From the time I began work as a young lawyer in a senior citizens law project in 1979 through more than 25 years at the ABA Commission on Law and Aging, one ever-present challenge in the field of aging has been how to ensure that the care individuals receive at the end of life is the care they want and expect. Advance care planning is a key tool for reaching that goal. (I use the term “advance care planning” because that’s the core process in which advance directives are merely one tool.) A lot has changed over the years, and research, law, policy, and practice experience have nudged me toward a perspective I’d like to share in the form of eight advance care planning lessons. This list may be of interest to you both personally, as you consider your plans for the future, and professionally, as you reflect on the role that lawyers play in the planning for others. And, if I’ve learned anything in my career, it’s that the only constant is change. These lessons will continue to evolve with changing medical science, health systems, and social mores.
1. Most Advance Directives Aren’t Worth the Paper on Which They Are Written
I’ve written about the shortcomings of advance directives elsewhere (see, e.g., The Evolution of Health Care Advance Planning Law and Policy, 88 Milbank Q. 211 (2010)), so here, let me just give a very simplified summary of the research literature. Only a minority of adults take the time to create a healthcare advance directive, and they generally use a standardized form that doesn’t provide much useful clinical guidance. Even after completing a directive, a patient cannot be confident that it will be followed. Healthcare providers typically don’t know that the directive exists, or if they know, it’s not in the medical record or easily accessible in the record. Agents acting under a healthcare power of attorney typically have inadequate knowledge of the principal’s goals and wishes and are too often unprepared to act as an effective surrogate decision maker.
2. The Only Real Legal Task of Advance Care Planning Is Appointing and Informing a Healthcare Agent
The authority of an agent to act for an incapacitated principal didn’t exist at common law. It is a power created by statute, so understanding and following the legal requisites of state law is important. However, everything else is a communication task, not well accomplished through legal documents. Yet, the documentation of treatment instructions—usually in the form of a living will—has been the focus of most legislative and public attention.
In the popular mind, creating a living will to communicate treatment wishes in the face of serious and eventually fatal disease is the most important legal task in advance care planning. The creation of state “living will” laws going back to the 1970s has given the public and sometimes the bar the mistaken belief that you must use a particular legal document to express your future healthcare wishes, but that is not the case. Statutes did not create the right to have one’s wishes honored. That right originates in both constitutional and common law principles. More importantly, treatment-specific instructions just don’t work well, except for persons facing fairly known and imminent decisions. We lack a crystal ball to tell us what challenges we will face in our final days. Having a surrogate decision maker is far more valuable, but only if the surrogate is adequately informed and educated.
3. Ambivalence Is Our Middle Name
Not only do we have a right to change our mind, we often do so. In one study of 189 community-dwelling elders with advanced chronic conditions, researchers found that when participants were asked about their willingness to risk physical disability in order to avoid death, almost half changed their minds over a two-year period, and almost half changed their minds about their willingness to risk cognitive disability. And those participants whose health varied over time were somewhat more likely to have inconsistent trajectories. See Terri R. Fried et al., Stages of Change for the Component Behaviors of Advance Care Planning, 58 J. Am. Geriatrics Soc’y 2329 (2010). These results shouldn’t be surprising to anyone. Most of us are ambivalent about the prospect of dying, and our deeply held human inclination to hang onto life, even through a progressive decline, often means that we are willing to redraw the line at which enough is enough. A doctor colleague of mine captures it best with what he tells me is an old Spanish proverb: The bull looks different from inside the ring.
4. Advance Care Planning Has Stages
As our lives change, so does the nature of advance care planning. Planning is just as important for a young, healthy Freddie at age 18 as it is for a Frederick at age 85 who has a serious progressive chronic condition. Freddie isn’t likely to think about end-of-life priorities and goals. But Freddie can and should think about whom he wants to make decisions for him were he to become temporarily or permanently indisposed. By the time Freddie reaches his 40s or 50s, he will likely have had personal or family experiences with chronic illness or death and dying; at that stage, his more seasoned values and priorities can be a part of his advance care planning discussion. Frederick, on the other hand, is in a position to be very specific about his preferences, priorities, and treatment decisions—that is, if someone takes the time to talk meaningfully with him. We know that the likelihood of engaging in advance care planning is directly proportional to age, but the need is just as high at all ages.
