. abandonment, which Calvary Hospital (Bronx, New York) posits
23. Campbell BH. The sentinel. J Clin Oncol. 2008;26:1760–1761. in its mission statement. The philosophy and model of nonaban-
24. Moynihan TJ, von Gunten CF. Missed opportunities: com- donment are hallmarks of our program and facilitate communica-
mentary on ‘‘The sentinel’’. J Clin Oncol. 2008;26:1762–1763. tion between the bereaved family member and clinicians. In
25. von Gunten CF. Discussing do-not-resuscitate status. J Clin particular, we will focus on the therapeutic interventions our
Oncol. 2001;19:1576–1581. bereavement counselors and therapists utilize to communicate with
26. von Gunten CF. Discussing hospice care. J Clin Oncol. bereaved children, helping them to express their grief in ways other
2002;20:1419–1424. than speaking. Artwork is not just play for children, but serves
27. Daugherty CK, Steensma DP. Overcoming obstacles to many functions in helping bereaved children who have been
hospice care: an ethical examination of inertia and inaction. exposed to traumatic events.3 Even children who are comfortable
J Clin Oncol. 2002;20:2752–2755. and proficient with their verbal skills appreciate being offered other
28. Back AL, Arnold RM, Tulsky JA, et al. Teaching commu- modes of communication including puppets, sculpturing, and
nication skills to medical oncology fellows. J Clin Oncol. drawing.4 However before doing so, one must have an under-
2003;21:2433–2436. standing of this very unique hospital, and its origins and mission,
29. Back AL, Arnold RM. Discussing prognosis: ‘‘how much do which underlie our bereavement programs.
you want to know?’’ talking to patients who are prepared for
explicit information. J Clin Oncol. 2006;24:4209–4213.
30. Back AL, Arnold RM. Discussing prognosis: ‘‘how much do you CALVARY HOSPITAL
want to know?’’ talking to patients who do not want information Founded in 1899, Calvary Hospital is the only fully
or who are ambivalent. J Clin Oncol. 2006;24:4214–4217. accredited acute care specialty hospital in the United States
31. Back AL, Arnold RM, Baile WF, et al. Faculty development to devoted exclusively to providing palliative care to adult advanced
change the paradigm of communication skills teaching in cancer patients. It traces its beginnings to a group of 11 Catholic
oncology. J Clin Oncol. 2009. In press. widows who began caring for terminally ill women, using the
32. Francis LK. Learning to listen: a fellow’s experience. J Clin European Women of Calvaire movement as a model. Over the
Oncol. 2006;24:3209–3210. years, 2 orders of nuns, the Dominican Sisters of Blauvelt and
33. Arnold SJ, Koczwara B. Breaking bad news: learning through the Dominican Sisters of the Sick Poor, took up their work; they
experience. J Clin Oncol. 2006;24:5098–5100. began accepting male patients in 1947. In 1974, a lay administra-
34. Neff P, Lyckholm L, Smith T. Truth or consequences: what to tion was installed to lead the hospital.5
do when the patient doesn’t want to know. J Clin Oncol. This one-of-a-kind hospital has 225 beds—200 at a campus
2002;20:3035–3037. in the Bronx and 25 at a satellite with Lutheran Medical Center in
35. Hallenbeck J, Arnold R. A request for nondisclosure: don’t tell Brooklyn. It is devoted to palliative care for adults with advanced
mother. J Clin Oncol. 2007;25:5030–5034. cancer. It also has an active hospice program, begun in 1998, for
36. Francis PA. Surprised by hope. J Clin Oncol. 2008;26:6001–6002. people with all illnesses who can remain at home for their care.
37. Steensma DP. The narrow path. J Clin Oncol. 2001;19: Calvary serves about 15% of all individuals who die of cancer in
2102–2105. New York City.6
38. Armstrong J. Fellow suffering. J Clin Oncol. 2004;22:4425–4427. Embedded in the hospital’s mission is the philosophy of
nonabandonment. This is evidenced by the numerous bereavement
services the hospital provides without charge to family members and
How the Calvary Model of Nonabandonment Facilitates the community at large. The need to facilitate healthy bereavement,
Open Communication in Bereavement from cancer deaths and sudden or violent deaths, is great.
Sherry R. Schachter, PhD, FT, and Maria Georgopoulos, MA, FT.
Bereavement Services, Calvary Hospital/Calvary Hospice, Bronx, PHILOSOPHY OF CARE
New York.
Calvary’s ultimate goal is to help the dying patient live as
comfortably and usefully as possible until life ends Calvary earned
INTRODUCTION a reputation for compassionate and skillful control of patients’
It is well recognized that we communicate with one another symptoms long before palliative care and hospice care became
in numerous ways—by touch, sound, by direct or indirect verbal popular disciplines. Each patient is considered a ‘‘gift,’’ and
communication, etc. Although the exact percentage of how much therefore deserves to be treated with dignity, respect, and love.
