This article first examines their differing approaches and the practical problems resulting in creating advance directives. It then describes an interdisciplinary project undertaken by the ABA Commission on Law and Aging with key partners to develop a unified set of practice principles for both lawyers and clinicians in addition to an advance care planning practice checklist designed specifically for lawyers that brings counseling practices more in alignment with the clinical realities clients face.
Advance care planning research literature strongly identifies the process of repeated, meaningful reflection and discussion among patient and family and health care providers as a critical factor in effective advance care planning.
While the existence of an advance directive makes a difference, the real driver for having patients’ wishes known and honored is the conversation before and during any clinical episode.
In other words, advance directives documents, in and of themselves, without additional preparation and discussion, have minimal effect on end-of-life decision-making.
This is where the differing approaches between lawyers and clinicians cause a disconnect.
Lawyers tend to see advance care planning primarily as a legal matter, centered on patient autonomy and the creation of legally recognized advance directives. Health care professionals see it as a clinical matter involving not only patient autonomy, but also a pursuit of the patient’s best interests in light of evolving clinical facts, treatment options, often uncertain risks and benefits, and the goal of engaging whatever family unit is involved in the patient’s care.
The divergence in approaches has a historical root. Living wills or medical declarations emerged in legislation in the 1970s and health care powers of attorney in the 1980s. These laws created a legal transactional template for advance planning that focused on ensuring knowing and voluntary execution of the directive and imposing a multitude of legal formalities, ranging from detailed execution requirements to mandatory language and forms.
Because the culture of medicine at that time was so heavily tilted toward using new technologies in pursuit of organ-sustaining measures at all costs, almost all advance directive legislation included the carrot of immunity for health care providers for complying with patients’ stated wishes.
Since the early legislative enactments, some states have sought to ease up―at least partially—on the legal template applied to advance directives, while on the clinical side, consensus over best practices has changed dramatically. The clinical concept of advance care planning has evolved into an ongoing, holistic, shared communication process about goals of care, priorities, and wishes in the face of serious and eventually fatal illness.
In clinical practice, countless initiatives and protocols have emerged with the goal of supporting patient- and family-centered care, shared decision-making, and meaningful advance care planning. Many of these initiatives have grown part and parcel with the growth of the discipline of palliative care.
In practice, health care systems and professionals as a whole still have a long way to go to catch up to the state-of-the-art concepts and skills advocated by clinical leaders in advance care planning, but the wheels are in motion. In contrast, in the legal professional world, less progress is visible.
To impact legal advance care planning practices positively, the ABA Commission on Law and Aging, with key partners, set out to develop a unified set of usable, actionable, best practice principles for both lawyers and clinicians as well as an advance planning practice Guide specifically for lawyers that is in alignment with the best clinical practices and better addresses the realities clients will face in clinical settings.
The ABA Commission on Law and Aging collaborated with the American Academy of Hospice and Palliative Medicine, the University of California at San Francisco Medical School, and the UC/Hastings Consortium on Law, Science & Health Policy to undertake this initiative. The project was funded by the John A. Hartford Foundation with supplemental funding from the Borchard Foundation Center on Law and Aging.
The project team identified a panel of legal practitioners, clinicians, and academics who are considered experts in advance care planning. The experts were invited to a one-day working summit to identify best practices to assist clients, patients, and their families in meaningful and effective advance care planning.
Prior to the summit, the project team conducted telephone interviews with summit invitees individually. Interviewees were asked about their current practices in advance care planning and what they thought could be done to improve advance care planning and communication with the patient’s clinicians.
The interviews were recorded and summarized for the summit attendees. The one-day summit convened in March 2018 included 35 participants, equally divided between lawyers and clinicians, many of whom brought both practice and academic credentials. The resulting principles and guide were circulated to summit participants for review and comment, resulting in several changes to content and organization before a final version was completed.
A key convergence of view was that practice guidelines are most needed for lawyers and that structuring them in the form of a practice checklist would be most effective. Based on the summit discussion and consensus points, the project team developed a set of practice principles applicable to both lawyers and clinicians; a lawyer’s checklist for counseling clients on advance care planning; and a resource list of self-help advance care planning tools to be made available to clients.
These products have been combined in the project’s publication Advance Directives: Counseling Guide for Lawyers (Guide).
The Practice Principles
The advance care planning practice principles serve as the foundation for the checklist and resources. They provide a conceptual framework intended to align the practices of lawyers and health care professionals with the realities of health care decision-making in clinical settings. The principles, set forth below, are informed by current evidence of what makes advance care planning effective in healthcare settings and a growing body of health decisions literature.
