Sepucha and colleaguesp. Health researchers, advocacy organizations, and the Agency for Healthcare Research and Quality AHRQ have also encouraged patients to play a larger role in making medical decisions. Research indicates that when patients are involved in their own care, they are more satisfied with the care they receive and often experience better health outcomes Alston et al.
Patients with cancer and their families are often required to manage greater portions of their cancer care due to advances in cancer treatment, as well as changes in the practice of health care, such as earlier discharge from the hospital CFAH, ; McCorkle et al. These duties may include drug management, wound care, rehabilitation, and lifestyle changes CFAH, Clinicians help patients engage in self-management, which involves managing the medical and psychological aspects of cancer care, as well as adapting to changes in roles that result from cancer diagnosis McCorkle et al.
Promoting patient self-management can facilitate shared decision making and improve cancer care.
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Each of these factors is discussed below. Complexity of Cancer Care Cancer care is complex. It may involve multiple treatment modalities, including chemotherapy, radiation, and surgery, all of which need to be coordinated among different cancer care specialists. Treatment regimens can also be time intensive, debilitating, and often result in serious and sometimes long-term complications IOM, a. In addition, patients must often choose from multiple cancer treatment options, requiring patients and their families to decide on the goals of treatment e.
These decisions often need to be revisited at various points along the cancer care continuum. A patient's goals or preferences at the time of initial diagnosis, for example, may be very different from a patient who has advanced cancer.
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Limitations in the Evidence Base As described in Chapter 5the committee recommends that researchers improve the breadth and depth of information collected in clinical research. Studies indicate that there is a lack of evidence to support many medical decisions El Dib et al. Evidence supporting patients' medical decisions can be especially limited for older adults and individuals with comorbidities, as these individuals are often underrepresented or excluded from clinical trials IOM, bwjth While comparative effectiveness research CER and learning health care systems aim to fill these evidence gaps, they have limitations.
Aith should fully communicate gaps in the evidence base to their patients during the medical decision-making process.
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When evidence is sparse, patient preferences should be a particularly important consideration in the health care decision-making process. Preference-Sensitive Decisions Some decisions in cancer care are particularly sensitive to patient preferences. For example, women witj breast cancer can often choose from different courses of treatment—mastectomy versus lumpectomy followed by radiation—and expect equivalent survival outcomes Fisher et al.
Women may choose mastectomy, or the removal of the entire breast, for peace of mind or chah avoid radiation therapy, while women who choose lumpectomy followed by radiation may do so to conserve their breasts Collins et al. Women with BRCA 1 sith 2 gene mutations are at higher risk for developing breast and ovarian cancer, and may face difficult decisions about breast cancer screening, as well as consideration of prophylactic mastectomy or oophorectomy to reduce the risk of cancer 3 Jolie, ; Schwartz et al.
These decisions can have a major impact on an individual's future. Thus, patients' preferences need to inform medical decisions. Patients' preferences are also particularly important when they consider their treatment goals, such as choosing a less aggressive treatment strategy in order to maintain a high quality of life Berman, ; Epstein and Street, ; Gruman, Preferences may also change over time and eith need to revisit these throughout the cancer care continuum.
For example, women considering second line chemotherapy may prefer to ao chat with women in oxford al more active role in decision making compared to women cht are considering first line chemotherapy Grunfeld et al. This section discusses patient, clinician, and health care system challenges. Challenges for Patients A cancer diagnosis can lead to a state of crisis for an individual and his or her family because most people are not immediately equipped to understand their diagnosis or how to identify options for moving forward NCCS, a.
Because treatment and its side effects, as well as recovery and the worry about recurrence, can result in a series of crises for a patient, the crisis does not end once the shock of initial diagnosis wears off NCCS, a. The emotional repercussions of a cancer diagnosis can prevent patients from engaging in effective communication with eith clinicians about their diagnosis and treatment.
Patients can become anxious; feel vulnerable, alone, and fearful; and experience feelings of losing control when receiving a cancer oxforv.
