The last 25 years have seen a substantial number of studies and commentaries questioning the value of health care advance directive documents. The weight of evidence suggests that they fail to have little effect on decision-making outcomes such as length of hospital stays, level of pain, or health care costs (Ditto et al., 2001; Fagerlin & Schneider, 2004; Fonk, Davidoff, Lutzow, Chesley, & Mathiowetz, 2012; Halpern, Pastores, Chou, Chawla, & Thaler, 2011; Teno et al., 1994, 1997).
Evidence that decisions made with an advance directive are more in line with the patient’s values and wishes is mixed at best (Shapiro, 2012). However, more recent studies provide evidence that advance directives do result in somewhat greater concordance between treatment preferences expressed in directives and some outcomes such as treatment received and place of death, etc. (e.g., Degenholtz, Rhee, & Arnold, 2004; Hammes, Rooney, & Gundrum, 2010; Silveira, Kim, & Langa, 2010). The more optimistic outcomes in these studies result partially from a fundamental shift in the way we think about and use advance directives.
In the mid-1990s, the national policy discussion about advance directives began to move away from a heavy emphasis on advance directive documents and toward an awareness that the quality of communication between the individual and those persons likely to be involved in health care decision making lies at the heart of effective advance care planning (Sabatino, 2010).
The concept of “advance care planning” received a major boost in the Institute of Medicine’s (IOM) 1997 report, Approaching Death: Improving Care at the End of Life. The IOM described advance care planning as follows:
Advance care planning is a broader, less legally focused concept than that of advance directives. It encompasses not only preparation of legal documents but also discussions with family members and physicians about what the future may hold for people with serious illnesses, how patients and families want their beliefs and preferences to guide decisions . . ., and what steps could alleviate concerns related to finances, family matters, spiritual questions, and other issues that trouble seriously ill or dying patients and their families. (IOM, 1997, 198–199)
The IOM recognized that, while the various legal formalities written into most state advance directive laws were intended to protect patients, in reality they tend to create barriers to the goal of making patient’s wishes known and honored. Advance care planning, on the other hand, involves an iterative process over time that seeks to discern an individual’s evolving priorities, values, and goals of care, and to engage a proxy and others who may participate in future health care decisions (Collins, Parks, & Winter, 2006; President’s Council on Bioethics, 2005; Tulsky, 2005). Documenting one’s wishes and goals assists that process. But, because every person is unique in their mental and emotional approach to death and dying—and their goals and priorities change over time—no one way of engaging in advance care planning and documenting one’s wishes can be prescribed.
In this context, a variety of pathways, tools, workbooks, and decision aids have been emerging to facilitate advance care planning and to enable documentation of one’s goals and wishes. The purpose of this article is to provide a short tour through a number of useful and creative tools and aids available today. The focus is on tools that actively engage users or at least lead users through questions that result in a work product. Not included are many very good online informational sources, such as those offered by Caring Connections (www.caringinfo.org), sponsored by the National Hospice and Palliative Care Association, and Compassion and Choices (www.compassionandchoices.org/what-we-do/advance-planning). Many of the tools discussed produce advance directive documents, and they are indeed an important part of the process; but engagement and direct communication are more important than legal formalism. Keep in mind that this review is by no means comprehensive of all the resources available, and the commentary on the tools reflects only the author’s views.
One distinction important to understand for some of the advance directives described in this article centers on their “validity” under state law. Where that is noted, it means that they claim to meet the formal requirements in a state’s advance directive statute. Directives that do not meet state requirements are not necessarily invalid; providers must still give heed to clearly expressed wishes under both common law and constitutional principles, no matter how one expresses them. However, the delegation of decision-making authority to an agent to make decisions for a principal at a time of incapacity is a product of state statute. Thus, documents for appointing an agent should follow state law requirements as closely as possible to ensure their enforceability.
Getting the Conversation Going
The first group of tools mentioned is focused primarily on helping individuals think about the important questions related to health decisions and get the conversation going with loved ones and health care providers.
The Conversation Starter Kit (www.theconversationproject.org)
The Conversation Project, an initiative begun in 2010 by columnist Ellen Goodman and her colleagues, is dedicated to helping people talk about their wishes for end-of-life care. Their premier resource is the Conversation Starter Kit, freely accessible online. The Starter Kit guides the user through a number of questions probing what matters are important to the individual at the end of life, how much information and control the individual wants to have, length of life versus quality of life, and the desired role of loved ones. It also provides guidance in starting the conversation, overcoming barriers, and keeping the conversation going.
Consumer Toolkit for Health Care Advance Planning (www.ambar.org/healthdecisions)
This online, downloadable toolkit was first released by the ABA Commission on Law and Aging in 2000 and has been updated once since then. This free toolkit does not create a formal advance directive. Instead, it aims to help individuals to discover, clarify, and communicate what is important in the face of serious illness. Among the tools are the following:
How to select your health care agent or proxy,
Are some conditions worse than death?
