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American Society of Clinical Oncology Statement: Toward Individualized Care for Patients With Advanced Cancer
Jeffrey M. Peppercorn, Thomas J. Smith, Paul R. Helft, David J. DeBono,
Scott R. Berry, Dana S. Wollins, Daniel M. Hayes, Jamie H. Von Roenn,
and Lowell E. Schnipper
Journal of Clinical Oncology ASCO Special Article
Consider a 60-year-old woman in your clinic who underwent hemicolectomy and adjuvant chemotherapy 2 years ago for T3N1 colon cancer. Surveillance CT revealed multiple new hepatic metastases. You are about to leave the room after spending over 30 minutes getting consent for chemotherapy when she asks "Doc, how long do I have?" Consider the same patient two years later after her cancer has progressed despite extensive chemotherapy. Her performance status has fallen to ECOG 3, so she is no longer a candidate for additional anticancer therapy. These 2 scenarios and many others represent critical crossroads in the trajectory of cancer care. The types of conversations required during these crossroads present tremendous challenges and opportunities for us and our patients.
In this day and age, when we talk about "personalized cancer care", we usually refer to molecularly targeted, rationally designed treatments. However, the scenarios described above illustrate a broader definition of "personalized care", one that takes physical, psychological, social, and spiritual issues into consideration. Such an approach requires stepping back from the paradigm of applying one line of therapy after the other and moving toward one that is consistent with evidence-based options and the patient's informed preferences.
The current paper is an outstanding and important JCO position statement contributed by several leaders in the fields of healthcare communication, palliative care, and advanced care planning. In the introduction, the authors point out that transition to palliative care typically occurs far too late in the course of treatment or not at all. They state that we need to change the paradigm for advanced cancer care to include an earlier and more thorough assessment of patients' options, goals, and preferences, and to tailor the care we deliver to these individual needs throughout the continuum of care, not just at the end of life. The paper is divided into the following major sections: 1. goals for individualized care, 2. barriers that currently limit realization of this vision, and 3. strategies to overcome these barriers.
Goals of Individualized Care for Patients with Advanced Cancer
Goal 1: Determine whether we can treat the cancer. Despite many advances, chemotherapy controls advanced cancer for only months rather than years in the vast majority of cases. In addition, objective response does not always translate into improved quality of life or survival. Further, in many cases we simply have no options that are clearly beneficial, yet all interventions have some chance of toxicity. Given these limitations of current therapy, the authors point out that treating the cancer should be viewed as an option for discussion rather than a default.
Goal 2: Maximize quality-of-life. When patients have no reasonable therapeutic options remaining, they should be encouraged to transition to palliative care.
Goal 3: Maximize enrollment in clinical trials.
Barriers to Achieving Individualized Care for Patients with Advanced Cancer
Barrier 1: Candid conversations can make us feel like we are giving up or admitting failure.
Barrier 2: Most of us have little or no training in how to engage in these candid conversations. These conversations are particularly difficult, because we so often reserve them for late in the course of a patient's illness, rather than developing an open dialogue early in the course of routine care. Not surprisingly, such conversations currently occur with only about 40% of patients with advanced cancer.
Barrier 3: These conversations are typically very time-consuming, difficult to accomplish in a typical follow-up visit, and not paid for.
Keys to Successfully Providing Personalized Cancer Care
Key 1: Emphasize Individualized Care in Education, Training, and Quality Improvement Programs
- Teach oncologists how to engage in candid conversations around personalized cancer care during oncology training, certification, and continuing medical education.
- Incorporate palliative care into American Board of Internal Medicine training
Key 2: Support Individualized Care. Reimburse oncologists for discussing a patient's goals and preferences and providing individualized care.
Bottom Line: This paper is a must read for anybody who cares for cancer patients.
