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- 1. Lesson 3: Shared Decision- Making Module 4: The Basics of Patient Navigation Oncology Patient Navigator Training: The Fundamentals
- 2. Acknowledgments This work was supported by Cooperative Agreement #1U38DP004972-02 from the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention. Portions of this lesson have been adapted with permission from the Patient Navigator Training Collaborative of the Colorado School of Public Health.
- 3. Competencies This lesson covers the following Core Competencies for Patient Navigators: 1.4 Empower patients to communicate their preferences and priorities for treatment to their health care team; facilitate shared decision making in the patient’s health care. 1.5 Empower patients to participate in their wellness by providing self- management and health promotion resources and referrals. 1.6 Follow up with patients to support adherence to agreed-upon treatment plan through continued non-clinical barrier assessment and referrals to supportive resources in collaboration with the clinical team.
- 4. Learning Objectives After completing this lesson, you will be able to: • Encourage active participation by the patient in decision-making and explain choices or rights to the patient in a patient-centered manner • Assess patient desire and capacity to be involved and responsible in the decision- making process • Determine patient preferences and priorities for treatment • Identify strategies to assist patients in discussing preferences and priorities with clinician • Support the patient in the decision-making process in alignment with desired level of engagement • Describe a treatment plan • Assess barriers to patient adherence to the plan • Develop a plan with the patient for addressing adherence challenges • Identify self-management and health promotion resources
- 5. Shared Decision-Making In this section of the lesson, we will define shared decision-making and discuss ways to assess patient’s willingness and ability to be involved in the treatment planning process.
- 6. What is Shared Decision-Making? “A process in which patients are involved as active partners with the clinician in clarifying acceptable medical options and in choosing a preferred course of clinical care.” Why shared decision-making? Improved Outcomes Patient satisfaction Patient knowledge Patient adherence to treatment Sources: Sheridan et al. 2004; Fraenkel et al. 2007
- 7. Patient knowledge Physician encouragem ent Belief in right/ responsibili ty to participate Awareness of choice Time with physician Active participation in care Elements of Shared Decision-Making Source: Fraenkel et al. 2007
- 8. Encouraging Patient Participation in Shared Decision-Making Encourage the patient and build a partnership Set the agenda together Practice active listening Ensure the patient understands information Display warmth and empathy verbally and non-verbally Source: Epstein et al. 2007
- 9. Discussing Treatment Preferences and Priorities • Understand what patients need to make informed decisions • Coordinate with clinicians • Use decision aids and tailored information • Communicate effectively • Return to the 5As (Ask, Assess, Advise, Assist, Arrange) Sources: Sheridan et al. 2004; Robinson et al. 2006
- 10. Discussing Treatment Preferences and Priorities • Do you have any religious beliefs? If so, how do those impact your care? What about spiritual beliefs? • How do you like to learn new information? (Give examples of visual, auditory and kinetic learning styles) • How much information would you like to have about your particular disease or treatment? • What is the best way to communicate with you? • Is there anyone else you would like to be involved in your care, like a friend, family member or religious/spiritual advisor? • What do you do to take care of yourself? How can our team support you in taking care of yourself?
- 11. Assessing Desire for Decision- Making Desire for Decision- Making Responsibility Culture Personal Preference Sources: Beagley. 2011; Coulter et al. 2008
- 12. Checkpoint Which of the following impacts a patient’s capacity for shared decision-making? a) Health literacy b) Language c) Physical condition and environment d) Learning style e) All of the above
- 13. Assessing Capacity for Decision- Making Capacity for Decision- making Responsibility Health literacy Language Physical condition and environment Learning style Sources: U.S. Department of Health and Human Services. n.d.; Nielsen-Bohlman et al. 2004; Beagley. 2011; Kutner et al. 2006
- 14. Assessing Health Literacy Health Literacy Checklist: Incomplete or poorly completed paperwork Poor medication adherence Missed appointments Nervousness, confusion, frustration or indifference in complex learning situations Points to text when reading Makes excuses not to read on the spot Clues that Your Patient May Have Low Health Literacy “I forgot my glasses today, could you read that for me?” Source: Cornett. 2009
- 15. Plain Language • Organized with the most important information presented first • Divided into chunks to make more complex information easier to understand • Spoken or written using simple words and provides definitions of any technical terms • Said or written in active voice Source: U.S. Department of Health and Human Services. n.d.
