PERSONAL ASSISTANTS AND COLLABORATIVE DECISION MAKING: PROMOTING A BETTER BALANCE OF AUTONOMY AND WELL-BEING FOR ADULTS WITH MODERATE, MILD, AND BORDERLINE MENTAL RETARDATION by Sarah M. Pope B.S., University of New Hampshire, 2000 J.D., University of Pittsburgh, 2007 Submitted to the Graduate Faculty of The Center for Bioethics and Health Law in partial fulfillment of the requirements for the degree of Master of Arts University of Pittsburgh 2007 UNIVERSITY OF PITTSBURGH THE CENTER FOR BIOETHICS AND HEALTH LAW This thesis was presented by Sarah M. Pope It was defended on April 13, 2007 and approved by Elizabeth Chaitin, DHCE, Center for Bioethics and Health Law James Flannery, JD, School of Law Thesis Advisor: Alan Meisel, JD, Center for Bioethics and Health Law, School of Law ii Copyright © by Sarah M. Pope 2007 iii PERSONAL ASSISTANTS AND COLLABORATIVE DECISION MAKING: PROMOTING A BETTER BALANCE OF AUTONOMY AND WELL-BEING FOR ADULTS WITH MODERATE, MILD, AND BORDERLINE MENTAL RETARDATION Sarah M. Pope, J.D., M.A. University of Pittsburgh, 2007 Autonomy is a core value of American tradition and is promoted in health care through the doctrine of informed consent. The notion underlying informed consent is that patients should have the right to decide, and are often in the best position to know, what will enhance their own well-being. Although this ethic has been extended to incompetent patients, by employing surrogate decision making, providing surrogate decision makers for adults with moderate, mild, and borderline mental retardation (“M-BMR”), who could potentially make their own decisions if adequate supports were offered, unreasonably restricts the autonomy of such individuals and often results in disregard for the patients’ human dignity. This thesis recommends that health care institutions provide a personal assistant for all health care visits involving adults with M-BMR. In her role as an advocate for the patient, the personal assistant would offer a less restrictive means of promoting the patient’s autonomy in medical decision making than has limited guardianship, thus furthering the goals of guardianship reform that limited guardianship has been unable to do. Serving as an educator and translator, the personal assistant would provide a means to equalize the patient’s opportunity to understand the diagnosis, treatment options, and risks and benefits of those treatments. Alternatively, in iv cases where a surrogate decision maker is required, the personal assistant would aid in equalizing the patient’s opportunity to understand what is happening during medical procedures by ensuring continued communication with the patient with M-BMR. Finally, having training in ethics, the personal assistant would foster a collaborative approach to medical decision making that recognizes the importance of incorporating both the physician’s experience and knowledge and the family member or caregiver’s unique understanding of the patient in the medical decision. Together, the personal assistant and the collaborative decision making approach will enhance discussion between the physician, patient, and family member or caregiver, thereby helping balance the autonomy and the well-being of the patient with M-BMR, while also ensuring that the patient’s dignity is respected. v TABLE OF CONTENTS CHAPTER 1: INTRODUCTION............................................................................................. 1 1.1 WHAT IF IT WERE YOU?...................................................................................................... 1 1.2 JUST A SIMPLE STRESS TEST ................................................................................................ 2 1.3 DEFINING THE DISENFRANCHISED ....................................................................................... 5 CHAPTER 2: INDEPENDENCE AND PERSONHOOD: AN AMERICAN TRADITION ....................................................................................................................................................... 14 CHAPTER 3: THE PROPOSAL: A TWO-STEP APPROACH ........................................... 18 3.1 THE PERSONAL ASSISTANT................................................................................................ 18 3.2 COLLABORATIVE DECISION MAKING: BALANCING AUTONOMY AND WELL-BEING ......... 22 3.2.1 WELL-BEING ......................................................................................................... 24 3.2.2 AUTONOMY AND THE INTERCONNECTED WEB OF RELATIONS............................... 27 3.2.3 VALUES, INTERESTS, AND SOCIAL INFLUENCES..................................................... 30 3.3 PROMOTING THE BALANCE: COLLABORATIVE DECISION MAKING .................................... 