Patient Navigation for Seasoned Navigators: Empowerment and System Change

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1 Patient Navigation for Seasoned Navigators: Empowerment and System Change Anne Willis, MA Director, Division of Cancer Survivorship Director, of Cancer Survivorship, GW Heather Kapp, MPH, LICSW Director, Cancer Care Access and Quality GW

2 Defining Patient-Centeredness

3 Why Patient-Centeredness? For diseases that are often chronic and sometimes incurable, with interventions that can have toxic and long-term consequences, it is especially important that decisions influencing patient outcomes reflect the patient s own perspective. Cancer provides a compelling case in point. Lipscomb J, Gotay CC, Snyder C. Patient-reported outcomes in cancer: a review of recent research and policy initiatives. CA, 2007;57: , p 278.

4 Patient-Centered Definition Whole-person" care Coordination and communication Shared decision-making Compassion Empathy Physical Comfort Patient empowerment Responsiveness Patient support Patient preference Emotional support Ready access Integration of care Individualization

5 Patient-Centered Definition: Institute of Medicine Health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care. Institute of Medicine. Crossing the Quality Chasm

6 Why Patient-Centeredness? Right thing to do Improved care Improved well-being Addresses disparities Better value Epstein et al. Health Affairs. Why the nation needs a policy push on patient-centered health care

7 Patient-Centeredness is NOT Just giving patients what they want, when they want it, regardless of value or cost Simply capitulating to patients requests Throwing information at people and leaving them to sort it out on their own Epstein et al. Health Affairs. Why the nation needs a policy push on patient-centered health care

8 Patient-Centeredness Depends On Supportive healthcare environment Receptive and responsive health professionals An informed and involved patient Epstein et al. Health Affairs. Why the nation needs a policy push on patient-centered health care

9 Supportive Healthcare Environment: Quality and Process Improvement

10 Q/PI Tools Understanding the problem: Patient Flow/Process Map Fishbone Diagram Pareto Chart Planning for change: PDCA (PDSA) Six Sigma DMAIC

11 Q/PI Tools: Patient Flow How many times is the patient passed from one person to another (hand-off)? Where are delays, queues and waiting built into the process? Where are the bottlenecks? What are the longest delays? What is the approximate time taken for each step (task time)? What is the approximate time between each step (wait time)? What is the approximate time between the first and last step? Wow many steps are there for the patient? How many steps add no value for the patient? Are there things that are done more than once? Look for re-work loops where activities are taken to correct situations that could be avoided is work being batched? Where are the problems for the patients? At each step is the action being undertaken by the most appropriate staff member? Where are the problems for staff? Understanding the Patient Journey-Process Mapping

12 How/where are patients screened? What happens when there is an abnormal finding? How are patients notified? How do they get to your institution? Q/PI Tools: Patient Flow What happens after treatment begins? Are psychosocial needs assessed and resources made available? How are medical, psychosocial and practical needs managed and by whom? 1. Screening 3. Treatment 2. Diagnosis 4. Post-treatment What happens during the diagnosis meeting? How are treatment decisions made? What do patients do when and after treatment options are discussed? What happens when treatment ends? Is there communication with the primary care provider? How are medical, psychosocial, and practical needs managed and by whom?

13 Q/PI Tools: Patient Flow Blasberg. ACCC Cancer Care Patient Navigation: A Call to Action

14 Q/PI Tools: Patient Flow Sandoval et al J of the Society for Healthcare Improvement Professionals.

15 Q/PI Tools: Fishbone Diagram Problem Categories of problems Causes of problems Why? Why? Why? Why? Why?

16 Q/PI Tools: Fishbone Diagram

17 Q/PI Tools: Fishbone Diagram

18 Q/PI Tools: Fishbone Diagram Blasberg. ACCC Cancer Care Patient Navigation: A Call to Action

19 Q/PI Tools: Pareto Chart When analyzing data about the frequency of problems or causes in a process. When there are many problems or causes and you want to focus on the most significant. When analyzing broad causes by looking at their specific components. When communicating with others about your data.

