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OCR for page 1
Patient-Centered
Cancer Treatment Planning:
Improving the Quality of Oncology Care
A National Coalition for Cancer Survivorship and
Institute of Medicine Workshop
INTRODUCTION AND OVERVIEW
Each year about 1.5 million people are diagnosed with cancer in the
United States (ACS, 2010), and must then decide on a course of care. Can-
cer treatment often involves multiple options and specialties; it can be toxic,
costly, intense, and protracted and may involve serious long-term compli-
cations. In addition, responses to cancer treatments are quite variable, so
predicting the potential risks and benefits of various treatment options for
individual patients is often difficult. Because of the complexity of treatment
choices, coupled with the life-threatening nature of cancer and its emotional
repercussions, it is often difficult for people with cancer to make decisions
about their care. The fragmented nature of the cancer care system (IOM,
1999) also presents challenges that may impede coordinated care and the
development of comprehensive treatment plans.
Recognizing these challenges, the National Coalition for Cancer Sur-
vivorship (NCCS) and the National Cancer Policy Forum (NCPF) of the
Institute of Medicine hosted a public workshop in Washington, DC, on
February 28 and March 1, 2011, titled Patient-Centered Cancer Treatment
Planning: Improving the Quality of Oncology Care. The workshop agenda,
which includes speakers and their affiliations, can be found in the appendix.
This document is a summary of the workshop. The views expressed in this
summary are those of the speakers and discussants, as attributed to them,
1
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2 PATIENT-CENTERED CANCER TREATMENT PLANNING
and are not the consensus views of the workshop participants or members
of the National Cancer Policy Forum.
The workshop included an overview of patient-centered care and
cancer treatment planning, as well as sessions on shared decision making,
communication in the cancer care setting, and patient experiences with
cancer treatment. Best practices, models of treatment planning, and tools
to facilitate their use were also discussed, as well as policy changes that
may promote patient-centeredness by enhancing patients’ understanding
of and commitment to the goals of treatment through a shared decision-
making process with their healthcare team from the moment of diagnosis
onward. While previous Institute of Medicine (IOM) work has focused on
the challenges of cancer care planning for individuals who have completed
their treatment (sometimes referred to as follow-up or survivorship care
planning), this workshop focused on treatment planning for patients with
cancer at the time of diagnosis.
Patient-centered care has been defined as “providing care that is respect-
ful of and responsive to individual patient preferences, needs, and values,
and ensuring that patient values guide all clinical decisions” (IOM, 2001).
A primary goal of patient-centered treatment planning is to engage patients
and their families in meaningful and thorough interactions with their
healthcare providers to develop an accurate, well-conceived treatment plan,
using all available medical information appropriately while also considering
the medical, social, and cultural needs and desires of the patient and family.
A treatment plan may entail a prognostic and therapeutic plan at the time
of initial diagnosis, which can be updated with changes during the course of
treatment, as well as a prognostic and palliative care plan near the end of life.
Participants at the workshop identified numerous obstacles to achiev-
ing patient-centered care planning in practice, including variable and often
suboptimal communication between the patient and healthcare provider
that may not be culturally or personally appropriate, and information over-
load for the patient and family, without appropriate written documentation
of treatment plans, options, and expectations that the patient and family
might refer to after a visit. Many participants also lamented the frequent
lack of involvement of primary care physicians and provider teams who
might know patient and family better. Numerous factors that might con-
tribute to that lack of involvement were noted, including poor coordination
of care or inappropriate exclusion by the oncology team, the inability of
primary care physicians to devote the time needed to keep up with myriad
complex and rapidly changing cancer treatment regimens, and the lack of
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3
IMPROVING THE QUALITY OF ONCOLOGY CARE
availability of primary care physicians due to workforce shortages. Other
obstacles to care planning identified by workshop participants included
the increasingly complex medical data that healthcare providers need to
consider when making treatment decisions, and a lack of decision support
for healthcare providers (for example, in electronic health records) to aid in
managing the complexity of medical information. In addition, the current
reimbursement system for health care does not compensate providers for the
time it takes to develop, discuss, and document a treatment plan.
