In a recent study published in Health Affairs, researchers reviewed 150 studies published between 2011 and 2016 that looked at the proportion of adults who completed advance directives. Of nearly 800,000 people, 37 percent completed some kind of advance directive. Of those, 29 percent completed living wills, 33 percent filed health care proxies and 32 percent remained “undefined,” meaning the type of advance directive wasn't specified or was combined.Historically, one in three U.S. adults have engaged in advance care planning and/or completed advanced directive documents, intended to specify the kinds of medical treatments they might wish to receive if they were incapacitated or no longer able to express their wishes—and who they might choose to speak on their behalf in such circumstances.
The COVID pandemic changed so many things for people all around the world, and one of the biggest changes was to focus new attention on serious illnesses and the need to prepare for the unexpected. Patients infected with COVID suddenly became very ill. A rapid onset of acute respiratory distress syndrome and inflammatory response could land them in an intensive care unit, perhaps attached to mechanical ventilation, sedated, unable to participate in goals-of-care conversations with their clinicians.
Mortality rates for such patients were very high, especially at first, before clinicians could find and test effective treatments for these devastating infections. A total of 616,174 Americans have died of the virus as of this writing, an event of such historic scope that it actually caused average life expectancy in this country to go down by more than a year, the largest drop since World War II.
In many circumstances, family and friends were not allowed to be at the bedsides of COVID patients—or other hospitalized patients—because of fears of rapidly spreading the virus. Physicians and other hospital staff tried to limit their own exposure to patients, or else met them while wearing emotionally distancing personal protective equipment, such as masks, gowns and visors. Often a phone call was the only way to facilitate any kind of dialogue involving patients, families and clinicians to clarify if they would want mechanical ventilation or other life-sustaining measures.
For anyone paying attention, the unmet need for doing advance care planning in advance of a serious illness, with professionally guided conversations to elicit deeply held values and goals of care, was never more obvious. Yet circumstances also posed barriers to those conversations and challenged clinicians, advocates, patients and families to find new approaches to act on this new understanding of the importance of planning for future medical needs.
Did COVID Increase Advance Care Planning?
Evidence of whether our responses to the pandemic have actually increased the dissemination of organized advance care planning or the completion of advance directives such as living wills or durable power of attorney for health care decisions is fragmentary so far, little more than a year after the first big COVID surges hit New York City, California and other locales. However, some of the findings to date show more and more ill individuals seeking to create advance directives, have goals-of-care conversations and inquiring about advance care planning.
Catherine Auriemma and colleagues from the University of Pennsylvania, in a JAMA Open Network study published in July of 2020, found a five-fold increase in online advance directive completion, as well as more comprehensive completion of these documents, since the onset of COVID. “The increased demand for advance directive documents might be explained by an increased sense of importance for future care planning owing to COVID-19-induced hospital visitation restrictions… or because COVID-19 has provided new motivation for patients who have long wanted to complete advance directives but previously failed to do so,” they note.
Danielle Funk, et al., from the West Virginia Center for End-of-Life Care found that the nature of calls to this center, which was authorized by the state to administer the West Virginia e-Directive Registry, changed during the pandemic to include urgent desire to initiate advance care planning, temporary rescindment of treatment-limiting forms, and questions on how to honor patient wishes. In a study published in The American Journal of Pain and Symptom Management, they found more advance directives completed in the first six months of 2020, compared with a similar time period during the previous five years, and a new sense of urgency regarding advance care planning by West Virginians.
Brian Block, MD, and colleagues at the University of California-San Francisco, writing in the Journal of the American Geriatrics Society on May 15, 2020, noted: “We see an urgent need to prepare older adults and other at-risk populations for the possibility of severe illness through a massive upscaling of advance care planning in outpatient and nursing home settings,” leveraging message capacity through patient portals and other mediums for communication.
Where Do We Go from Here?
The great unknowns of the pandemic are being replaced with a desire to get back to the old normal. Most of us are not going to soon forget the impact of the pandemic. But how will it drive behaviors as COVID fears fade? Will the lessons of COVID drive new trends, new practices and new understandings of why having a care plan in place for a future medical crisis is important? The collective experience during the pandemic has inspired an increased interest in these subjects among seriously ill individuals and their loved ones. How can healthcare organizations leverage this experience to promote greater engagement and participation of their members and patients in advance care planning?
New approaches, technology enhancements and new connections are reshaping the landscape of advance care planning. How discussions get recorded and documents disseminated will continue to evolve as advocates seek to mitigate barriers such as the legal language, need for witnesses, state-to-state variations and lack of portability. A variety of approaches are needed, offering flexible pathways tailored to the preferences and habits of the individual.
Iris has developed a comprehensive set of tailored Advance Care Planning solutions delivered with expert guidance and cutting edge technology to scale the delivery of goals of care discussions and advance directive completion for the seriously ill and healthier populations. Our solutions guide members through the full lifecycle of advance care planning including creation, signing, and distribution of documents to care teams and loved ones.
This creates a supportive process for members while also reducing the time-intensive burden of ACP discussions for provider physicians. We take ownership of the integration and delivery of Advance Care Planning and expanding access to Palliative Care and Hospice while keeping clinical teams informed. Our powerful suite of tech-enabled ACP solutions allow healthcare payers and at risk organizations to provide a meaningful and beneficial program to members while taking the burden off of internal resources, driving appropriate care utilization and cost savings across organizations.
Iris ACP solutions can be tailored to meet specific organizational and member needs. By risk stratifying populations, our solutions are targeted to specific member segments based on demographics, disease acuity and technical ability in order to offer universal access to advance care planning.
If you’d like to learn more about how Iris’ suite of Advance Care Planning services can help your plan optimize performance while offering a beneficial service to your member population, contact us today.