20 Q/PI Tools: Pareto Chart PN Barriers Pareto Chart % 83% 88% 91% 94% 97% 100% 100% 90% 80% % 70% % % 50% 50% 40% 30% 20% Frequency Percentage % 0 0%

21 Q/PI Tools: PDCA Plan Plan Plan a change Do Act Test/pilot change Check/Study Analyze results Check/Study Act Make a decision: expand, alter, abandon CAP-Do Do

22 Q/PI Tools: Six Sigma DMAIC Define Define problem Measure What is happening Analyze Analyze results Improve Make change Control Continually monitor Control Improve Define Analyze Measure

23 Survivorship

24 Who is a Cancer Survivor? Several definitions 5 years after diagnosis From the moment of diagnosis through the balance of life Including family and caregivers After completion of treatment Survivors don t always use the word survivor For the purpose of this training, a cancer survivor is someone who has completed active treatment

25 Why the Increased Focus on Survivorship? Cancer survivors are living longer and there are more of them. Cancer survivors are at increased risk for many health conditions, including second cancers. We have limited understanding of the factors that contribute to the development of late effects. We need more information on how to appropriately follow cancer survivors after they complete their cancer treatment. Ultimately, the goal is to improve the quality of life of long-term cancer survivors.

26 Quality of Life Domains and Impact of Cancer and its Treatment Source: City of Hope, Beckman Research Institute, 2004, reproduced with permission in the American Cancer Society s Cancer Treatment & Survivorship Facts & Figures,

27 Survivorship Terms Long-term effects Side effects or complications of treatment Begin during treatment and continue beyond treatment Late effects Unrecognized toxicities that are absent or subclinical at the end of treatment Occur months and years after treatment

28 Common Long-Term / Late Effects by Treatment Type Treatment Long-term side effects Late side effects Chemotherapy Fatigue Premature menopause Sexual dysfunction Neuropathy Chemo brain Kidney failure Vision/cataracts Infertility Liver problems Lung disease Osteoporosis Reduced lung capacity Second primary cancers Radiation therapy Surgery Fatigue Skin sensitivity Lymphedema Sexual dysfunction Incontinence Pain Cataracts Cavities and tooth decay Cardiovascular disease Hypothyroidism Infertility Lung disease Intestinal problems Second primary cancers Body image disturbance Functional disability Infertility Source: Mayo.com 28

29 Goals of Survivorship Care Follow-up care Surveillance for recurrence Screening for second cancers Assessment and treatment of medical and psychosocial issues Health promotion: smoking cessation, diet and exercise Communication and coordination with primary care physician

30 Challenges of Survivorship Care Fragmented delivery system Lack of awareness of the late effects of cancer and its treatment Poor communication Lack of survivorship standards of care Capacity for delivering care Institute of Medicine Lost in Transition report.

31 Challenges of Survivorship Care Lack of agreement on who should provide care Diverse survivorship populations Huge change in the culture of oncology Great need for patient and provider education Still trying to understand the right economic model

32 CoC: Survivorship Care Plan Plan provided by principal provider(s) who coordinated treatment with input from other care providers Plan given to patient upon completion of treatment Plan contains record of care received to include: Disease characteristics Follow-up care plan including recognized evidencebased standards of care Minimum standards included in IOM fact sheets

33 Receptive and Responsive Health Professionals: Stages of Change and Motivational Interviewing

34 Stages of Behavior Change Transtheoretical Model of Change, a theoretical model of behavior change originally explained by Prochaska and DiClemente Basis for developing effective health behavior change Describes how people modify behaviors Focuses on the decision making process of the individual Prochaska JO and DiClemente CC ( 1984 ) The Transtheoretical Approach: Towards a Systematic Eclectic Framework. Dow Jones Irwin, Homewood, IL, USA.

35 Pre-Contemplation The patient is not ready to change Not yet thinking about change, Ignorance is bliss Has thought about behavior and decided not to change in the next 6 months May want to change, but has low self-efficacy Techniques: validate they are not ready to change, encourage evaluation of behavior and the self-exploration of it. Offer information that explains and personalizes the risk but not advice.

36 Contemplation The patient is.ambivalent Thinking about making a change, but sitting on the fence Not planning to change within the next month Is starting to compare current behaviors and life goals Has concerns (change energy) about not changing Techniques: Encourage exploration of pros and cons of behavior change. Try to get the patient to verbalize ambivalence, validate but strengthen patient s selfefficacy. Explore patients values and goals. Do this stage slowly, do not rush the patient into committing to change before fully exploring ambivalence.