Personal priorities and spiritual values important to your medical decisions
Conversation scripts: getting past the resistance, and
The Proxy quiz for family and physician.
The Proxy quiz can serve as an engaging and lively group exercise. It presents 10 multiple choice scenarios. Seeing how well you can predict the responses of family members and friends can be an eye-opening experience.
The Go Wish Game (www.codaalliance.org)
This creative product is a card game for sorting out one’s values and priorities related to end-of-life decision making, created by the Coda Alliance, a community organization in Santa Clara County, CA. The cards can be played in a number of ways and provide an alluring avenue to discussion, as playing cards is such an acceptable kitchen table staple. The basic game is a two-pack set available for purchase.
PREPARE Web Site (www.prepareforyourcare.org)
Developed by Rebecca Sudore and her colleagues at the University of California at San Francisco, this Web site is designed to help people and their loved ones prepare for medical decision making by guiding the user through five easily understandable steps of preparation for decision making in the face of serious illness:
Choose a medical decision maker
Decide what matters most in life
Choose flexibility for your decision maker
Tell others about your wishes
Ask doctors the right questions
Videos sprinkled throughout the Web site offer helpful perspectives of experts and individuals who have faced health decision-making issues. The result of the five-step process is a printable action plan, not an advance directive. This approach avoids reliance on legal forms and focuses on individual action and communication to make one’s wishes known and honored. This tool does more than guide the conversation, so it is more like the comprehensive tools discussed below; but because it does not result in a conventional advance directive, it really stands in a category of its own.
Death Cafes (www.deathcafe.com)
Death Cafes offers a nonprofit model for small social gatherings. The concept was developed in 2010 by Jon Underwood, a Web programmer in England who was inspired by similar concepts in Europe. The model migrated to the United States in 2012. Underwood set up a few loose guidelines for death cafes and launched a Web site to serve as a clearinghouse. With guidance from the Web site, one can set up gatherings of friends or strangers to eat cake, drink coffee or tea, and discuss death. A home, cafe or restaurant, community space, or even a tent or park may serve as the setting. The objective is “to increase awareness of death with a view to helping people make the most of their (finite) lives.” A Death Cafe is a group-directed discussion of death with no agenda, objectives, or themes, other than death and dying generally. It is not a grief support or advance planning counseling session. Death over Dinner (www.deathoverdinner.org) is an emerging similar social model.
Comprehensive Advance Care Planning Tools
The following tools and aids ranging from booklets to interactive online tools are intended to be full service resources that guide one through the thinking, talking, and documenting one’s goals, values, and wishes in a health care advance directive.
Five Wishes (www.agingwithdignity.org)
Published by Aging with Dignity, this popular advance directive guide walks users through five key questions in an understandable, nonlegalistic way:
Who you want to make health care decisions for you when you can’t make them?
The kind of medical treatment you want or don’t want?
How comfortable you want to be?
How you want people to treat you?
What you want your loved ones to know?
Five Wishes has a modest price but can be downloaded or completed online. Upon completion, it results in an advance directive that includes the appointment of a health care agent. The directive meets state statute requirements in some 42 states and can serve as helpful guidance in the remaining states.
Caring Conversations (www.practicalbioethics.org)
This free workbook is published online by the Center for Practical Bioethics. It guides users through a number of reflective questions about one’s values, priorities, and desires, and provides guidance on discussing them with others, choosing and working with a health care agent, and how to evaluate decisions such as whether to use artificial feeding. The workbook provides an advance directive form, including appointment of a health care agent, as sample forms. There is no claim of the form’s legal recognition in any particular state.
Thinking Ahead: My Way, My Choice, My Life at the End (www.dds.ca.gov/ConsumerCorner/ThinkingAhead.cfm)
This free tool was created through the California Department of Developmental Services and includes both a workbook and video addressing personal preferences and end-of-life choices. It was crafted to meet the needs of individuals with developmental disabilities but is by no means limited to that population. It is very user friendly, straightforward, and clear, and can be an appealing tool for anyone.
Giving Someone a Power of Attorney for Your Health Care: A Guide With an Easy-to-Use Legal Form for All Adults (www.ambar.org/healthdecisions)
This guide, published by the ABA Commission on Law and Aging, must be paired with a tool such as the Consumer Tool Kit for Health Care Advance Planning, described previously, to constitute a comprehensive advance care planning tool. The free guide provides a simple multistate health care power of attorney that is valid in all but five states: Indiana, New Hampshire, Ohio, Texas, and Wisconsin. These five states have unusual formalities that pose barriers to a multistate advance directive.
MyDirectives is the first all-in-one interactive advance care planning tool and registry. It is a free Web-based service that allows you to create and update your own “Universal Advance Digital Directive.” The program leads users through a series of questions about their values, priorities, and preferences, and produces an electronic advance directive that is signed digitally. The resulting directive, including appointment of a health care agent, strives to be valid in every state, but does not promise. But, as with other nonstatutory advance directives, it can provide strong documentation of your wishes.
