Download Evidence-Based Recommendations for Information and

VOLUME
26
䡠
NUMBER
23
䡠
AUGUST
10
2008
JOURNAL OF CLINICAL ONCOLOGY
R E V I E W
A R T I C L E
Evidence-Based Recommendations for Information and
Care Planning in Cancer Care
Anne Walling, Karl A. Lorenz, Sydney M. Dy, Arash Naeim, Homayoon Sanati, Steven M. Asch,
and Neil S. Wenger
From the David Geffen School of Medicine at University of California at Los
Angeles; VA Greater Los Angeles
Healthcare System, Los Angeles; RAND
Health, Santa Monica; University of California, Irvine, Irvine, CA; and Johns
Hopkins University, Baltimore, MD.
Submitted December 23, 2007;
accepted May 19, 2008.
Supported by a grant from Amgen Inc
to the RAND Corporation.
Authors’ disclosures of potential conflicts of interest and author contributions are found at the end of this
article.
Corresponding author: Anne M. Walling, MD, 911 Broxton Ave #3D, Los
Angeles, CA 90024; e-mail: awalling@
mednet.ucla.edu.
A
DOI: 10.1200/JCO.2007.15.9509
3896
S
T
R
A
C
T
The practice of oncology is characterized by challenging communication tasks that make it difficult
to ensure optimal physician-patient information sharing and care planning. Discussions of
diagnosis, prognosis, and patient goals are essential processes that inform decisions. However,
data suggest that there are deficiencies in this area. We conducted a systematic review to identify
the evidence supporting high-quality clinical practices for information and care planning in the
context of cancer care as part of the RAND Cancer Quality–Assessing Symptoms, Side Effects,
and Indicators of Supportive Treatment Project. Domains of information and care planning that are
important for high-quality cancer care include integration of palliation into cancer care, advance
care planning, sentinel events as markers for the need to readdress a patient’s goals of care, and
continuity of care planning. The standards presented here for information and care planning in
cancer care should be incorporated into care pathways and should become the expectation rather
than the exception.
J Clin Oncol 26:3896-3902. © 2008 by American Society of Clinical Oncology
© 2008 by American Society of Clinical
Oncology
0732-183X/08/2623-3896/$20.00
B
INTRODUCTION
Cancer is an emotionally laden, often disruptive,
and sometimes tumultuous experience for patients,
families, and providers. Good communication with
an emphasis on anticipatory planning is an essential
aspect of good oncology care. A number of critical
processes are implicit in good cancer care communication. Discussions of diagnosis, prognosis, and
treatment decisions and deciding who to include in
the discussions are essential processes that inform
decision making.1-4 Most patients desire to participate in decisions regarding their own treatment.5-7
Timing of these steps is another critical issue, and
although perhaps reluctant to raise these issues
themselves, most cancer patients want to discuss
these issues when the oncologist feels it is necessary.8
Earlier efforts to improve cancer care communication emphasized advance directives, or written
legal documentation addressing resuscitation preferences; however, more recent efforts emphasize advance care planning (ACP). Legal standards, clinical
guidelines, and ethical consensus support ACP as a
key aspect of excellent supportive care.9,10 ACP is a
broad construct that emphasizes the steps required
to facilitate patients to guide their future care including the specification of surrogate decision makers.
The broad goal is to bring together patients, caregivers, and providers to develop a coherent care plan
that meets the patient’s goals, values, and preferences. Because delirium and other forms of cognitive impairment are prevalent during treatment
and as malignancies advance, identifying and engaging a surrogate in the process of ACP is especially important.11-14
Good quality communication and ACP commonly do not occur for reasons related to physicians, patients, and the practice environment. An
example is telling a patient bad news. Many physicians have difficulty transmitting bad news.15,16
Although understanding prognosis is essential to
making informed decisions about cancer therapy,
physicians may be concerned about engendering
despair in patients and thus avoid explicit discussion of a poor prognosis.17-19 Although it is generally accepted that accurate prognostication is
helpful in the care of oncology patients, physicians do not always have accurate prognostic information or adequate prognostic tools, and
prognosis is rarely documented in the medical
record.20-25 In addition, cancer patients often do
not feel comfortable addressing their concerns in
a clinical encounter, and such issues often remain
unexplored.26-28 There is also lack of evidence
regarding appropriate timing of discussion with
oncology patients about difficult future treatment
options, and best practice is currently based
mostly on qualitative studies.27-29
© 2008 by American Society of Clinical Oncology
Information downloaded from jco.ascopubs.org and provided by at University of British Columbia on January 12, 2011 from
Copyright © 2008 American Society
142.103.160.110
of Clinical Oncology. All rights reserved.