- 16. Limited English Proficiency (LEP) • Struggles with communicating in English • Interpreter services are required by law and policy guidance: - Title VI of the Civil Rights Act of 1964 - HHS Policy Guidance on the Prohibition Against National Origin Discrimination as it Affects Persons With Limited English Proficiency - DOJ Guidance to Federal Financial Assistance Recipients Regarding Title VI Prohibition Against National Origin Discrimination Affecting Limited English Proficient Persons - Culturally and Linguistically Appropriate Services Standards for Health Care - Executive Order 13166 - Strategic Plan to Improve Access to HHS Programs and Activities by Limited English Proficiency Persons Sources: U.S. Department of Health and Human Services. n.d.; National Council on Interpreting in Health Care. n.d
- 17. What is your patient’s learning style? • Visual (pictures, charts, videos) • Auditory (verbal information) • Read or write (written words) • Kinesthetic (hands-on learning) Sources: Beagley. 2011; Inott et al. 2011; Fleming et al. 1992
- 18. Supporting Patients in the Decision- Making Process Provide information in a user-friendly way Provide verbal support of patient’s ability to make decisions Understand patients’ decisions and preferences may change Facilitate open dialogue between the patient and the physician that identifies goals that are important to patients Provide ongoing support and encouragement Refer to community-based organizations and encourage patients to use them Sources: Institute of Medicine. 2006; McCorkle et al. 2011
- 19. Treatment Plans and Self-Management This next section of the lesson explores treatment plan adherence, or whether patients follow the plan. We will identify ways that patient navigators can help patients to follow their treatment plans as well as support their patient in self- management of their condition.
- 20. Treatment Plan Source: Balogh et al. 2011 Treatment Plan: A document that describes the path of cancer care, and can be given to the patient, family or other members of the care team in order to inform everyone about the path of care and who is responsible for each portion of that care • Specific tissue diagnosis and stage, including relevant biomarkers • Initial treatment plan and proposed duration • Expected common and rare toxicities during treatment and their management • Expected long-term effects of treatment • Who will take responsibility for specific aspects of treatment and • their side effects • Psychosocial and supportive care plans • Vocational, disability, or financial concerns and their management • Advance care directives and preferences - Care coordination - Addressing barriers
- 21. • Fail to fill prescriptions due to - Feeling that the medication wasn’t necessary - Unable to afford the medication - Not wanting to take the medication - Not believing the medication would be effective • Not wanting to change their behavior • Wanting to avoid the side effects of treatment • Disbelief about the severity of their condition • Feeling too busy or too stressed to follow the treatment plan • Feeling incapable of changing their behavior • Uninvolved in treatment plan creation Barriers to Treatment Plan Adherence Sources: Lowes. 1998; Butterworth. 2008
- 22. Addressing Challenges to Adhering to the Treatment Plan Agree on what the patient’s challenge is to treatment adherence. Determine the appropriate goal to overcome the challenge. Talk to the patient about their options. Help the patient choose the option that makes the most sense to them. Have the patient summarize what was just discussed. Follow up with questions. Be nonjudgmental when following up on treatment plan adherence. Source: Lowes, 1998
- 23. Self-Management Emotional and mental health Self-confidence Pain Nausea Fatigue Hopelessness Depression Increased/ Improved Decreased Source: McCorkle et al. 2011
- 24. Self-Management Taking the actions necessary to live well and manage chronic conditions Typical Self- Management Tasks Tracking symptoms Determining what to do when symptoms cause problems Adopting healthy behaviors Taking medications as prescribed Scheduling doctors’ appointment s and lab visits Sources: Adams et al. 2004; Pearson et al. 2007
