Caring For Vulnerable Patients in the Era of Health Reform. Objectives

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1 Caring For Vulnerable Patients in the Era of Health Reform Dean Schillinger MD, UCSF Professor of Medicine in Residence Chief, Division of General Internal Medicine Director, Health Communications Research Program UCSF Center for Vulnerable SF General Hospital Objectives Review impact of ACA on underserved populations Deconstruct the construct of vulnerable populations Present an integrated approach to vulnerable patients Provide 3 examples of social vulnerabilities & impacts Limited health literacy Food insecurity Intimate Partner Violence (IPV) Find joy and a feeling of alignment in one s work 1

2 ACA reduced uninsured by 50% and increased Medicaid by 36% Drops in the uninsured rolls much greater for minorities 2

3 Drops in the uninsured rolls much greater for the poor Vulnerable Populations Defined Vulnerable Populations are subgroups of the larger population that, because of social, economic, political, structural and historical forces, are exposed to greater risk of risks, and are thereby at a disadvantage with respect to their health and health care. 3

4 Exemplar Case Ms J is a 57 yo English-speaking Latina, mother of 5, with 3 grandchildren, with HTN, depression, DJD and IDDM with A1c of 8.6%. She presents for the first time after having been hospitalized for 3 days for hypoglycemia. The inpatient service was unable to identify a trigger for the hypoglycemia. Question for you is WHY? Mnemonic Devices Can Make you a Better Clinician! My Neurons Erase Memory. Only Names Improve Cognition 4

5 Common Social Vulnerabilities V U L N E R A B I L I T I E S iolence ninsured iteracy and Language eglect conomic hardship/food insecurity ace/ethnic discordance, discrimination ddiction rain disorders, e.g. depression, dementia mmigrant egal status solation/informal caregiving burden ransportation problems llness Model yes and Ears helter Schillinger 2007 What are We Up Against? Reversing The Inverse Care Law Access to and quality of healthcare is inversely proportional to the needs of the population - Tudor-Hart,

6 Somebody has to do something, and it's just incredibly pathetic that it has to be us. Jerry Garcia 3 Mechanisms Whereby Vulnerability is Associated with Poor Health Schillinger et al

7 Finding the Sweet Spot for Effective Intervention with Vulnerable Patients This approach uniformly allows a clinician to navigate the social distance and create the human connection that underlies therapeutic relationships Eliciting the Patient s Story: Reveals Hidden Treasures that Humanize 7

8 Finding Resilience Religion Expertise/Employment Social support & Network Intimates Laughter Institutions Energy & Enthusiam Navigate Life s Difficulties Cultural Assets Entertainment/Enjoyment Common Social Vulnerabilities V U L N E R A B I L I T I E S iolence ninsured iteracy and Language eglect conomic hardship/food insecurity ace/ethnic discordance, discrimination ddiction rain disorders, e.g. depression, dementia mmigrant egal status solation/informal caregiving burden ransportation problems llness Model yes and Ears helter Schillinger

9 What is Health Literacy? The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make [informed] health decisions. 3 domains: oral (speaking, listening); written (reading, writing); numerical (quantitative)?web? Patient portals? Capacity/Preparedness Demand Mismatch Schillinger Am J Bioethics 2007 Prevalence & Disparities in Limited Health Literacy Percentage of adults in each health literacy level, by race/ethnicity, % 80% 60% 40% 20% 0% Proficient Intermediate Basic Below Basic Total White Black Hispanic API AI/AN Multiracial Source: NAAL 9

10 Patients with Diabetes and Low Literacy Less Likely to Know Correct Management Need to Know: symptoms of low blood sugar (hypoglycemia) Low Moderate High Need to Do: correct action for hypoglycemic symptoms Low Moderate High Percent *Williams et al., Archive of Internal Medicine, 1998 Health Literacy is Associated with Glycemic Control, N= Inadequate Marginal Adequate % of patients Adjusted OR=0.57, p=0.05 Adjusted OR=2.03, p= st Quartile 4th Quartile (Tight Control: HbA1c 7.2%) (Poor Control: HbA1c>9.5%) Schillinger JAMA

11 Lower health literacy is associated with diabetes complications (N=408) Complication n ** AOR 95% CI Retinopathy ( ) Nephropathy ( ) Lower Extremity ( ) Amputation Cerebrovascular Disease ( ) Ischemic Heart Disease ( ) Schillinger JAMA 2002 Limited Health Literacy Patients Experience More Serious Hypoglycemia/year N>14,000 16% 14% 12% 10% 8% 6% Adequate Limited 4% 2% 0% Problems learning Help reading Not confident with forms P for all<0.001 Sarkar, Adler, Schillinger, JGIM

