1. Most Advance Directives Aren’t Worth the Paper They Are Written On
Only a handful of adults create a health-care advance directive, and they typically use a standardized form that doesn’t provide much useful clinical guidance. Even if someone takes the time to complete a directive, there is no guarantee that it will be followed. Often times healthcare providers aren’t aware that the directive exists, or if they know, it’s not in the medical record or easily accessible in the record.
(Related: Majority of Hospitals Fail a Medicare Test)
2. The Real Legal Task of Advance Care Planning Is Appointing and Informing a Health-Care Agent
At common law, the authority of an agent to act for an incapacitated principal didn’t exist. The power is created by statute, so it imperative to understand and follow the legal requisites of state law. With that said, everything else is a communication task, and not easily accomplished through legal documents. But still, the documentation of treatment instructions, usually a living will, has remained the focus of most legislative and public attention. Without knowledge of what’s to come, having a surrogate decision maker is significantly more valuable than a living will, but only when the surrogate is properly informed and educated.
In one study of 189 community-dwelling elders with advanced chronic conditions, researchers discovered that when participants were asked about their willingness to risk physical disability in order to avoid death, nearly half changed their minds over a two-year period, and almost half changed their minds regarding their willingness to risk cognitive disability. Most people are ambivalent about the notion of dying, and our inherent desire to live often results in the renegotiation of when enough is enough.
4. Advance Care Planning Has Stages
Planning is crucial for all ages, not just the elderly. It is necessary to think about whom you would like to make important decisions in the event you were to become temporarily or permanently indisposed. Your perspective will constantly evolve with exposure to family and friends with chronic illness or death and dying; and at each stage your values and priorities can be a part of your advance care planning discussion.
5. Relentless Research Is The Best Trait in a Health-Care Agent
Love and intimacy is no guarantee when it comes to a good surrogate decision maker. Often it is emotions that stand in the way of objective decision making. The most important quality in a health-care agent is the drive to know and discover. You want an agent that is committed to understanding your values and researches first when it comes to medical decisions. What are the facts and options, and how do values and goals lead to a choice under the circumstances? Suggested by Dr. Pat Bomba, a nationally recognized geriatrician, the following four questions can shed light on any critical decision an agent must make:
Will the proposed treatment make a difference?
Do the burdens of treatment outweigh its benefits?
Is there hope of recovery? If so, what will like 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 like advance directives don’t always stand up to scrutiny. Even when directives are clear about a particular decisions, it is not a medical order and may never be revealed in the medical record. Doctor’s orders and standard clinical protocols drive behavior in hospitals and other health institutions. Furthermore, every state permits health-care providers to raise conscience objections and refuse compliance so long as required notice and some level of assistance in transferring to another provider is given.
In the 1990s a group of insightful clinicians in Oregon started the covnersation about how to bridhe this gap between treatments goals and wishes of seriously ill patients and medical orders that actually govern care and treatment. As a result, the Physician Orders for Life-Sustaining Treatment (POLST) program was created. POLST programs have arisen 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.
7. System Change
Currently, healthcare delivery in the U.S. is complicated and fragmented. As patients experience the road through time, place, and disease, too often they discover little support in making good decisions, and are left alone 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.
(Related: Long-Term Care Costs More Than Expected)
Person-centered care and care planning across the age span requires fundamental system change. Doing the right thing needs to be built into the system. Gundersen Lutheran Health System in La Crosse, Wisconsin, is one facility that has accomplished this task. 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 an age-appropriate way for the stage of their life. Staff are trained in advanced care planning skills, and the healthcare system goes outside hospital walls to educate and engage the community in advance care planning. And last, the systems put in place are constantly reevaluated and subject to quality improvement.
8. Lawyers Continue to Have an Important Role in Advance Care Planning
A better suited role for lawyers is that of a provocateur and facilitator. There are a number of quality advance care planning tools and workbooks now available that can be given to clients to kick-start their thinking, inspire meaningful conversations with family and clinicians about future medical decision making, and educate future surrogate decision makers about their role. Discover a list of tools and resources at the webpage of the ABA Commission on Law and Aging: www.ambar.org/HealthDecisions. While these conversations don’t come with ease, with encouragement and some tools to assist, clients are more likely to engage in the process effectively. A customized advance directive will be a document essential to a continuing conversation, not the end of a discussion.
Christopher J. Berry is a Michigan elder law attorney Dedicated to helping seniors, veterans and their families navigate the long-term care maze. To learn more visit http://www.theeldercarefirm.com/ or call 248.481.4000