33 CHAPTER 4: THE RATIONALE............................................................................................ 35 4.1 RECENT PROGRESS IN UNDERSTANDING THE DECISION MAKING ABILITIES OF ADULTS WITH M-BMR...................................................................................................... 37 4.2 NEW UNDERSTANDING CALLS FOR NEW IDEAS................................................................. 39 CHAPTER 5: THE LAW.......................................................................................................... 40 5.1 HISTORY OF INFORMED CONSENT...................................................................................... 40 vi 5.2 THE CURRENT STATE OF DECISION MAKING FOR INCOMPETENTS ..................................... 43 5.2.1 ASSESSING ONE’S CAPACITY TO CONSENT............................................................ 43 5.2.2 THE PROCESS OF ASSIGNING A SURROGATE DECISION MAKER ............................. 46 5.2.3: THE LEAST RESTRICTIVE ALTERNATIVE: A GOOD APPROACH ................................... 54 5.3 A NEED FOR CHANGE........................................................................................................ 56 CHAPTER 6: ETHICAL IMPLICATIONS............................................................................ 57 6.1 THE RESULT OF CURRENT PRACTICES: EXCLUSION OF ADULTS WITH M-BMR FROM THEIR OWN MEDICAL DECISIONS ................................................................................................. 57 6.2 REALITY: AN ETHICAL DILEMMA ...................................................................................... 58 CHAPTER 7: APPLYING THE PROPOSAL ........................................................................ 75 7.1 IMPLEMENTATION OF THE PERSONAL ASSISTANT PROGRAM ............................................. 75 7.2 PRINCIPLES THAT COULD GUIDE THE COLLABORATIVE APPROACH .................................. 78 7.3 ACCEPTING THE CHANGE................................................................................................... 81 CONCLUSION ........................................................................................................................... 83 BIBLIOGRAPHY....................................................................................................................... 85 vii LIST OF TABLES Table 1: WHO Classification of Mental Retardation .................................................................... 9 viii CHAPTER 1: INTRODUCTION 1.1 WHAT IF IT WERE YOU? Picture yourself in an unfamiliar doctor’s office surrounded by different machines and medical tools. Your name is John Doe. Beside you sits a man who drove you to this place, but who you have only interacted with a few times. At times, the man turns to you to ask you questions, but often he uses words that you don’t understand. After about twenty minutes, a young nurse in colorful scrubs comes in and asks you to lie on the examination table. Having become used to unfamiliar people asking you to do things at the group home, you obligingly lie down on the table. As you lie there, you notice the nurse attaching some sort of bands around your wrists and ankles. Feeling a little uneasy, but trusting that she knows what she’s doing, you remain silent. “Okay,” she says as she wipes your hand with an alcohol swab, “this will only hurt for a moment.” Quickly, the nurse pokes a needle into your hand and tapes it down. “Ouch!” you protest, still unsure why this is happening. You had visited the doctor before, but nothing like this had ever happened. As you lie there, you begin to feel nervous and hot. Sweat beads down your forehead to the back of your neck. Your heart begins to race. “Ahh!” you gasp, “No!” “It’s okay, Mr. Doe. We are just running some tests. No one is trying to hurt you,” the nurse states, smiling. 1 What is happening? Your heart is racing! It feels like it’s going to beat right out of your chest. You are hot, so hot! “Ahh!” you scream as you try to sit up, but the restraints the nurse has attached keep you from raising your arms. You feel faint. Everything is happening so fast! Suddenly, the room is dark… 1.2 JUST A SIMPLE STRESS TEST Though hypothetical, your experience was much like that of the real John Doe. Mr. Doe lives in a group home. He is fifty four years old with moderate mental retardation. What Mr. Doe experienced was a drug induced stress test. Since the physician was unsure as to whether or not Mr. Doe would be able to participate in the stress test by running on a treadmill, he asked Mr. Doe and the head of the group home, who is legally able to serve as a guardian,1 if Mr. Doe would participate in the drug induced diagnostic test. It is unclear whether or not the cardiologist assumed that Mr. Doe was competent and accepted his consent