12 The problem with communication is the assumption that it has occurred. -GB Shaw Diabetes Patients with Limited Health Literacy Experience Poorer Quality Communication, N= % OR=3.2;p< % Doctor Use Words Not Understood OR=3.3;p=0.02 Give You Test Results w/o Explanation OR=2.4;p= % 21% 13% 13% 13% Confused About Medical Care Inadequate FHL Adequate FHL OR=1.9;p= % 20% Doctor Understand Problems Doing Rx (Often/Always) (Often/Always) (Often/Always) (Never/Rarely/ Sometimes) Schillinger

13 Recommendation #1: Eliminate Jargon (Use Living Room Language ) GLUCOMETER HEMOGLOBIN A1c DIALYSIS ANGINA RISK FACTORS CREATININE unclarified Glucometer Immunizations Weight is stable Microvascular complication System of nerves HbA1c EKG abnormalities Dialysis Wide Range Risk factors Kidney function Interact from Patient s own visit: benign blood drawn blood count Jargon Terms clarified Angina Microalbuminuria Ophthalmology Genetic Creatinine Symptoms CAT scan blood count correlate stool was negative stool baseline respiratory tract polyp washed out of your system receptors short course renal clinic blood cells increase your R screening vaccine 13

14 Function of Physician Jargon in Outpatient Visit Assess Symptoms 10% Deliver Test Results 24% Provide Recommendations 37% jpm=0.4 n = 60 Provide Health Education 29% Castro, Schillinger AJHB 2007 Recommendation #2: Assess comprehension with the teach-back method aka Closing the Loop In this interactive technique, the clinician prioritizes amongst the information exchange and explicitly asks the patient to teach-back what he/she has recalled and understood re those high-priority domains. Similarly, clinicians can use the strategy to assess patient s perceptions of the information or advice given. The technique can be used toward the end of a visit or during the course of the visit, so as to tailor communication earlier. 14

15 Closing the Loop: Interactive Communication to Enhance Recall & Comprehension New Concept: Health Information, Advice, or Change in Management Assess Patient Recall & Comprehension Provider Explains New Concept Patient Recalls and Comprehends Clarify & Tailor Explanation Adherence Re-Assess Patient Recall & Comprehension We Rarely Close the Loop -- But It s Good When We Do Physicians assessed recall or comprehension for 15/124 new concepts (12%) When new concepts included patient assessment, patient provided incorrect response half the time (7/15=47%) Visits using interactive communication loop not longer (20 min vs. 22 min) Application of loop associated with better HbA1c (AOR 9.0, p=.02) Schillinger Arch Int Med

16 Exemplar Case: Clearly this was Limited Health Literacy, right? Ms J is a 57 yo English-speaking Latina, mother of 5, with 3 grandchildren, with HTN, depression, DJD and IDDM with A1c of 8.6%. She presents to you for the first time after having been hospitalized for 3 days for hypoglycemia. The inpatient service was unable to identify a trigger for the hypoglycemia. Common Social Vulnerabilities V U L N E R A B I L I T I E S iolence ninsured iteracy and Language eglect conomic hardship/ food insecurity ace/ethnic discordance, discrimination ddiction rain disorders, e.g. depression, dementia mmigrant egal status solation/informal caregiving burden ransportation problems llness Model yes and Ears helter Schillinger

17 The Old Face of Hunger The uneasy or painful sensation caused by lack of food, or the recurrent and involuntary lack of access to food. The New Face of Food Insecurity The limited or uncertain availability of nutritionally adequate and safe foods or ability to acquire acceptable foods in socially acceptable ways Life Sciences Research Organization 17

18 Coping Strategies to Avoid Hunger Eating low-cost foods Eating highly filling foods Small variety of foods Skipping meals Avoiding food waste Eating less at each meal Skipping meals Federal nutrition programs (SNAP, WIC) Eating with relatives/friends/church Food pantries or soup kitchens Shopping in bulk/generic brands/coupons Putting off other expenses/staggering bills 21 million adults 8.6 million kids 12 million adults 765,000 kids 18

19 Risk Factors (Household-Level) Rank, 2009 Children (21%) Children under age 6 (22%) Children with single mother (37%); single father (25%) Income <185% FPL (35%) Black (25%) or Latino (26%) Smoker in the household About 50% of US adults between the ages of 20 and 65 will receive Food Stamps at some point. Nearly 50% of US children and 90% of Black children will use Food Stamps at some point during their childhood. Food Insecurity & Diabetes Food Insecurity Worsening of Competing Demands -Affordability of healthy foods -Episodic food availability -Stress Increased Health Care Utilization & Expenses Poor Diabetes Control Adapted from Seligman & Schillinger Increased Diabetes Complications 19