Workshop participants also suggested a variety of mitigation strategies
to address these many obstacles, including improved training of physicians,
nurses, and other healthcare providers in the components of optimal com-
munication with patients and families, and improved education of patients
and families about how to be more proactive and assertive to optimize
interactions with healthcare providers. Many participants advocated for
greater use of support services, such as mental health services, social work,
and nutrition counseling, as well as greater involvement of patient naviga-
tors who can help coordinate cancer care and foster communication among
providers. However, others argued that the need for patient navigators is a
symptom of a broken system, and strongly advocated for more structural,
systemic reforms in cancer care. For example, many participants emphasized
a need to change the reimbursement and financial incentives in the system
to encourage and support more patient-centered care. They also stressed
that greater use of quality improvement programs and accountable care
systems could have a positive impact on the care provided to patients with
cancer. A variety of tools and online resources were also cited as potential
means to improve care planning, such as electronic health records that can
organize all important medical information, share it with all members of the
healthcare team, utilize decision support to better ensure optimal treatment
recommendations for patients, and facilitate electronic input from patients
into their healthcare records.
WHY PATIENT-CENTERED PLANNING FOR CANCER?
Cancer takes patients on a journey most have never taken before, whose
outcomes are unknown. This creates uncertainty and anxiety, especially
given the potential life-threatening nature of the disease, as several patients
and providers noted at the workshop. Mr. Richard Boyajian, a cancer
survivor and clinical director and primary nurse practitioner of the Adult
Survivorship Program at Dana-Farber Cancer Institute, said that fear of the
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4 PATIENT-CENTERED CANCER TREATMENT PLANNING
unknown was a major issue for him when he was a leukemia patient and
that a cancer treatment plan helped alleviate that fear. “The idea of having
some sense of the roadmap, of where this journey is going to take you, is
really important,” added Mr. Mark Gorman, a cancer survivor and director
of Survivorship Policy at NCCS. “It’s critical to manage uncertainty.”
A cancer treatment plan can provide that roadmap, even in the final
stages of cancer when treatment might only be palliative (to address symp-
toms), stressed Dr. Patricia Ganz, professor of health services and medicine
at the University of California, Los Angeles, and director of the Division
of Cancer Prevention and Control Research at the Jonsson Comprehensive
Cancer Center. “Patients want to know what’s going to happen to them.
That’s why we have to do this,” she said. Ms. Alison Smith, vice president
for strategic initiatives at C-Change, added that “pilots don’t take off with-
out a flight pattern, and architects don’t break ground without a blueprint.
Patients diagnosed with cancer are taking the journey of their life, literally,
so the role of the cancer treatment plan in starting a conversation, in pro-
moting comprehension and retention, in managing expectations and anxi-
ety, and providing continuity across settings and episodes is so important.”
Cancer care also has a number of unique attributes that make treatment
planning vital. Dr. Ganz noted that cancer treatments can be complex,
toxic, intense, expensive, disruptive, life-threatening, and protracted, with
the possibility of cancer recurrence or late complications, and thus requiring
lifelong surveillance. In addition, patients often have to choose between sev-
eral treatment options, each with its own set of potential risks and benefits.
Cancer care also usually involves multiple practitioners and can occur in
isolation from primary healthcare delivery, with physicians whom patients
usually have not known for long.
Given the complexity of cancer care, a written cancer treatment plan
is critical, noted Dr. Karen Sepucha, director of the Health Decision Sci-
ences Center at Massachusetts General Hospital and assistant professor
of medicine at Harvard Medical School. “It is unfathomable the lack of
documentation and what’s supposed to be kept in your head versus the
limits of cognition. There is an approach in human factors engineering
in which you design your system so that humans can work in it and not
fail. We haven’t really translated that well into health care, so we’re setting
ourselves up for failure all the time, for missing the handoffs,” she said. Dr.
Lawrence Shulman, chief medical officer, senior vice president for medi-
cal affairs, and chief of the Division of General Oncology at Dana-Farber
Cancer Institute, added that cancer treatment plans are likely to become
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5
IMPROVING THE QUALITY OF ONCOLOGY CARE
increasingly important as the growing complexity of cancer care becomes a
challenge for providers.
Cancer treatment planning is especially important because a patient’s
survival can hinge on making the correct treatment decision. “When you are
making these important decisions, if [a doctor makes] the wrong decision,
the next day the doctor gets to try again with a new patient,” said Ms. Anne
Willis, cancer survivor and director of Survivorship Programs for NCCS.