- 25. Self-Management and Health Promotion Resources Health care team Hospital/ facility resources Community resources Websites
- 26. Conclusion In this lesson you learned to: • Encourage active participation by the patient in decision-making and explain choices or rights to the patient in a patient-centered manner • Assess patient desire and capacity to be involved and responsible in the decision-making process • Determine patient preferences and priorities for treatment • Identify strategies to assist patients in discussing preferences and priorities with clinician • Support the patient in the decision-making process in alignment with desired level of engagement • Describe a treatment plan • Assess barriers to patient adherence to the plan • Develop a plan with the patient for addressing adherence challenges • Identify self-management and health promotion resources
- 27. References • Adams, K. G., Greiner, A. C., & Corrigan, J. M. (Eds.). (2004). Committee on the crossing the quality chasm: Next steps toward a new health care system. The 1st annual crossing the quality chasm summit: A focus on communities. Washington(DC): National Academies Press. ISBN: 0‐309‐ 09303‐1. • Balogh, E. P., Ganz, P. A., Murphy, S. B., Nass, S. J., Ferrell, B. R., & Stovall, E. (2011). Patient‐centered cancer treatment planning: Improving the quality of oncology care. Summary of an Institute of Medicine workshop. Oncologist, 16(12):1800‐5. doi: 10.1634/theoncologist.2011‐0252. • Beagley, L. (2011). Educating patients: Understanding barriers, learning styles, and teaching techniques. Journal of PeriAnesthesia Nursing, 26(5):331‐337. doi: 10.1016/j.jopan.2011.06.002. • Butterworth, S. W. (2008). Influencing patient adherence to treatment guidelines. Journal of Managed Care Specialty Pharmacy, 14(6 Suppl B):21‐24. doi: 10.18553/jmcp.2008.14.S6-B.21 • Cornett, S. (2009). Assessing and addressing health literacy. The Online Journal of Issues in Nursing, 14(3):Manuscript 2. doi: 10.3912/OJIN.Vol14No03Man02. • Coulter, A., Parsons, S., & Askham, J. (2008). Where are the patients in decision‐making about their own care. http://www.who.int/management/general/decisionmaking/WhereArePatientsinDecisionMakin g.pdf. • Epstein, R. M., & Street, R. L. Jr. (2007). Patient‐centered communication in cancer care: Promoting healing and reducing suffering. National Cancer Institute, NIH Publication No. 07‐6225. Bethesda, MD. • Fleming, N. D., & Mills, C. (1992). Not another inventory, rather a catalyst for reflection. To Improve the Academy, 11:137‐155.
- 28. References (Cont.) • Fraenkel, L., & McGraw, S. (2007). What are the essential elements to enable patient participation in medical decision making. Journal of General Internal Medicine, 22(5):614–619. doi: 10.1007/s11606‐007‐ 0149‐9. • Inott, T., & Kennedy, B. B. (2011). Assessing learning styles: Practical tips for patient education. Nursing Clinics of Northern America, 46(3):313‐20, vi. doi: 10.1016/j.cnur.2011.05.006. • Institute of Medicine Committee on Health Literacy. Board on Neuroscience and Behavioral Health. Nielsen‐Bohlman L., Panzer A., King, D. A. (Eds). (2004). Health literacy: A prescription to end confusion. Washington (DC): National Academies Press (US). ISBN: 0‐309‐09117‐9. Retrieved from: http://www.nap.edu/catalog.php?record_id=10883. • Kutner, M., Greenberg, E., Jin, Y., & Paulsen C. (2006). The health literacy of America’s adults: Results from the 2003 national assessment of adult literacy. (NCES 2006‐483). U.S. Department of Education. Washington, D.C. Retrieved from: http://nces.ed.gov/pubsearch/pubsinfo.asp?pubid=2006483 • Lowes, R. (1998). Patient‐centered care for better patient adherence. Family Practice Management, 5(3):46‐ 47, 51‐54, 57. Retrieved April 15, 2021, from https://pubmed.ncbi.nlm.nih.gov/10178365/. • McCorkle, R., Ercolano, E., Lazenby, M., Schulman-Green, D., Schilling, L. S., Lorig, K., & Wagner, E. H. (2011). Self‐management: Enabling and empowering patients living with cancer as a chronic illness. CA Cancer Journal of Clinicians, 61(1):50‐62. doi: 10.3322/caac.20093. • National Council on Interpreting in Health care. (2010). What’s in a word? A guide to understanding interpreting and translation in health care. http://www.ncihc.org/assets/documents/publications/Whats_in_a_Word_Guide.pdf.