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5. Abstracts J Pediatr Hematol Oncol Volume 32, Number 1, January 2010
The focus of care throughout the hospital is patient-oriented grief, and determine appropriate interventions in a timely manner.
rather than disease-oriented. The family is an essential part of the Separate homogenous groups meet weekly for bereaved parents,
unit of care and is given exceptional attention throughout the bereaved spouses or partners, adult children whose parents have
patient’s illness. One of our core beliefs is that care is not a died, adults who have lost a sibling. Calvary also provides short-
monopoly of any one discipline. Indeed, everyone involved in the time individual counseling for those who cannot, or do not want to
patient’s care makes some unique contribution. We offer a fully attend a group, or who may not be appropriate for group work.
coordinated program of palliative care—care that eases pain and For anyone who is not attending a group or receiving
increases comfort—by an interdisciplinary team, including physi- individual counseling, yet feels a need for bereavement services,
cians, nurses, family care specialists, nutritionists, pharmacists, we show a movie related to dying or bereavement. These Friday
psychiatrists, bereavement therapists, pastoral care providers of all matinees have become another successful way to communicate
denominations, physical and recreational therapists, art and music information about the bereavement process outside the confines of
therapists, and trained volunteers. Their primary goal is to make ‘‘verbal’’ therapeutic relationships.
patients as physically comfortable as possible, and to address with The Director of Bereavement Services coordinates and
dignity the psychologic and spiritual needs of patients and, equally facilitates the many bereavement programs offered at Calvary
important, the needs of their families. All Calvary care is guided by Hospital. In addition to those mentioned above, these include
our core values of compassion, respect for the dignity of every numerous educational programs for bereaved families and friends
patient, and nonabandonment of patients and families. as well as education programs for clinicians in the community. One
program, called Mentors Through Mourning, is a series of free
lectures for school administrators, teachers, guidance counselors,
STATISTICAL OVERVIEW OF CALVARY HOSPITAL psychologists, and social workers. Our Brown Bag Lunch Series is
In 2008, Calvary cared for more than 5440 patients and a weekly educational summer program for clinicians involved in
families: 3105 inpatients; 1899 patients through hospice and home palliative care. In addition, we offer a 10-week bereavement course
care; and 436 through the Center for Curative and Palliative for clinicians, now in our 18th year.
Wound Care and outpatient department. The Center recorded 6113 We publish a bereavement newsletter, Calvary in Touch,
patient visits in 2008, making it one of the region’s largest facilities which is mailed out every other month to our families and clinicians
dedicated to wound care. Our patients came from across the New in the community. The newsletter details all our bereavement services
York tri-state area and the majority (82%) of patients were aged 55 for the month and includes pertinent articles related to grief and
years and above. Minorities, including Asian, African American, bereavement, written by the hospital’s bereavement counselors.
and Hispanic populations, made up 45% of all inpatients. Nearly General discussions and/or bereavement workshops are
half (47%) of our patients were Catholic; 26% were Protestant; offered throughout the year. The themes for these discussions
14% were Jewish; and 13% were from other backgrounds, frequently tie into seasons or holidays.
including Muslim, Greek Orthodox, Buddhist, and Russian
Orthodox. The most frequent cancer diagnoses at Calvary Hospital
in 2008 were lung (16%); colon (8%); breast (8%); pancreas (7%); Programs for Bereaved Children and Adolescents
prostate (6%); liver (4%); stomach (3%); brain (3%); ovarian Calvary also offers bereavement support for young children
(3%); bladder (2%); and other cancers (40%). The average length and teens. Precious Moments, a weekly group for 6 to 11-year-olds,
of stay was 24.9 days; median length of stay was 12 days. began in 1991. Teen groups, begun in 2001, also meet on a weekly
basis. As all our bereavement programs are open to the community,
without charge, the focus of our work is communicating with these
AFTER DEATH: HOSPITAL RESPONSIBILITIES FOR youngsters in a way that is safe, appropriate, and meets their needs
BEREAVED FAMILIES without traumatizing them further. Approximately 4% of children in
the United States under the age of 18 years have experienced the
Condolence Cards death of a parent.7,8 The United States Census Bureau data from
Within 1 week of the patient’s death, family members receive 2002 indicate that about 857,000 children in the United States live in
a unique hand-designed condolence card. The cards are mailed to all a single-parent household because of the death of the other parent.9
families—whether the loved one died as a Calvary Hospital inpatient These numbers are significant, because for children, the death of a
or in our hospice. The condolence card is followed by an invitation to parent is perceived as a significant loss affecting their sense of security
the hospital’s monthly memorial service. and affection.10,11 Losing a parent is highly stressful for children, and
can leave them at risk for complicated grief.12–14 Bereaved children
can exhibit symptoms of distress including pain, sadness, anger,
Monthly Memorial Service confusion, sleep disturbances, and an inability to focus on school-
Every month, Calvary hosts a memorial service, where we work.9,15,16 Approximately 20% of bereaved children continue to
honor all Christian patients who have died the previous monthly. exhibit emotional and behavioral symptoms persisting for 2 years
Approximately 150 to 200 family members and friends attend this after a parent’s death.16,17
Service. Services are led by staff of our Pastoral Care Department Support can affect the grieving process and enhance
and the Director of Bereavement Services. The memorial service is parenting skills, and facilitate the child’s return to their previous
further enhanced by the attendance of one of our family members level of functioning.13,18 Higher rates of psychologic symptoms and
whose wife died several years ago in our hospital. He was so pleased distress are found in children from unstable home environments
and grateful with the care that they received that each month he plays and from families that have few resources or supports.17,19 Open
the harmonica and sings at the memorial service. A memorial service communication and shared information between the surviving
for patients of the Jewish faith is held every other month. parent and the child are correlated with better psychologic
outcomes for bereaved children.18,19
Studies have shown that attendance at bereavement support
Adult Bereavement Support groups and bereavement camps are helpful for children13,20–22 and
Our extensive bereavement program includes survivors of teens.23
those who have died at Calvary Hospital or in our hospice
program, and also those from the community whose loved ones
were did not die at Calvary. A major focus of our bereavement Bereavement Support for Children and Teens
services includes adult bereavement support groups that are closed, The Bronx (1 of the 5 boroughs of New York City) is an
time limited sessions that meet weekly for one and a half hours a urban area; the children and teens who live there reflect the
week. All groups are free, and they are open to the community. diversity of the New York City. Many of the children and teens we
Intake interviews are conducted to assess the bereaved serve live in poor neighborhoods. More than two-thirds are
individual, identify those who might be at high risk for complicated Hispanic and African American. In many cases, family ties are
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6. J Pediatr Hematol Oncol Volume 32, Number 1, January 2010 Abstracts
tenuous. Although many of the hospital’s bereaved children come being told the truth. She did not know how her sister died but she
from the families of patients, referrals also come from a variety of knew that her family was not being honest with her.