Information and Care Planning in Cancer Care
Time constraints during the clinical encounter may distract physicians or impede initiation of conversations in areas that tend to be
difficult to discuss. Ideal communication strategies have been delineated by experts that emphasize the need to be sensitive to patients’
perspective concerning their cancer and to continually address their
need for information, support, and involvement in the care plan.3,30
Such patient-centered communication approaches are time intensive,
and limited data suggest that they are often absent in current clinical practice.31
The importance of assuring communication that facilitates
ACP is underscored by evidence that the aggressiveness of cancer
treatments, even among patients with a poor prognosis, continues
to increase. Medicare claims from patients with malignancy
showed that the percentage of patients receiving chemotherapy
within 2 weeks of death increased from 13.8% in 1993 to 18.5% in
1996, and there were similar increases in hospitalizations, emergency room visits, and intensive care unit stays.32 Yet, it is unknown whether this reflects increased desire for aggressive care at
end of life. Among 335 decedents with breast cancer, 2 months
before death, 64% of patients continued to receive endocrine therapy, and 20% received chemotherapy.33 Although patients often
continue to receive aggressive cancer care toward the end of life, it
seems that efforts at palliation are not aggressively pursued. The
Study to Understand Prognosis and Preferences for Outcomes and
Risks of Treatment showed that, among patients with colon and
non–small-cell lung cancer, approximately 28% of patients suffered from confusion in the last 3 days of life and 40% were in
serious pain during the last 3 days of life despite the fact that more
than 65% of these patients had a preference for comfort care in the
last 3 days to 1 month of life.11 Of the patients in this study with
lung and colon cancer who had a preference to focus on comfortoriented care in the last 3 days of life, one in 10 received care that was
incongruent with their preferences as reported by family members.34
We undertook a project to define quality standards for communication and ACP in cancer. We attempted to define the research evidence, clinical expertise, and consensus about ethical
practice that would support a minimum set of practices required as
a part of good care. This article presents our review of the literature
that supports the need for oncology practice to routinely address
integration of palliation with cancer care, ACP, sentinel events as a
marker for the need to readdress a patient’s goals of care, and
continuity of care planning.
METHODS
We conducted a systematic review to identify the evidence supporting highquality clinical practices for supportive cancer care as part of the RAND Cancer
Quality–Assessing Symptoms, Side Effects, and Indicators of Supportive
Treatment Project (Lorenz et al, submitted for publication). A five-clinician
team including experts in oncology, palliative medicine, and ethics prioritized
symptoms related to cancer, treatment-related toxicities, and information and
care planning needs for quality indicator development. Information and care
planning was identified as a priority because of its likely impact on patient and
family care decisions and quality of life. The Assessing Symptoms, Side Effects,
and Indicators of Supportive Treatment Project addressed the minimum
standard of care for information and care planning consistent with quality
supportive cancer care.
This report describes the evidence related to quality indicators for information and care planning that were regarded as valid and feasible by an expert
www.jco.org
panel. Articles were identified through MEDLINE, the Cochrane Database
of Systematic Reviews, Cochrane Database of Abstracts of Reviews of
Effects, and the Cochrane Register of Clinical Trials (1996 to 2006). We
limited searches to English language, using terms combined with each
topic area (Appendix, online only). To enrich the 10-year literature review,
we searched for earlier citations selectively. We searched broadly and later
included studies that included patients other than oncology patients because there are few formal trials of ACP specific to oncology.35 It is also
important to note that much of the information underlying excellent
practice in this area is theoretical literature based on ethical and professional principles rather than empiric experience.
In addition, we also evaluated relevant material from previous systematic
reviews; we evaluated guidelines and quality indicators published after 2004
using the National Guideline Clearinghouse, National Quality Measures
Clearinghouse, and Web sites of professional societies, medical organizations,
and patient advocacy groups. Google searches made use of key words related to
potential indicator topics.
PALLIATIVE CARE AND HOSPICE INTEGRATION
Cancer patients often receive aggressive care toward the end of life
despite the fact that many could benefit from more comfort-oriented
care.11,32,33 Comprehensive treatment of cancer patients is broader
than simply offering the next available aggressive treatment. The
National Comprehensive Cancer Network and the National Consensus Project for Quality Cancer Care guidelines indicate that
providing comprehensive multidisciplinary care should address pain
and other symptoms, spiritual or existential concerns, caregiver burdens, and ACP.
A recent review of 18 studies regarding patient preferences for
venue of death for the general population or groups containing cancer
patients concluded that home and hospice care were the most desirable end-of-life locations.36 Qualitative studies and nationally representative surveys of patients and caregivers highlight the
importance of addressing pain and symptom management, communication of care plan, financial issues, caregiver support, and preparation for death.37-41
The palliative care team in the form of inpatient palliation or
community hospice can provide supplemental components to round
out comprehensive cancer care. A systematic review by Higginson et
al42 of studies through 1999 evaluating the effectiveness of hospice and
palliative care teams looked at 44 studies including five systematic
reviews with 30 randomized controlled trials (RCTs) and four additional RCTs (22 home based, nine hospital based, four combining
home and hospital, three inpatient units, and six home hospice/hospital). A considerable proportion of patients in these studies had
cancer. Significant improvement in pain and other symptoms was
observed in patients receiving palliative care interventions compared
with usual care. The standardized mean difference in pain scores was
0.41 (95% CI, 0.11 to 0.63) in favor of palliative care teams reducing
pain. Note that a standardized mean difference in the range of 0.21 to
0.5 is considered a medium effect. This review also found that palliative care teams were effective at improving patient, but not caregiver, outcomes.42
We identified an additional RCT of outpatient palliative consultation for a clinically heterogeneous group of patients that included
cancer patients. Using validated measures, the investigators found that
multidisciplinary specialty palliative care management working in
© 2008 by American Society of Clinical Oncology
Information downloaded from jco.ascopubs.org and provided by at University of British Columbia on January 12, 2011 from
Copyright © 2008 American Society
142.103.160.110
of Clinical Oncology. All rights reserved.