Nancy L. Keating, Mary Beth Landrum, Neeraj K. Arora, Jennifer L. Malin,
Patricia A. Ganz, Michelle van Ryn, and Jane C. Weeks
J Clin Oncol. October 1, 2010 28:4364-4370
As recently as just a few decades ago, most American physicians played the dominant role in making decisions on behalf of their patients, with patients and family members playing a minor role. This paternalistic model has for the most part been replaced in recent years by a more open and transparent model that involves disclosing information to patients and encouraging them to share in the decision-making process. Studies suggest that patients who more actively participate in their care are more satisfied with their care and may have better health outcomes. Such findings led the Institute of Medicine to recommend that patient centeredness be a key aim of health care organizations and that all patients be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them. Several studies have assessed cancer patients' preferences for participation in decision making. Patients who are younger, better educated, and healthier tend to prefer a more active role in treatment decisions. Less is known about whether patients' roles differ by factors related to the decision itself. The current paper addresses this knowledge gap.
Each patient in the study who discussed surgery, radiation, or chemotherapy with a physician was asked to report his or her role in the decision by telephone. Patients were asked, "Which statement best describes the role you played when the decision was made about [modality] for your [lung or colorectal] cancer?" Response options were as follows:
- "You made the decision with little or no input from your doctors,"
- "You made the decision after considering your doctors' opinions,"
- "You and your doctors made the decision together,"
- "Your doctors made the decision after considering your opinion,"
- "Your doctors made the decision with little or no input from you."
The first two responses were categorized as patient controlled, the third was considered shared control, and the last two were considered physician controlled.
The authors found that variability in the strength of evidence influenced patients' roles. The highest rates of shared control were for decisions supported by solid evidence, for example, adjuvant chemotherapy for stage III colon cancer. The highest rates of patient control occurred when evidence of benefit was uncertain, for example adjuvant chemotherapy for stage II colon cancer or surgery for stage IIIa non-small cell lung cancer. The highest rates of physician control occurred when there was no evidence to support the use of the treatment, for instance radiation for stage I or II non-small cell lung cancer.
According to the authors, high-level evidence from the literature shows that chemotherapy for metastatic cancer offers at best only modest benefits and is accompanied by toxicity in essentially all patients. As a result, there is near uniform consensus that decisions about these treatments should reflect patients' preferences. Surprisingly, however, they observed lower rates of patient control and higher rates of physician control for these inherently preference-based decisions. The authors speculated that patients with more severe illness want less involvement in their decisions or that patients do not want to own decisions about therapies that cannot cure them. They further speculated that lack of curative treatments is perceived by patients as a loss of control over their cancer and, by extension, a loss of control over the decision.
Finally, they found that patients' roles in decisions differed by treatment modality, with more patient control for chemotherapy decisions and more physician control for surgery and radiation decisions. The authors suggested that oncologists may be more inclined to engage patients in decisions than surgeons and radiation oncologists.
One of the main limitations of this study is that the authors did not have information about physician's communication style or other details about the decision-making process. In addition, the effects observed were modest, at best, even if they were statistically significant.
So, how does one apply the results of this paper to oncology practice? For practical purposes, this paper, while interesting, is not very clinically useful. In the final analysis, oncologists need solid communication skills to determine how any given patient wishes to make a particular decision. Active listening is perhaps the most important such communication skill. We can usually determine our patients' preferences if we simply listen very carefully and follow their leads with open-ended questions.
One of the most difficult aspects of oncology practice is its inherent uncertainty. Cancer treatments are often toxic, and many cancer patients are incurable. In addition, even the most advanced treatments have little if any benefit for patients with certain types of cancer. Recommending a clear course of action is often extremely difficult. Leadership is therefore extremely important in oncology. We need to use our clinical experience, experience of colleagues, caring and compassion to recommend a course of action to our patients, especially in the face of clinical uncertainty. Our job is to guide the patient in making a well-informed decision on his or her own behalf.
