Delivering High-Quality Cancer Care Charting a New Course for a System in Crisis (2013) / Chapter Skim
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3 Patient-Centered Communication and Shared Decision Making
3 Patient-Centered Communication and Shared Decision Making
Pages 91-152
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From page 91... ...
. Patient-centered care includes fostering good communication between patients and their cancer care team; developing and disseminating evidence-based information to inform patients, caregivers, and the cancer care team about treatment options; and practicing shared decision making.
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From page 92... ...
In addition, clinicians often lack training in communication, leading to difficulties in recognizing and responding to patients' informational and emotional needs. A lack of understandable and easily available information on prognosis, treatment options, likelihood of treatment responses, palliative care, psychosocial support, and the costs of cancer care contribute to communication problems, which are exacerbated in patients with advanced cancer.1 This chapter describes the benefits, challenges, and characteristics of patient-centered communication and shared decision making; presents approaches and tools to facilitate patient-centered communication and shared decision making; and discusses the importance of advance care planning, the provision of palliative care and psychosocial support across the cancer continuum, and timely referral to hospice when patients near the end of life.
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From page 93... ...
These components require that informed, activated, and participatory patients and family members interact with a patient-centered care team that has effective communication skills and is supported by an accessible, well-organized, and responsive health care system (see Figure 3-1) (Epstein and Street, 2007)
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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
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Enabling Patient The cancer care team should provide individuals with Self-Management resources to be proactive in their care. Examples of self management tools and enablers include cancer care plans, survivorship care plans, and patient navigators who assist patients to overcome health care system barriers and facilitate timely access to health care services.
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. Promoting patient self-management can facilitate shared decision making and improve cancer care.
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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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. Challenges to Patient-Centered Communication and Shared Decision Making in Cancer There are a number of challenges to patient-centered communication and shared decision making.
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In addition, a patient's level of health literacy and numeracy can affect patient-centered communication and shared decision making (Peters et al., 2007)
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• Will I feel better or worse? • an I receive palliative care focused on maintaining the quality of my and C my family's life during my cancer treatment?
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o articipate in advance care planning and decide on my advance P directives? o Choose a health care proxy who can speak for me if I am unable?
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From page 102... ...
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 number of factors can prevent clinicians from engaging in patientcentered communication and shared decision making, including clinicians' lack of training in communication (see section below on prioritizing clinician training in communication)
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From page 103... ...
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 onethird of women chose to have a mastectomy (Collins et al., 2009)
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Fragmentation of the cancer care delivery 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.
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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. A number of trusted organizations have developed print, electronic, and social resources to inform patients and their families about cancer, such as the NCI, the American Cancer Society, the Centers for Disease Control and Prevention, the Mayo Clinic, the National Coalition for Cancer Survivorship, American Society of Clinical Oncology, LIVESTRONG, and the Susan G
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From page 106... ...
information about treatment options, clinical trial Advanced Cancer Care participation, palliative care and hospice care, the role Planning Booklet of family in the decision-making process, and end of-life planning (e.g., creating an advanced directive, developing a living will, and how to find religious or spiritual support if desired)
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It creates a variety of products, ranging from research summaries to decision aids and other materials, for use by patients, clinicians, and policy makers. It also runs a conference series to discuss state-of-the-art in communication and medical decision making.
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. PCORI has also prioritized communication and dissemination of research results, including comparing approaches to disseminate CER, engaging people to ask for information from CER, and supporting shared decision making (PCORI, 2012)
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. The Patient Protection and Affordable Care Act (ACA)
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Improving Shared Decision Making Using Decision Aids One of the important functions of communication in cancer care is ensuring that patients make decisions that are consistent with their needs, preferences, and values. Clinicians have an important role in improving
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The University of California, San Francisco, and the DartmouthHitchcock Medical Center, for example, offer decision support programs for patients with breast cancer (see Box 3-2) , and in 2007, Washington state became the first state to enact legislation promoting the use of shared decision making and decision aids in practice (Armstron and Arterburn, 2013)
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. In cancer care, a systematic review of 23 randomized clinical trials of cancer decision aids found that decision aids improved patient participation in decision making and resulted in higher-quality medical decisions (Stacey et al., 2008)
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Although this program would be responsible for developing, certifying, and disseminating patient decision aids, it has not yet been funded (Informed Medical Decisions Foundation, 2013)
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(2012) noted that medical schools teach generic communication skills, but the cancer setting requires specialty communication skills training, including breaking bad news, discussing prognosis and risk, using shared decision making to make care plans, responding to emotions, dealing with recurrence, changing treatment goals, running a family meeting, and discussing death and dying.