other sources: parents and guardians, social workers in the We worked with her guardian to get her past all the shame-
community and at other hospitals, school guidance counselors, and based feelings she had about telling this little girl the cause of death
case workers from the New York City Administration for Children’s and gave her the words to be able to tell her about her sister’s
Services. In some instances, the hospital receives referrals from the suicide. When the guardian was able to share this information, the
courts, which may mandate that a troubled child attend bereavement little girl came to group asking if she could finally share the truth.
groups. Families in this population experience many sources of stress She drew a picture of how her sister died and spoke of the reality of
in addition to the death of a loved one (eg, teen pregnancy, a higher suicide in her family. She was then able to obtain support from
incidence of divorce and separation).24 Clinicians and researchers everyone and begin the healing process.
often recommend participation in support groups as an appropriate We incorporate a ‘‘doctor’s session’’ in the group cycle,
intervention for bereavement. when a Calvary Hospital physician answers questions about illness
and death such as ‘‘what is cancer?’’ or ‘‘how do you know if a
person has died?’’ During one of these sessions, a child who came
Precious Moments and Teen Groups from our hospice program had a question about something he was
Precious Moments is our children’s bereavement support very disturbed about. He remembered his father being poked by
group for those aged 6 to 11 years. The group includes children these short needles sticking out of his body and had been too scared
who have lost a parent or guardian, a sibling, a grandparent or to ask his family what was happening during that time. The doctor
other important family member as well as the loss of a friend. As who participated in this session happened to remember working
our groups are open to the community, typical losses are illness- with this boy’s family and knew that he was talking about
related, and also accidents, suicides, and murders. The group meets acupuncture, which was used to alleviate his father’s pain. Our
in 8-week cycles on a weekly basis and focuses on assisting and physician was able to explain this to the boy and relieve his worry
empowering children with their grief process. The room is set up that his father had been in pain.
with stuffed animals, snacks, and the children’s artwork. The group Being given the opportunity to tell your story even if you
facilitators and children sit on pillows arranged in a circle and each were not there for the death is especially important. When told
session focuses on a different activity related to their grief. For about the death of a loved one, children and adults alike try to
young children in the lower primary grades, touch plays an piece together in their mind how the death happened to try to make
important role in their development. Touching can communicate a sense of it. We introduced a mosaic activity at our camp where the
sense of belonging, security, and understanding to the bereaved children and adolescents were asked to make a mosaic expression
child. They are not alone in their grief. of their grief. One girl chose to recreate the scene of her mother’s
Although children are not fully developed in their level of murder in her mosaic. She tried to make sense of a senseless act
understanding concepts of death and dying, they are still able to through her artwork. She included shards of glass that may have
understand separation and loss because they feel it. We teach been present after the incident, candy wrappers that may have been
children important life lessons when we allow them to honor their found on the street, drops of red paint to signify her mother’s
pain and participate in memorializing loved ones. The need to see, blood, and green paint to signify the murderer’s sweat involved in
feel, hear, and touch to understand is heightened with children and killing her. One part of her mosaic included a section of hope in her
adolescents, because this is how they learn about their world. healing process marked by the words ‘‘live, love, laugh,’’ and her
Allowing children to participate in funeral rituals helps them with belief in peace signified by a bird and a peace sign.
their acceptance of death, just as funerals help adults begin to Once children have the facts of their loved one’s death we
believe that a death has occurred. Clear communication about move on to helping them understand their feelings.26,27 Children
what they will see at a funeral helps children to be less frightened by are able to feel the pain of separation, sadness, anger, and fear
the body and also by others’ reactions to the death. but they may not know how to verbalize their feelings. They
The group activities are centered around 4 main objectives: also may not be aware of how their feelings affect their body.
(1) helping children understand the facts of their loved one’s death; Children in the group learn to explore their feelings and give voice
(2) helping them express their feelings around the loss; (3) to them. They also learn to develop healthy ways to express their
developing ways to remember their loved one; and (4) assisting feelings—particularly the more difficult ones such as anger, fear,
them with investing in their own lives and pursuits. and regrets.
Children are often given little information about the death One 8-year-old girl was harboring feelings of guilt for telling
of their loved one. They are also all too often excluded from rituals her mother that she hated her 2 days before her sudden death from
such as funerals, burials, and bedside good-byes.25 Parents or breast cancer. She had kept this to herself as she acted out angrily
guardians often feel they are protecting children by excluding them, in school. When we spoke about guilt and regrets in the group she
but children need to be included to facilitate their acceptance of the timidly wrote her guilt on a piece of paper and shared it with
reality of death. When working with children, it is important to everyone. To her surprise, several of her peers shared similar stories
educate parents or guardians about children’s grief processes to of angrily telling their loved one that they hated them or wished
help them impart important information about the cause of their them dead. Getting support from her peers normalized her feelings
loved one’s death. and opened the door to communicating as a group about the
Children have a deep need to tell their story and can only do nature of relationships and how we often become angry at our
so if they know the facts of how a person died. It is best to keep the loved ones but we cannot cause them to die.
facts as concrete as possible to avoid confusion. Depending on the In one activity, the children draw a body and place feeling
child’s age, they may not understand all of the information they are faces on the body parts where they feel that particular feeling.