Lidia Schapira, Phyllis Butow, Richard Brown, and Frances Boyle
J Clin Oncol. February 1, 2010 28:705-7
Shapira and colleagues begin this paper by presenting the case of a young mother with progressive stage IV pancreatic cancer who has exhausted all reasonable chemotherapy options. A staff oncologist, accompanied by a first-year oncology fellow, visited the patient. With the patient acknowledging she wanted to hear prognostic information, the medical oncologist had a heart-to-heart discussion with the patient. The senior oncologist noted that survival is typically measured in weeks. They discussed treatment options ranging from additional chemotherapy to participation in an early-phase clinical trial. They talked about symptom management and hospice care. They agreed that no further cytotoxic chemotherapy would be used. The conversation was difficult for all: the patient and her husband cried and the oncologist was visibly moved.
After leaving the room, the staff oncologist and fellow discussed the consultation. The fellow asked the oncologist why he was so pessimistic when talking with the patient. Why did he say things to make the patient and her husband cry? Shouldn't he have given the patient more hope? Would it not have been better for the patient to hear this dire news in chunks over the course of several clinic visits? After all, the patient was so young she may just beat the odds.
This paper presents strategies for providing accurate and realistic prognostic information while maintaining hope. Some physicians think that the principal of beneficence indicates that we should not discuss bad news with patients, because doing so is cruel. However, the vast majority of patients want realistic information, and most physicians believe patients and their families need realistic prognostic information in order to make informed decisions.
How do we discuss poor prognosis while maintaining hope? Most people think of hope in terms of cure or remission. However we need to reframe the discussion. People can hope for many things, such as to be pain free, to have meaningful relationships, to reach an important goal or event, to maintain dignity, and to have a good death. The best way to help individual patients is to ask them directly what they hope for and use that as a focal point for discussing prognosis and setting realistic expectations. Factors that influence a patient's hopefulness are the physician's willingness to talk about prognosis, to answer questions and to provide information openly and honestly when asked, to offer the most up-to-date treatment, and to also provide emotional support.
Shapira and colleagues cite a paper in which the authors concluded that the best communication strategy to maximize patient knowledge for informed decision making, while remaining sensitive to patients' emotional needs, may be to emphasize optimistic aspects of prognosis while also consciously and clearly communicating pessimistic aspects of prognosis. A fitting metaphor is that of a seesaw or pendulum, with optimism and pessimism on each end and realism in the middle. The oncologist then assists the patient in this balancing act by moving towards pessimism if that is what is needed to bring the patient closer to the middle—the safest place to be. So, in summary, a little pessimism, when applied judiciously, can help patients reach a realistic understanding of their prognosis and thereby make well-informed decisions.
The last interesting point is the fellow's observation that the oncologist "made the patient cry." It is always surprising how little tolerance oncologists have for patients getting upset as though this was not only their fault, but also some kind of pathological event. Crying to be sure can evoke sympathy or even helplessness in others. But in reality it is a normal and very human reaction to loss…in this case the loss of dreams, wishes and expectations. What should the oncologist's response to this be? There is no doubt that there is "emotional labor" involved in resisting one's own impulse to fix the problem (all of us doctors have a strong reflex to do this) or water down the information. Instead we must all strive to recognize that patient tears are an expression of humanity, that they may invoke sad feelings in us, but ultimately it is not about us, but about the patient. Empathic statements such as "I was hoping for a better result also," or " I wish I could give you better news," can often support and align ourselves with the patient's sadness instead of becoming immersed in it.
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 J
Clin Oncol 26:3896-3902.2008
Discussing Hospice Care
Charles F. von Gunten
Classic Papers, Supplement to JClin Oncol, 21(9): 31s-36s, 2003
We have made substantial advances in cancer treatment in recent decades and this is one very encouraging and satisfying aspect of our work in oncology. Nonetheless, many of our patients still ultimately succumb to their illness despite our best efforts. Our jobs are therefore daunting. Discussing end-of-life issues is always difficult, no matter how much we do it. Perhaps we shy away from these discussions because we do not want our patients to think we are giving up on them. We develop close bonds with our patients and feel intense sadness when we see cancer rob them of their vitality. Many of us come face to face with our own mortality when our patients die. Perhaps many of us would like to talk to our patients about end-of-life issues, but we are not confident in our ability to so.