“The patient doesn’t have that option. [Patients] only have one chance to
get it right.”
PATIENT-CENTERED CANCER CARE
The 2001 IOM consensus report Crossing the Quality Chasm: A New
Health System for the 21st Century defines patient-centered care as “providing
care that is respectful of and responsive to individual patient preferences,
needs, and values, and ensuring that patient values guide all clinical deci-
sions” (IOM, 2001). Most speakers at the workshop indicated that when
patient-centered care is given, there is a partnership between a patient and
his or her providers. To enable this partnership, communication must be
sensitive to the needs and capabilities of the patient so that the patient is
informed about his or her treatment options and encouraged to share in the
decision making about care.
Patient-centered care may also involve patient navigators, social work-
ers, or other personnel to help patients coordinate their care and relieve
their health-related burdens, including psychosocial issues such as anxiety
or financial stress. As one patient who spoke at the workshop summarized
it, patient-centered care is having the health system organized around the
patient rather than the patient having to organize his or her life around the
system.
The key components of patient-centered care stressed at the workshop
were the following:
• atient education and empowerment
P
• atient-centered communication, involving the patient, family, and
P
friends, that explains treatment options and includes patients in
treatment decisions to reflect patients’ values, preferences, and needs
• oordination and integration of care
C
• rovision of emotional support as needed, such as relieving fear and
P
anxiety and addressing mental health issues
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6 PATIENT-CENTERED CANCER TREATMENT PLANNING
Patient Education
Oncologists and other cancer healthcare providers typically provide
some information to their patients about their diagnosis, stage, and treat-
ment options. Yet, as several speakers at the workshop noted, patients
also want to know the likely outcomes and side effects of each potential
treatment, including long-term outcomes and risks of cancer recurrence, if
known. They also want to know the signs of recurrence so that they don’t
worry unnecessarily. Many cancer treatments may also reduce fertility; thus,
ways to preserve fertility should also be discussed with patients in advance
of treatment when appropriate, several speakers said.
Research on breast and colon cancer patients and survivors by
Dr. Deborah Mayer, associate professor at the University of North Carolina
School of Nursing, suggested that patients want both print- and Web-based
information, and they want information about their diagnosis at the time
they are diagnosed and a treatment plan when they first start their treat-
ment. Examples of Web-based tools that can help patients learn more about
their diagnosis and treatments options are described in the section on Tools
and Resources (p. 29). Cancer patients also would like information on local
resources, including support groups, dieticians, physical and mental health
therapists, and exercise and health promotion programs.
There is variability in the amount of information that patients want to
receive about their cancer, several speakers noted. Because of the stress of
being diagnosed with cancer, patients may have difficulty processing exces-
sive amounts of information, especially complex technical information.
Mr. Boyajian suggested providing patients with just the “Cliff Notes”—a
concise summary of the most important pieces of information about diag-
nosis and treatment—and then referring them to other sources if they want
additional information. However, Dr. Ganz stressed the importance of dis-
cussing all care options and having both verbal and written communication
of those options and of the treatment plan. Several participants suggested
recording the consultation a patient has with his or her oncologist in which
this information is discussed, so that it can be reviewed later by the patient
and family members. Some patients also find it helpful to have a companion
present who can take notes during this discussion and help with post-visit
translation of care plans and rationale for treatment.
It is also helpful if providers put the potential risks and benefits of vari-
ous treatment options in a context that patients can understand, pointed
out Dr. Sherrie Kaplan, Assistant Vice Chancellor for Healthcare Measure-
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7
IMPROVING THE QUALITY OF ONCOLOGY CARE
ment and Evaluation and professor of medicine at the University of Cali-
fornia, Irvine. For example, the risk of a rare complication can be given as
equivalent to the likelihood of other rare events occurring, such as being
struck by lightning, hit by a car, or winning the state lottery.
Patient Empowerment
Both patients and providers at the workshop noted that people with
cancer are expected to take an active role in their care and share in decision
making, but few people have experience and training in what Dr. Kaplan
termed “planned patienthood.” Although we are much more likely to be
patients at some point during our lifetimes than to be in a fire, she pointed
out, we are trained for the latter and not the former. Consequently, the aver-
age patient asks five or fewer questions during a 15-minute doctor’s office
visit, with a high proportion asking no questions (reviewed by IOM, 2008),
suggesting that patients generally are not taking an active role in their care.
