2012 AAHPM & HPNA Annual Assembly

Transcription

1 Disclosure Patient Navigation Interventions To Improve Palliative Care For The Underserved: Integrating The Voice Of The Community And Scientific Rigor Drs. Fischer and Hauser have no relevant financial relationships to disclose. Stacy Fischer, MD and Joshua Hauser, MD University of Colorado School of Medicine and Northwestern University Outline Definitions and Background Disparities in Palliative Care Elevating the State of Science Program Evaluation Training Historical background Dr Harold Freeman conducted first known study of patient navigation in Harlem in 1995 Late stage breast cancer rates went from 50% to 21% Five year survival rates went from 3% to 70% Who can be a navigator? Navigators work WITH patients, families, and communities to empower them to overcome barriersinin the health care system and enjoy better health and health care. Social workers Nurses and nurse practitioners Community health workers Lay persons/volunteers (e.g. cancer survivors) 1

2 Examples of Patient Navigator Activities Facilitating communication among patients, family members, survivors and healthcare providers. Coordinating care among providers. Arranging financial support and assisting with paperwork. Arranging transportation and child care. Ensuring that appropriate medical records are available at medical appointments. Facilitating follow up appointments. Community outreach and building partnership with local agencies and groups. Ensuring access to clinical trials They re Everywhere! In 2003, the American Cancer Society conducted a survey Over 200 cancer programs nationwide have some form of patient navigation Such as: American Cancer Society Patient Navigation Research Program (NCI/CRCHD) CMS sponsored demonstration project Clinical Directors Network Why is there a need for patient navigation in palliative care? Priority need for culturally appropriate assessment and treatment at the end of life Existing care systems inadequate Multiple barriers to end of life care Willingness to Trade Financial Resources for Life Prolonging Cancer Treatment Cancer Care Outcomes Research and Surveillance 4214 patients newly diagnosed with lung or colorectal cancer Willing to spend all of their personal resources to extend life 80% African Americans 72% Asians 69% Latinos 54% Caucasians Martin M, Cancer 2011;117: Pain Management Eastern Cooperative Oncology Group study 281 non Caucasian patients Compared data to previous study using variables chosen a priori Minority patients were more likely to Be under medicated Have pain underestimated by physicians Report that they needed stronger medication Pain Management 4003 patients with cancer participating in HCFA nursing home demonstration project Predictors for failing to receive any analgesia Age > 85 years 1.4 ( ) African American ethnicity 1.63 ( ) Low cognitive performance 1.23 ( ) Number of medications received 0.65 ( ) 2

3 We Don t Carry That Ethnic Differences in ACP 312 patients with advanced cancer from Coping with Cancer Study Ethnic differences found Completing ACP Acknowledgingterminal illness Want life prolonging care with only days left to live Consider religion very important Differences in ACP persisted even after adjusting for terminal illness acknowledgment and sociodemographic characteristics Latino versus Caucasian 0.65 [95% CI, 0.47 to 0.89]) Smith AK Racial and Ethnic Differences in Advance Care Planning Among Patients With Cancer: Impact of Terminal Illness Acknowledgment, Religiousness, and Treatment Preferences JCO 2010 Advance Directive Discussions and Documentation by Ethnicity Reported an advance directive discussion Reported a discussion and had an advance directive in the medical record Latinos (n = 102) Caucasians (n = 236) 28% (29) 54% (n = 128) 34% (n =10) 29% (n = 37) Did not report an advance directive discussion but still had an advance directive in the medical record 21% (n = 15) 23% (n = 25) Fischer et al., Journal of Palliative Medicine (in press) Advance Directive Discussions Logistic regression modeling Adjusting for socioeconomic status, education, disease severity, social support, PCP Latinos were less likely l to report having discussed advance directives OR 0.42 (CI ) No ethnic differences for actually completing an advance directive Fischer et al., Journal of Palliative Medicine (in press) Role of Health Literacy in EOL Preferences 104 Spanish speaking patients from primary care clinic Asked about end of life preferences in face of advanced dementia Watched 2 minute video of a patient with advanced dementia Preferences were re assessed after the video Role of Health Literacy in EOL Preferences Before video 40% Preferred comfort care 41% Preferred life prolonging care 11% Chose limited care 8% Unsure P < After video 75% Preferred comfort care 8% Preferred life prolonging care 13% Chose limited care 4% Unsure Volandes AE. Overcoming Educational Barriers for Advance Care Planning in Latinos with Video Images Journal of Palliative Med 2008 Volandes AE. Overcoming Educational Barriers for Advance Care Planning in Latinos with Video Images Journal of Palliative Med