- 29. References (Cont.) • Pearson, M. L., Mattke, S., Shaw, R., Ridgely, M. S., & Wiseman, S. H. (2007). Patient self‐management support programs: An evaluation. Final Contract Report (Prepared by RAND Health under Contract No. 282‐00‐0005). Rockville, MD: Agency for Healthcare Research and Quality. AHRQ Publication No. 08‐0011 • Robinson, T. E., White, G. L. Jr., & Houchins, J. C. (2006). Improving communication with older patients: Tips from the literature. Family Practice Management, 13(8):73‐78. Retrieved April 15, 2021, from https://pubmed.ncbi.nlm.nih.gov/17022433/. • Sheridan, S. L., Harris, R. P., & Woolf, S. H. (2004). Shared Decision‐Making Workgroup of the U.S. Preventive Services Task Force. Shared decision making about screening and chemoprevention: A suggested approach from the U.S. preventative task force. American Journal of Preventive Medicine, 26(1):56‐66. doi: 10.1016/j.amepre.2003.09.011. • Supporting Patients' Decision‐Making Abilities and Preferences. (2006). In Institute of Medicine (US) Committee on Crossing the Quality Chasm: Adaptation to Mental Health and Addictive Disorders. Improving the quality of health care for mental and substance‐use conditions: Quality chasm series. Washington (DC): National Academies Press (US). Retrieved from: http://www.ncbi.nlm.nih.gov/books/NBK19831/. • U.S. Department of Health and Human Services. (n.d.). Health literacy basics. http://www.health.gov/communication/literacy/quickguide/factsbasic.htm. • U.S. Department of Health and Human Services. (n.d.). Improve the usability of health information. http://www.health.gov/communication/literacy/quickguide/healthinfo.htm.
- 30. Thank you! Follow us on Twitter: @GWCancer www.gwcancercenter.org Sign-up for the GW Cancer Center’s Patient Navigation and Survivorship E-Newsletter: bit.ly/PNSurvEnews Sign-up for the GW Cancer Center’s Cancer Control Technical Assistance E-Newsletter: bit.ly/TAPenews
Editor's Notes
- We would like to acknowledge the Centers for Disease Control and Prevention for supporting this work. We would also like to thank the Patient Navigator Training Collaborative of the Colorado School of Public Health for generously sharing materials from their in-person training, which we have adapted for this online training.
- This lesson covers the following Core Competencies for Patient Navigators: 1.4 Empower patients to communicate their preferences and priorities for treatment to their health care team; facilitate shared decision making in the patient’s health care. 1.5 Empower patients to participate in their wellness by providing self-management and health promotion resources and referrals. 1.6 Follow up with patients to support adherence to agreed-upon treatment plan through continued non-clinical barrier assessment and referrals to supportive resources in collaboration with the clinical team.
- After completing this lesson, you will be able to: Encourage active participation by the patient in decision-making and explain choices or rights to the patient in a patient-centered manner Assess patient desire and capacity to be involved and responsible in the decision-making process Determine patient preferences and priorities for treatment Identify strategies to assist patients in discussing preferences and priorities with clinician Support the patient in the decision-making process in alignment with desired level of engagement Describe a treatment plan Assess barriers to patient adherence to the plan Develop a plan with the patient for addressing adherence challenges Identify self-management and health promotion resources
- In this section of the lesson, we will define shared decision-making and discuss ways to assess patient’s willingness and ability to be involved in the treatment planning process.
- Shared decision-making is defined by the United States Preventative Services Task Force as “a process in which patients are involved as active partners with the clinician in clarifying acceptable medical options and in choosing a preferred course of clinical care.” Patient participation in decision-making can improve patient knowledge, adherence to treatment and outcomes. Even among patients who do not wish to actively participate in decision-making, having an interactive discussion with their provider improves patient satisfaction with care.
- Certain elements must be in place to encourage patients’ active participation in care. These include: Patient knowledge- Being informed is critical to being an active participant in medical decision-making. Physician encouragement can also lead to patients’ active involvement in their care. Patients who believe in their right and responsibility to participate in medical decision-making are more likely to be involved in their care. Patients who have an awareness of their choices and options are more likely to engage in shared decision-making. Lastly, spending time with the physician discussing treatment concerns is necessary for patients’ active participation. Many patients have trouble with the amount and complexity of information they get, so it is critical for patient navigators to support clear, open dialogue between the patient and provider that is tailored to each patient’s needs.
- Patient navigators can encourage patient participation in shared decision-making using the following general patient-centered strategies: Encourage the patient to become involved in their care and build a partnership with the patient. Work to set the agenda together about what concerns need to be addressed. Practice active listening during meetings with patients. Ensure the patient understands any information being shared with them. And Display warmth and empathy verbally and non-verbally when communicating with patients.