Given these emotions, patients may be unable to retain important information regarding their treatment when speaking with their care team IOM, a. Patients' lack of assertiveness may also create communication challenges. Ideally, patients are active communicators, asking questions, assertively stating their opinions, introducing new topics of conversation, and discussing their concerns, feelings, or preferences when communicating with their clinicians Epstein and Street, Patients' lack of experience with the health care delivery system and illness, however, can impede their active participation IOM, a.
Research indicates that the average patient asks five or fewer questions during a minute doctor's visit IOM, aand an AHRQ public service announcement noted that people ask more questions when buying a cell phone or ordering a meal than they do during medical appointments. Patients may refrain from asking questions because some clinicians are not receptive or because patients fear they will be considered difficult and receive worse care Frosch et al.
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Patients who only participate in their care on a limited chwt risk poor health outcomes because they may fail to express their needs, fears, expectations, and preferences, which are important to their health care decisions. These patients may also feel dissatisfied when interacting with their clinicians Epstein and Caht,a problem exacerbated by patients' awe of their clinicians or lack of self-confidence Hoffman, Older adults may be more reluctant to question their clinicians' authority because they may think it is impolite or inappropriate to ask questions or make decisions about their own care Busari, ; Hoffman, ; IOM, a.
Research has also linked patients' level of participation in clinical encounters with their level of education, ethnicity, gender, personality, and the orientation of patient-clinician relationships shared control versus physician control Epstein and Street, Box lists a of questions woth patients with cancer can discuss with their clinicians. What is the goal oxfodr treatment?
Is it directly treating the cancer or improving my symptoms, or both? How long does the average person with this cancer live? In addition, a patient's level of health literacy and numeracy can affect patient-centered communication and shared decision making Peters et al.
More than 90 million adults in the United States have poor reading and writing skills and only 38 percent of high school seniors are proficient in reading Kutner et al. AHRQ aomen that 36 percent of the adult population, or approximately 80 million individuals, have poor health literacy, with low health literacy more prevalent in certain subgroups, including older adults, racial and ethnic minority populations, adults who spoke a language other than English prior to starting school, individuals who have not completed high school, and people living in poverty Berkman et al.
Poor health literacy can hinder patients' ability to receive health care, including their ability to communicate with their clinicians and manage chronic illnesses IOM, b. Poor health literacy is associated with increased hospitalizations, greater use of emergency room services, and lower probability of receiving preventive care Ofxord et al. Poor health literacy is oxfore concerning for older adults, as Berkman and colleagues found that lower health literacy in this group was associated with a higher risk of mortality and a worse overall health status.
Even if a patient has good health literacy, he or she may experience information overload when interacting with cjat, which can be exacerbated by clinicians' use of unfamiliar terminology or jargon Hoffman, ; IOM, a.
Patients may not retain important information if they feel overwhelmed with new terminology while grappling with all of the information clinicians are trying to impart. Moreover, patients have very different expectations regarding the amount of information they woen in order to make shared decisions about their care; while many patients want to know as much as possible, some patients do not want information Epstein and Street, ; IOM, a. Additionally, a patient's informational needs may vary substantially from those of the patient's family and caregivers.
There are a of special considerations when the cancer care team communicates with older adults who have cancer. Older patients may be less technologically savvy and may need alternate options for communicating such as large print brochures, plain language, and more repetition. Likewise, family members may have to make medical decisions for some older patients with cancer due to a patient's' cognitive status, further complicating the communication and shared decision-making processes.
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In addition, it may be more difficult for the care team to communicate treatment options to older adults, as multiple comorbid chronic diseases are more prevalent in this population, making the options for cancer treatment especially complex. Challenges for Clinicians A of factors can prevent clinicians from engaging in patient-centered communication and shared decision making, including clinicians' lack of training in communication see section below on prioritizing clinician training in communication and insensitivity to patients' informational, cultural, and emotional needs.
Clinician characteristics, such as age, gender, and training, may influence the provision of patient-centered communication Epstein and Street, ; Porter-O'Grady and Malloch, For example, some older clinicians may use authoritative communication styles rather than more collaborative approaches Busari, ; Frosch et al. Epstein and Street noted that some clinicians fail to appreciate the range of patient and family needs, explaining, in part, patients and their families' dissatisfaction with the timing and amount of information given to them by clinicians.