3897
Walling et al
concert with primary care providers was effective in improving dyspnea, anxiety, sleep quality, and spiritual well-being but not pain or
depression.43 Recently, an RCT evaluated an in-home palliative care
intervention with a multidisciplinary team for homebound, terminally ill patients (47% cancer patients). This study of 298 patients
showed that the intervention group had greater satisfaction, were
more likely to die at home, and were less likely to visit the emergency room.44
Given this preponderance of evidence, patients should have a
comprehensive palliative assessment addressed within their cancer
care. Experts agree that, when death becomes expected, a patient
should receive palliative care in some form and important issues to
address include pain and other symptoms, spiritual or existential
concerns, caregiver burdens, and financial concerns. Although it is
possible to cover these issues solely in the context of primary care,
the evidence suggests that palliative care and hospice teams are
particularly skillful in this area, especially as cancer advances; their
input should be elicited routinely in most cancer patients’ courses,
particularly when cure is no longer an option (Table 1).
END-OF-LIFE DISCUSSION AND ACP
ACP provides a method for effective and empathetic patient-centered
communication regarding a terminal diagnosis, including prognosis
and care plans. Much literature supports the importance of attention to these issues,1-7 but one study suggests that patients, families,
and providers vary on the emphasis they place on these matters.
Steinhauser et al37 surveyed 332 bereaved family members, 340
seriously ill patients including cancer patients, 361 physicians, and
429 other care providers and found that, although all four groups
agreed on important issues such as pain management and preparation for death, physicians and care providers did not give the
same level of value to other issues such as mental awareness at end
of life. This study demonstrated that anticipatory planning is important because all groups agreed that end-of-life care was important, but it also highlighted the fact that a physician or care
provider may not know what is important for an individual patient
at end of life. For example, 92% of patients surveyed felt that it was
very important to be mentally aware at end of life, and only 65% of
physicians felt that this was very important. In addition, 88% of
physicians and 95% of other care providers agreed that patients
should discuss personal fears about end of life, but only 61% of
patients agreed with this.37
Communication about the issue of prognosis is an essential aspect of effective ACP, and yet, communication of prognosis is infrequently documented, and when physicians do transmit prognostic
guesses, these are systematically overestimated.45 A study that looked
at inpatients with cancer in a retrospective chart review showed that
documentation of prognosis was found only 38% of the time and that
a patient had 2.2 times the odds of having a Do Not Resuscitate order
if there was a documented discussions of prognosis.22 Of course,
communication about prognosis must be individualized. In addition
Table 1. Recommendations for Information and Care Planning in Cancer Patients
Evidence
Recommendation
Palliative care and hospice integration
Assess comprehensively from a palliative perspective and document pain and other symptoms, spiritual or
existential concerns, caregiver burdens/need for practical assistance, and financial concerns for patients with
advanced cancer when death is expected
Refer outpatients with advanced cancer for palliative care and/or hospice within 6 months of their death
End-of-life discussion and advance care planning
Discuss prognosis and advance care planning within 1 month of a patient’s new diagnosis of advanced cancer
Document advance directive or surrogate decision maker in patients with advanced cancer when death is expected
Sentinel events
Document patient’s goals or preferences for care in patients with advanced cancer within 48 hours of any admission
to a hospital
Document patient’s goals or preferences for care in patients with advanced cancer within 48 hours of admission to
an intensive care unit and before mechanical ventilation
Discuss prognosis and advance care planning with patients who have advanced cancer who have a new diagnosis
of CNS metastases or who are to begin a new chemotherapy regimen
Discuss advance care planning with patients with advanced cancer who are to begin high-dose opiates
Discuss goals of care and preferences for interventions when a patient with advanced cancer undergoes new
hemodialysis, pacemaker, or implantable cardioverter-defibrillator placement; major surgery; or gastric tube
placement
Continuity
Transfer advance directives with patients when they change venues
Literature
ⴱ
Guidelines†
Panel‡
III
Yes
Yes
II
Yes
Yes
II
II
Yes
Yes
Yes
Yes
III
Yes
No
III
Yes
Yes
II
Yes
Yes
II
II
Yes
Yes
No
No
II
Yes
Yes
NOTE. These recommendations are some of the standards addressed in the Assessing Symptoms, Side Effects, and Indicators of Supportive Treatment Project
quality indicators for information and care planning in cancer patients.
ⴱ
Level I: randomized clinical trials; level II: nonrandomized controlled trials, cohort or case analysis, or multiple time series; level III: textbooks, opinions, and
descriptive studies.
†Guidelines sources include National Comprehensive Cancer Network, American Society of Clinical Oncology, Hastings Center, and National Consensus Project
for Quality Cancer Care Guidelines. Guidelines may not be exactly matched with the recommendations, but Yes means that the spirit of one or more guidelines is
captured in the recommendation.
‡Panelists reviewed supporting evidence and rated validity and feasibility (for obtaining information from medical records) for each recommendation. A Yes in the
column means that the expert panel agreed with the recommendation.
3898
© 2008 by American Society of Clinical Oncology
JOURNAL OF CLINICAL ONCOLOGY
Information downloaded from jco.ascopubs.org and provided by at University of British Columbia on January 12, 2011 from
Copyright © 2008 American Society
142.103.160.110
of Clinical Oncology. All rights reserved.
