The pandemic has highlighted many inadequacies in the healthcare system. The persistence of COVID-19 is causing stress and uncertainty for many patients and their caregivers. Those at highest risk for complications and death feel especially vulnerable. Also, the pandemic has highlighted the advantages of advance care planning (ACP) as well as the need for an ACP program that is fully integrated into healthcare systems.
NYU Langone Health, which found itself on the frontlines of the COVID-19 pandemic, has benefitted from having a robust, well-established ACP program in place. The organization spent years working to implement the program and established ACP as an expectation of good healthcare by doing the following:
- Developed a workforce skilled in facilitating unbiased conversations;
- Invested in robust documentation tools to store the richness of the conversations and share them across settings and over time; and
- Supported clinical decision-making during the care of patients with critical illness.
In the early days of the pandemic, clinicians from across the country were brought in to provide care and supplement NYU Langone’s workforce. Despite this, and in the midst of overwhelming numbers of COVID patients, the structured ACP program enabled person-centered care because it provided a set of common expectations and resources. NYU Langone was able to mobilize its interprofessional team to proactively conduct ACP conversations with patients and families, while leveraging the providers’ limited time to use that information when discussing treatment options.
The prior design and adoption of standard work by the ACP program, such as how to make a referral for ACP and where to look for prior ACP documents, allowed healthcare workers to step into an unfamiliar hospital and provide person-centered care.
Several years ago, NYU Langone implemented the eMOLST, an electronic form completion and registry for Medical Orders for Life-Sustaining Treatment. This allowed the seriously ill or frail individuals who had documented their preferences through discussions with their doctors to have documentation electronically accessible within the provider workflow.
How to Establish Such a Program
When ACP is presented as a “process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care if they become severely ill,” it limits uncertainty in the event of serious illness. Providing individuals and their families the opportunity to explore this topic together, prior to a medical crisis, has been shown to be important to patients, many of whom report wanting to talk to their medical providers about ACP. They view ACP as a way to prepare their families and lessen their loved ones’ decision-making burden. Despite this, ACP has not been consistently available to—or completed by—patients.
This leaves families confused about how to advocate for what care their loved ones would or wouldn’t want in a crisis. Healthcare teams are left uncertain about how to navigate the differences between “what can be done” in modern medicine and “what should be done,” based upon what matters most to an individual patient.
The Coalition to Transform Advanced Care (C-TAC) and its affiliate Respecting Choices, advocate an integrated, systematic approach to implementing ACP programs. Organizations and communities across the nation need to implement ACP programs to gain the following benefits:
- Empower patients to self-advocate;
- Support for caregivers who are placed in a decision-making role; and
- Support for clinicians who suffer moral distress when caring for patients without knowing their preferences for care.
Historically, there has not been a consistent understanding of the importance of establishing a formal ACP program that helps patients to receive care aligned with their goals and values. Without a program to provide structure, attempts at ACP often fall short. For example, when a healthcare agent has been identified by an individual, they may not have yet had the crucial conversation.
In many situations, advance directives or other forms are not consistently completed. As a result of these gaps, important healthcare decisions are often made during a crisis, by agents or loved ones who may be unaware of the patient’s true wishes and care goals. In the best of times, this creates suffering on the part of patients, families and clinicians dedicated to providing care aligned with individual patient values. The potential for this suffering has only been magnified during the pandemic.
NYU Langone Health provides a powerful example of how an established and standardized ACP program can help healthcare organizations be good stewards of limited time and available clinicians, while still honoring patient’s preferences and values in the context of this healthcare crisis. ACP should be the standard at healthcare systems nationwide.
Carole Montgomery, MD, FHM, MHSA, is executive medical director, Respecting Choices, a Division of C-TAC Innovations.