given but they will take in as much as they can and as they grow in Drawing and other creative expressive interventions are effective
their understanding they will incorporate new information. modalities when working with bereaved children and teens.28 A
A group activity that can be used to help them tell their healthy way to express their anger is to write everything that makes
story is to have them draw what their loved one died from or to them angry about their loved one’s death on a balloon and then do
have them write about what they know about their loved one’s a ritual balloon popping. Children are often socialized to believe
death. We worked with an 8-year-old girl whose sister had that they should not express their anger. In the groups, we teach
committed suicide but she was not told about this. Instead, she them that anger is just like any other feeling that needs to have a
was told her sister had died of an asthma attack. This was voice. We provide them with ways to express anger appropriately.
confusing, because the little girl knew her sister never had any One way is to do something physical, such as punching a pillow or
breathing problems. During group time, when asked to draw how a scribbling it out. We also introduce music, outdoor play, and
loved one died, she would get very frustrated and draw nothing. In talking as ways to express feelings, reassuring them that they can
talking to her one-on-one, she was very angry that she was not find safe people to discuss whatever they feel.
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7. Abstracts J Pediatr Hematol Oncol Volume 32, Number 1, January 2010
Music has opened many doors to expression of feelings. One CAMP COURAGEOUS
10-year-old boy used a drum to express his powerful fear that other In 1997, Calvary initiated Camp Courageous. Our idea was
family members would die after his father’s murder. This was the to provide a safe environment where children and teens could come
first time he was able to express this fear during the year following together in a new venue and where intensive expressive therapeutic
his father’s murder. activities could be used to further their growth and development.
Developing rituals to remember a loved one and to honor Each year since then, the program has expanded, with new
their pain is another important aspect of a child’s grief process. activities that are congruent with current research. The weeklong
Having children visit the cemetery, write a letter to their loved one day camp is supported by the hospital and by individual,
or have birthday cake on their loved one’s birthday can foster foundation, and corporate donations. Attendance is restricted to
healing in many children. Assisting them with identifying special children and teens who have attended the hospital’s support groups
objects they may hold on to for comfort such as ‘‘mom’s favorite or are known to the staff.
sweater’’ or ‘‘a locket with dad’s picture in it’’ helps children Counselors consist of staff members from Calvary Hospi-
maintain a connection to their loved one. Making a grief bracelet in tal’s nursing and hospice departments; they were joined by others
the group makes their pain real and is a way to acknowledge their from pastoral care, the laboratory, pharmacy, and even the security
grief, much like wearing black may be a symbol of grief in an adult. department. As many of the children live in households headed by
One 6-year-old boy was able to express his feelings of loss to his women, we recognize the need to have male counselors who could
father for the first time by explaining to him what his grief bracelet act as role models for the campers. The counselor:camper ratio is
signified. 1:2, as we believe it is important for campers to receive individual
Finally, giving children permission to be children again is attention and have an opportunity to share their stories with
especially important. Children need to be reassured that it is okay counselors and with their peers. Campers and counselors partici-
to have fun and this does not mean that they no longer love the pate in various bereavement and recreational activities throughout
deceased. We teach children that to incorporate a loss in our lives the week. On the last day, campers, parents/guardians, and
does not mean that we need to stop our own life. Helping children counselors complete evaluations.
to clearly identify their interests and have them slowly begin to For most activities, the campers are divided into 2 large
pursue those interests again teaches them that they can handle all groups (6 to 11 y and 12 to 18 y) and then into smaller groups with
their emotions without forgetting to take care of themselves. counselors. However, in many instances, the entire group comes
Activities in this area center around helping them to identify other together for an activity to promote intimacy and allow the campers
special people in their life that they may go to for support, perhaps to see the similarities in their experiences across age groups.
by having them make a family tree. We also talk about what it The group circle is a daily part of the camp experience. After
means to take care of themselves and draw what makes them breakfast, campers and counselors gather in a circle to discuss how they
feel happy and safe. We make sure to spend some time laughing in are doing and review the day’s schedule. At the end of the day, they join
the group and doing something fun, such as throwing a ball around together in a circle to recap the day’s events, and share feelings again.
or making pictures of the things we love and cherish about our When separated into smaller groups the children are less
lives. intimidated and are often more expressive and communicative. We
retain the large group for the first day (for introductions) and the
last day (for closure). The group circle experience helps campers see
the universality of their feelings and form bonds with one another.
TEEN GROUPS It also gives counselors an opportunity to interact with all the
Group support is an ideal intervention with bereaved campers and to model appropriate group behavior.
teenagers as they are comfortable and used to being in groups
(eg, sport programs, school activities, etc.).29 A group setting
provides a safe place where the bereaved adolescent can learn and
practice social and interpersonal skills with other teens.29,30 Our CONCLUSIONS
teen groups are tailored to adolescents between the ages of 12 to 18 Teaching children to communicate in an adult world can be
years. The teen groups follow a similar structure and set-up challenging and inspiring. Children feel comfortable in a world of
(without the stuffed animals, which are not age-appropriate for play where they can learn a lot about life if given the opportunity.
teens). Again, the groups are open to the community and include Children take in a lot of the world but are unable to make sense of
many different relationships-death of a parent/guardian, sibling, it without the help of adults. Helping them to define what they see,
grandparent or other important family members, and also the hear, touch, and feel helps them to grow up with tools to manage
death of a friend. The death of a friend is a very significant loss for all of life’s challenges. We all learn and see things in our own
this age group, not only because teens tend to gravitate toward specific way and identifying various modes of expression and
their peers, but also because suicides and fatal accidents are communication to children makes them more secure adults in the
prevalent in this population. The loss of a friend may not seem future. Children are able to handle a variety of different experiences
important, yet it can be devastating for a teen. The teen groups if they are prepared for them through honest communication that
allow older children to interact with bereaved peers, which help meets them at their own level of understanding.
them realize that they are not alone 22,31 and can also relieve the References:
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The teen groups focus on a specific art activity each week to 2. Rogers N. http://74.125.95.132/search?q = cache:xOt9rnbfVcM-
address their grief. Special attention is given to certain aspects of JU:www.nrogers.com/PCETIarticle.pdf Retrieved April 21, 2009.
adolescence that are not necessarily a major focus for the children. 3. Harting LB, Tompkins JM, Ryan-Wenger NA. Grief masks.