4 Hospice Utilization Clear and consistent in the literature that hospice utilization lower in African American decedents Latino hospice utilization more complicated SEER database analysis for Medicare cancer patients suggest no differences between Latino and Caucasian hospice utilization National Mortality Followback Survey did not find differences for Latinos versus Caucasians In Colorado, 78% Latino cancer decedents had hospice care versus 77% Caucasian cancer decedents Hospice Utilization For other diagnoses evidence suggests Latinos use hospice at lower rates compared to Caucasians AIDS Heart failure Liver failure Engaging the Community Focus groups Surveys Key Informant Interviews Community Partnerships and Outreach Community Advisory Panels State of the Science? Small sample sizes Lack of control group Lack of randomization No single definition of patient navigation Combining navigation with other interventions Cost effectiveness not evaluated (until PNRP) Evaluating Your Program Outcomes What outcomes are important to you to know you have made a difference? What outcomes may be important to your funder to continue the program? Challenges: High attrition in programs that focus on end of life care Gather information from patients? Family? Medical charts? Evaluating Your Program Process Fidelity What is/are the protocol or guidelines for the program How to measure? What happened? tracking the intervention/program How did it happen? What was the perceived impact of the navigator? Challenges: how to measure this when you have a control group 4

5 3. Development and Overview of the Navigating the System Workshop 4 sessions Approximately 1 hour each For people living with cancer and their family caregivers Taught by social workers, nurses, patient navigators and educators Community cancer centers, wellness centers, hospitals Teaching methods Facilitated small group discussions, interactive exercises, role plays, videoeos Module 1: Introduction to Navigating the Healthcare System Module 2: How Families Live with Cancer Module 3: Recognizing and Communicating Needs at Home Module 4: Recognizing and Communicating Needs with Healthcare Providers Module 1: Introduction to Navigation Learn members of clinical team and their roles Learn about settings of care Learn about health insurance coverage Module 2: How Families Live with Cancer Identify areas where help is needed Learn how to recognize and prevent burnout Identify potential sources of help Provide strategies for building a team Module 3: Recognizing/Communicating Needs at Home Recognize cancer signs and symptoms Learn tools to help track concerns Provide strategies for discussing needs at home Learn how to document goals of care medical wishes 5

6 Module 4: Recognizing/Communicating Needs with Healthcare Providers Learn steps to take before, during and after visits with the healthcare team for optimal communication Communicate needs identified by the NEST Tool Current Steps for Navigating the System Workshop Presentations to social workers and nurses 2009 AOSW, ONS, EPEC sessions Presentations in the Community Gilda s Club Chicago Outreach LAF, EPEC websites and mailing lists Social Work Hospice and Palliative Network (SWHPN) 3Development and Overview of the Navigating the System Workshop: Example of a module Module 3: Recognizing and Communicating Needs at Home nlated concerns documenting goals of care and advance directives Objectives Have increased knowledge of: common signs, symptoms and needs of cancer survivors how to communicate your needs with members of the healthcare team tools that can be used to track your cancerrelated concerns documenting goals of care and advance directives Health communication tools The LIVESTRONG Guidebook Other LIVESTRONG resources Cancer Survivor s Health Journal Cancer Survivor s Medical Treatment Summary Practical linformation Summary The NEST Tool NEST stands for: Needs Existential Social context Therapeutic 6

7 Filling out NEST Goals of Care Partner discussion Group discussion A set of personal priorities that can help guide decisions about cancer treatments People living with cancer s goals Family caregivers goals Physicians perspectives Nurses perspectives Social Workers perspectives Chaplains perspectives Informational handout Advance Care Planning A process to plan for care in the future Advance Directives Living Will Medical or Durable Power of Attorney Advance care planning documents and tools Five Wishes POLST Steps in Advance Care Planning Talk to your health care provider and family about your values and wishes. Decide on a health care proxy to make your decisions. Obtain documents so that your wishes ih are in writing. Review documents and decisions periodically. Starting the conversation Let your health care provider know that you want to discuss advance care planning. Ask for recommendations for state approved forms, or other assistance. Ak Ask your provider what you may need to consider given your current health care status. Continuing the conversation If you have already started Advance Care Planning, you can advocate for yourself by: bringing copies of your advance directive to your health care provider. asking your health care provider to review your directives with you asking if there is anything related to your current health status that should be included or considered in relation to the directives. updating the provider s office when an advance directive is revised. 7

8 Summary Knowing your symptoms and needs and communicating these effectively with your physician or other healthcare team members is not always easy. There are tools and techniques to help coordinate the work of your care team at home with your healthcare team to make sure your needs are addressed. What is the navigator s role in helping patients and their families who may need palliative care and hospice? Navigator s Role Summary - Ask about symptoms. - Ask about goals of care and preferences. - How do you do you that without taking away hope? - Know local resources in hospice and palliative care. Thank You Stacy Fisher: Stacy.Fischer@ucdenver.edu Joshua Hauser: j hauser@northwestern.edu 8