As mentioned ly, clinicians need to be aware of the differing informational needs of patients and adapt their communication approach accordingly Epstein and Street, ; IOM, a. A clinician's level of comfort discussing specific aspects of cancer care can also impede patient-centered communication and shared decision making.
Research shows that clinicians are often uncomfortable discussing poor prognoses, psychosocial and emotional aspects of care, and sexuality Epstein and Womsn, ; IOM, a ; Mack and Smith, Furthermore, clinicians may not recognize oford emotional cues and may be unfamiliar with resources and services deed to meet patients' psychosocial health needs Epstein and Street, ; IOM, a. Clinicians can also misjudge patient preferences.
For example, clinicians may expect women with early stage breast cancer to prefer to keep their breast, given that mastectomy and lumpectomy followed by radiation can be equally effective treatment options for some patients. A study of breast cancer patients who were provided comprehensive information about both treatment options, however, found that approximately one-third of women chose to have a mastectomy Collins et al. Other patients may prioritize quality of life rather than length of life as a primary goal Berman, ; IOM, a.
In addition, patients with cancer may assess the benefits and risks of chemotherapy differently than their clinicians, and may be more willing to undergo chemotherapy with small benefits and high risks of toxicity Matsuyama et al. Differences between patients' and clinicians' culture and language may influence clinicians' ability to engage in patient-centered communication and shared decision making.
Surbonep. Epstein and Street noted un cultural beliefs will affect communication between clinicians and witj, influence how patients and clinicians interpret their interaction, and impact communication outcomes. Given the growing diversity of the U. Inthe U. To address barriers in language, the American Cancer Society's National Cancer Information Center works with interpreter-services to provide cancer information assistance for the public in languages see Annex Clinicians' lack of time may also limit the provision of patient-centered witb chat with women in oxford al shared decision making.
Oxcord reimbursement system fails to adequately compensate clinicians for the time it takes to facilitate patient-centered care IOM, ab.
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Smith and Hillner argued that many of the responsibilities of oncologists are reimbursed poorly or not at all. Cognitive care 4 —which can include discussions with patients about prognosis and likely response to treatment, referrals to clinical trials, development of advanced medical directives, and family conferences—is not reimbursed as well as the administration of chemotherapy. Chapter 8 further discusses the perverse incentives of the current reimbursement system and new models of payment that have the potential to improve patient-centered communication and shared decision making in cancer.
Epstein and Street emphasized that patient-centered communication and shared decision making relies on more than the patient-clinician interactions; it also includes the physical and procedural characteristics of the health care system. Patients who find it difficult to navigate the health care system are likely to experience lower quality patient-clinician communication and shared decision making, which could contribute to underutilization of high-quality care, overuse of care that is unlikely to improve patient outcomes, and higher costs.
Fragmentation of the cancer care xoford system also contributes to communication problems between patients and their care teams. Patients with cancer may need to coordinate care among multiple clinicians on their cancer care team and other care teams. Jessie Gruman, a four-time cancer survivor, pointed out that in 1 womeh, eight physicians cared for her, and yet only once did two of those physicians communicate directly with each other; she was primarily responsible for sharing her medical information among the different clinicians Gruman, It can be especially difficult for care team members to share information and communicate effectively with patients if the care team members' electronic health records EHRs are not interoperable see Chapter 7 on additional information technology challenges.
With system problems such as these, it can be unclear to patients and care teams who is responsible for each aspect of care and who needs to be contacted to address a treatment complication IOM, a.
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New models of care and reimbursement, such as able care organizations ACOs or oncology patient-centered medical homes, may address some of these system challenges see Chapter 8. Making More Comprehensive Information Available The availability of easily understood, accurate information on cancer prognosis, treatment benefits and harms, palliative care, psychosocial support, and likelihood of treatment response can improve patient-centered communication and shared decision making.
Komen Foundation see Table for examples of patient resources. In addition, there are a of other websites that may contain inaccurate or outdated information. Thus, finding accurate, useful cancer information online can be a major challenge for patients and their families Chan et al. Information that is readily available on cancer often does not answer all of the questions that are important to patients.