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 causes 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 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 advanced 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; and 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 setting.