According to the IOM consensus report Cancer Care for the Whole Patient:
Meeting Psychosocial Health Needs (2008), poor communication and lack
of patient involvement are particularly worrisome because a substantial
literature has linked effective patient-clinician communication to positive
health outcomes. Thus, Dr. Kaplan stressed that “we need to prepare people
on how to be patients.”
Patient advocate Mr. Robert Erwin, president of the Marti Nelson
Cancer Foundation, concurred that patients often need to be encouraged
to take a more active role in their care. He suggested patients learn to see
themselves more as clients, which has more active connotations than the
term patients. Along those lines, Dr. Ganz added that patients should be
aware that they can always “fire” their doctors if they are not doing a good
job of taking care of them. Dr. Elizabeth Clark, executive director of the
National Association of Social Workers, added that patients’ self-advocacy
gives them a better sense of being in control over their own lives, which
is important after being given a life-threatening diagnosis, such as cancer.
“Self-advocacy can improve quality of life, and it may be the difference that
turns feeling hopeless and helpless into feeling hopeful,” she said.
Dr. Kaplan noted that effective patient skills include asking focused
questions, understanding that options exist, and eliciting all options and
their potential risks and benefits. Dr. Kaplan stressed that patients should
also be assertive about stating personal preferences and relevant life circum-
stances that affect treatment options and should negotiate conflicts with the
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8 PATIENT-CENTERED CANCER TREATMENT PLANNING
preferences of their physicians when these arise. Empowered patients can
actively participate in shared decision making, an important component of
patient-centered care. She defined shared decision making as “the process
of negotiation by which physicians and patients arrive at a specific course
of action, based on a common understanding of the goals of treatment, the
risks and benefits of the chosen treatment versus reasonable alternatives, and
each other’s values and preferences” (adapted from Sheridan et al., 2004).
Communication
Dr. Jessie Gruman, cancer survivor and president of the Center for
Advancing Health, pointed out that the National Cancer Institute (NCI)
has a monograph that specifies six functions of patient-centered communi-
cation (Epstein and Street, 2007):
1. Fostering healing relationships
2. Exchanging information
3. Responding to emotions
4. Managing uncertainty
5. Making decisions
6. Enabling patient self-empowerment
Other participants added that patient-centered communication should
be sensitive to patients’
• ulnerability;
v
• egree of education and ability to understand medical terms, con-
d
cepts, risks, and benefits;
• ossible reluctance to assert preferences and ask questions;
p
• references related to treatment; and
p
• ultural and spiritual outlook.
c
Several speakers stressed that provider communication should be
simple, concise, and free of acronyms and jargon, which one participant
called “oncobabble.” Such communication should be specific to avoid
medication errors or inattention to symptoms. For example, Dr. Linda
Burhansstipanov, grants director and founder of the Native American
Cancer Research Corporation and president of Native American Cancer
Initiatives, Inc., pointed out that many patients are told to contact their
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9
IMPROVING THE QUALITY OF ONCOLOGY CARE
doctors when they experience excessive bleeding, but they do not know how
much is considered excessive. Dr. Carolyn Clancy, director of the Agency
for Healthcare Research and Quality (AHRQ), added that patients may
overdose on their medications if their doctor tells them to take two a day,
without specifying if it is two pills or 2 milligrams they should be taking
daily. “You need to translate across different levels of education and literacy,
cultural context, age, gender, and many other individual differences,” said
Dr. Jeffrey Peppercorn, associate professor of medicine at Duke University
and faculty associate of the Trent Center for Bioethics.
To ensure that patients understand the information given to them,
several participants suggested that they be asked to repeat what they heard,
rather than just be asked if they understand. Dr. Clancy recalled an evalua-
tion of a diabetes education program led by nurses at an academic medical
center primary care clinic that found that although patients would nod
politely to indicate they understood the information, questions asked of
them a few days later revealed there was little retention of such informa-
tion. Dr. Burhansstipanov also suggested repeating the key points of the
treatment plan to improve patient retention of the information. Those key
points could be repeated in different ways, or given in different formats,
she suggested.