5. The Best Trait in a Healthcare Agent: A Drive to Relentlessly Research
Anyone who has counseled clients about naming a healthcare agent knows that a relationship of true love and intimacy doesn’t necessarily translate into a relationship of good surrogate decision making. Sometimes that person is too emotionally invested to make objective decisions. I used to emphasize most strongly the need for an agent to be a strong advocate for the patient’s preferences in the face of resistance. But I’ve concluded that even more important is a drive to know and discover. The ideal agent should want to understand a client’s values and thinking as thoroughly as possible, and he or she should also be inclined to approach medical decisions as a research task. What are the facts and options, and how do values and goals lead to a choice in that circumstance? This is not PhD-level research; it is often informed common sense.
Some excellent handbooks for healthcare agents are available. But, as a short course, I have found that the following four questions, suggested by Dr. Pat Bomba, a nationally recognized geriatrician, can bring needed clarity to any critical decision an agent must make. See Patricia A. Bomba, Marian Kemp & Judith S. Black, POLST: An Improvement over Traditional Advance Directives, 79 Clev. Clinic J. Med. 457, 459 (2012).
Will the proposed treatment make a difference? Do the burdens of treatment outweigh its benefits? Is there hope of recovery? If so, what will life be like afterward? What does the patient value? What is the patient’s goal of his or her care?
6. An Advance Directive Does Not Equal a Plan of Care
Formal legal documents have an aura of authority about them that doesn’t always stand up to scrutiny. Advance directives are an example. Even if a directive is perfectly clear about a particular decision (e.g., “Under no circumstances do I want anyone to attempt resuscitation if my heart or breathing stops.”), it is not a medical order and may never see the light of day in the medical record. Consider what drives behavior in hospitals and other institutions. It is doctor’s orders and standard clinical protocols. Advance directives simply don’t integrate well with current hospital practice. Moreover, even if the treating physician is aware of your directive, every state permits healthcare providers to raise conscience objections and refuse compliance, as long as required notice and some level of assistance in transferring to another provider is given.
Some very insightful clinicians in Oregon in the 1990s began to think about how to bridge this gap between the treatment goals and wishes of seriously ill patients and medical orders that actually govern care and treatment. The effort gave birth to the Physician Orders for Life-Sustaining Treatment (POLST) program. POLST programs have developed in more than a third of the states under a variety of names: Medical Orders for Life-Sustaining Treatment (MOLST), Physician Orders for Scope of Treatment (POST), Medical Orders for Scope of Treatment (MOST), and others. They all have in common four important tasks:
A discussion takes place between the treating physician and patients with advanced progressive illness, or their surrogate. The discussion explores the range of end-of-life care treatment options and seeks to discern the wishes of the patient in light of his or her current condition. If the patient has an advance directive, it is relevant and potentially helpful to this discussion, but the POLST program is available to all patients with advanced illness regardless of whether they have previously engaged in advance care planning. The patient’s wishes are incorporated into a set of doctor’s orders recorded on a highly visible, standardized POLST form that serves as a cover sheet to the medical record or is easily accessible in the electronic health record. Providers must ensure that the POLST form travels with the patient whenever he or she transfers from one setting to another. Providers comply with POLST across care settings and reevaluate the orders with the patient or surrogate as appropriate.
POLST programs are taking hold in the majority of states and represent a real sea change in learning how to elicit and honor patient preferences and goals of care. A substantial research base shows that POLST substantially improves the documentation of patient preferences in the medical record and compliance with them at the end of life. A research bibliography on POLST can be found at www.polst.org/educational-resources/939-2. However, the beating heart of POLST, as well as its Achilles heel, is the quality of the conversation between provider and patient. Of course, this is true of all forms of advance care planning. Developing valid and feasible quality measures to ensure the quality of these conversations is still a work in progress.