- Patient navigators can use different approaches to help patients in discussing treatment preferences and priorities. The goal is to make sure patients understand and have their questions answered. The patient navigator facilitates this process rather than answering questions or making recommendations. First, it is important to understand what patients need to have in place to make informed decisions. Patients need to be educated on the seriousness of cancer and the risks and benefits to treatment options, as well as have an understanding of their own values. Patients need to be assessed so that these are in place prior to making decisions. Patient navigators should coordinate with clinicians to help support decision-making. Clinicians should focus on answering questions and negotiating final treatment options. Patient navigators can help patients with preparing for treatment discussions with providers by offering support and education. Using decision aids like pamphlets, web-based tools or charts, or creating communications tailored to the specific needs of the patient may also be helpful for the patient to remember information and weigh options. These materials may be provided for patients during clinical visits, and patient navigators can work through the materials with patients to see what patients feel they understand and to come up with questions to ask clinicians if any of the information does not make sense. Patient navigators should also use communication strategies such as avoiding distractions, maintaining eye contact, using short, simple words and frequently summarizing the most important points. Finally, although patient navigators will not be making treatment decisions with patients, they can partner with the patient to create a plan to make their decision. Using the five As discussed earlier in this module will be a useful tool for this process. The navigator can ask the patient questions to understand what challenges they are facing and their perceptions. Then the navigator can assess the patient’s needs, goals and abilities. With that assessment, the navigator can advise the patient on developing a plan and assist patients in removing barriers and implementing the plan. Finally, the navigator can arrange to follow up with the patient.
- Here are some questions a navigator might ask to start a conversation with a patient about preferences. These questions can help you better understand the patient’s needs and advocate on their behalf if necessary. Do you have any religious beliefs? If so, how do those impact your care? What about spiritual beliefs? How do you like to learn new information? (Give examples of visual, auditory and kinetic learning styles) How much information would you like to have about your particular disease or treatment? What is the best way to communicate with you? Is there anyone else you would like to be involved in your care, like a friend, family member or religious/spiritual advisor? What do you do to take care of yourself? How can our team support you in taking care of yourself?
- The most common source of patient dissatisfaction is feeling uninformed and uninvolved in care and treatment decisions. Assessing the capacity and desire of a patient to participate in their health management involves many factors. Considerations in assessing desire for shared decision-making should include: Culture Patient navigators must be culturally sensitive in working with patients and their families. They should also recognize and confront cultural biases, generalizations and values that may differ from the patients they are working with. Patient navigators should take into consideration the impact that culture may have on shared decision-making. For example, some patients may not want to be involved in shared decision-making as their culture dictates that the provider is always correct. We will talk more about this in module 5. Personal preference Not all patients want to engage in decision-making, while some patients want to be involved in every decision. The navigator should work with the patient to clarify his or her preferences, keeping in mind factors that could impact desire and ability to participate, as well as changes in preferences and priorities over time.
- Which of the following impacts a patient’s capacity for shared decision-making? Health literacy Language Physical condition and environment Learning style All of the above All of these impact a patient’s capacity for shared decision-making.
- Considerations in assessing capacity for shared decision-making should include: Health literacy. Health literacy is different from literacy. A person who is illiterate is someone who can not read or write. People with low literacy are not illiterate, but have difficulties with reading, writing, speaking or computing to solve problems. When working with patients who have low literacy, think about how you can tailor your approach to improve their understanding. For example, if someone has difficulty reading, it might be better to show them a video rather than give them a book to read. You could also use different words that are easier for people with low literacy to understand or break down thoughts into smaller concepts. Health literacy is related in that it depends on a person’s literacy skills in understanding health-related topics. Health literacy is the ability to understand basic health information to participate in and make decisions about one’s health care. Low health literacy has been linked to delayed diagnosis, poor disease management skills, higher health care costs and overall poor health outcomes. Tools and resources are available to assist navigators in assessing and determining health literacy and identifying populations that are at greater risk for low health literacy. A list of these will be provided in the resources section of the learning management system. Language. When working with patients who speak a language different from that of the patient navigator and/or medical team, every attempt must be made to provide a qualified translator. Family members may not be ideal as they may not have the health literacy needed to correctly translate a clinical discussion. Medical translation phone lines are available when an agency does not have an interpreter on site that speaks a particular language. Ask your supervisor for procedures at your institution. Physical condition and environment. Physical and environmental conditions can impact a patient’s ability to understand and be receptive to health information. Pain, limited mobility, poor lighting, room temperature and noise level can not only be distracting to a patient but may add to anxiety, fear or other limitations to being engaged in his or her health care. Learning style. Assessing a patient’s learning style is critical to understanding how best to communicate information to the patient and ensure comprehension. Patient navigators may use strategies from more than one learning style to accommodate a patient’s needs and accurately and effectively communicate information. For example, for a patient requiring transportation assistance, a patient navigator could verbally explain their options to them and give them a handout providing the same information on available programs.
