Bridging the Advance Care Planning Gap

Andre, a recent widower, decides he should have a will done, so he makes an appointment with a lawyer. Some 44% of adult Americans and 68% of Americans over age 65 have wills, so Andre is by no means unusual. The lawyer, an estate planner, is happy to prepare the will and suggests that, as part of the process, they also do a health care advance directive. The latter has become a standard part of the estate planning work lawyers do today. The lawyer provides very impressive looking forms—a living will and a health care power of attorney—with certain options for Andre to pick, which are then printed out and signed along with the other estate planning documents. Andre names the oldest of his three children, Dedra, to be his health care proxy.

Andre takes the document home and files it away. A year later, Andre has a serious stroke. Hospital staff asks his daughter if Andre has an advance directive. Dedra says yes, but she’ll have to look for it when she can. No more is done after that. If it does get into the medical record, it plays little role in Andre’s course of care. The terms of the document address general hypothetical situations and provide little guidance for dealing with the complicated medical variables Andre now faces daily and which could not have been anticipated.

Andre’s primary care physician of several years knows Andre’s medical history quite well, which includes a history of heart disease. He raised the question once in the past about whom Andre would like to make decisions for him if he could not act for himself. He even provided Andre a brochure on advance directives. But other than putting a few notes in the chart that the subject was introduced, nothing more was ever done by the physician. Andre now has multiple physicians in the hospital, none of whom know him very well or self-identify as his “primary” physician.

This is not what advance care planning should look like. The National Academy of Medicine, in its seminal 2015 report Dying in America describes what it should look like.

Advance care planning refers to the whole process of discussion of end-of-life care, clarification of related values and goals, an embodiment of preferences through written documents and medical orders. This process can start at any time and be revisited periodically, but it becomes more focused as health status changes. Ideally, these conversations 1) occur with a person’s health care agent and primary clinician, along with other members of the clinical team; 2) are recorded and updated as needed, and 3) allow for flexible decision making in the context of the patient’s current medical situation.

Both lawyers and clinicians fall short in achieving this vision of advance care planning (ACP), but even more difficult to discern is the chasm between the mindset and practice priorities of the two professions with respect to ACP. A vast literature has emerged on the healthcare side examining the challenges to ACP engagement in clinical settings and promising practices. On the legal side, the literature on practices and attitudes is relatively thin. One conclusion the literature does make clear is that advance directives in and of themselves, without additional preparation and discussion, have little or no effect on end-of-life decision-making.

In response to these challenges, the ABA Commission on Law and Aging brought together a select group of more than 30 legal and clinical experts to shed some light on how the approaches to ACP of lawyers and clinicians differ and how the greater alignment of practices could be achieved. The initiative was motivated by the recognition that the ultimate goal for both professions is the same—that individuals’ values, goals, and wishes about treatment near the end of life will be known and honored.

A day-long summit of intense dialogue, preceded by participant individual interviews, affirmed a characterization that most lawyers tend to view ACP through a legal lens, in which the primary result is the production of advance directive documents that are legally valid, appoint a health care agent, and include instructions to guide the decision-maker. The legal forms tend to be based on state statutory forms or another form clearly recognized in the state. In practice, lawyers customize the basic forms to address a variety of issues, from specific medical treatments and powers of the named agent to family involvement and other personal wishes. Clinicians commonly perceive advance directive forms drafted by lawyers as much too long and legalistic, which they regard as a barrier to their effectiveness.

Our lawyer participants acknowledged that the time frame for discussion of client’s advance directives before drafting is relatively short and typically mixed in with larger estate planning matters. Lawyers develop their own style of asking questions to elicit client preferences, but the interview time does not normally allow for fully thoughtful explorations of clients’ goals of care in the context of their health and illness trajectories, clinical options, relationships with health care providers, and relationships within families. Nor are the health and illness dimensions of the client’s circumstances within the expertise of lawyers.

In the clinical world, professionals increasingly are recognizing the importance of advance care planning as an essential component of person and family-centered care and palliative care. They are increasingly being urged to begin care planning discussions as part of clinical care throughout the adult life span of the patient. However, the documents most often used in advance care planning—legislatively created living wills and powers of attorney—are somewhat ill-fitted to clinicians’ normal face-to-face care planning and case note mode. At the same time, clinicians too often lack the training and time to hold effective conversations about advance directives. They also may hold misconceptions about key legal concepts of planning, such as the legal capacity for decision-making and the roles of surrogates.

Having both legal and clinical doorways to ACP should benefit our diverse national population; but if the doors don’t lead to the same place, they may lead to patients’ wishes not being elicited, documented, understood or honored. In its effort to align clinical and legal approaches, the summit generated three products: eight consensus principles for clinical and legal ACP practice; a counseling checklist for lawyers; and a resource list compiling ACP tools that both lawyers and clinicians can provide to clients or patients to engage them in ACP reflection and discussion. All three were combined into a handbook: Advance Directives: Counseling Guide for Lawyers.

The eight principles in the Guide touch upon:

  • The task of proxy designation
  • The ongoing nature of ACP
  • The preferred focus on values, goals, and priorities
  • The role of ACP tools
  • The content of advance directives
  • The changing nature of ACP when serious illness is experienced
  • The importance of sharing documentation
  • The importance of collaboration between lawyers and clinicians

The Guide’s checklist has three stages: pre-meeting, first client meeting, and second client meeting. Its focus is not on drafting advance directives but on counseling before drafting.

The heart of the checklist focuses on health care agent selection and client values, priorities, and wishes, borrowing in part from an online advance care planning tool developed by Dr. Rebecca Sudore and colleagues at the University of California San Francisco. Research on the tool, called Prepare for Your Care, has shown that it increases patient-reported engagement and documentation of advance care planning. The Guide recommends that lawyers connect clients to the full Prepare for Your Care tool or other advance care planning tool in the resource list to use on their own and in discussion with family and health care providers. The resource list includes a variety of effective tools since no one tool is likely to appeal to every client.

The checklist also includes a sample letter from the lawyer to the client’s physician to serve as a model for engaging the client’s physician in the client’s planning process and getting documentation into the medical record. This initial step does not solve all the problems in clinical documentation, but it takes an important first step. The Guide offers other suggestions for making the advance directive visible as well as for reviewing the directive as the client’s circumstances change.

This work was done to assist you, so lawyers should feel free to adapt the Guide to their practices and even improve it as they learn what works best for them. The full Guide is downloadable for free here. The webpage also includes a Word version of the checklist so that lawyers can incorporate the text into their own office systems. A print version of the Guide can be purchased in the ABA Store here.

About the Authors

Charles P. Sabatino is the director of the American Bar Association’s Commission on Law and Aging, responsible for the Commission’s policy and practice research, development, and education initiatives.

Louraine C. Arkfeld is the chair of the Commission on Law & Aging, and previously was chair of the Senior Lawyers Division and the Judicial Division. She is a retired judge from Arizona where she served 26 years on the bench.

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