MyDirectives is integrated with an encrypted, secure database to store the documents created. The documents are available to the individual and to any authorized medical treatment providers 24/7. MyDirectives also allows users to include information about contacts, medical information, or other personal information. No one can change information in the file except the maker. Individuals who have used interactive programs such as TurboTax will find the approach of MyDirectives familiar.
Guides Focusing on Certain Illnesses or Decisions
There are countless Web pages with information about specific conditions and treatments, including questions to consider in making treatment decisions. These are not necessarily interactive tools such as those described previously, but because they can be extremely helpful resources for persons facing specific illness or decisions, they are included here. Besides popular sites like WebMD, most major health systems have fairly in-depth online resources of this type, including Mayo Clinic, Kaiser Permanente, Johns Hopkins, the Cleveland Clinic, and many others. Among traditional printed publications, a now classic resource that explains key treatment decisions faced by those with life-threatening illnesses is Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Measures Only and the Elderly Patient (www.hardchoices.com).
This is a 48-page booklet written by Hank Dunn, a nursing home and hospice chaplain for over 30 years. It provides relevant, easy-to-understand guidance on making decisions about the following:
Artificial hydration and nutrition (artificial feeding tubes)
Hospitalization of an ill person
Shifting to a hospice approach
Ventilators, dialysis, antibiotics and pain control, and more.
The book publishing world is experiencing a groundswell of writings about serious illness, death, and dying, so reviewing that genre is beyond the scope of this article. However, one comprehensive reference on death and dying that remains a standard on my own shelf is the Handbook for Mortals: Guidance for People Facing Serious Illness by Dr. Joanne Lynne and colleagues (Lynn, Harrold, & Schuster, 2011). In addition to guidance on advance care planning, the book provides a comprehensive and readable manual to dealing with virtually every aspect of serious and eventually fatal illness.
Increasingly, the power of video is being used to educate patients and explain difficult decisions. Research has shown videos to be effective decision aids (Epstein et al., 2013; Volandes, Paasche-Orlow, & Barry, 2009). However, most video decision aids are produced for or by health systems and access requires being member of a health system that has the rights to use the video. The series of videos at www.acpdecisions.org, produced by Dr. Angelo Volandes at Harvard Medical School and his colleagues and marketed to health systems, is probably the most established model at present.
Advance Directive Registries
Just having an advance directive or other documentation of advance planning means very little if it’s not at the right place when needed. To bolster the accessibility of advance directives, many national and state registries have been created over the years. MyDirectives, described previously, is one. Examples of other national directories include the following:
America Living Will Registry (www.alwr.com)
MedicAlert Foundation (www.medicalert.org)
U.S. Living Will Registry (www.uslwr.com)
More than a dozen states have also created advance directive registries, though neither the state nor national directories have yet garnered a critical mass of participants (Hughes, 2009). As electronic medical records become more widespread in and between health system, it is unclear whether health systems will embrace Web-based registries or prefer to keep their data systems entirely in-house.
It is also unclear how accepting the general public is of keeping such personal documents in Web-based registries. We may be experiencing a gradual generational change in that direction. Still, many individuals with directives prefer to hold onto the hard copy and share it only with their proxies, close family, and physician. A middle ground is a smartphone app created by the ABA Commission on Law and Aging called My Health Care Wishes (www.ambar.org/MyHealthCareWishes).
The app gives individuals and their family members the ability to store their own and each other’s health care advance directives, key health information, and health care contacts in a user-friendly format on their Apple or Android smartphones, and to send advance directive documents to health care providers or others at any time by e-mail or Bluetooth connectivity. Even for users of electronic registries, the convenience of having a copy on their own and family members’ phones may be attractive.
Finally, there are online document and information storage sites that are intended to be comprehensive electronic repositories, not only for advance directives but also for all one’s personal and estate planning documents such as wills, trusts, health care advance directives, funeral arrangements, financial powers of attorney, insurance policies, and other financial or legal documents of importance. Two prominent examples are Everplans.com and Aftersteps.com. They also include checklists, information pages, and guidelines on all these topics, though neither offer the step-by-step guidance that the advance care planning tools above provide.
The small sampling of tools and aids described here demonstrate a growing attention to, and creativity in, effective advance care planning. Many more will likely emerge in the years ahead. A virtual-reality advance directive can’t be far away.
I don’t expect any one of these tools to become the one way to do it, for a diversity of tools is needed to accommodate the diversity of values, beliefs, attitudes, personal styles, and emotions that we humans have toward the topic of illness and dying. And, no matter how good the tool, the measure of success is the thoughtfulness of one’s planning and the quality of communication with loved ones and providers. The tool provides a means but only the person can provide the mind and heart.