- Here is a checklist to use to help you to find clues that your patient may have low health literacy. It is also provided in the resources section of the learning management system. Patients with low health literacy may Submit incomplete or poorly completed paperwork Demonstrate poor medication adherence Frequently miss appointments Show nervousness, confusion, frustration or indifference in complex learning situations Point to text when reading it Make excuses not to read on the spot, saying things like “I forgot my glasses today, could you read that for me?” or “I’m too tired right now, I’ll read this at home.” If the patient has low health literacy, you may need to: Spend more time making sure they understand Adapt your interaction style to better fit their ability, for example you could pause more often to ask the patient to tell you what they heard Select more appropriate resources that are tailored to their ability
- Using plain language as a strategy can be effective in addressing low health literacy. Communicating in plain language means that the individual will understand what they hear or read the first time. Plain language is Organized with the most important information presented first Divided into chunks to make more complex information easier to understand Spoken or written using simple words and provides definitions of any technical terms Said or written in active voice
- Low or limited literacy is not the same as limited English proficiency (LEP). Individuals with LEP may be literate in their primary language but struggle to communicate in English. In these instances, translation services are necessary. Interpreter services are required by law and policy guidance. These include: Title VI of the Civil Rights Act of 1964 HHS Policy Guidance on the Prohibition Against National Origin Discrimination as it Affects Persons With Limited English Proficiency DOJ Guidance to Federal Financial Assistance Recipients Regarding Title VI Prohibition Against National Origin Discrimination Affecting Limited English Proficient Persons Culturally and Linguistically Appropriate Services Standards for Health Care (discussed in module 5 lesson 3). Executive Order 13166 Strategic Plan to Improve Access to HHS Programs and Activities by Limited English Proficiency Persons
- Patient navigators can assess their patient’s learning style to determine the best method for sharing information. The Fleming and Mills VARK learning theory describes the styles of learning: Visual, Auditory, Read or Write and Kinesthetic, as they relate to patient education. Visual: Visual learners prefer to see information. Pictures, charts, graphs and video are preferable to verbal information. Visual material should be well organized, interesting and easy to read. Auditory: Auditory learners learn best by listening. Verbal information should be rephrased and questions should be communicated in different ways to best communicate information. Auditory learners do well with sounds, music and speech; changing the pitch, speed and volume of speech helps keep the information interesting. Read or Write: Read or write learners may appear to be similar to visual learners, but display a specific preference for words. Presenting health information in written format and allowing the patient time to read it would be most beneficial for learners of this style. Kinesthetic: Kinesthetic learners prefer hands-on learning with breaks to move around. Patient navigators should encourage these learners to take notes and demonstrate information whenever possible. It is important to remember that learning styles are not weaknesses but just personal preferences for information. Your patient may have more than one learning style, in which case presenting information in more than one format may be most effective. The VARK learning theories and a questionnaire to help you assess your patient’s learning style can be accessed online. Information is provided in the resources section of the learning management system.
- Patients are most empowered when they have the skills, information and resources to manage their chronic illness. Patient navigators can support patients by: Providing information in a user-friendly way. Providing verbal support of the patient’s ability to make decisions. Understanding that the patients’ decisions and preferences may change. Supporting open dialogue between the patient and the physician that identifies goals that are important to the patient. This helps the physician and patient develop a realistic plan to achieve those goals, including aspects the patient can manage. Providing patients with ongoing support and encouragement. And Referring patients to community-based organizations and encouraging patients to use them to manage needs such as transportation, financial assistance or peer support groups.
- After your patient has expressed their preferences for shared decision-making and worked with his or her provider to discuss treatment options, they will be given a treatment plan. This next section of the lesson explores treatment plan adherence, or whether patients follow the plan. We will identify ways that patient navigators can help patients to follow their treatment plans as well as support their patient in self-management of their condition.