It is important for providers to solicit patient preferences and not
make assumptions about which treatment option and associated side effects
patients are more likely to prefer or feel is best for them. Dr. Sepucha
pointed out that many providers assume that women with early-stage
breast cancer, for whom mastectomy or lumpectomy followed by radiation
is equally effective, would prefer not to lose their breast. Yet in a study of
breast cancer patients who were provided with comprehensive information
about the risks and benefits of mastectomy and lumpectomy, one-third
of these informed women chose mastectomy (Collins et al., 2009). “We
can’t make assumptions that everybody is going to feel the way that we
do, so you have to ask the patient,” she said. Dr. Clancy added that some
patients with laryngeal cancer likely prefer having radiation therapy over
surgery because although they will not live as long with this treatment, it
will preserve their ability to speak and that is more important to them than
the length of their life.
Providers also have to be sensitive to what patients are saying. “You
need to have competencies on both sides,” said Willis. “It’s not enough for
me to go to my doctor and communicate my needs. My doctor needs to be
able to listen to what I’m saying.” Dr. Anthony Back, professor of medicine
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10 PATIENT-CENTERED CANCER TREATMENT PLANNING
at the University of Washington and director of the Program in Cancer
Communication at the Seattle Cancer Care Alliance and Fred Hutchinson
Cancer Research Center, noted that one meta-analysis (Venetis et al., 2009)
found that when patients are encouraged to participate in conversations
with providers and these providers show empathy, the patients are more
likely to report being satisfied with their care than when there is more
“instrumental talk,” in which the providers merely indicated the tests and
treatments they would be having. Dr. Nancy Keating, associate professor
of medicine and healthcare policy at Harvard Medical School and general
internist at Brigham and Women’s Hospital, conducted a study that found
patients with breast cancer who received the degree of input they wanted
into decision making about their treatment were more likely to report being
satisfied with their treatment choice than those who did not (Keating et
al., 2002).
Dr. Burhansstipanov, who is part Cherokee and advocates for Native
Americans, stressed the importance of being culturally sensitive when
communicating with patients of differing ethnicities and cultures. She said
misunderstandings often occur when doctors inform their Native American
patients that their biopsy is “positive” because the patient often assumes this
is good news, otherwise the doctor would not consider it to be positive. Gay
and lesbian couples, she added, should not be asked if they have a spouse,
but rather if they have a lifetime partner who should be informed of the
patient’s medical condition.
She also noted that many Native Americans view spirituality as
being intertwined with healing and seek traditional healers or spiritual
advisers while being treated medically. Physicians need to be sensitive
to other religious traditions, as well as the role spirituality plays in heal-
ing, Dr. Burhansstipanov said. She added that doctors also have to be
cognizant that in some Native American tribes, the mother is the decision
maker for her children, even grown children, and thus must be consulted
when devising cancer treatment plans.
Other speakers stressed the importance of communication with the
family or caregivers of the patient as well as with the patient, and recogni-
tion that their informational needs are different. For example, family mem-
bers need to know how to care for a patient during cancer treatment, how
to plan for practical and financial concerns, and how to talk with children
about a parent with cancer, Dr. Marie Bakitas, associate professor of anes-
thesiology at Dartmouth Medical School, pointed out. Studies show it is
also helpful to have family members or other companions with patients at
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11
IMPROVING THE QUALITY OF ONCOLOGY CARE
doctor visits to make sure that patient needs, preferences, and questions are
conveyed and that the information is being understood. As Dr. Ganz noted,
because of the stress of a cancer diagnosis and treatment, a patient may not
be able to ask questions and take in what the doctor is saying and a family
member or a companion may be more able to do so. One study found that
when a companion was present with a patient, significantly more questions
were asked than when the patient was alone (Eggly et al., 2006). Dr. Back
suggested that physicians should endorse having patients be accompanied
by someone other than a family member or friend. This person could take
notes, ask questions, and hopefully retain more of what is said than would
a family member or friend who is emotionally attached to the patient.
Communication with Patients with Advanced Cancer
Communication about advanced cancer can be especially challeng-
ing. Dr. Peppercorn referred to a statement from the American Society of
Clinical Oncology (ASCO) on care for patients who have advanced cancer,
and thus a poor prognosis (Peppercorn et al., 2011), specifying that when
discussing cancer treatment options with patients, they should be told the
relevant pessimistic information as well as optimistic information to best
inform their decision making. The policy statement also argues that patients
should be told not just the likelihood of a response, but the nature of that
response (i.e., whether it will improve symptoms, shrink the cancer, or slow
its progression), as well as its costs and toxicity.
