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Readers Write: We Need a More Patient-Centric Approach to End-of-Life Decision-Making
We Need a More Patient-Centric Approach to End-of-Life Decision-Making
By Ryan Van Wert, MD
Ryan Van Wert, MD is co-founder and CEO of Vynca of Palo Alto, CA and clinical assistant professor of medicine, division of pulmonary and critical care medicine, at Stanford University.
As a physician with a background in critical care, I have seen scores of patients with serious or life-limiting illnesses such as advanced cancers and dementia receive aggressive treatment in intensive care units, treatments that many of them would not have wanted. I have had heartbreaking experiences where I have put a patient on life support, and then days later, found out that a family member or loved one had uncovered an advance care planning (ACP) document indicating that this care did not align with the patient’s wishes. Far too often, I have witnessed situations in which extreme, invasive measures are taken because the dying patient’s wishes are unknown simply because they never had the important conversations about end-of-life care with their physicians and loved ones.
Today, in the midst of the COVID-19 crisis, these tragedies are unfolding in emergency rooms across the country at an alarming rate. As we enter the darkest days of the pandemic, ACP has been brought to the forefront as a necessity for patients of all ages, not just those in the more mature stages of life. Clinical resources are again being stretched to the limit, and patients are at risk of receiving critical care interventions, such as being placed on ventilators, that may not align with their personal preferences.
In addition to causing significant grief for the patient’s loved ones, this is putting great strain on the physicians who are responsible for caring for them. We need a better system to help individuals, their loved ones, and clinicians navigate the complex process of making choices for future care, along with the programs and tools to ensure they are honored.
We Must Normalize the Discussions Around End-of-Life Care
Most Americans do not want to die on a ventilator in the intensive care unit at the end of life. Most of us would prefer to receive whole-person care that is focused on comfort and well-being. However, if we do not clarify these preferences, we will receive every life-saving medical treatment and intervention possible.
We need to start normalizing discussions around future care preferences that reflect our values, choices, and goals, no matter how uncomfortable these conversations might be. We must be able to ask ourselves, what is really important to me? How do I want to live my final days? Holding these critical conversations with our loved ones, caregivers, and providers enables us to think through our preferences for future medical treatment and allows us to make important healthcare choices before we become ill or incapacitated.
That is not to say that ACP is an easy process. The conversations are inherently emotional and require bravery and compassion. Providers should be supported with the education, tools, and a standardized approach to help them guide these conversations so that their patients feel empowered. A more patient-centric approach to ACP is essential for ensuring quality of care and aligning healthcare utilization with care preferences when patients near the end of their lives.
While both patients and physicians may recognize the importance of ACP, there still lacks a standard method to engage in these conversations and make this vital information available when it is needed. Research shows that 84% of individuals who are 65 and older have not been asked by their physician to have an ACP conversation, and there is a 37% medical error rate in end-of-life care plans. In the past, even when patients have taken the time to record their wishes, in many cases the documents have been inaccurate or inaccessible across the care continuum. When physicians were asked about the confidence of locating an existing advance care plan within the EHR, only 31% of physicians strongly agreed.
Why Healthcare Organizations Must Make ACP a Priority
It is clear that hospitals and health systems need to integrate ACP conversations and digitized documentation into their standard of care, without exception. However, many healthcare organizations are continuing to struggle to implement and scale high-quality ACP, despite the fact that ACP CPT reimbursement codes 99497 and 99498 are already in place for both in-person and telehealth ACP consults. By implementing and scaling ACP, healthcare organizations can:
- Improve the patient experience. Standardized ACP enhances engagement with patients in these conversations and reflects personal goals and values, enabling organizations to provide more personalized, patient-centric care. According to The Journal of General Internal Medicine, 93% of hospitalized patients with an ACP rated their experience five stars compared to 65% without one in place.
- Provide the highest quality care. ACP reduces unwanted, unnecessary healthcare interventions at end-of-life and prevents medical errors, so patients are receiving the best care possible.