20 Food Insecurity & Diabetes Prevalence p=0.03 after adjusting for age, gender, race/ethnicity; p=0.09 after adjusting for above + education + income as continuous variable + income as ordinal variable Seligman, Jl Nutr, Food Insecure Adults with Diabetes Have Higher Average A1c Food secure (n=354) Food insecure (n=296) % <= >11 HbA1c Seligman, Diabetes Care,

21 Hunger-Obesity Paradox Food affordability Episodic food availability Bandwidth Relation between the energy density of selected foods and energy costs ( /MJ) Drewnowski, A. et al. Am J Clin Nutr 2004;79:

22 Hunger-Obesity Paradox Food affordability Episodic food availability Stress 22

23 Cycles of Consumption Food insecurity is cyclical & episodic Monthly SNAP ( The Food Stamp Cycle ) or pay checks Seasonal variation Periodic, unforeseen expenditures Food insecure households are food insecure during 7 months of the year on average Food Stamp Cycle: More Calories in the 1 st week of the month Wilde,

24 Income Shocks Affect the Poor via Food Budget Adaptation to episodic Food Availability: Binge Eating I buy a big five-pound block of cheese twice a month and when that first comes into the house, you know, it s like everybody s sort of ravenous after stuff. Towards the first part, the first half of the month they always eat probably more than they should, cause they get so excited. 24

25 Cycles of Food Adequacy & Inadequacy Wreak Havoc Hyperglycemia Hypoglycemia Seligman HK, Schillinger D. N Engl J Med 2010;363:6-9. Cycles of Food Adequacy & Inadequacy Wreak Havoc Hyperglycemia Hypoglycemia Seligman HK, Schillinger D. N Engl J Med 2010;363:

26 Hypoglycemia & Food Insecurity Patients with diabetes in a safety net hospital 1/3 of those who reported hypoglycemia attributed it to the inability to afford food Primary care patients with diabetes at community health centers (38% food insecure) Blood sugar ever gotten too low because you couldn t afford food? (33% FI vs. 5% FS) Ever been to the ER because your blood sugar was too low? (28% FI vs. 5% FS) Nelson, JAMA, 1998; Seligman, JHCPU, Risk Factors for Severe Hypoglycemia AOR Food Insecurity 3.0 ( ) Alcohol abuse 2.2 ( ) Comorbid illnesses 1.5 ( ) Obesity 0.3 ( ) Seligman, Arch Int Med,

27 Admissions Attributable And Appendicitis Among Patients Ages Nineteen And Older To 27% increase in rate of hypoglycemia admissions at end of month in low-income Seligman H K et al. Health Aff 2014;33: Recommendation #1: Screen for Food Insecurity Within the past 12 months, we worried whether our food would run out before we got money to buy more. Within the past 12 months, the food we bought just didn t last and we didn t have money to get more. Yes=often or sometimes true; no=never true Yes to either question: 97% sensitivity, 83% specificity Hager, Pediatrics,

28 Recommendation #2 for FI: Nutrition and Medical Counseling Simple counseling strategies Recommend Frozen fruits and vegetables Farmers markets Nutritionist & SW referral: hunger safety net & federal nutrition programs (still underutilized) For patients with diabetes Medication management/titration Expand definition of a sick day Individualize A1c goals Encourage smoking cessation for everyone in household! Exemplar Case: Clearly this was Food Insecurity, right? Ms J is a 57 yo English-speaking Latina, mother of 5, with 3 grandchildren, with HTN, depression, DJD and IDDM with A1c of 8.6%. She presents to you for the first time after having been hospitalized for 3 days for hypoglycemia. The inpatient service was unable to identify a trigger for the hypoglycemia. 28

29 Common Social Vulnerabilities V U L N E R A B I L I T I E S iolence ninsured iteracy and Language eglect conomic hardship/food insecurity ace/ethnic discordance, discrimination ddiction rain disorders, e.g. depression, dementia mmigrant egal status solation/informal caregiving burden ransportation problems llness Model yes and Ears helter Schillinger 2007 What is intimate partner violence (IPV)? PATTERN of abusive behaviors including physical, sexual, verbal, emotional, economic, and/or psychological abuse used by adults or adolescents against current or former intimate partners, and sometimes against other family members in ANY intimate relationship: LGBTQ/straight/all gender identities 29

30 Lifetime Prevalence of Rape, Physical Violence, Stalking by Intimate Partner Lifetime weighted percent Rape Physical violence Stalking Women Men 9.4% 32.9% 28.2% 10.7% 2.1% # not large enough for accurate estimate Rape, physical violence, and/or stalking 35.6% 28.5% With IPV-related impact this means that the person experienced some adverse impact as a result of the violence/abuse 28.8% 9.9% Effects of IPV: Relationships affect health Injuries and death (femicide) Poor mental health: depression, anxiety, PTSD, suicide Poor physical health Chronic pain Disability Asthma Stroke Heart disease STD s 2-3x risk, HIV risk increased Unwanted pregnancy and abortions Substance addiction (esp ETOH) Overuse of health services, missed appointments, obstruction of medical care and self-management 30