- The complexity of cancer and the wide variety of treatment options available make it hard for patients to make decisions about their care. Cancer care delivery is fragmented with multiple specialties, multiple choices of providers and various locations to receive care. This results in problems with coordinating care and preparing comprehensive treatment plans. Treatment plans can help you prioritize your responsibility to your patients. A treatment plan is a document prepared by the doctor that describes the path of cancer care and can be given to the patient, family or other members of the care team in order to inform everyone about the path of care and who is responsible for each part of that care. Components of a treatment plan include: Specific tissue diagnosis and stage, including relevant biomarkers, which are molecules found in blood, other fluids or tissues that are signs of disease Initial treatment plan and proposed duration Expected common and rare toxicities during treatment and their management Expected long-term effects of treatment Who will take responsibility for specific aspects of treatment and their side effects Psychosocial and supportive care plans Vocational, disability or financial concerns and their management Advance care directives and preferences. An advance directive is a legal document the patient fills out that says what treatment the patient does or doesn’t want if they can’t make medical decisions because they are in a coma or unconscious. The treatment plan should encourage conversations with the patient and can be used as a spring board for patient navigation, including assisting in care coordination and addressing barriers. If patients have specific questions about content of their care plan, you should help them list their questions and refer them to their doctor or clinician. Some institutions are required to provide treatment plans and give them to all patients. However, not all institutions do, and treatment plans can look different at different places. As a navigator, you should check your institution’s policy. If treatment plans are offered, then you can work with the patient to ask the clinician for a treatment plan.
- Patients may have trouble following their treatment plan. For example, they may not fill prescriptions due to Feeling that the medication wasn’t necessary Being unable to afford the medication Not wanting to take the medication or Not believing the medication would be effective. Patients may not want to change their behavior, or may want to avoid the side effects of treatment. Patients may be in disbelief about the severity of their condition. This might make them feel that their risk is not high enough to change their behavior or adhere to treatment. They may feel too busy or too stressed to follow the treatment plan. Feeling unable to change their behavior may also be a barrier to adhering to the treatment plan. Being uninvolved in the treatment plan creation process. Patients are more likely to follow a treatment plan when they are involved in creating it.
- Regardless of the challenge, there are steps that can be taken to address barriers and help patients adhere to their treatment plan. Always make sure the doctor is aware of any adherence issues. Make sure you and your patient agree on what the patient’s challenge is to treatment adherence. Refer challenges of a clinical nature, such as concerns about treatment side effects or understanding the severity of their condition, to the doctor or clinician, and support the patient in discussing issues. Next, determine the appropriate goal to overcome the challenge. Then, talk to the patient about their options. If the cost of paying for a prescription is preventing them from taking their medication, talk about options to be able to afford the medication such as resources for financial assistance. Help the patient choose the option that makes the most sense to them. Include loved ones in the conversation as appropriate. Friends and family members who interact with your patient may play an important role in your patient’s ability to adhere to their treatment plan. Have the patient summarize what was just discussed to make sure they understood the conversation. Follow up with questions about how important the patient feels it is to follow the treatment plan and whether they are confident that they can follow the treatment plan. A lack of confidence or understanding of the importance of the treatment plan may mean the patient needs a referral to health care providers for further education on the condition and support for treatment adherence. You can also try using an importance or confidence scale by asking the patient to rate the importance or their confidence on a scale of 1 to 10, with 1 being most important or confident. You can then ask the patient why the number is not lower or what they would need to do to feel more confident. This helps set the stage for defining the patient's needs. Be nonjudgmental when following up on treatment plan adherence. Try asking something like “Many people find it difficult to always take their medication as prescribed. How has your experience been?” If the patient admits to not following the treatment plan, alert the health care team and discuss barriers to treatment. Be sure to congratulate patients who are following their treatment plan. Let’s go through an example with Carlos, a patient who is supposed to start radiation but is concerned about transportation to treatments. In the last lesson we talked about strategies for assessing patients by listening, looking, clarifying and asking. When Carlos meets with his navigator Caroline, she notices that he seems uneasy. She asks Carlos if there is anything troubling him that he’d like to share. He responds that he has some anxiety about his treatment schedule and is afraid he may miss treatments. He says he is embarrassed