37 Understanding Ambivalence Normalize, validate this is a common reaction to change NOT a personality problem part of being human, change is hard and even a positive change is loss Explore the attachment to the behavior: what are the benefits? Let the patient grieve the loss Explore what they are feeling-beginner s mind, be curious, not judgmental Trying to change without resolving ambivalence will not be successful

38 Preparation The patient is READY to change Testing the waters Planning to change within 1 month Has specific steps or goals, has taken some action in the past year Verbalizes readiness, commitment, and self-efficacy Techniques: Encourage positive thinking, encourage SMALL steps, encourage patient to continue to evaluate pros/cons of change

39 Action The patient is.making change happen Has done active work to change environment, experience or behavior Has made specific life-style changes in the past six months Feels positive about the change Techniques: Prepare for relapse. Enhance self-efficacy to prepare for challenges. Support, encourage, affirm to guard against feelings of loss and frustration. Coach the client in dealing with less-thansupportive responses from others and not getting overwhelmed by the pressure for perfection. Encourage asking for social support. Offer support options, information, tracking tools to measure progress.

40 Maintenance The patient is.staying on TRACK Focus is on ongoing, active work to maintain changes Sustaining the changes Following the plan Confident that they can continue the change Techniques: Relapse prevention. Identify and use individualized strategies to prevent and cope with relapse. Encourage continued tracking and celebrating milestone successes. Reinforce internal rewards of the change.

41 Relapse The patient REGRESSES Returns to old behaviors, for a day or a month or longer Reverts to an earlier stage of change Techniques: Normalize. Relapse is expected. Evaluate trigger/s for relapse. Plan stronger coping strategies. Reassess motivation to change and barriers to change. Return to Contemplation and/or Preparation stage until patient resumes Action stage.

42 Patient Readiness Ruler Below, mark where you are now on this line that measures your change in Are you not prepared to change, already changing or somewhere in the middle? Not prepared Already Changing Source: adultmeducation.com

43 Motivational Interviewing (MI): A Patient-Centered Approach From Rollnick and Williams: Motivational interviewing is a directive, client-centered counseling style for eliciting behavior change by helping clients to explore and resolve ambivalence. The examination and resolution of the client s ambivalence is its central purpose, and the counselor is intentionally directive in pursuing this goal.

44 MI: the core principles Establish Rapport Develop Discrepancy Roll with Resistance Support Self-Efficacy Miller and Rollinick, Motivational Interviewing: Preparing People for Change. Guilford Press 2002

45 Establish Rapport Express Empathy Acceptance facilitates change Skillful reflective listening is fundamental to expressing empathy Ambivalence is normal Techniques: Be friendly, open and collaborative. Use open ended questions. Find out what the perceived benefits are in the current behavior because there are benefits! People need to feel heard understood

46 Develop Discrepancy Develop Discrepancy: Accomplished by thorough goal and value exploration Help the patient identify own goals/values Identify small steps toward goals Focus on those that are feasible and healthy Explore the impact of the behavior on reaching goals or its consistency with values List pros and cons (decisional balance/payoff matrix) Allow client to make own argument for change

47 Resistance Roll with Resistance Resistance may include making excuses, blaming others, minimizing importance or significance of the change, challenging, hostile language (verbal and non-verbal), and ignoring. Patients who are resistant are not ready to change. Ways to roll with resistance: Acknowledge the person s perception Reframe Miller and Rollnick recommend asking the patient to take the position of arguing for a change. Then you argue the opposite and ask the patient to try to persuade you to make the change. This gives the patient the opportunity to list all the reasons why he/she should change.

48 Self-Efficacy Support Self-Efficacy Express optimism that change is possible Review examples of past successes Use reflective listening, summaries, affirmations Validate frustrations while remaining optimistic about the prospect of change Ask patient-centered questions How would you like things to be different? What do you think would be a first step? Think back to a time you accomplished something really hard. How did you do it?

49 Patient-Centered Counseling Skills Open-Ended Questions Affirm Reflective Listening Repeating Summarize Miller and Rollinick, Motivational Interviewing: Preparing People for Change Guilford Press 2002

50 0 to 10 Scale - MI Style Why would you want to make this change? On a scale of 0-10, 0 being not important at all, and 10 most important, what number would you pick for yourself as to where you are with importance on this change? Why are you at a, and not a zero? What are the 3 main reasons you want to make this change? Many thanks to Dr. Bill Miller for the use of these great questions!

