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There is widespread recognition of the need to have proactive goals of care conversations with patients diagnosed with serious, life-limiting illnesses such as congestive heart failure, end-stage renal disease, and terminal cancer.
“A number of organizations are working on getting this right,” says Jill S. Lowery, PsyD, ethics policy consultant at the Veterans Health Administration (VHA)’s National Center for Ethics in Health Care (NCEHC). These include the National Academy of Medicine, the National Quality Forum, Ariadne Labs, the American College of Physicians, and the Hastings Center.
“At VHA, we are rolling out the Life-Sustaining Treatment Decisions Initiative. This is a comprehensive, national quality improvement project led by NCEHC,” says Lowery. The initiative’s aims are threefold:
1. to ensure that before a healthcare crisis threatens the patient’s ability to make decisions, the patient is given the opportunity to have a conversation about his or her goals, values, and preferences related to life-sustaining treatments;
2. to clearly document the conversation and life-sustaining treatment decisions so the information is accessible to everyone on the patient’s treatment team;
3. to honor those decisions.
“One of the things that makes this initiative unique is that it doesn’t target just one or two quality gaps,” says Lowery. “It really tries to address multiple barriers to best practice, simultaneously and at a system level.”
From its inception, the initiative was “informed and inspired by” healthcare ethics, says Mary Beth Foglia, RN, PhD, a healthcare ethicist at NCEHC. “But rather than simply addressing issues downstream in individual ethics consultations, we waded upstream to find and address the barriers to genuine patient-centered care planning,” she explains.
Some patients have living wills that include information about preferences, but these are not actionable. Such documents can be difficult to interpret, and aren’t translated into medical orders that guide care. “What we’ve done is to make it possible for patients’ goals, values, and preferences to be translated into a care plan with actionable medical orders,” says Virginia Ashby Sharpe, PhD, NCEHC’s chief of ethics policy.
In addition, notes Lowery, “a lot of things need to happen to ensure goal-concordant care for seriously ill patients.” This includes:
• strong care teams that identify patients appropriate for a goals-of-care conversation, and help prepare patients and families for that conversation;
• clinicians who are skilled in initiating and conducting goals-of-care conversations;
• a standardized, visible, and accessible place to document the patient’s goals and preferences;
• translation of the patient’s goals and preferences into durable medical orders, available across care settings, to help ensure that the patient’s wishes are carried out;
• the ability for people to easily retrieve the information during a health crisis.
“We know that if you do four of these things well, but the fifth thing isn’t there, you’re less likely to be successful,” says Lowery.
The VHA’s national policy was issued in January 2017, and the new practice standards are being implemented over an 18-month period. Facilities are expected to have fully adopted the initiative’s new standards and processes by July 2018.
“To get there, we’re providing robust support,” says Sharpe. This means regular implementation support calls, a detailed step-by-step implementation guide, technical support, policy interpretation, and an intranet site loaded with practical resources.
Before the national roll-out, the group worked with clinicians and healthcare administrators in a four-site demonstration project. Every aspect of the initiative, including the policy, was tested and improved.
“All of those subject matter experts were called on to help us think about how we would establish standards that were clinically and ethically appropriate — and also to do so in a way that was sensitive to clinical workflow,” says Foglia.
A particularly important insight: the role that multidisciplinary team members play in setting the stage for high-quality goals of care conversations with the patient. Nurses, social workers, psychologists, or chaplains can help people to anticipate issues related to life-sustaining treatments. When the patient actually meets with a practitioner licensed to write life-sustaining treatment orders, these issues have already been discussed.
The progress note template and order set were developed with input from clinicians in the field, through rigorous human factors assessment. “It was designed with sensitivity to the time that the clinicians had,” says Lowery.
It is not an easy process to make changes to the EHR in a way that works for people providing many different levels of care in various regions. The end result is that patients’ wishes are available anywhere within the VHA system. “The fact that these orders are durable and portable within VA is really distinct,” says Lowery. “That really hasn’t been available, until now.”
This means that patients won’t be asked the same questions about goals of care and treatment preferences repeatedly in different care settings. It lessens the burden on patients and clinicians, and also reduces the chance of handoff errors if patients change locations of care. “Those conversations can be revisited when it’s either clinically appropriate, or when the patient would like a change,” says Lowery.
The education was designed so that clinicians can take one module at a time and complete the training over a period of weeks, instead of completing all the modules at once. Providers are given skills training in how to initiate the conversations. “Over 80% of our facilities across the country now have trainers in place,” says Lowery.
Many ethics consultations revolve around communication, conflict, or uncertainty about values related to end-of-life treatment planning. By proactively engaging patients in a conversation about their goals and preferences as a basis for care plans involving life-sustaining treatments, then translating these preferences into portable VA orders, some ethics consults are avoided.
“The kinds of issues that the initiative addresses are actually recurrent throughout all healthcare systems when caring for patients with serious, life-limiting illnesses,” notes Foglia. Over time, many recurring issues will be addressed in a systematic way.
Ethicists can’t make these practice and culture changes alone, cautions Sharpe: “An enterprise-wide approach, including leadership support and involvement of key stakeholders from throughout the organization, is crucial.”
Other organizations can use or adapt the tools to improve the way patients’ wishes are elicited, documented, and ultimately honored. “Our hope is that the resources that we have developed will also be useful to people outside the VA who want to take very practical steps to touch on widely acknowledged quality gaps in the care of seriously ill patients,” says Lowery.
Resources on the VHA’s Life-Sustaining Treatment Decisions Initiative, including the national policy, implementation guide, and monitoring tool, are available at: http://bit.ly/2mguGy4.
• Jill S. Lowery, PsyD, Ethics Policy Consultant, National Center for Ethics in Health Care, Veterans Health Administration, Durham, NC. Email: email@example.com.
• Virginia Ashby Sharpe, PhD, Chief of Ethics Policy, National Center for Ethics in Health Care, Veterans Health Administration, Washington, DC. Email: Virginia.Sharpe@va.gov.
• Mary Beth Foglia, RN, PhD, Health Care Ethics Consultant, National Center for Ethics in Health Care, Veterans Health Administration, Seattle. Email: firstname.lastname@example.org.
Financial Disclosure: Consulting Editor Arthur R. Derse, MD, JD, Editor Jill Drachenberg, Editor Jesse Saffron, Editorial Group Manager Terrey L. Hatcher, and Author Stacey Kusterbeck report no consultant, stockholder, speakers’ bureau, research, or other financial relationships with companies having ties to this field of study.