As difficult as end of life discussions are, they are critically important to good-quality care. Patients and their families need to be fully informed about potential risks, benefits and rationale for various treatment options at all stages of their illness. This is as true at the time of diagnosis as it is during transition to palliative care, and all stages between. The process of keeping patients fully informed, negotiating various treatment options and allowing them to participate in their own decision making is referred to as patient-centered medicine, which is endorsed by the National Cancer Institute and the Institute of Medicine.
Advance care planning is a facet of patient-centered medicine that deals with discussing goals of care at critical junctures during evaluation and treatment. Many people think of advanced care planning as simply filling out legal documents, including living wills, durable power of attorney for health care matters and out-of-hospital DNR forms. However, advance care planning is a broad construct that emphasizes the steps required to facilitate patients to guide their future care.
In the first paper, Walling et al. present evidence-based recommendations for information and care planning in cancer care. Experts agree that advanced care planning should be discussed with cancer patients at time of diagnosis and other sentinel events, including initiation of chemotherapy or change in regimen, admission to the hospital, admission to the intensive care unit, initiation of mechanical ventilation, diagnosis of CNS metastasis, decision to undergo major surgery or decision to pursue invasive measures such as hemodialysis or gastric tube placement.
Oncologists should be open with patients about prognosis and be comfortable addressing sensitive issues such as future goals of care so that patients and their families can make truly informed decisions. Educational interventions for physicians are critical to help them feel comfortable having these difficult conversations. Many clinicians think that discussing goals of care is very time consuming. However, doing so actually saves time in the long run.
The second paper, a classic by Charles von Gunten in the Journal of Clinical Oncology, deals with a specific facet of advanced care planning, namely referral to hospice. This is perhaps the most difficult topic of all for us to discuss. Many of us think we extinguish patients' hopes when we discuss hospice. Patients and doctors are appropriately uncomfortable during these discussions. However, patients ultimately value honest discussion even if it is uncomfortable in the short-term, as long as it is delivered in a sensitive fashion.
Von Gunten begins by presenting a clinical vignette of a patient with advanced cancer who is appropriate for hospice referral. He presents two scenarios of doctors unsuccessfully attempting to discuss hospice referral. In the first scenario, the physician is extremely uncomfortable and delivers the message in a very blunt, insensitive manner by declaring "there is nothing more we can do for you". In the second scenario, the physician enters the room in a rush and off-handedly recommends that the palliative care team assist in comfort measures without actually discussing the hospice concept. The palliative care team is then left in the uncomfortable position of having to discuss the sensitive topic of hospice referral with a patient they had never met.
Von Gunten discusses the nature of hope and the many forms that hope can take. Hope is ultimately defined by the individual. Patients may hope for cure, especially early during their illness. Later on, patients may hope treatments prolong their survival. Many patients hope for good quality of life or even a peaceful death among their friends and loved ones. Each patient has his or her own priorities. Von Gunten discusses ways of keeping hope alive even in the face of life-threatening illness when the patient is faced with imminent death.
He presents a specific stepwise strategy for discussing hospice referral, which consists of establishing an appropriate setting for the discussion, asking the patient and family what they understand, finding out what they expect, discussing overall goals and how hospice will help achieve those goals, responding to emotions and ultimately establishing and implementing a specific plan. These steps epitomize the patient-centered approach to communication. Von Gunten points out that under appropriate circumstances, referral to hospice is the standard of care and should be presented to patients and their families as such.
Discussing hospice referral is difficult. Many respected clinicians will feel sad and may express that emotion. Some will even cry. Patients and families report that crying is a sign that their physician cares rather than a sign of weakness.
At the end of the paper, von Gunten presents the clinical vignette again, but shows how it should be done properly. This paper is extremely important from a practical standpoint for clinicians who wish to engage in difficult discussions but want to do so in a sensitive and informative way. Discussing difficult topics such as hospice referral is a skill that can be learned and taught. All practicing cancer providers should be skilled in this process, and the academic community should emphasize communication skills training in order to enhance quality of care and reduce stress and burnout among physicians in training.