51 Summarize the Interaction Remember the patient is in charge Stay with the feelings keep the empathy going Affirm what is feasible and healthy Help the patient stay with small, immediate changes Offer information, especially if they seem lost Qualify and normalize your suggestions: This has worked for some people Sometimes patients tell me they feel. Ask what they understand about the situation and what they plan to do next

52 Behavior Change Summary Patients need to: 1) recognize the disadvantages of not changing, 2) recognize the advantages of change, 3) hold some optimism about change, 4) have an intention to change, 5) and make a commitment to change In order to change

53

54 Motivational Interviewing and Colorectal Cancer Screening Patient Educ Couns August; 72(2):

55 Signs of Readiness to Get Screened Decreased questions about the issue. Decreased resistance. Change talk. Increased questions about change. Envisioning. The participant stops arguing, interrupting, denying, or objecting to getting screened. The participant seems to have enough information about colon cancer screening, and stops asking questions. There is a sense of being finished. The participant appears to have reached a resolution, and may seem more peaceful, relaxed, calm, unburdened, or settled. Sometimes this happens after the client has passed through a period of ambivalence or resistance. The participant engages in DARN-C language (Miller & Rollnick, 2004).Desire ( I d like to know that I was cancer free. ). Ability ( My insurance covers CC screening. ). Reasons ( My aunt died of CC, so there is a family history. ). Need ( My doctor really wants me to, and I always to what my doctor suggests. ). Commitment ( I m going to make an appointment for a colonoscopy next time I visit my doctor. ). The participant asks what he or she could do about getting screened, what the experience is like, how long it takes, etc. The participant begins to talk about how life might be after she gets screened, to anticipate receiving news that she has cancer or that she doesn t have cancer. [Adapted from Curry SJ, Ludman EJ, Graham E, Stout J, Grothaus L, Lozano P. (2003). -Adapted from Miller, 1991]

56 Concept Simple reflection-reflects exactly what is heard. Amplified reflection-amplifies or heightens the resistance that is heard. Double-sided reflection-reflection points out both sides of what the client is saying. Shifting focus-shifts the person s attention away from what seems to be a stumbling block in the way of progress. Emphasizing personal choice-stresses that the decision to get screened or not is entirely the participant s and that nobody can make that choice for them. Client Interventionist Client Interventionist Client Interventionist Client Interventionist Client Interventionist Conversation I don t want to get screened. You don t think getting screening for CRC will work for you. I could not get screened. What if they find something? It sounds like you are very concerned that a screening test might tell you something that you don t want to hear. There is no question that my health is important to me. However, nobody in my family has ever had CC, and I take good care of myself. I really don t think that I m at risk. So on the one hand, you appear to be saying that you really don t see any danger that you might be at risk for CC. On the other hand, you seem to be very clear that you value your health. My doctor probably told you to call me. You are probably calling to tell me that there is something I m not doing right about my health. It sounds like you think my job is to criticize you or tell you what to do. I m sorry if I ve given you that impression. I m calling because I want to hear YOUR thoughts on CC screening. My job is to listen to you and hear your thoughts on why you would or wouldn t get screened. Would you mind if we talked a bit about CC screening? I m pretty fed up with everyone always telling me how I should live my life and what I should do with my body Nobody can force you to get screened.

57 MI Examples 9eCs Ktfc

58 Practicing in Pairs One person is to talk for about 2 minutes about a habit, behavior, dilemma, or something they are thinking about changing. The listener s task is to be an interested listener without saying anything or asking questions. At the end, they are to give a summary of what they have been told.

59 Additional Resources Colorado Patient Navigator Training _cancers/module4/1a_what_is.htm MI in Cancer Survivorship

60 Patient Engagement: Teaching Self-Advocacy

61 Patient Engagement

62 Cancer Survival Toolbox Communicating Finding Information Making Decisions Solving Problems Negotiating Standing Up for Your Rights

63 Why Patient-Centeredness? When you are making these important decisions, if a doctor makes the wrong decision, the next day the doctor gets to try again with a new patient. The patient doesn t have that option. Patients only have one chance to get it right. Willis quoted in Institute of Medicine. Patient-Centered Cancer Treatment Planning: Improving the Quality of Oncology Care: Workshop Summary, p. 3.

64 Questions?

65 Contact Information Anne Willis, MA Heather Kapp, MPH, LICSW

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