Adolescents tend to have more regrets about things said or done J Pediatr Health Care. 2004;18:308–309.
and a lot of activities focus on drawing them out to enable them to 4. Expressive arts: narrative therapy with children and their families.
speak about these regrets. One helpful activity is painting a ‘‘box of http://www.narrativeapproaches.com/narrative%20papers%20folder/
letting go.’’ This involves having them write out all that they feel art/_therapy.htm. Retrieved April 21, 2009.
guilty about, sharing it with their peers and then symbolically 5. Cimino JE, Brescia M. Calvary Hospital: A Model For Palliative
placing their regrets in a box in an effort to let them go. It is also Care in Advanced Cancer. Merrick NY: IPO Graphics Inc.; 1998.
important to help them recognize that it is okay to focus on their 6. Schachter SR. Bereavement summer camp for children and teens:
own life and identify their dreams and goals. Teens often feel guilty a reflection of nine years. Palliat Support Care. 2007;5:315–323.
about graduating from high school without their loved one being 7. Sandler IN, Ayers TS, Wolchik SA. The family bereavement
there or about pursuing their dreams in the absence of loved ones. program: efficacy evaluation of a theory-based prevention
28 | www.jpho-online.com r 2010 Lippincott Williams Wilkins

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program for parentally bereaved children and adolescents. 35. Schachter SR. Cancer patients facing death: is the patient who
J Consult Clin Pract. 2003;71:587–600. focuses on living in denial of his/her death? In: Bartalos MK,
8. Wolchik SA, Tein JY, Sandler IN, et al. Stressors, quality of ed. Speaking of Death: America’s New Sense of Mortality. NY:
the child-caregiver relationship, and children’s mental heath Praeger Publishers; 2008:42–77.
problems after parental death: the mediating role of self- 36. Schachter SR. Palliative care, end of life and bereavement.
systems beliefs. J Abnorm Child Psychol. 2006;34:221–238. In: The Wellness Community Innovative Models of Inter-
9. Lohan JA. School nurses’ support for bereaved students: a national Psychosocial Oncology Training. A Training Manual.
pilot study. J Sch Nurs. 2006;22:48–52. Washington, DC: The Wellness Community; 2008:39–71.
10. Kuntz B. Exploring the grief of adolescents after the death.
J Child Adolesc Psychiatr Ment Health Nurs. 1991;4:105–109.
11. Silverman PR. Never too young to know: death in children’s The Narrative Approach to the Elderly Patient
lives. NY: Oxford University Press; 2000. Lodovico Balducci, MD. Division of Geriatric Oncology, Senior
12. Cerel J, Fristad MA, Verducci J, et al. Childhood bereavement: Adult Oncology Program, Department of Interdisciplinary Oncology,
psychopathology in the 2 years post parental death. J Am Acad University of South Florida College of Medicine, H. Lee Moffitt
Child Adolesc Psychiatry. 2006;45:681–690. Cancer Center and Research Institute, Tampa, FL.
13. Christ GH, Christ AE. Current approaches to helping children cope Cancer is a disease of aging. Fifty percent of all malignancies occur
with a parent’s terminal illness. CA Cancer J Clin. 2006;56:197–212. in people 65 years and above and this percentage is expected to
14. Kirwin KM, Hamrin V. Decreasing the risk of complicated increase with the aging of the population.1
bereavement and future psychiatric disorders in children. The management of cancer in the older aged person is complicated
J Child Adolesc Psychiatr Nurs. 2005;18:62–78. by the diversity of the older population. For more than 15 years I
15. Corr CA. 2000. What do we know about grieving children and have recommended that the treatment of patients aged 70 years and
adolescents? In: Doka KJ, ed. Lining with Grief: Children, above be based on physiologic rather than chronologic age.1 Age
Adolescents and Loss. NY: Hospice Foundation of America; 70 years is a landmark beyond which the majority of older people
2000:21–32. are found, but it would be inappropriate to consider old every
16. Dowdney L. Childhood bereavement following parental death. person 70 years and above. Physiologic aging is assessed with a
J Child Psychol Psychiatry. 2000;41:819–830. comprehensive geriatric assessment that includes function, comor-
17. Worden JW. Children and Grief: When a Parent Dies. New bidity, presence or absence of the so-called geriatric syndromes,
York: Wiley; 1996. polypharmacy, nutrition, and social support.1
18. Kirk K, McManus M. Containing families’ grief: therapeutic Even the CGA is inadequate however to assess some other
group work in a hospice setting. Int J Palliat Nurs. 2002;8:470–480. important determinants of treatment that include the patients’
19. Christ GH. Healing Children’s Grief: Surviving a Parent’s values and goals, inscribed in the meaning of the patient’s life. Nor
Death from Cancer. London: Oxford University Press. 2000. does the CGA provide an assessment of the quality of the patient’s
20. Dowdney L, Wilson R, Maughan B, et al. Psychological relationships with others as well as with her/himself. Last but not
disturbance and service provision in parentally bereaved children: least, the communication with the older aged person may be
prospective case-control study. BMJ. 1999;319:35–357. problematic, partly due to sensorial and cognitive decline, and
21. Creed J, Ruffin JE, Ward M. A weekend camp for bereaved partly due to diversity of language between the older person and
siblings. Cancer Pract. 2001;9:176–182. the younger provider. In this study I will try to demonstrate how
22. Mitchell AM, Wesner S, Garand L, et al. A support group narrative may complement the medical, sociologic, and emotional
intervention for children bereaved by parental suicide. J Child assessment of the older person. Narrative may provide at the same
Adolescent Psychiatric Nursing. 2007;20:3–13. time a more thorough evaluation of the needs and resources of the
23. Steen KF. A comprehensive approach to bereavement. Nurse patient and a more effective communication.
Pract. 1998;23:54–68.