Anthony L. Back, Robert M. Arnold, Walter F. Baile, James A. Tulsky,
Gwyn E. Barley, Roy D. Pea, and Kelly A. Fryer-Edwards
J Clin Oncol. 2009 Mar 1;27(7):1137-41
Effective communication is critical to success in oncology practice. Patients are extremely sensitive to the way oncologists communicate, and what oncologists say determines quality of care. Communication skills are learned rather than innate. Most communications curricula focus on medical students, and little time or effort is spent teaching communication skills during oncology fellowship relative to the time spent teaching technical skills, such as choosing chemotherapy regimens. Faculty development for teaching communication skills tailored to oncology fellows is therefore critical.
This paper describes Oncotalk Teach, an NIH-funded curriculum for oncology faculty to learn how to teach communication skills to oncology fellows. The program consists of an initial three-day retreat, six months of distance learning and a second three-day retreat. Oncotalk Teach is intriguing since it does not teach communication skills themselves so much as it teaches faculty how to teach these skills. This may sound like a trivial distinction, but in reality the skill sets are entirely different.
The introduction to the paper describes a scenario in which an oncology faculty member is unsure how to teach a fellow to discuss prognosis realistically without being blunt or harsh. This sets the scene for the heart of the paper, in which the authors describe how the new paradigm, which is the basis for Oncotalk Teach, compares with old teaching habits. For instance, in the old paradigm, the teacher is the “expert,” the teaching approach is “watch the expert in action,” the teacher lists desirable communication behaviors and has primary communication responsibility.
In contrast, in the new paradigm, the teacher is a coach who sets the learner up for a successful encounter by engaging the learner in goal setting and problem solving, builds a strategy with the learner based on what they need to accomplish with this particular patient in this visit, allows the learner to take some primary communication responsibility, and explains his or her thinking to the learner afterward. This new paradigm allows learners to progress along their own developmental path. The new paradigm is based on a large body of empirical work in the learning sciences. This research describes the importance of developing learning environments that enable trainees to develop their own capacities, use their own talents, and develop sets of personal skills and competencies that will serve them throughout their careers.
The authors then present strong preliminary evidence from the first year of Oncotalk Teach, 2007-2008, that their method works, and discuss limitations of the method. They finally return to the case presentation and describe strategies that the faculty member can use to effectively teach the fellow how to communicate poor prognosis realistically without being blunt or harsh.
Having participated in the second year of Oncotalk Teach, I can attest to the power of the new paradigm. I considered myself a good communicator before I began the course in Fall 2008, and I therefore thought learning to teach communication skills would be easy. However, I soon learned that my communication skills were not as good as I thought. More importantly, I had no clear strategy, or “cognitive road map,” for teaching communication skills before I participated. After participating in Oncotalk Teach, I am a much more reflective communicator and much better teacher. Nonetheless, I know I will need to continue to practice the skills that I acquired in order to strengthen them, just as one needs to practice any skill in order to improve.
Diane S. Morse, MD; Elizabeth A. Edwardsen, M.D.; Howard S. Gordon, M.D.
Arch Intern Med. 2008;168(17):1853-1858
Empathy is important in patient-physician communication and is associated with improved patient satisfaction and adherence to physicians' recommendations.
Morse et al. analyzed 20 audio recorded, transcribed consultations between patients with lung cancer and their thoracic surgeons or oncologists to evaluate how often physicians responded appropriately to patient emotions, a situation which the authors call "empathic opportunities." Examples of empathic responses to patient emotion include "This must be very difficult for you" or "I wish I had better news for you" after delivery of bad news. They detected 384 empathic opportunities during the 20 encounters. The authors grouped these opportunities into seven categories:
- morbidity or mortality concerns
- cancer-related symptoms
- relationship to smoking
- decisions about treatment
- beliefs about or mistrust of medical care
- factors limiting ability to treat cancer
- confusion regarding cancer status and treatment
Remarkably, doctors offered empathic responses only 10% of the time, which compares poorly with previous studies in the literature showing doctors acknowledged 25-30 percent of such opportunities. For instance, in one scenario cited in the paper, the patient described his situation as "very, very scary," yet the doctor responded with purely technical information about treatment options rather than an empathic response. The authors conclude that their results may help physicians recognize empathic opportunities and thereby become more empathic.
