Consumer Information

• A Tour of State Advance Directive Registries
  This summary provides thumbnail descriptions of state advance directive registries, as of June, 2017, based solely on a review of state law and state registry web pages.
• Ten Legal Tips for Caregivers
  Family caregivers face a surprising mix of legal, financial, and practical issues every day. This flyer offers ten tips to help you understand and manage those issues.
• Health Decisions Resources
  This publication provides resource links to information on thinking about and discussing your goals and values, helping you draft an advance directive, helping health care agents do their jobs well, advance directive forms, advance directive registries, and general end of life resources.
• Making Medical Decisions for Someone Else: A How-To Guide (proxy guide)
  This publication describes in simple terms what it’s like to be a health care proxy, what to do while there’s still time to think about it, how to make the hard decisions, and where to get help.
• Giving Someone a Power of Attorney for Your Healthcare (multi-state guide and form) 
  This booklet offers a simple durable power of attorney for health care, designed to meet the legal requirements in nearly all states.
• Consumer's Tool Kit for Health Care Advance Planning
  This tool kit contains a variety of self-help worksheets, suggestions, and resources. There are currently 9 tools in all, each clearly labeled and user-friendly. Tool #2 is currently under revision and Tool #10 has been replaced by the Resource List. The tool kit does not create a formal advance directive for you. Instead, it helps you do the much harder job of discovering, clarifying, and communicating what is important to you in the face of serious illness.
• Links to State-specific Advance Directive Forms
  This page provides links to state-specific advance directive forms.
• Sample HIPAA Right of Access Form for Family Member/Friends
  This form allows you to direct health care providers and payers to disclose and release protected health information to whomever you name.
• Health and Financial Decisions: Legal Tools for Preserving Personal Autonomy
  Information on powers of attorney, trusts, health care advance directives, living wills and other planning tools. 2005. Brochures are $1 each for 1-100 brochures (e.g., 50 brochures for $50) and 50 cents each for 100 + brochures.
  • Purchase hard copies
  • PDF download
  • Spanish Version: Decisiones de Salud y Monetarias (Financieras): Recursos Legales Para Mantener Sus Propios Deseos e Intereses Personals."
    • Hard copies are no longer available.
    • PDF download
• Myths and Facts About Health Care Advance Directives
  by Charlie Sabatino, Bifocal, Vol. 37, No. 1
• Family Conversations About End-of-Life Care
  Commission Director Charles Sabatino appeared on WAMU’s Diane Rehm radio show August 8, 2012.
• In Your Hands: The Tools for Preserving Personal Autonomy
  Narrated by the late Helen Hayes, with an epilogue by her son, James MacArthur, this video addresses the legal aspects of planning for incapacity in a clear and positive way, and introduces four legal tools: durable powers of attorney, medical powers of attorney, living wills and trusts (1994).

  Lawyer Resources

• Health Care Decision-Making Authority of Guardians and Agents.
  Does the court-appointed guardian or the patient-appointed agent have the ultimate authority over an incapacitated individual’s health care? This Bifocal article provides a brief update on the statutorily established health care decision-making authority of each state. Additionally, the article highlights the growth of decision-making standards for court-appointed guardians with health care authority and emphasizes that patient-appointed health care agents should be the final authority on an incapacitated individual’s health care. The two charts below accompany the article:
  
  • Health Care Decision-Making Authority: Who Makes the Decision?
  • Health Care Decision-Making Authority: What is the Decision-Making Standard?
• Questions and Answers Submitted to the United States Department of Health and Human Services Health Information Technology Policy Committee Certification/Adoption Workgroup
  ABA testimony regarding health decisions from Charlie Sabatino, Commission Director, September 23, 2013
• Surrogate Health Care Decision-Making for Unbefriended Patients: “Attention Must Be Paid”
  Meeting presentation slides by Erica Wood (May 2015)
  
• Incapacitated and Alone: Health Care Decision-Making for the Unbefriended Elderly
  This 2003 publication is now available as a free pdf download. It presents the findings of a ground-breaking study aimed at improving medical decision-making on behalf of older patients incapable of making their own decisions and lacking surrogate decision-makers.
  
• Third-party resources
  
  • The Hastings Center Guidelines on Life-Sustaining Treatment and Care Near the End of Life
    This edition updates and significantly expands the Center's groundbreaking comprehensive ethics guidelines first published in 1987.
    
  • States Find Success with Physician Orders (POLST) to Honor Patients’ Treatment Wishes
    AARP report offers suggestions for states to launch POLST programs effectively.  
• Meeting presentations
  • The Evolution of Advance Care Planning and Advance Directives (North Carolina Bar Elder Law Symposium, Feb. 23, 2012)
    
  • Surrogate Decision-Making and Advance Directives (2010 National Aging and Law Conference)
    
  • "The Real Story on End of Life Care Issues in 2009," slides by Charles Sabatino
• American Bar Association and Harris Interactive Inc. 2008 Healthcare Emergency Planning Poll
  • Topline Results
  • Survey Data

Legislative Analysis

• Federal Bills Addressing Advanced Illness, Advance Care Planning, and Family Caregiving 115th Congress, as of March 9, 2018.
• State Health Care Power of Attorney Statutes: Selected Characteristics  (Jan. 2018)
• Substitute Decision-Maker Terminology Under State Law
  This new chart details state-by-state terminology (where defined) for substitute decision-makers, designated substitutes, and statutory default substitutes (July 2016).
• Default Surrogate Consent Statutes (January 2018)
• POLST Program Legislative Comparison Chart (June 2017)
• Orally Provided Food and Fluids and Comfort Care (July 2017)
  

Annual Summaries

• Summary of Health Care Decision Statutes Enacted in 2016-17
• Summary of Health Care Decision Statutes Enacted in 2015-16
• Summary of Health Care Decision Statutes Enacted in 2013-2014
• Summary of Health Care Decision Statutes Enacted in 2012
• Summary of Health Care Decision Statutes Enacted in 2010

Health Care Decision-Making in Clinical Settings

This research project launches a major study of how health care providers make health care decisions for patients in a clinical setting who lack capacity and have nothing in writing naming a person to make health care decisions. The research is made possible by funding from the Retirement Research Foundation. Joining the Commission in undertaking this research are the Society for Hospital Medicine and the Society for Critical Care Medicine.

• For project background, please see: 2016 Year in Review: Health Care Decision-Making Research, by David Godfrey, Bifocal, Vol. 38, No. 2.
• An Annotated Bibliography for the project is available.
• Health Care Decision Making in Clinical Care Settings
  Report, research, findings and recommendations