Although it can be difficult to convey a poor prognosis, some speak-
ers stressed the importance of being honest when communicating with
patients. Dr. Thomas Smith, professor of medicine and palliative care at the
Virginia Commonwealth University Massey Cancer Center, said his stud-
ies show that patients expect their physicians to be honest with them and
informing patients that they have a fatal illness does not quash their hope
or make them depressed. However, Mr. Erwin noted that patients like to
hear, and physicians like to give, hopeful information, even when it is false
hope. This often leads to an overpromotion of various types of treatments
that are not likely to be effective in late-stage cancer. “It’s almost as though
we no longer give people permission to die,” he said, “so the end-of-life
aspect of cancer care can get lost.”
Dr. Smith stressed the importance of conveying to patients in the final
stages of cancer that although there may no longer be any effective treat-
ment against their cancer, there are still treatments that can improve their
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48 PATIENT-CENTERED CANCER TREATMENT PLANNING
Dr. Mayer added that until information technology issues such as pri-
vacy and compatibility are addressed, the creation of survivorship care plans
will require a laborious effort. “We need to take advantage of the health
information technology efforts that are going on in healthcare reform now
to create these interfaces that will make doing these things a bit easier,” she
said. To ensure the value of survivorship care plans before they are fully
implemented, Dr. Mayer suggested identifying and measuring outcomes
when the plans are put into practice. “While this is not an evidence-based
intervention currently, there is no reason why it can’t be over time,” she said.
POLICY OPTIONS TO PROMOTE PATIENT-
CENTERED CANCER TREATMENT PLANNING
Participants suggested several policy options to promote patient-cen-
tered cancer treatment planning, including standards for training, licensure,
and practice of providers, financial incentives, research, and healthcare
reform.
Standards for Training, Licensure, and Practice
Several speakers suggested setting standards of care for oncology that
include patient-centered treatment planning and communication, and mak-
ing these standards part of physician training and licensure. Mr. Boyajian
also suggested that standard cancer treatment plan templates be developed
on a national level and made freely available to institutions and practices.
Dr. Ganz suggested that one standard of care for the initial cancer
treatment planning process should be for a multidisciplinary team that uses
the best available evidence. The treatment planning process should include
the patient and family in decision making, encourage second opinions to
validate the initial provider’s recommendations and diagnosis, and organize
treatment decisions with a written treatment plan that is communicated to
all parties, she added.
Dr. Bakitas suggested developing cancer treatment planning guide-
lines that make oncology nurse education sessions about cancer treatment
explicit and mandatory. Attending to patients’ psychosocial concerns should
also be made a standard of patient-centered care, and there should be poli-
cies, funding, and training that supports this, stressed Drs. Clark, Partridge,
and Hoverman and Ms. Esparza. Currently social workers are not reim-
bursed for many of their services to cancer patients, Dr. Smith pointed out.
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IMPROVING THE QUALITY OF ONCOLOGY CARE
Mr. Gorman added that viewing good physician communication with
patients as a skill that can be learned, rather than a trait that is inherited, has
led some state medical licensing boards to start to require adequate physi-
cian communication in their certification process, especially for internal
medicine and its subspecialties.
Financial Incentives
Financial incentives are also needed to spur implementation of patient-
centered cancer treatment planning, according Dr. Ganz. As Dr. Keating
noted, “The visit-based reimbursement system that we have in health care
doesn’t help us at all because doctors’ schedules are packed, and they don’t
have a lot of time.”
Dr. Ganz suggested that insurers could incentivize patient-centered
care by reimbursing physicians only if they provide the documentation
that is involved in creating a patient-centered cancer treatment plan. As she
pointed out, insurers already require documentation on a number of items
for reimbursement. Dr. Shulman added that one of Massachusetts Blue
Cross’s pay-for-performance metrics is the creation of treatment plans. The
reasoning for this, he said, is that encouraging more documentation of care
can ensure that proper care is being given (for example, obtaining KRAS11
status before administering cetuximab to colon cancer patients). The docu-
mentation also enables insurers to be proactive, such as providing nurse
navigators when needed to reduce emergency room visits and hospital stays.