Information and Care Planning in Cancer Care
Table 2. Examples of Communication Strategies
Reference
Strategy
Baile et al3
1. Facilitate the establishment of a close report with
the patient
2. Identify the patient’s information preferences
3. Ensure comprehension of key knowledge and
information
4. Address the patient’s emotions in a supportive
fashion
5. Elicit the patient’s key concerns
6. Involve the patient in the treatment plan
Known as SPIKES:
S ⫽ Setup
P ⫽ Perception
I ⫽ Invitation
K ⫽ Knowledge
E ⫽ Empathize
S ⫽ Summarize and Strategize
Back et al30
to individual preferences, there are cultural differences in how this
information should be communicated.46
Once a patient is aware of his or her prognosis, clinicians can
begin to understand how patients will deal with this information and
how their life goals will affect treatment decisions.47 Ideal communication strategies have been delineated by experts and include a variety
of key processes. Two recently published communication strategies
are described in Table 2.
On the basis of law, guidelines, and ethical consensus, a cancer
patient’s goals and values should guide treatment and life-sustaining
care decisions.9,10,47-49 These communication strategies emphasize the
need to be sensitive to the patient’s perspective regarding cancer and to
continually address the patient’s need for information, support, and
involvement in the care plan.9,10,47,49 ACP provides a structure to
facilitate this process.
Although there is lack of good evidence regarding when ACP
should take place, there is evidence that patients’ concerns are in
flux over the course of illness, so it is important and appropriate to
readdress them.50,51 Experts agree that ACP is valuable and that
minimal standards for when ACP should be discussed in cancer
patients include at diagnosis of cancer, before an expected death
from cancer, and other sentinel events discussed in the following
section (Table 1). Some available resources to help with ACP are
listed in Table 3.
SENTINEL EVENTS
In addition to at the time of diagnosis and before an expected
death, there are certain sentinel events in the disease process that
should trigger goal-oriented discussions. It is possible that even a
patient who wanted aggressive care at the onset of cancer care may
change his or her mind as circumstances change.11,33 An interview
study of 342 patients, including some terminal cancer patients,
showed that, when advance directives were discussed, more participants chose to forgo more invasive long-term treatments (such as
long-term mechanical ventilation, long-term feeding tubes, and
long-term dialysis) as opposed to less invasive, short-term treatments (such as antibiotics and short-term mechanical ventilation).52 Cancer patients’ treatment preferences at the end of life
differ from other groups. Thus, common aggressiveness of care
should not be generalized from an overall patient population; it is
important to address personal preferences concerning any invasive
procedure.8 One study showed that older patients with metastatic
cancer preferred artificial tube feeding to a lesser extent than was
physicians’ practice.53 Another study prospectively evaluated the
use of acute hemodialysis among hospitalized patients and found
that having a cancer diagnosis was associated with dialysis being
withheld rather than withdrawn.54
After the diagnosis of cancer, sentinel events that occur during
the disease trajectory, such as initiation of invasive procedures, first
diagnosis of CNS disease, and initiation of a new chemotherapy
regimen, are important opportunities to readdress a patient’s goals
given changes in prognosis and increased risk for being in a state in
which the patient will not be able to make treatment decisions. A
special challenge in ACP for cancer is the issue of how to address
situations where a person lacks capacity. If a cancer patient has the
capacity to make decisions about end-of-life care, he or she should
do so.4,49,55 However, because delirium is so common in advanced
cancer, patients are often unable to make decisions for themselves
Table 3. Some Available Advance Care Planning Resources
Source
Aging With Dignity
American Bar Association
American Medical Association
Brigham and Woman’s Hospital: Center for
Bioethics
Caring Connections (from the National
Hospice and Palliative Care
Organization)
EndLink: Resource for End of Life
Education (from the Robert H. Lurie
Comprehensive Cancer Center of
Northwestern University)
National Association of Social Workers
ⴱ
Web Siteⴱ
http://www.agingwithdignity.org/5wishes.html; see Five Wishes
http://www.abanet.org/aging/; see The Consumer’s Tool kit for Healthcare Advance Planning
http://www.ama-assn.org/ama/pub/category/14894.html; see American Medical Association Web site
under Ethics
http://www.brighamandwomens.org/ethics/resourcesACP.aspx; see Advance Care Planning Resources
http://www.caringinfo.org/PlanningAhead.htm; see Advance Directive and Advanced Care Planning;
can get forms by state
http://endlink.lurie.northwestern.edu/index.cfm; see section on Advance Care Planning
http://www.helpstartshere.org/Home.html; perform search for: advance care planning-resources
All Web sites were accessed April 20, 2008.
www.jco.org
© 2008 by American Society of Clinical Oncology
Information downloaded from jco.ascopubs.org and provided by at University of British Columbia on January 12, 2011 from
Copyright © 2008 American Society
142.103.160.110
of Clinical Oncology. All rights reserved.
3899
Walling et al
at the end of life.11-14 Theoretically, by assessing and documenting
prognosis, ACP, and goals of care throughout the disease trajectory, informed decisions can be made, desired care can be received,
and unwanted aggressive care can be avoided.
Experts agree that the following sentinel events in cancer care
should herald times that ACP should be addressed if they have not
already been discussed: admission to an intensive care unit, initiation of mechanical ventilation, diagnosis of CNS metastasis, initiation of a chemotherapy regimen, initiation of new hemodialysis,
pacemaker or implantable cardioverter-defibrillator placement,
decision to undergo major surgery, and a decision for gastric tube
placement (Table 1).
ACP: IMPROVING LOW RATES THROUGH PALLIATIVE
CARE TECHNIQUES
Ideally, for patients approaching the end of life, a surrogate decision maker has been identified, and ACP has occurred. Unfortunately, advance directives are not always completed, and provided
care is often inconsistent with patient preferences. A study in a
tertiary care cancer hospital showed that only 27% of critically ill
cancer patients had completed an advance directive,56 and 16 observational studies evaluated in a systematic review by Shalowitz et
al57 showed patient-surrogate agreement to be only 68%.