- Reduce provider burnout. Very few providers have ACP conversations with their patients, as they are not comfortable or prepared to guide these difficult discussions, resulting in limited documentation available to providers. This leads to providers having to conduct unwanted, invasive interventions, all the while knowing that these patients might be better served with palliative and hospice services versus being hooked up to a ventilator in the ICU.
- Drive success in value-based arrangements. With ACP increasingly becoming a quality measure in value-based care programs, standardized ACP drives potential success in value-based arrangements, such as BCPI Advanced and the upcoming Radiation Oncology Model.
Realizing the Benefits of a Digitized ACP Approach
To achieve the benefits of ACP, healthcare organizations need to implement a streamlined approach that normalizes ACP conversations by providing education and standardizing a system-wide program. ACP education and documents must be digitally available within the patient portal, as this enables individuals to access ACP details, review them with loved ones and make changes when needed, truly putting the patient in control of their future care.
A single source of truth for all ACP documents ensures that they are always available in the clinical workflow and eliminates confusion. It also allows clinicians to view accurate patient information, which guarantees that all future care preferences are accurate, actionable, and in one reliable place within the EHR. Unlike a paper-based approach, digitized ACP enables reporting to provide clinicians with critical business intelligence for realizing ACP utilization, success, and value.
Healthcare organizations have the opportunity to help normalize ACP, prioritize resources, and truly solve for the demand and overload we are seeing at hospitals today. By empowering everyone involved with the necessary resources and tools, you have the opportunity to make an immediate impact, delivering higher quality care at the end-of-life and, as such, ensuring for a truly patient-centric experience.
From the perspective of traditional healthcare providers’ wallets, an ACP document is only going to decrease their revenue except in rare organizations where they are a payvider or otherwise have an agreement with an insurance company.
IANAL – thanks for your comment. There are missed productivity opportunities for providers to be recognized for their time through the ACP CPT codes, directly generating revenue for the org. We frequently see dramatic underutilization of these billing codes, particularly during AWVs which is a natural point in time to have these conversations.
More and more organizations are participating in value-based arrangements. Models like BPCI-A and the new mandatory radiation oncology model include ACP as a quality measure, which ties directly to financial performance in these models.
And you’re absolutely right that payvidors and other providers who are engaged in risk through ACO or other risk-bearing frameworks stand to benefit from reducing total cost of care by avoiding unwanted interventions.
Provide high quality, person-centered care. Succeed in value based models. Increase RVU productivity. Avoid medical errors of over treatment. A major win for all stakeholders.
Brian Too – congratulations on the success you are seeing in your community around goals of care documentation, and completely agree on a comprehensive, person-centered approach that is needed more generally in how we provide care, and how the little things really matter.
My jurisdiction has gone quite some ways towards doing a better job of End-of-Life Care. MAID is now allowed. Goals of Care documents are pretty standard and the DNR orders have been around forever.
Ultimately though, this cannot simply be about End-of-Life. You need to open the doors to patient priorities and issues throughout the entire healthcare system. We’ve got one big initiative called Person Centred Care. When you ask the patient, up front, what they expect from the care episode, this sends that message.
One thing I witnessed in my family. In the hospital room of a family member, the Care Team wrote their names. It was a small but telling detail. Now you know who’s on the Care Team. Ultimately this approach will be replaced by direct patient access to the EMR, I imagine. Portions of this are ready but not the whole system.
I couldn’t agree more with Dr Van Vert but – as a patient – I often feel woefully ill equipped to create an informed ACP: eg what besides Revive or DNR, yes or no to breathing machine/feeding tube?.There may be other decisions to be made eg pacemaker, surgery, antibiotics for repeated UTI. What about relatives who disagree and fight my wishes. What about if my AD is not avail at time of crises. IMHO, there is still much work to be done to educate patients/family members so that the conversations, once normalized, can be meaningful.