In an initiative led by the NCCS, patient advocates have lobbied for
legislation that would require the Centers for Medicare and Medicaid Ser-
vices (CMS) to cover cancer care planning as part of its Medicare program,
Ms. Elizabeth Goss, partner at Turner & Goss, LLP, reported. She said
there were plans to reintroduce the legislation, called the Comprehensive
Cancer Care Improvement Act, to Congress again in 2011. Mr. Erwin also
suggested that CMS could pay for a patient-centered care program as part
of its coverage with evidence development program.12
11 Kirsten ras, a type of oncogene in which activating mutations play a key role in the
progression of some cancers, such as colon cancer.
12 On July 12, 2006, CMS released a guidance document titled National Coverage
Determinations with Data Collection as a Condition of Coverage: Coverage with Evidence
Development (CED); see https://www.cms.gov/CoverageGenInfo/03_CED.asp (accessed
May 12, 2011).
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50 PATIENT-CENTERED CANCER TREATMENT PLANNING
Research
Many participants said that an integral component to providing more
patient-centered cancer treatment planning is the collection of more data
on patient-centered outcomes such as how various cancer treatments affect
patients’ quality of life and daily functioning. “If we are going to have
good decisions, we have to have good evidence,” said Dr. Sharon Murphy.
Dr. Mayer added, “We need to create the evidence as we go along and
think about the evidence we want to collect.” Dr. Greenfield also stressed
the need to do more comparative effectiveness research to provide infor-
mation that patients and their doctors need when deciding on the most
appropriate care.
To facilitate patient-centered care, AHRQ has conducted surveys
through the Consumer Assessment of Healthcare Providers and Systems
(CAHPS) program. These surveys are designed to bring the patient’s voice
into assessments of healthcare quality and the results will be used for qual-
ity improvement and consumer choice. AHRQ is currently working with
the NCI to develop a cancer-focused CAHPS, Dr. Clancy said. The agency
also conducts research aimed at addressing questions that are particularly
important to cancer patients, such as what the long-term consequences of
various cancer treatment options are.
Dr. Claire Snyder, associate professor of medicine at Johns Hopkins
University, pointed out the usefulness of the Patient Reported Outcomes
Measurement Information System (PROMIS) developed by the National
Institutes of Health (NIH). This system is designed to collect a wide array
of outcomes, not just those relevant to cancer, and provides short forms
as well as computer-adaptive tests to ensure that the questions asked are
relevant to the patients in a specific population. It also enables compari-
sons across studies. She added that cancer patients can log on and enter
information about their quality of life at patientviewpoint.org, which is
then fed into the patients’ electronic medical record. Dr. Glasgow noted
that PROMIS could also advance performance measurement by creating
a common core set of patient reported measures that can be widely used
in patient care.
Other tools are also available to measure patients’ quality of life,
including the Memorial Symptom Assessment Scale, Dr. Mayer reported,
as well as the PACIC (Patient Assessment of Chronic Illness Care) that
was developed by Dr. Glasgow and measures patient experiences with a
chronic disease. Dr. John Ayanian developed a survey instrument based on
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51
IMPROVING THE QUALITY OF ONCOLOGY CARE
the Picker patient-centered principles,13 Dr. Wagner reported, and he has
found it useful in measuring problems that patients are experiencing in their
cancer care. Dr. Wagner cautioned against using generic patient satisfaction
surveys because he said they lull providers and organizations into thinking
they are measuring patient experience when they are not doing so effec-
tively. Dr. Smith also stressed the need to verify patient-reported outcomes,
because some may be based on false hopes or other misconceptions of what
can be achieved with treatment.
Supporting the endeavor to conduct research whose findings will
aid cancer treatment planning are the millions of dollars AHRQ recently
received via the American Recovery and Reinvestment Act of 2009 to sup-
port patient-centered outcomes research, as well as the establishment of
the Patient-Centered Outcomes Research Institute (PCORI), which was
called for in the Patient Protection and Affordable Care Act of 2010. This
institute is supported by federal funds, including taxes on insurers that
will amount to about $600 million a year, Dr. Clancy reported. PCORI
is governed by stakeholders and has a 21-member board that includes the
directors of AHRQ and NIH, industry representatives, clinicians, insurers,
and consumers. She said that PCORI will be unique in giving researchers
the capacity to do long-term follow-up of cancer patients and to acquire
patients’ perspectives on the care they received and how it affected them.