31 Recommendation #1: Screen for IPV At a minimum, screen all women and adolescent girls for victimization JCAHO requires screening of either all women or all women and men ACA requires IPV screening for women CA state law requires IPV programs in clinics Screening: Framing Questions I am concerned about my patients health and safety, so I ask all my patients... Because violence and threats are so common in relationships, I ask all my patients... Relate questions to patient s situation: The nurses have noticed that every time your boyfriend comes to visit you in the hospital your asthma gets worse, so I am worried that 31

32 Screening tools: HITS tool (best combo of sens/spec): Screening: Direct Questions Has your partner ever hit you or hurt you or threatened you? Has your partner ever forced you to have sex when you didn t want to? Has your partner ever tried to interfere with your birth control? Avoid value-laden terms like abuse or rape 32

33 What everyone needs is a good listening to. --Mary Lou Casey Recommendation #2: Intervene with Skills 17 PC intervention studies-- (beyond screening) Intervention methods: empowerment/education/referral/home visitation/phone calls/case manager Benefit: +13/17 studies Reduction in IPV: +5/11 studies (trend in 6 th ) (other benefits: improved health/use of resources and referrals, safety-promoting behaviors) 33

34 Recommendation #2: Intervene but Don t Rescue Assess safety and use empowering language Provide validating messages of support to all Offer hotline numbers to all Allow patient to call clinic/hospital if in danger Offer safety planning (either on site or in community agency) and ongoing support Always document in chart Assessment as an Empowerment Tool Emphasize unrecognized strengths Wow, you are amazingly strong to be caring for your child under such difficult circumstances That was so brave to share with me what is going on 34

35 SAFETY PLANNING Best done by a IPV advocate with participation of behaviorist but you need to know basics Explore with patient what creative, customized options there are for safety within the context of a dangerous and abusive relationship ALWAYS offer patient connection to safety planning experts community DV agencies (24/7) Documentation: Can Be Critical for a Legal Case San Francisco Department on the Status of Women 35

36 IPV Resources how to, training videos, patient ed materials clinic materials, policies, fact sheets national domestic violence hotline Exemplar Case: Clearly this was Intimate Partner Violence, right? Ms J is a 57 yo English-speaking Latina, mother of 5, with 3 grandchildren, with HTN, depression, DJD and IDDM with A1c of 8.6%. She presents to you for the first time after having been hospitalized for 3 days for hypoglycemia. The inpatient service was unable to identify a trigger for the hypoglycemia. 36

37 Where Have We Been? Deconstruct the construct of vulnerable populations Present an integrated approach to care of vulnerable patients Provide 3 examples of social vulnerabilities & DM Limited health literacy Food insecurity Intimate Partner Violence (IPV) Find the joy and a feeling of alignment in one s work Care of Vulnerable Patients There needs to be a little Don Quixote in all health practitioners locked in on the mission, undaunted by the doubters and the halfhearted Fitzhugh Mullan, MD 37

38 Interrupting the Cycles of Vulnerability & Poor Health Schillinger et al 2007 TWO DEAD MEN One: a refugee from Cuba. Always in white, Skin black and smooth, Fitting the mold from bottom top: White leather shoes, White pants, White linen shirt, Crowned with a Havana, Of course. A POEM. The other: tall, lanky, Happy and old. A former ball player In the West Coast Negro League. Pitched for the Sea Lions Until he threw his shoulder Out of its socket, And could throw no more. 38

39 The First: always smiling, Laughing even. Gold sparkling from a tooth. Bejeweled with bling Like epaulettes From his favorite pastime: Reno with Maria The Second: never sure of his age, Either 93 or 88, His Louisiana birth certificate, Unable to read it, But he knows it bears false witness. Keeps his daughter's number safe: Pearline - on the inside brim Of his omnipresent Baseball cap. The Former: still alive Cause he quit tobacco 25 years ago After being filleted open To plumb his heart. Proud of his medical survival skills, And grateful for his doctor. While smacking his big round belly, Pregnant with hope and worry. The Latter: still alive Because he quit smoking 25 years ago After being told his lungs are vanishing. Owe my life to my doctor, So he says and so he believes. Now chained to an oxygen tank, Not sure if it's worth it, Anymore. 39

40 Two Brothers, Resilient, Living in parallel, Struggling in parallel, Full lives behind them. Now both suddenly dead, Within days of each other. Leaving behind their doctor How can it be That these two men, Bedeviled by society Could become the favorites Of their doctor? What can fill the absences, When one is robbed of one's favorites And their love is lost? END 40