However, several studies have shown that a variety of interventions can increase documentation of advance directives.38,58-62 A
systematic review by Guo and Harstall60 found six RCTs that used
patient-physician communication techniques to improve frequency of advance directive completion. Hanson et al38 conducted
a systematic review that evaluated 16 studies, seven of which were
RCTs, and concluded that educational interventions for physicians
were challenging but increased the ability of physicians to elicit
patient preferences; three studies found that this approach reduced
the use of life-sustaining treatments, but no intervention had an
effect on pain, suffering, or the cost of care. A more recent RCT by
Engelhardt et al61 used a palliative care/coordinated care intervention that improved completion of advance directives (69% v 48%
for patients received usual care; P ⫽ .006). In addition, two recent
RCTs showed increased patient-surrogate congruence in goals of
care with a communication and care planning intervention.63,64
Despite the fact that some studies of ACP have suggested
little effect on end-of-life decision making,65-67 other ACP
interventions—many times as one component of a palliative care
intervention to effect hospice enrollment—showed positive effects
on patient satisfaction, patient knowledge, and psychological adjustment. Many authors conclude that these types of palliative care
approaches, which have been shown to increase the documentation of goals of care and increase the likelihood of following a
patient’s wishes at the end of life, should be encouraged.68-73 Oncologists should be open with patients about prognosis and be
comfortable addressing sensitive issues such as future goals of care
in the context of their patient’s disease, especially when it is essential for the information to be given so that important decisions can
be made (Table 1).
3900
© 2008 by American Society of Clinical Oncology
CONTINUITY
If patients and clinicians make the effort to complete an advance
directive in the process of ACP, this information should be available to inform later care. However, observational studies suggest
that advance directives are not as effective as they could be if they
are not documented effectively or not communicated between
patients, providers, and venues.65,74 A study by Virmani et al,74 in
which seriously ill cancer patients and their physicians were interviewed regarding various aspects of advance directives, showed
that physicians were frequently unaware of their patients’ advance
directives. A prospective study by Danis et al65 of nursing home
residents showed that, when advance directives were placed in the
medical chart, a later evaluation of outcome events revealed that
care was inconsistent with advance directives 25% of the time.
Laws and regulations can create structures that facilitate transportability of preferences across venues. State-level work in Oregon and other states and regions suggests that improvements can
be made with communicating Do Not Resuscitate orders and other
end-of-life treatment preferences.75-80 Oregon developed Physician Orders for Life-Sustaining Treatment (POLST) that are transferable between venues. A retrospective chart review of an elderly
care program showed that POLST resulted in a high rate of concordance between POLST documents and the care patients received (91% of DNR orders followed).76 A survey evaluation of
emergency medical technicians suggested that care in the field was
altered according to wishes specified in POLST documents and
that they were pleased with the program.78 The POLST mechanism
has been translated into more than a dozen venues across the
United States. Although other ways of improving continuity of
end-of-life treatment have been suggested, such as directly communicating advance directives to a receiving facility,81 converting
patient-centered treatment goals into actionable medical orders is
also an effective approach.80
Experts agree than continuity of advance directives and information collected during ACP is a minimal standard of quality. Oncologists should ensure that advance directives are relevant and available
for use across the many venues in which a patient may receive care.
Proven transport mechanisms that ensure these goals are met should
be used when available (Table 1).
CONCLUSION
Although information transfer and ACP in cancer care require individualization and the art of medicine guides many of our approaches
for communicating with patients, we identified a number of clinical
practices for which the literature and expert evaluation suggest that
minimum standards of practice exist. We point out that many of these
practices are not yet the norm in oncologic practice. These standards
should be incorporated into care pathways and should become the
expectation rather than the exception.
AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS
OF INTEREST
Although all authors completed the disclosure declaration, the following
author(s) indicated a financial or other interest that is relevant to the subject
JOURNAL OF CLINICAL ONCOLOGY
Information downloaded from jco.ascopubs.org and provided by at University of British Columbia on January 12, 2011 from
Copyright © 2008 American Society
142.103.160.110
of Clinical Oncology. All rights reserved.
Information and Care Planning in Cancer Care
matter under consideration in this article. Certain relationships marked
with a “U” are those for which no compensation was received; those
relationships marked with a “C” were compensated. For a detailed
description of the disclosure categories, or for more information about
ASCO’s conflict of interest policy, please refer to the Author Disclosure
Declaration and the Disclosures of Potential Conflicts of Interest section in
Information for Contributors.