“The only way you can find out if care is patient-centered is to ask the
patients themselves. Clinical aspirations to get to patient-centered care
aren’t enough. We are going to need to get there by constantly checking to
see how we’re doing,” Dr. Clancy said.
Healthcare Reform
Several participants suggested policies to enhance systematic healthcare
reform that promotes patient-centered cancer treatment, including more
accountable care organizations that coordinate care under a single institu-
tion and have quality metrics and incentives to ensure that patient-centered
care is being provided. Dr. Wagner noted that “cancer patients need a clini-
cal home that takes responsibility and is accountable for the quality of care
through all the handoffs.” Dr. Wagner emphasized this need in his figure of
the chronic care model, adapted specifically for oncology (Figure 3).
Dr. Hoverman added that such model cancer treatment centers will
13 See http://pickerinstitute.org/about/picker-principles/.
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Figure 3
R01988
vector editable
scaled forATIENT-CENTERED CANCER TREATMENT PLANNING
P landscape above, portrait below
52
Health System
Community
Resources and Policies
Resources and Policies Collabora ng Health Care Organiza ons
Decision Support and Clinical Informa on
Psychosocial and
Mul disciplinary
Self-Management Systems and Performance
Care Planning
Support Measurement
Phase of Care
C
Account- O
O
Diagnosis
able
Collaborative
Informed, R
Prac ce
Care Plan and D
Surgery
Ac vated Team I
Linked
Pa ents and N
and/or Adjuvant Rx
Interactions A
Families Care T
Survivorship
Manager/ I
O
Navigator
Improved N
Pallia on
Outcomes
FIGURE 3 The model of quality cancer care developed by Dr. Ed Wagner emphasizes
the need for an accountable practice team or navigator to ensure that cancer care is
coordinated among the different phases and modalities of care.
SOURCE: Wagner presentation (March 1, 2011). Reprinted, with permission, from
Ed Wagner.
work only if they can be shown to save money, and he encouraged an
exploration of how resources can be redirected within the healthcare system.
Dr. Ganz suggested addressing the inefficiency and waste in the current
healthcare system and said that the resources saved in this effort could be
put to use providing better, more comprehensive, and more coordinated
care to patients. Dr. Smith noted that abundant resources can be saved
by providing cancer patients with appropriate end-of-life care. Mr. Smith
suggested involving health economists in healthcare reform efforts and
conducting studies that address the financial concerns of the Congressional
Budget Office.
Other powerful tools for change are videos of patients telling their own
stories, several participants suggested. Mr. Erwin added, “You ultimately
have to have the facts to have good legislation, but if you don’t have the
story and the emotion and the sound bite, the facts themselves don’t sell
very easily.” He noted that having people convey their personal experiences
with breast cancer was instrumental in getting state cigarette taxes allocated
to breast cancer research in California. Ms. Smith added that “engaging
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53
IMPROVING THE QUALITY OF ONCOLOGY CARE
patients in solving the barriers is really important,” and Mr. Gorman sug-
gested that patients be taught advocacy skills so they can tell their stories
powerfully and succinctly.
FINAL REMARKS
According to many workshop speakers, cancer patients often are not
receiving patient-centered cancer treatment planning, and many speakers
suggested that there needs to be more promotion of such planning via
accreditation standards, guidelines, financial incentives, training, and pol-
icy. Speakers also suggested that research on patient-centered cancer treat-
ment outcomes and the value of cancer treatment plans is needed. However,
several people also pleaded to avoid letting “the great be the enemy of the
good” but rather to take concrete steps now, based on existing knowledge
and evidence, to foster patient-centered cancer treatment planning. “We
have enough trends to show that this is going in a very positive direction,”
noted Ms. Esparza. “Don’t use evidence-based practice as an excuse not to
do anything.” Mr. Boyajian added, “Develop some consensus, go forward
from that, and look for the evidence afterwards. I don’t want to be a patient
that is left behind while you are waiting for the gold standard. I want you
to give us your best guess, and we’ll start looking at that.”
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