- Proxy Designation: The most important legal component of advance care planning is careful selection and appointment of a health care agent/proxy in a valid power of attorney for health care document. Persons who cannot or do not want to identify a proxy should delineate their wishes in an advance directive.
- Ongoing Process: Advance care planning takes place over a lifetime. It changes as one’s goals and priorities in life change through different stages of life and health conditions. Reflection, discussion, and communication with one’s proxy and clinical professionals, along with family, friends, and advisors are essential to having one’s wishes understood and honored. These discussions should occur with patients/clients of all ages at all stages of life and health.
- Values, Goals, and Priorities: Discussion should focus on one’s values, goals, and priorities in the event of worsening health rather than on specific treatments or clinical interventions for distant hypothetical situations.
- Advance Care Planning Tools: Advance care planning tools and guides can provide structure and guidance to the process of reflection and discussion and help individuals identify their values, goals, and priorities, and ensure more authentic and useful conversations and advance directives.
- Advance Directive: Instructions and guidance documented in an advance directive should result from the process of information sharing, reflection, discussion, and communication and provide enough flexibility in application to allow surrogate decision-makers to respond to new circumstances and complexities.
- More serious illness: If individuals are facing serious diagnoses, such as cancer, or have been told they have a limited prognosis, the focus may then move to specific treatment preferences. In these cases, the person’s primary/key health care provider should also meet with the client and/or their closest loved ones to create a care plan that aligns with the client’s goals, values, and preferences. For advanced illness, medical providers should consider introducing palliative care options and the option of providing medical orders such as Physician’s Orders for Life Sustaining Treatment (POLST) to ensure the individual’s wishes are translated by medical professionals into actionable medical orders.
- Sharing Documents: Documentation of one’s values, goals, and wishes in the form of an advance directive or another record should be shared with one’s proxy, loved ones, significant others, and primary/key health care providers, and be included in the medical record, so that they are adequately informed before a crisis arises.
- Coordination: Lawyers and health care professionals should aim for greater coordination of advance care planning efforts with the healthcare system/medical providers through congruent advice and practices in accordance with the principles above, greater willingness to reach out to one another with client/patient consent to obtain information when needed, and greater collaboration in joint continuing education programming.
The Checklist is divided into three stages: pre-meeting, first client meeting, and second client meeting. The Checklist is a counseling tool and not a checklist for drafting the client’s advance directive. The latter task is too state-specific to prescribe in a nationally usable checklist.
The heart of the Checklist focuses on healthcare agent selection and client values, priorities, and wishes, borrowing from an online advance care planning tool developed by Rebecca Sudore, MD, 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.
However, a key emphasis of the Checklist is to encourage clients to do more on their own, because an extended meeting with legal counsel is not something most clients will pay for. The Guide recommends that lawyers offer clients one or more advance care planning tools to use on their own and in discussion with family and health care providers. The resource list included with the Checklist references a variety of effective tools because no one tool will likely appeal to every client.
Also, part of the Checklist is a sample letter from the lawyer to the client’s physician to serve as a model for connecting the planning process to the client’s health care provider and getting the advance directive into the medical record. Many barriers prevent advance directives from being present in the medical record when needed, so this initial conveyance of the directive, which requires client consent, does not solve all problems. But it takes an important first step. In addition, providing multiple copies of the advance directive or an electronic copy to the client enables the client to share it with its significant others.
A final key element of the Checklist is the emphasis on the continuing nature of advance care planning. Too often, when an advance directive is signed, the client assumes that the task is done. In reality, the planning process continues throughout life as health or living circumstances change, and as the individual experiences serious illness and deaths among one’s friends and loved ones. Therefore, the Checklist uses a simple mnemonic to communicate this point. Clients should be encouraged to revisit their advance care plans and documents whenever any of the “six Ds” occur:
- You reach a new DECADE in age.
- You experience a DEATH of a loved one.
- You experience a DIVORCE.
- You receive a DIAGNOSIS of a significant health condition.
- You experience a significant DECLINE in your functional condition.
- You change your DOMICILE or someone moves in with you.
It is hoped that lawyers will use the Guide (which includes the Checklist), adapt it to their practices, and even improve it as they learn what works best for them. The full Guide is downloadable for free at https://www.americanbar.org/groups/law_aging/resources/health_care_decision_making/ad-counseling-guide.
The webpage also includes a Word version of the Checklist so that lawyers can incorporate the text into their own office systems and adapt it as desired.
A published print version of the Guide can be purchased for $19.95 in the ABA Store (https://www.americanbar.org/products/inv/brochure/346598312/).