Employment or Leadership Position: None Consultant or Advisory
Role: None Stock Ownership: None Honoraria: None Research
Funding: Karl A. Lorenz, Amgen Inc; Sydney M. Dy, Amgen Inc; Arash
Naeim, Amgen Inc, Genentech, Pfizer; Homayoon Sanati, Amgen Inc;
Steven M. Asch, Amgen Inc Expert Testimony: None Other
Remuneration: Arash Naeim, Pfizer, Amgen Inc
REFERENCES
1. Whelan TJ, Mohide EA, Willan AR, et al: The
supportive care needs of newly diagnosed cancer
patients attending a regional cancer center. Cancer
80:1518-1524, 1997
2. Bingley AF, McDermott E, Thomas C, et al:
Making sense of dying: A review of narratives
written since 1950 by people facing death from
cancer and other diseases. Palliat Med 20:183-195,
2006
3. Baile WF, Glober GA, Lenzi R, et al: Discussing disease progression and end-of-life decisions.
Oncology (Williston Park) 13:1021-1031, 1999
4. Redmond K: Treatment choices in advanced
cancer: Issues and perspectives. Eur J Cancer Care
7:31-39, 1998
5. Lo B, McLeod GA, Saika G: Patient attitudes
to discussing life-sustaining treatment. Arch Intern
Med 146:1613-1615, 1986
6. Blanchard CG, Labrecque MS, Ruckdeschel
JC, et al: Information and decision-making preferences of hospitalized adult cancer patients. Soc Sci
Med 27:1139-1145, 1988
7. Levin JR, Wenger NS, Ouslander JG, et al:
Life-sustaining treatment decisions for nursing
home residents: Who discusses, who decides and
what is decided? J Am Geriatr Soc 47:82-87, 1999
8. Sahm S, Will R, Hommel G: What are cancer
patients’ preferences about treatment at the end of
life, and who should start talking about it? A comparison with healthy people and medical staff. Support Care Cancer 13:206-214, 2005
9. Wetler K, Garand L: Advance Directives
Evidence-Based Protocol. Iowa City, IA, University
of Iowa College of Nursing, 1999
10. Curtis JR: Communicating with patients and
their families about advance care planning and endof-life care. Respir Care 45:1385-1394, 2000
11. McCarthy EP, Phillips RS, Zhong Z, et al:
Dying with cancer: Patients’ function, symptoms,
and care preferences as death approaches. J Am
Geriatr Soc 48:S110-S121, 2000 (suppl 5)
12. Morita T, Tei Y, Inoue S: Impaired communication capacity and agitated delirium in the final
week of terminally ill cancer patients: Prevalence
and identification of research focus. J Pain Symptom Manage 26:827-834, 2003
13. Gagnon P, Allard P, Masse B, et al: Delirium in
terminal cancer: A prospective study using daily
screening, early diagnosis, and continuous monitoring. J Pain Symptom Manage 19:412-426, 2000
14. Lawlor PG, Gagnon B, Mancini IL, et al: Occurrence, causes, and outcome of delirium in patients with advanced cancer: A prospective study.
Arch Intern Med 160:786-794, 2000
www.jco.org
AUTHOR CONTRIBUTIONS
Conception and design: Anne Walling, Karl A. Lorenz, Sydney M. Dy,
Arash Naeim, Homayoon Sanati, Steven M. Asch, Neil S. Wenger
Collection and assembly of data: Anne Walling, Karl A. Lorenz,
Neil S. Wenger
Data analysis and interpretation: Anne Walling, Karl A. Lorenz,
Steven M. Asch
Manuscript writing: Anne Walling, Karl A. Lorenz, Steven M. Asch,
Neil S. Wenger
Final approval of manuscript: Anne Walling, Karl A. Lorenz, Sydney M.
Dy, Arash Naeim, Homayoon Sanati, Steven M. Asch, Neil S. Wenger
15. Friedrichsen M, Milberg A: Concerns about
losing control when breaking bad news to terminally ill patients with cancer: Physicians’ perspective. J Palliat Med 9:673-682, 2006
16. Viles L: Death and the practitioner. Respir
Care 45:1513-1519, 2000
17. Taboada P, Bruera E: Ethical decision-making
on communication in palliative cancer care: A personalist approach. Support Care Cancer 9:335-343,
2001
18. Daugherty CK: Examining ethical dilemmas as
obstacles to hospice and palliative care for advanced
cancer patients. Cancer Invest 22:123-131, 2004
19. Ptacek JT, Eberhardt TL: Breaking bad news:
A review of the literature. JAMA 276:496-502, 1996
20. Lamont EB, Christakis NA: Some elements of
prognosis in terminal cancer. Oncology (Williston
Park) 13:1165-1170, 1999
21. Rosenfeld KE, Wagner G, Steckart JM, et al:
Predictors and accuracy of physician prognostications of 1-year mortality among veterans with lifelimiting illness. Presented at the Annual Assembly
of the American Academy of Hospice and Palliative
Medicine and Hospice and Palliative Nurses Association, Salt Lake City, UT, February 14-17, 2007
22. Bradley EH, Hallemeier AG, Fried TR, et al:
Documentation of discussions about prognosis with
terminally ill patients. Am J Med 111:218-223, 2001
23. Maltoni M, Tassinari D: Prognostic assessment in terminally ill cancer patients: From
evidence-based knowledge to a patient-physician
relationship and back. Palliat Med 18:77-79, 2004
24. Maltoni M, Caraceni A, Brunelli C, et al: Prognostic factors in advanced cancer patients:
Evidence-based clinical recommendations—A study
by the Steering Committee of the European Association for Palliative Care. J Clin Oncol 23:62406248, 2005
25. Glare P, Virik K, Jones M, et al: A systematic
review of physicians’ survival predictions in terminally ill cancer patients. BMJ 327:195-198, 2003
26. Evans W, Alexander S, Rodriguez K, et al:
Expressions of emotion by oncology patients during
outpatient visits. Presented at the Annual Assembly
of the American Academy of Hospice and Palliative
Medicine and Hospice and Palliative Nurses Association, Salt Lake City, UT, February 14-17, 2007
27. Greisinger AJ, Lorimor RJ, Aday LA, et al:
Terminally ill cancer patients: Their most important
concerns. Cancer Pract 5:147-154, 1997
28. Hjorleifsdottir E, Carter DE: Communicating
with terminally ill cancer patients and their families.