24. Ople ND, Goodwin T, Finke LM, et al. The effect of a
bwreavement group experience on bereaved children’s and NARRATIVE IN HUMAN CENTERED RESEARCH
adolescents’ affective and somatic distress. J Child Adolescent Narrative is one of the tools of qualitative research that is a
Psychiatric Mental Health Nurse. 1992;5:20–26. form of research aimed to take into accounts nonmeasurable
25. Geis HK, Whittlesey SW, McDonald NB, et al. Bereavement aspects of a personality, such as beliefs, values, and meaning.2,3
and loss in childhood. Child Adolesc Psychiatr Clin N Am. It is important to realize that there are many narratives of
1998;7:73–85. each human experience: the narrative of the subject, the narrative
26. Rothe E. A psychotherapy model for treating refugee children of the people who interact with the subject (physicians, nurses,
caught in the midst of catastrophic situations. J Am Acad social worker, dietitian in the case of medical encounters), and the
Psychoanal Dyn Psychiatry. 2008;36:625–642. narrative of a distant observer of the interaction. Furthermore,
27. Gil E. The Healing Power of Play. NY: Guilford; 1991. each narrative is fluid, as the same experience is modulated by new
28. Malchiodi CA. Using creative activities as intervention for experiences, not unlike our vision of a building or of a landscape
grieving children. http://www.tlcinstitute.org/creative.html Re- varies continuously with the change of the position of the observer.
trieved April 20, 2009. This ongoing change of perspective has been named the fourth
29. Moon PK. Reaching the tough adolescent through expressive dimension that the cubist artists tried to reproduce in their
arts therapy groups. http://www.counslingoutfitters.com/ paintings and sculptures. Thus we are to assume that each
Moon2.htm Retrieved April 21, 2009. narrative is an evolving interpretation of the reality, and that
30. Schachter SR, Georgopoulos M. Camps for grieving children: communication is reached only through interactive narratives.
lessons from the field. In: Doka KJ, Tucci A, eds. Living with Without this interaction human experiences may run parallel like
Grief: Children and Adolescents. Hospice Foundation of fluids of different density overlap each other without ever mixing,
America. NY: Brunner Routledge; 2008:233–255. or may occupy different 3-dimensional spaces, like the cacophonic
31. Web NB. Helping bereaved children: A Handbook for sounds of a busy street. The examples of both ‘‘noninteractions’’
Practitioners; NY: Guilford Press. are plentiful. The traditional family in which the main rule was to
32. Broome M. Nonverbal Communication. Adapted from a work- prevent conflict represents a classic example of fluids that do not
shop handout by Dr Rehman, University of South Carolina. mix. Today we are more used to the second type of noninteractions
33. Englund MM, Levy AK, Hyson Dm, et al. Adolescent social including the shouting matches of advocacy groups with different
competence: effectiveness in a group setting. Child Dev. 2000; political agendas, or of divorcing spouses who have never learned
71:1049–1060. how to fight and communicate at the meantime.
34. Leader E. Why adolescent group therapy. J Child Adolesc The patient provider interaction also wants an encounter of
Group Ther. 1991;1:81–93. narratives. One of the paradoxes of our times is the increasing
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9. Abstracts J Pediatr Hematol Oncol Volume 32, Number 1, January 2010
dissatisfaction with the medical profession at a time when medicine More in general, however, narrative may help the provider to
has produced therapeutic advances that would have been recalibrate continuously his/her role and to gain a progressively
unbelievable only 10 years ago! It looks as we have lost the ability better appreciation of his/her own personal value.
to decode the patient’s language when we learned to decipher the
language of the DNA.
It easy and unfair to oppose high tech and high touch TABLE 1. Roles of Narrative in Geriatric Oncology
cultures. In reality modern medicine has always pretended to be
high tech and has always disdained high touch as a form of Communication
renunciation to its scientific duties. Millions of individuals have Language
fallen victims of ‘‘scientific medicine.’’ It is well known that Dr Values
Benjamin Rush killed many more patients with the phlebotomies Discovery
used to treat yellow fever than the yellow fever ever did in Chicago Patient
in the 1800s, and we have recently learned that many more people Professional
have been hurt by the early detection of prostate cancer than ever Resources
would have been by prostate cancer itself.4,5 Thus, I believe that the Social
technology itself is not to blame. Rather one should blame a 2-fold Personal
false pretense entailing that medicine is a science and that medical Shared decision making
findings always promote human happiness and prosperity. The
screening of asymptomatic patients for early prostate cancer is an Narrative may unearth unexpected and extremely valuable
excellent example. It was wrongly assumed that early detection and sources of support. When I learned from one of my patients who
treatment of cancer would always led to a cure and that the was dangerously anemic that he was a Baptist minister I called the
prevention of few prostate cancer deaths was beneficial despite the local seminary and obtained 78 blood donations in a single day, so
substantial price of sexual impotence and urinary incontinence for many that the blood bank could not handle them: it looked like a
millions of men and the loss of intimacy for millions of couple. modern version of the multiplication of breads and fish by Jesus.