to admit it, but his car broke down last week and he could not afford to get it fixed. He is scared that he won’t be able to get treatment and will die. He was able to come in today because he rode in with his sister who works nearby. Caroline can see that he is embarrassed and concerned. She clarifies by saying, “It can be hard to get to radiation appointments every day for several weeks. It sounds like the biggest reason you are worried about missing treatments is because you don’t have reliable transportation right now?” Carlos nods his head. Caroline begins walking through the process to help Carlos make it to treatment. Carlos agrees that if he has a ride he will come to treatment every day, so they decide the goal is to find reliable options. Since his visits are first thing in the morning, he thinks his sister can drop him off every day, but she has to work and he can’t sit around all day waiting for her to come get him. Caroline asks Carlos if he knows anyone else who could give him a ride, such as a neighbor or friend. Carlos realizes that his neighbor down the street is retired and has a car, but he doesn’t want to be a burden on him. Caroline asks if there is a bus near the cancer center that goes near his house. Carlos knows there is a bus, but he does not think he can afford it. Caroline mentions a ride sharing program that may be able drop him off after radiation. They talk through each option. Carlos says that, even though it is expensive, he would like to take the bus. Caroline tells him that sounds like a good plan and that she thinks she can help get some discounted bus fare for him. She then asks Carlos to tell her again how he will get to and from his appointments. He says his sister will drop him off and he will take the bus home. Caroline then asks him how comfortable he feels that this is a reliable option. Carlos says he thinks it will work. She also asks him what his backup plan will be if this falls through. He said he will talk with his neighbor today about being a backup. He will also sign up for the ride sharing program in case the bus rides home after treatment become uncomfortable. Caroline reassures him that even if Carlos arrives late for an appointment he will still be treated, and that he can always call her or the front desk to let them know if he won’t be arriving on time. Carlos feels much more confident and less stressed.
- Patients’ self-management of disease has been shown to greatly improve patient outcomes and quality of life. Studies have found that patients who participate in the management of their care have improved emotional and mental health and greater self-confidence. Other benefits of patient self-management include less pain, reduced nausea, significantly less fatigue, reduced hopelessness and less depression. These benefits may even extend to family members.
- A part of adhering to the treatment plan means encouraging patients to self-manage their care. Self-management is taking the actions necessary to live well and manage chronic conditions. Patients comfortable with self-management coordinate the various aspects of their care. Typical tasks of self-management include Carefully tracking symptoms. Determining what to do when symptoms cause problems, like deciding to visit the doctor or go to the emergency room. Adopting healthy behaviors and giving up old ones. Taking medications as prescribed. And Scheduling doctors’ appointments and lab visits. Self-management is particularly important for patients with other chronic diseases on top of cancer. While many of these activities should be overseen by a clinician, think about how a patient navigator can help support self-management. The navigator can: Help the patient report symptoms to the clinician and list questions to ask about what to do about symptoms. The navigator can also assess the patient’s understanding of what the clinician tells them. The navigator can provide information about adopting healthy behaviors and encourage the patient to talk with an appropriate clinician about them. The navigator can assess non-clinical barriers to adherence to treatment or inform clinicians if the patient mentions clinical reasons for non-adherence. And The navigator can help the patient schedule doctors’ appointments and lab visits.
- There are a number of resources available to help cancer patients with self-management. For concerns related to medications, treatment, symptom management and health promotion, like diet, exercise and behavior modification, patients should first consult their clinical health care team for guidance. The clinicians can help patients with managing symptoms, provide education and refer patients to specialists. Hospitals and treatment facilities may also have resources for patients, including support groups, classes and programs led by health professionals. Community resources may include support groups and classes, as well as financial assistance, transportation assistance and day care/elder care support. Finally, there are many websites devoted to providing education and information to cancer patients. These can be found in the resources section of the learning management system.
- In this lesson you learned to: Encourage active participation by the patient in decision-making and explain choices or rights to the patient in a patient-centered manner Assess patient desire and capacity to be involved and responsible in the decision-making process Determine patient preferences and priorities for treatment Identify strategies to assist patients in discussing preferences and priorities with clinician Support the patient in the decision-making process in alignment with desired level of engagement Describe a treatment plan Assess barriers to patient adherence to the plan Develop a plan with the patient for addressing adherence challenges Identify self-management and health promotion resources