Nurse Educ Today 20:646-653, 2000
29. Schofield P, Carey M, Love A, et al: Would
you like to talk about your future treatment options?
Discussing the transition from curative cancer treatment to palliative care. Palliat Med 20:397-406, 2006
30. Back AL, Arnold RM, Baile WF, et al: Approaching difficult communication tasks in oncology.
CA Cancer J Clin 55:164-177, 2005
31. Tulsky JA, Fischer GS, Rose MR, et al: Opening the black box: How do physicians communicate
about advance directives? Ann Intern Med 129:441449, 1998
32. Earle CC, Neville BA, Landrum MB, et al:
Trends in the aggressiveness of cancer care near
the end of life. J Clin Oncol 22:315-321, 2004
33. Asola R, Huhtala H, Holli K: Intensity of diagnostic and treatment activities during the end of life
of patients with advanced breast cancer. Breast
Cancer Res Treat 100:77-82, 2006
34. Lynn J, Teno JM, Phillips RS, et al: Perceptions by
family members of the dying experience of older and
seriously ill patients: SUPPORT Investigators—Study to
Understand Prognoses and Preferences for Outcomes
and Risks of Treatments. Ann Intern Med 126:97-106,
1997
35. Lorenz KA, Lynn J, Dy SM, et al: The evidence
for improving palliative and end of life care: A
systematic review. Ann Intern Med 148:147-159,
2008
36. Higginson IJ, Sen-Gupta GJ: Place of care in
advanced cancer: A qualitative systematic literature
review of patient preferences. J Palliat Med 3:287300, 2000
37. Steinhauser KE, Christakis NA, Clipp EC, et al:
Factors considered important at the end of life by
patients, family, physicians, and other care providers. JAMA 284:2476-2482, 2000
38. Hanson LC, Tulsky JA, Danis M: Can clinical
interventions change care at the end of life? Ann
Intern Med 126:381-388, 1997
39. Teno JM, Clarridge BR, Casey V, et al: Family
perspectives on end-of-life care at the last place of
care. JAMA 291:88-93, 2004
40. Steinhauser KE, Christakis NA, Clipp EC, et al:
Preparing for the end of life: Preferences of patients,
families, physicians, and other care providers. J Pain
Symptom Manage 22:727-737, 2001
41. Singer PA, Martin DK, Kelner M: Quality endof-life care: Patients’ perspectives. JAMA 281:163168, 1999
42. Higginson IJ, Finlay IG, Goodwin DM, et al: Is
there evidence that palliative care teams alter endof-life experiences of patients and their caregivers?
J Pain Symptom Manage 25:150-168, 2003
43. Rabow MW, Dibble SL, Pantilat SZ, et al: The
comprehensive care team: A controlled trial of outpatient palliative medicine consultation. Arch Intern
Med 164:83-91, 2004
44. Brumley R, Enguidanos S, Jamison P, et al:
Increased satisfaction with care and lower costs:
Results of a randomized trial of in-home palliative
care. J Am Geriatr Soc 55:993-1000, 2007
© 2008 by American Society of Clinical Oncology
Information downloaded from jco.ascopubs.org and provided by at University of British Columbia on January 12, 2011 from
Copyright © 2008 American Society
142.103.160.110
of Clinical Oncology. All rights reserved.
3901
Walling et al
45. Christakis NA, Lamont EB: Extent and determinants of error in doctors’ prognoses in terminally
ill patients: Prospective cohort study. BMJ 320:469472, 2000
46. Barclay JS, Blackhall LJ, Tulsky JA: Communication strategies and cultural issues in the delivery
of bad news. J Palliat Med 10:958-977, 2007
47. Doukas DJ, Doukas MA: Considering advance
directives for oncology patients. Prim Care 25:423431, 1998
48. Rosenfeld KE, Wenger NS, Kagawa-Singer M:
End-of-life decision making: A qualitative study of
elderly individuals. J Gen Intern Med 15:620-625,
2000
49. Lo B: Resolving Ethical Dilemmas: A Guide for
Clinicians. Philadelphia, PA, Lippincott Williams &
Wilkins, 2005
50. Danis M, Garrett J, Harris R, et al: Stability of
choices about life-sustaining treatments. Ann Intern
Med 120:567-573, 1994
51. Ditto PH, Smucker WD, Danks JH, et al:
Stability of older adults’ preferences for lifesustaining medical treatment. Health Psychol 22:
605-615, 2003
52. Pearlman RA, Cain KC, Starks H, et al: Preferences for life-sustaining treatments in advance care
planning and surrogate decision making. J Palliat
Med 3:37-48, 2000
53. Carmel S: Life-sustaining treatments: What
doctors do, what they want for themselves and
what elderly persons want. Soc Sci Med 49:14011408, 1999
54. Wenger NS, Lynn J, Oye RK, et al: Withholding versus withdrawing life-sustaining treatment:
Patient factors and documentation associated with
dialysis decisions. J Am Geriatr Soc 48:S75-S83,
2000 (suppl 5)
55. Hastings Center: Guidelines on the Termination of Life-Sustaining Treatment and the Care of the
Dying. Briarcliff Manor, NY, The Center, 1987
56. Kish SK, Martin CG, Price KJ: Advance directives in critically ill cancer patients. Crit Care Nurs
Clin North Am 12:373-383, 2000