Whether based on bad science (as it was the case of Dr Rush) or Ultimately, narrative allows shared decision making that is
good science the main problem of scientific medicine has been the the main goal of a medicine that considers personal autonomy the
ignorance of the patients’ voice, of the patient’s narrative. This is supreme value.
particularly true in the case of older individuals, because limited life Investigations based on narrative have rules that it would
expectancy and limited tolerance of stress lessen the benefits and take too long to summarize in the present context. The basic
increase the risk of any forms of medical intervention.1 In addition, analysis involves analysis of the content and analysis of the
a long life experience certainly has modulated the values of these language. I will provide now 2 examples of this type of analysis.
individuals. Although the prolongation of life might be the
preponderant goal of cancer treatment for the young breadwinner
of a young family, preservation of meaning may be the most ANALYSIS OF PATIENT NARRATIVES
important goal of an old person facing an incurable disease.
In addition to the aging of the population, a number of The Indian Chief
other changes mandate the search of a common language in the There was something unusual about this old man in jeans
practice of medicine. This include globalization that has produced and T-shirt, maybe his long hair or the nuance of the skin. I really
many cultural and ethnic clashes, the disappearance of the could not say. He saved me the troubles of further detective work:
extended family, that has reduced the pool of home caregivers,
the experimenting of new forms of family, including same sex ‘‘Good morning Dr Balducci, I am chief Whitehorse (the name is
couples or unmarried couples with children, and last but not least invented). You are perplex doctor? Yes, I am an Indian chief; my
the emerging voices of the minorities. Feminism may be considered tribe was disbanded a long time ago, at the beginning of the
a defining motive of this change, as it called for the overturning of a century. You would not find any records of it. It is all here—he
patriarchal society model and for a definition of the mutual roles of pointed to his heart—transmitted to my father by my grandfather
the partners based on an ongoing negotiation aimed to validate and and by my father to me. If you are going to be my doctor you need
improve individual talents. to know it. I am not afraid of dying, but I have something to
Thus, the search of a common language through narrative accomplish before I die. I have to finish the history of my tribe, that
should be a goal for any medical provider wishing to be effective, not otherwise will fall into perennial oblivion’’
just for those caring for the elderly. The elderly represent a convenient ‘‘Nice meeting you chief! How much time you need to finish your
model to highlight the roles of narrative in medical practice. history?’’
Table 1 summarizes the roles of narrative in geriatric ‘‘Approximately 6 months’’
oncology. Language is based on values. Values need not to be ‘‘Chief, I started writing on a yellow pad, as I generally do, to leave
shared, but have to be respected when communicating: a patient some tangible documents of our encounter, here are the facts. You
has the right to refuse life saving treatment, such as a feeding tube have what we call hormone refractory prostate cancer. We have
or to ask for life-prolonging treatment such as artificial ventilation, two options: chemotherapy with Docetaxel and prednisone has a
even if the provider disagrees with that decision. The narrative 50% chance to obtain a response, and with a response you can
allows unearthing special aspects of the patient’s life that may be leave 12 to 13 months, but you may feel too tired to write. Without
important to the treatment plan. A clear example is the presence of chemo you have approximately 9 months to live. If you develop
an illegitimate child to whom a dying patient wants to bequeath bone pain, that is very likely, we can treat you with radiation or
some of his/her wealth. This type of information is unlike to emerge radioisotopes, which may relieve the pain without causing nausea or
during a standard medical encounter especially if the legitimate fatigue. You realize of course that I can’t predict your outcome.’’
spouse and the legitimate offspring are present. The narrative also ‘‘Thanks for leveling with me doctor: I’ll try to stay without chemo.
allows the health professional to discover something about her/ I know I will be able to write my history.’’
him. For example, it is common to have feelings toward the ‘‘How can you be so sure?’’ I was intrigued
patient, and these feelings cannot be controlled. What can be ‘‘Because the night I was borne, in a small hut in an island of the
controlled is what we do with those feelings. A patient perceived as Chesapeake Bay, there was a terrible thunderstorm, and a
disagreeable may be shortchanged unless the provider is aware of lightening broke the island into two pieces. That signed my
these feelings and of their sources and takes appropriate measures. destiny. It meant that after me there would have not been any
These may include avoidance of judgment (blaming the victims: the recognizable descendants of my tribe. That sign bestowed on me
patient is responsible for the disease and the poor outcome) and in the task to preserve the memory of my tribe.
extreme cases the referral of the patient to a different provider. ‘‘Don’t have you children?’’
30 | www.jpho-online.com r 2010 Lippincott Williams Wilkins

10. J Pediatr Hematol Oncol Volume 32, Number 1, January 2010 Abstracts
‘‘I have two daughters,’’ he answered, signifying that I personal history, it gave me an additional chance to support
would have not obtained any more answers. Christ’s pain, to redeem myself of the many past refusal to
I had monthly visits with chief Whitehorse. When he acknowledge Christ in the dying patient (or for that matter in the
developed pain we treated him with radiation therapy, radio- dying family members: I must confess that I lived the passing of my
isotopes, and during the last 2 months of his life with intrathecal parents and of other older people I cared for as a form of relief
opioid infusions, not to cloud his cognition with systemic opioids. from a frustrating duty, a waste of my time).