7. Good Advance Care Planning Requires More Than Just Better Education—It Requires System Change
Healthcare delivery in the United States is extremely complicated and fragmented. While medical orders and standard clinical protocols may drive what happens in a particular setting, many more factors affect quality of care across the continuums of time, place, and disease. As patients and their agents travel across these continuums, they too often find little support in making good decisions, and are left on their own to navigate a maze of care providers, settings, and confusing information. POLST offers one paradigm for improving care planning for those with advanced progressive illnesses. Better education of healthcare providers and the public is also essential. However, person-centered care and care planning across the age span also requires fundamental system change. Doing the right thing has to be built into the system.
At least one health system in the Midwest has figured out how to do this with advance care planning: Gundersen Lutheran Health System in La Crosse, Wisconsin. The Gundersen system covers 19 counties and has 6,300 employees. They have built advance care planning into the system design, ensuring that all adults encounter advance care planning opportunities multiple times, at different times, and in a way that is appropriate for their stage of life. Staff members are trained in advance care planning skills, and the healthcare system goes outside hospital walls to educate and engage the community in advance care planning. Finally, the systems put in place are subject to a process of continuous quality improvement.
As a result, data from a retrospective study of deaths across all settings in La Crosse County, Wisconsin, during a seven-month period revealed that 90 percent of the deceased individuals had an advance directive. Of those with an advance directive, it was available in the medical record 99.4 percent of the time. In addition, 67 percent of decedents had a completed POLST form at the time of death. Bernard J. Hammes et al., A Comparative, Retrospective, Observational Study of the Prevalence, Availability, and Specificity of Advance Care Plans in a County That Implemented an Advance Care Planning Microsystem, 58 J. Am. Geriatrics Soc’y 1249, 1252 (2010).
With respect to conformity of treatment to preferences, the study found that expressed preferences regarding CPR and hospitalization were consistent with treatment in 99.5 percent of the cases. These outcomes far surpass any similar measures seen elsewhere. While Gundersen may be smaller than many health systems, less urban, and more homogenous, the results are still astounding and demonstrate that it is possible to fashion effective advance care planning environments. La Crosse has set a high bar, but it’s one that makes me extremely optimistic about the future of advance care planning.
8. Lawyers Will Continue to Have an Important, Though Changed, Role in Advance Care Planning
Almost every general practitioner, estate planner, and family law attorney includes advance directives in their armament of products. Unfortunately, advance directives are often a stock add-on, produced in rote fashion, and signed with minimum explanation. This is somewhat understandable, given that meaningful counseling about goals of care, values, and treatment options is time intensive and, thus, likely cost-prohibitive for most clients.
A better role for lawyers is that of provocateur and facilitator. There are many good advance care planning tools and workbooks now available that can be given to clients to jump-start their thinking, provoke meaningful conversations with family and clinicians about future medical decision making, and educate future surrogate decision makers about their role. For a list of tools and resources, see the webpage of the ABA Commission on Law and Aging: www.americanbar.org/groups/law_aging/resources/health_care_decision_making.html. The tools can also become additional, important documentation of the individual’s thinking, values, priorities, and wishes. These conversations don’t come easily, but with your encouragement and some tools to help them along, clients are more likely to engage in the process effectively. Then you can customize their advance directive—a document that they will now understand to be part of a continuing conversation, not the end of a discussion.
In the end, the mantle of responsibility for tough decisions falls on the shoulders of the patient, agent, family or friends, and healthcare providers. Good advance care planning is good person-centered care. And good person-centered care is the Holy Grail of health reform, long-term care, and end-of-life care. I’m 30 years and eight lessons into my quest for this ideal and am cautiously encouraged by what I have seen so far.