Promoting Multifaceted Interventions for Care of the Seriously Ill and Dying

There is always an easy solution to every human problem—neat, plausible, and wrong.

H.L. Mencken, 1917¹

For the past 4 decades, research, payment policy, and quality measurement have focused on advance directives—and later, on single-focus interventions such as educational videos on advance care planning (ACP)—as neat, plausible, and easy solutions to improve decision-making about end-of-life care and address potentially “wasteful” spending at the end of life. Since 1998, I have written 4 commentaries^2-5 that have tried to make 3 points about this issue. First, multifaceted interventions are needed to address the psychologically complex process of improving decision-making at the end of life. Second, the specificity of the content of those efforts should be targeted based on an individual’s disease trajectory. And third, preferences for decisions or outcomes that can be anticipated should be linked to a care plan to achieve a person’s goals of care, if possible.

Early in my career, I worked with a patient to complete a written advance directive that specified preferences for no further hospitalizations. But when the patient—a frail, older person with chronic obstructive pulmonary disease—developed terminal dyspnea, no pharmacy would deliver opiates in the middle of the night to that high-crime part of the city. The patient ended up in the hospital, and I learned an important lesson: to ensure that the patient’s ACP goals can be achieved, ACP must be clearly linked to care plans that anticipate symptoms.

A recent review assessed 69 randomized trials published since 2010 designed to promote advance directives or ACP.⁶ Most of these studies were pragmatic, single-focus ACP interventions. Watching a video about ACP is viewed as pragmatic—a simple, easy-to-implement intervention. But its efficacy for the healthy population and even for seriously ill residents in nursing homes is questionable, based on these randomized trials. Only 5 of the 12 trials reported an effect on health care utilization, and only 1 of 10 reported affecting goal-concordant care. On the other hand, 9 out of 15 trials did report a positive effect on mental health outcomes. This benefit of discussions about end-of-life care is underscored in a moving essay by J. Randall Curtis, MD, MPH, that recounts 3 stories of serious illness—of his mother-in-law, his mother, and his own heart-wrenching story of living with amyotrophic lateral sclerosis. He points out that ongoing communication about the goals of care for future events may provide important psychological benefits to both the seriously ill person and their family, as it has for his own family.

It is not surprising there is not a clear consensus from randomized trials that such single-focus ACP interventions affect goal-concordant care or reduce health care expenditures. In contrast, Oregon’s Physician Orders for Life-Sustaining Treatment (POLST) program, which allows frail patients with advanced illness and their clinicians to document patients’ preferences on the use of life-sustaining treatment with medical orders that can be honored across care settings, played a role in part in the striking difference in end-of-life utilization patterns in Oregon. There, patients who are dying are less likely to be hospitalized and more likely to use hospice services at home compared with their counterparts elsewhere in the US.^2,3 As Susan Tolle, MD, chair of the Oregon POLST coalition, has noted, it is not just the bright pink POLST form but also the importance of a series of multifaceted interventions that improved end-of-life care in Oregon, including public education, changes in state law that allowed emergency medical services staff to honor a POLST form, a state registry of POLST forms to provide emergency access to these documents, and health care professionals such as hospice workers facilitating timely transfers from acute care hospitals.^2,3

Current evidence does not support further testing of pragmatic single-focus ACP interventions or their use as quality measures or as payment policy. At best, the Centers for Medicare & Medicaid Services policy to pay physicians to talk to healthy older persons at their “Welcome to Medicare” visit about ACP may result in the important consequence of the patient naming a proxy decision-maker, which is an important clinical tool especially for those persons estranged from their family; at worst, it may be a waste of valuable resources.

However, clinicians certainly should not abandon ACP—nor serious illness communication that includes discussion about care now and future treatment decisions when the likely treatment decisions or outcomes can be anticipated. The artificial separation of ACP from serious illness communication—discussions with a seriously ill patient about immediate care and anticipated care in the future—is not helpful. As a hospice physician who has admitted more than a thousand persons to hospice inpatient units, I have routinely discussed treatment plans for current care and preferences for maintaining alertness while dying. Patients changed their preferences only on rare occasion, though this may be more common in intensive care units. There is striking complexity in the psychology of these conversations that concern difficult decisions that weigh longevity vs quality of life, and compassion and empathy are key.

Clinicians can offer seriously ill persons and their families the opportunity to have this ongoing communication. This is not a one-time discussion, and persons should not be forced to have conversations that they are not willing or ready to have, unless the urgency of not discussing a decision is indeed making a decision. Different individuals and families have different wants and needs regarding the content and specificity of these conversations, and the specificity will change over the disease trajectory of a serious illness. Many persons simply are not advance care planners. Rather, they trust their family to make the best decision—and that is their right.

Efforts to measure the quality of these conversations should rely on multiple survey items focusing on key processes of care, rather than on a single item. Research is needed to develop and validate a composite measure of multiple items to ensure that it has the necessary psychometric properties to act as an accountability measure. Such research also should be prioritized to support payment policies with valid quality measures to reward high-quality care and avoid unintended consequences.

Our moral obligation as physicians is to help dying persons and their family members make important health care decisions consistent with their values and to make treatment plans that can accomplish those goals if feasible, all while navigating a somewhat dysfunctional health care system. Simply stated, it is well past time to move on from simplistic single-focus, pragmatic ACP interventions toward the multifaceted interventions that are needed to address the psychologically complex process of improving decision-making at the close of life.

Published: April 7, 2022. doi:10.1001/jamahealthforum.2022.1113

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2022 Teno JM. JAMA Health Forum.

Corresponding Author: Joan M. Teno, MD, MS, School of Medicine, Oregon Health & Science University, 3181 SW Sam Jackson Park Rd, Portland, OR 97239 (jmteno76@gmail.com).

Conflict of Interest Disclosures: Dr Teno reported receiving grants from the Center for Medicare and Medicaid Innovation for evaluation of the Value-Based Insurance Design (VBID) Hospice Carve-in and from Centers for Medicare & Medicaid Services as an expert consultant advising the team evaluating the VBID Model Hospice Benefit. This JAMA Forum post is independent of that work.

Disclaimer: This post represents the opinions of the author; it does not represent the views or policies of the US Department of Health and Human Services, nor does the mention of trade names, commercial products, or organizations imply endorsement by the US government.