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Compared to other types of clinician training that test knowledge to assess improvement, it is more difficult to measure improvements in communication skills. The diversity of settings in which communication skills training occurs (i.e., medical and nursing schools, residency programs, and clinical practice)
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Communicating Information and Preparing Cancer Care Plans To achieve high-quality cancer care, the cancer care team needs to effectively communicate and engage in shared decision making with patients to ensure that patients understand their disease, know their care options, and develop a plan for care. The committee recommends that the cancer care team provide patients and their families with understandable information on cancer prognosis, treatment benefits and harms, palliative care, psychosocial support, and estimates of the total and out-of-pocket costs of cancer care.
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. Thus, the committee recommends that the cancer care team collaborate with their patients to develop a care plan that reflects their patients' needs, values, and preferences, and considers palliative care needs and psychosocial support across the cancer care continuum.
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preferences of patients with advanced cancer found that patients who watched the video had improved knowledge of CPR and more confidence in their health care decisions, compared to patients who did not watch the video. SOURCES: CDC, 2013; El-Jawahri et al., 2010; Gigerenzer and Edwards, 2003; IOM, 2009a, 2011b; NCI, 2012; Peters et al., 2007; Volandes et al., 2013.
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assessment of the patient and on an inventory of resources and supports available to the patient." The need to consider multiple treatment modalities, facilitate shared decision making, and coordinate care in the cancer treatment setting suggests that care plans may prove especially beneficial there. Documenting information in a patient's care plan is insufficient to ensure patient-centered communication and shared decision making.
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Box 3-3 lists examples of typical features of cancer care plans, and the section below elaborates on a number of critical fea BOX 3-3 Information in a Cancer Care Plan Utilizing patient-centered communication and shared decision making, the cancer care team should collaborate with patients to develop a cancer care plan. Examples of components in a patient-specific cancer care plan include • Patient information (e.g., name, date of birth, medication list, and allergies)
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From page 121... ...
Despite the importance of palliative care in improving the quality of patients' lives, clinicians often fail to address patients' palliative care needs in their care plans. Clinicians often equate palliative care with end-of-life care and consider it an alternative, rather than a complement, to curative or life-extending treatment (see Box 3-4)
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4. Treatment Goals:_____ Makes explicit what the cancer care team List cure, long- or short-term control, can and cannot do; for curable disease, this pain relief, hospice care reinforces the patient's goal, and that cure is possible.
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. Although the general public has little knowledge about palliative care, clini cians often conflate palliative care with hospice care (Center to Advance Palliative Care, 2011; Meier, 2012)
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Addressing palliative care needs is also critical for high-quality end-of-life care. This is discussed in greater depth in the sections below on Emphasizing Palliative Care and Psychosocial Support and Providing Timely Referred Hospice Care.
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There is a growing recognition of the role of care teams in discussing cost with their patients as a critical aspect of patient-centered communication and shared decision making (Moriates, et al., 2013)
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This table includes only formal sources of psychosocial support -- those that must be secured through the assistance of an organization or agency that in some way enables the provision of needed services (sometimes at no cost or through volunteers)
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Advance care planning. Advance care planning is defined by the National Hospice and Palliative Care Organization as "making decisions about the care you would want to receive if you happen to become unable to speak
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Advancing New Payment Models The committee recommends that CMS and other payers design, implement, and evaluate innovative payment models that incentivize the cancer care team to discuss information on cancer prognosis, treatment benefits and harms, palliative care, psychosocial support, and estimates of the total and out-of-pocket costs of cancer care with their patients and document their discussions in each patient's care plan. As mentioned previously, the current fee-for-service reimbursement system does not compensate the cancer care team well for providing cognitive care to their patients, such as having conversations about prognosis, likelihood of treatment responses, and support services for patients.
