Not Your Grandma's Advance Care Planning: Preparing (Ourselves) for a Systems-Based Approach

Dear Editor:

High-quality advance care planning (ACP), although considered an essential part of patient care, cannot be practiced even by committed clinicians individually. It must be practiced as part of a large system, to identify patients at risk, develop triggers to assure timely discussions, train clinicians to conduct effective discussions, incorporate a checklist or conversation guide to support clinicians, and structure documentation centrally in the electronic health record. ¹ Without centralized processes, rates of ACP are low (approximately one in three U.S. adults complete any type of advance directive for end-of-life care) ² and individual practitioners are left scrambling to coordinate complex discussions between multiple providers in multiple settings. However, the need for a large-scale systems approach has also stymied adoption.

There is now a chance for change. There is a growing national interest in serious illness care that arises from the confluence of not only external pressures such as an aging population with serious illness, a shift toward team-based care, patient demand as evidenced by a growing interest in literature on aging, death, and dying, and an evolving payer structure that increases the proportion of patients in accountable care organizations but also internal developments. In particular, an increased interest in serious illness care has been promoted by the creation of scalable systems-based approaches to high-quality ACP such as Respecting Choices ³ and Ariadne Labs' Serious Illness Care Program. ⁴ If channeled toward systems change, these forces provide the drive and the means to embed high-quality ACP deeply into hospitals and care organizations in large diverse settings. To facilitate this change, this piece offers a vision for a high-quality ACP system and how to get there.

A high-quality ACP system uses a coordinated approach to engage all seriously ill patients in the process of ACP, when and where they need it. To do so, ACP must expand along three axes: time, place, and people. Each axis pushes our practice from the current siloed approach toward an organized system, and all three axes are united around the medical record.

1. Time. The idea that ACP is a process that happens over time is becoming familiar. In the last two decades, as ever more data have shown advance directives to be ineffective, ⁵ ACP for seriously ill patients has been shifting away from the common practice of one-time document completion toward a process that unfolds over time. To integrate the realities of illness and prognosis with hope, patients and families need time. However, there is much variability in how clinicians approach the process, with conversations ranging from discussions about completing healthcare proxy forms to refraining from CPR to existential issues. ⁶ Now, ending many years of uncertainty about what clinicians are to do, a 2017 consensus definition of ACP helps clarify the process: to support adults in understanding and sharing personal values, life goals, and preferences regarding future medical care so that care is consistent with their wishes. ⁷

2. Place. Less familiar is the idea that ACP should happen in multiple settings. With a systems-based approach, ACP is not confined to the outpatient setting. It happens over the phone and in the hospital, in the post-acute care setting, in the home, and even in the emergency department. ⁸ This dispersed approach meets the needs of sick patients. Patients too sick to come to clinic, who are homebound or shuttling between acute and post-acute settings, can obtain ACP without having to get better. Offering ACP in a variety of settings also creates opportunity, increasing the likelihood that patients engage when ready. Such ACP may be an in-depth conversation or a brief check-in. Across place and time, conversations should build on each other, like stitches in a tapestry.

3. People. High-quality ACP welcomes and coordinates the work of clinicians from diverse specialties; it is interprofessional and team based. While traditional ACP was largely the purview of the primary care clinician or specialist in a dyadic relationship with the patient, high-quality ACP recognizes that the ACP needs of seriously ill patients are beyond the capabilities of one clinician. To support patients through a multiconversation process across settings, we must broaden our expectations of who should provide ACP. Clinicians who have not traditionally been responsible for ACP will be asked to expand their role with seriously ill patients and will need training in providing ACP and in systems redesign, to consider how to prioritize critically important, but nonurgent conversations in busy settings. Those clinicians traditionally responsible for ACP will be asked to participate in a complex process that requires coordination and sharing of the intimacy of these conversations. Interprofessional clinicians such as care managers, nurses, social workers, and chaplains will be invited to work with physicians to initiate, conduct, contribute to, and document discussions. All clinicians will need to learn how to coordinate conversations so that patients know that their team is working together.

Implementation Requires Training and Accountability

Shifting the habits of all clinicians within a hospital system caring for patients with serious illness toward a systems-based approach requires a multistep intervention. Clinician training is one element of implementation, but in our experience, training needs to be followed by ongoing support, including coaching, to support clinicians in initiating conversations that can feel emotionally challenging, and accountability, to reinforce behavior over time. For example, in our health system, components of the Serious Illness Care Program are incorporated into departmental and organizational quality metrics. In addition, clinicians need to be involved in the process of patient identification, to ensure buy-in and confirm identification of the right patients.

None of These Improvements Are Possible without a Better Electronic Health Record

With many clinicians involved over time and space, a centralized ACP module in the electronic medical record becomes indispensable. It is essential for coordinating discussions, which lose their value if they are not easy to find, so that clinicians can build on each other's work. Centralized documentation helps avoid overcommunication—when patients are approached for the same conversation by clinicians unaware of previous discussions—and ensures that patients receive consistent information and key members of the healthcare team know about prior conversations. Finally, a well-developed electronic medical record can support the other necessary pieces of systems-based ACP such as identification of patients at risk and triggers to prompt timely discussions.

High-quality ACP is not possible without the commitment of the major electronic health record providers to develop robust ACP modules that enable clinicians to work together (Epic and Cerner currently hold 50% of the hospital electronic health record (EHR) market share). ⁹ ACP modules must be centrally located, like allergy information, so that all clinicians can easily find needed information. They must also be able to display conversations sequentially, like a flow sheet, so that clinicians can understand how patients are integrating and adapting to evolving prognostic information. Finally, ACP modules must be able to be incorporated into existing workflow.

The good news is that, for all its complexity, a high-quality ACP system improves healthcare by encouraging clinicians to communicate effectively and build relationships, not just with patients and families, but with each other. If we can get this change right, we help ourselves and our patients.