57. Shalowitz DI, Garrett-Mayer E, Wendler D:
The accuracy of surrogate decision makers: A systematic review. Arch Intern Med 166:493-497, 2006
58. Heffner JE, Barbieri C: Effects of advance
care education in cardiovascular rehabilitation pro-
grams: A prospective randomized study. J Cardiopulm Rehabil 21:387-391, 2001
59. Heffner JE, Fahy B, Hilling L, et al: Outcomes
of advance directive education of pulmonary rehabilitation patients. Am J Respir Crit Care Med 155:
1055-1059, 1997
60. Guo B, Harstall C: Advance Directives for
End-of-Life Care in the Elderly: Effectiveness of
Delivery Modes. Edmonton, Alberta, Canada, Alberta Heritage Foundation for Medical Research,
2004
61. Engelhardt JB, McClive-Reed KP, Toseland
RW, et al: Effects of a program for coordinated care
of advanced illness on patients, surrogates, and
healthcare costs: A randomized trial. Am J Manag
Care 12:93-100, 2006
62. Perry E, Swartz J, Brown S, et al: Peer mentoring: A culturally sensitive approach to end-of-life
planning for long-term dialysis patients. Am J Kidney
Dis 46:111-119, 2005
63. Song MK, Kirchhoff KT, Douglas J, et al: A
randomized, controlled trial to improve advance care
planning among patients undergoing cardiac surgery. Med Care 43:1049-1053, 2005
64. Schwartz CE, Wheeler HB, Hammes B, et
al: Early intervention in planning end-of-life care
with ambulatory geriatric patients: Results of a
pilot trial. Arch Intern Med 162:1611-1618, 2002
65. Danis M, Southerland LI, Garrett JM, et al: A
prospective study of advance directives for lifesustaining care. N Engl J Med 324:882-888, 1991
66. Schneiderman LJ, Kronick R, Kaplan RM, et
al: Effects of offering advance directives on medical
treatments and costs. Ann Intern Med 117:599-606,
1992
67. Walsh RA, Girgis A, Sanson-Fisher RW:
Breaking bad news. 2: What evidence is available to
guide clinicians? Behav Med 24:61-72, 1998
68. Luhrs CA, Meghani S, Homel P, et al: Pilot
of a pathway to improve the care of imminently
dying oncology inpatients in a Veterans Affairs
Medical Center. J Pain Symptom Manage 29:544551, 2005
69. Back AL, Li YF, Sales AE: Impact of palliative
care case management on resource use by patients
dying of cancer at a Veterans Affairs medical center.
J Palliat Med 8:26-35, 2005
70. Rosenfeld K, Rasmussen J: Palliative care
management: A Veterans Administration demonstration project. J Palliat Med 6:831-839, 2003
71. Manfredi PL, Morrison RS, Morris J, et al:
Palliative care consultations: How do they impact
the care of hospitalized patients? J Pain Symptom
Manage 20:166-173, 2000
72. Hearn J, Higginson IJ: Do specialist palliative
care teams improve outcomes for cancer patients?
A systematic literature review. Palliat Med 12:317332, 1998
73. Bailey FA, Burgio KL, Woodby LL, et al: Improving processes of hospital care during the last
hours of life. Arch Intern Med 165:1722-1727, 2005
74. Virmani J, Schneiderman LJ, Kaplan RM: Relationship of advance directives to physician-patient
communication. Arch Intern Med 154:909-913,
1994
75. Tolle SW, Tilden VP, Nelson CA, et al: A
prospective study of the efficacy of the physician
order form for life-sustaining treatment. J Am Geriatr Soc 46:1097-1102, 1998
76. Lee MA, Brummel-Smith K, Meyer J, et al:
Physician Orders for Life-Sustaining Treatment
(POLST): Outcomes in a PACE program—Program
of All-Inclusive Care for the Elderly. J Am Geriatr Soc
48:1219-1225, 2000
77. Hickman SE, Tolle SW, Brummel-Smith K, et
al: Use of the Physician Orders for Life-Sustaining
Treatment program in Oregon nursing facilities: Beyond resuscitation status. J Am Geriatr Soc 52:
1424-1429, 2004
78. Schmidt TA, Hickman SE, Tolle SW, et al: The
Physician Orders for Life-Sustaining Treatment program: Oregon emergency medical technicians’ practical experiences and attitudes. J Am Geriatr Soc
52:1430-1434, 2004
79. Meyers JL, Moore C, McGrory A, et al: Physician orders for life-sustaining treatment form: Honoring end-of-life directives for nursing home
residents. J Gerontol Nurs 30:37-46, 2004
80. Bomba PA, Vermilyea D: Integrating POLST
into palliative care guidelines: A paradigm shift in
advance care planning in oncology. J Natl Compr
Canc Netw 4:819-829, 2006
81. Ghusn HF, Teasdale TA, Jordan D: Continuity
of do-not resuscitate orders between hospital and
nursing home settings. J Am Geriatr Soc 45:465469, 1997
■ ■ ■
Appendix
The Appendix is included in the full-text version of this article, available online at www.jco.org. It is not included in the PDF version
(via Adobe® Reader®).
3902
© 2008 by American Society of Clinical Oncology
JOURNAL OF CLINICAL ONCOLOGY
Information downloaded from jco.ascopubs.org and provided by at University of British Columbia on January 12, 2011 from
Copyright © 2008 American Society
142.103.160.110
of Clinical Oncology. All rights reserved.