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This section describes challenges and opportunities to improve cancer care for individuals approaching the end of life, including the importance of palliative care, psychosocial support, advance care planning, end-of-life communication, and timely referral to hospice. A related activity is an IOM consensus committee on transforming end-of-life care.
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From page 130... ...
assert that failure to discuss and document patient preferences for end-of-life care is tantamount to a medical error. Thus, the committee recommends that in the setting of advanced cancer, the cancer care team should revisit and implement their patients' advance care plans to provide patients with end-of-life care consistent with their needs, values, and preferences (Recommendation 2)
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. The most evidence-based and widespread model of advance care planning is Respecting Choices®, which was developed by health care organizations in La Crosse, Wisconsin.
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The committee emphasized a number of interpersonal skills and attitudes that clinicians should develop, including listening to patients, families, and other members of the care team; conveying difficult news; understanding and managing patient and family responses to illness; providing information and guidance on prognosis and care options; practicing shared decision making and conflict resolution; recognizing and understanding the clinician's own feelings and anxieties about dying and death; and demonstrating empathy and sensitivity to religious, ethnic, and other personal characteristics.
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From page 133... ...
In this model, the cancer care team would provide primary palliative care, including basic management of pain, symptoms, depression, and anxiety, as well as basic discussions about prognosis, goals of treatment, suffering, and advance directives. If patients require more complex palliative care needs, the cancer care team would refer patients to palliative care specialists, who would manage refractory pain, more complex psychosocial needs, and conflict resolution regarding the goals or methods of treatment (Quill and Abernethy, 2013)
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. Because access to hospice care improves the quality of cancer care, the committee recommends that the cancer care team provide cancer patients with timely referral to hospice care for end-of-life care.
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. The committee endorses this concept and recommends that CMS and other payers design, implement, and evaluate innovative payment models that incentivize the cancer care team to counsel their patients about advance care planning.
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Program care for individuals with advanced disease that provides home-based transitional and palliative care services. The AIM program provides patients and families with counseling with the goal of increasing hospice use and decreasing the use of unwanted acute care.
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Recommendation 1: Engaged Patients Goal: The cancer care team should provide patients and their fami lies with understandable information on cancer prognosis, treat ment benefits and harms, palliative care, psychosocial support, and estimates of the total and out-of-pocket costs of cancer care. To accomplish this: • he National Cancer Institute, the Centers for Medicare & Med T icaid Services, the Patient-Centered Outcomes Research Insti tute, as well as patient advocacy organizations, professional organizations, and other public and private stakeholders should improve the development of this information and decision aids and make them available through print, electronic, and social media.
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• he cancer care team should revisit and implement their pa T tients' advance care plans. • he cancer care team should place a primary emphasis on pro T viding cancer patients with palliative care, psychosocial sup port, and timely referral to hospice care for end-of-life care.
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2013a. Advance care planning, preferences for care at the end of life.
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2007. Efficacy of communication skills training for giv ing bad news and discussing transitions to palliative care.
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. Center to Advance Palliative Care.
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2010. The impact of advance care planning on end of life care in elderly patients: Randomized controlled trial.
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2013. Early integration of palliative care services with standard oncology care for patients with advanced cancer.
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2010. A comparative, retrospective, ob servational study of the prevalence, availability, and specificity of advance care plans in a county that implemented an advance care planning microsystem.
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2013. Concepts and definitions for "supportive care," "best supportive care," "palliative care," and "hospice care" in the published literature, dictionaries, and textbooks.
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2013. Group Health's participation in a shared decision-making demonstration yielded lessons, such as role of culture change.
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2012. Learning from Amy Berman: Barriers to palliative care and how to overcome them.
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2008. Interval between first palliative care consult and death in patients diagnosed with advanced cancer at a comprehensive cancer center.
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2013. Generalist plus specialist palliative care -- creating a more sustainable model.
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2012. American Society of Clinical Oncology provisional clinical opinion: The integration of palliative care into standard oncology care.
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2011. Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer: Results of a randomized study of early palliative care.
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2013. Multiple locations of advance care planning documentation in an electronic health record: Are they easy to find?
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