The poor results of the study may be due to the fact that the authors set a very low threshold for "empathic opportunities." For instance, in one scenario, the patient said:
"It's on the bottom of my lung ... It's about as big as a golf ball ... they want to see if they can get another doctor to see if they can cut it out or ..."
The doctor replied:
"When you breathe, you barely get a quart ... The amount of disease you have is normally treated with surgery, but we cannot operate on you because you will not have enough lungs to live with."
In this interchange, it can be argued that the patient may not have been expressing an emotion (which would call for an empathic response) but may have been relaying information from another doctor or a consultation. In this case the patient may have actually expected technical feedback rather than empathy. Although one might argue that the physician could have explored for emotion in the patient, it seems that the doctor's response was not particularly insensitive, which is what the authors suggest. This points out a methodological issue in these kinds of studies which speaks to the difficulty in identifying exactly what is an emotion and when it calls for an empathic response.
Nonetheless, even if the authors had only selected truly obvious empathic opportunities, such as when patients cried or mentioned fear, the results undoubtedly would have shown many missed opportunities.
The authors suggest multiple reasons why physicians may give fewer empathic responses than desired. First, physicians are frequently under time pressure and may believe that empathic responses will lengthen the visit. However, the current study showed the opposite effect: empathic responses actually shortened visits. Second, physicians may not recognize empathic opportunities, perhaps because they are busy attending to other tasks (e.g., diagnosis). Alternatively, physicians may consciously avoid responding empathically to some patient concerns. For example, patients' morbidity and mortality concerns can be particularly difficult for physicians to address. This difficulty may be related to limited cure potential that results in a sense of failure and/or identification with the patient that is difficult for the physician to acknowledge or express and may raise within the physician awareness of his or her own vulnerability to illness and mortality. Clinicians may manage this sense of failure by blaming patients' behavior or seeing it as "justified" for those who have cancer and other conditions or situations. Lack of empathy may also have been due to physician burnout despite the fact that other studies suggest that providing empathy is one way to prevent burnout, reduce physician stress and make medical practice more rewarding. Finally, physicians may believe that some patients (e.g., V.A. hospital patients, in the current study) are stoic and would not welcome empathic responses. However, the current study suggests that these patients present empathic opportunities at rates similar to those from other studies and respond positively when empathy was provided.
BOTTOM LINE: Empathic acknowledgement of patient emotions and concerns may have a number of beneficial outcomes such as strengthening the relationship with the patient and identifying important patient concerns. Contrary to popular thinking, responding empathically does not necessarily prolong patient visits. We need to be better at recognizing empathic opportunities and responding to them appropriately. Our empathic responses should occur earlier and at intervals throughout encounters to explore and validate patients' needs and concerns and build understanding to allow progressive establishment of rapport and trust.
Daniel Epner, M.D.
Associate Professor, Department of General Oncology
Dr. Epner received his medical degree from Baylor College of Medicine and completed his clinical and research fellowship in medical oncology at Johns Hopkins School of Medicine. Dr. Epner's primary clinical focus is on the international oncology patients seen in the International Cancer Assessment Center (ICAC). Dr. Epner has published several articles in peer-reviewed journals and is developing research and educational programs to improve communication between cancer patients and their providers and to study the role culture plays in oncology practice.
Archived Featured Articles
- American Society of Clinical Oncology Statement: Toward Individualized Care for Patients With Advanced Cancer
- Cancer Patients' Roles in Treatment Decisions: Do Characteristics of the Decision Influence Roles?
- Pessimism Is No Poison
- Featured Topic – End-of-Life Issues
- Faculty Development to Change the Paradigm of Communication Skills Teaching in Oncology
- Missed Opportunities for Interval Empathy in Lung Cancer Communication