´
With injections of epoetin a, we managed his anemia, so that he did The message of the chief had very important implications in
not feel too fatigued for writing. He died few days after returning the planning of his care:
the correction of the galley proofs of his book to the publisher. First, I felt that I had to level with him at any step of the
I learned many other things of the chief; as a young man he treatment. Although we were not exactly friends, we had a
had been an activist for the rights of the minorities; he had married relationship, we had met each other. The preservation of his trust
an African American woman from whom he was divorced. He had was as important to me as the preservation of the trust of my
not paid much attention to his mission until he was diagnosed with spouse or my closest friends.
prostate cancer and realized that he had a limited time to live. I Second, we shared the deep-seated conviction that we were alive
never met any member of his family and he made it clear he did not for a reason, that we had a unique function that only we could
care to talk about them. perform, that we were sacred. This common persuasion
established a kind of brotherhood among us. We recognize each
other as children of a common father that had commissioned us
Analysis of the Case a special function. The sentiment of being part of the same
The chief was a good narrator. His story emerged family also supplied us with a common language. We both
spontaneously, without being prompted. I may deserve the credit, believed in signs and in their interpretation.
however, to have allowed him to talk, rather than to cut him short Third, the chief’s sense of mission determined the goal of care.
or to ignore his message. His message was very important to the Instead of aiming to keep him alive indefinitely with whatever
treatment plans. means, I was committed to preserve his life and his cognitive
Four messages emerged from his brief history: function long enough for him to finish his writing.
‘‘I am an Indian Chief’’ meant to tell me: I am a person with Fourth, I learned a lasting lesson that will influence my practice of
a precise role in my life, I am not a statistic and even less am I a medicine from then on. I learned what the writers of the Quoleth
number. I am in charge of my life, you are my adviser but you are meant when he said that there is ‘‘a time to be borne and a time to
not expected to take decisions for me. Of course I wondered if he die.’’ This lesson is particularly pertinent to modern medicine:
also wanted to emphasize the importance of his role, but I do not nowadays death is almost always a managed death, unless one dies
think so. During the many struggles of his life he must have learned immediately in the course of an accident. Artificial ventilation may
over and again that being an Indian chief without tribe did not prevent indefinitely the death from respiratory failure and artificial
amount to much in our times. I prefer to think (and this is my dialysis the death by renal failure, while invasive cardiovascular
narrative) that he identified himself as a chief the same way another support methods may delay death from heart failure. In these
person would have identified himself as a plumber, a postman, a circumstances, providers and patients alike are faced daily with the
teacher, or even an unemployed person. He wanted for me to know question ‘‘when is it the time to die?’’ The chief provided the
him as a person, he requested personalized treatment. answer: the time to die is when we are incapacitated to pursue our
‘‘I am not frightened by death, but I have something to mission. The chief taught me to obtain a ‘‘value history’’ from all
accomplish before I die’’ meant: I have a mission in this life. I want of my patients, to try to understand what they identify as their
just enough life to accomplish my mission; my life is worth living unique mission in life.
only as long as I can carry on my task. I do not believe he ever used
the word mission, and I doubt that that he was even familiar with
its meaning, but I believe I am justified to use it in narrating ‘‘my’’
history of the encounter with the chief. ‘‘Mission derives from the The Witch
Latin ‘‘mittere’’ ‘‘To send.’’ The chief wanted to tell me that he was She gave the impression of never have been young. From
endowed with a special charge that only he could accomplish. The her papers I knew that she was 82 years old, but she could as well
statement of one’s mission is the statement of one’s uniqueness or have been 50 or 90. Despite my attempts to establish eye contact,
sacrality (sacrum in Latin means reserved for a special task). her eyes did not offer to me a single chance to meet. If anything she
‘‘When I was borne a thunderstorm broke the island and reminded me of the oxen I had witnessed during my infancy
sealed my destiny’’ meant ‘‘I believe in signs and you have to plowing the ground from early morning to late night. Her son was
respect my beliefs.’’ The chief and I never discussed religion or standing and walking up and down, rubbing his hands as if trying
God, yet I could not help seeing the power of the biblical narrative to wash something away.
in the description of his birth. As a Christian I have to account for ‘‘Good morning, I am doctor Balducci. I wish to thank you
a number of histories that are foreign to my experience: God that for coming to see me, and I hope that my accent won’t hamper our
talks to Moses through the burning bush and on Mount Sinai, God communication I said with my best smile, can you understand me
that talks to Samuel in the night and command to Samuel to anoint Mrs. Smith’’
the kings of Israel; God that talk to Elijah and to the prophets, etc. ‘‘Yes I can,’’ she answered.
I may dismiss these stories as myths and legends or I can humbly ‘‘And you?’’ I had turned to the son he grumbled something
accept that our Jewish ancestors had the ability to listen to nature I took for an affirmative answer.
and to recognize the voice of God, an ability that we have lost. ‘‘Mrs. Smith I will be as honest as possible: is it OK?’’ No
Thus, I could consider the history of the chief’s birth germane to answer.
the religious history I have been familiar with. Whether he ‘‘You have a lymphoma,’’ a cancer of the lymph nodes;
identified or not the author of the signs, he had been commissioned there are at least a hundred types of lymphomas. The good thing is
by a being beyond human comprehension. that yours is curable in most cases, but you will have to take some
The chief refusal to speak about his family relationship was chemotherapy, and I went into a long explanation of how
also part of his history: it indicated that he was alone in his pursuit. chemotherapy is given and what kind of side effects to expect. I
He could only count on the strength of the deity that had was not sure she was even listening to me.
commissioned him and on my advice if I elected to believe him. I ‘‘Look doctor, the son finally butt in, I took her here
could not help seeing in the faith and the suffering of this dying because I read that you specialize in treating cancer in old people.
man the loneliness of Christ abandoned by his disciples. As a She is old, so I leave her in your hands.’’
believer I gained the impression of caring for the dying Christ. This I took a deep breath. If I understood him correctly he was
of course made the interaction with the chief very meaningful to my planning to dump his elderly mother into my hands for total care,
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