What’s Wrong With Advance Care Planning?

R. Sean Morrison; Diane E. Meier; Robert M. Arnold

doi:10.1001/jama.2021.16430

Viewpoint

October 8, 2021

What’s Wrong With Advance Care Planning?

R. Sean Morrison, MD^1,2; Diane E. Meier, MD¹; Robert M. Arnold, MD³

Author Affiliations Article Information

¹Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, New York
²James J. Peters VA Medical Center, Bronx, New York
³Section of Palliative Care and Medical Ethics, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania

JAMA. 2021;326(16):1575-1576. doi:10.1001/jama.2021.16430

Full Text

Advance care planning (ACP) has emerged during the last 30 years as a potential response to the problem of low-value end-of-life care. The assumption that ACP will result in goal-concordant end-of-life care led to widespread public initiatives promoting its use, physician reimbursement for ACP discussions, and use as a quality measure by the Centers for Medicare & Medicaid Services, commercial payers, and others. However, the scientific data do not support this assumption. ACP does not improve end-of-life care, nor does its documentation serve as a reliable and valid quality indicator of an end-of-life discussion.

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13 Comments for this article

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October 8, 2021

Other Problems

Faye Girsh, Ed.D. Human Development | Founder, Board member, Hemlock Society of San Diego

The biggest problem among our members -- mostly women, alone, old -- is not being able to find a suitable surrogate. Many use physician orders for life-sustaining treatment (POLST) instead. The specificity of that document and its presumed preferred legal status makes it easier to use; it also doesn't require naming someone. Are there data on whether this type of document is more successful in achieving patients' wishes than an advanced directive (AD)? The other problem our members have with the AD is that many would want aid-in-dying if they had dementia or a difficult ending. Directives expressing this wish are probably unlikely to be followed if this request were made and, so, become irrelevant. This paper definitely revises what we tell people about their end-of-life preparation.

CONFLICT OF INTEREST: None Reported

October 9, 2021

A Practitioner's View of Advance Care Planning

Richard Reiling, Clinical Professor of Surgery | Wright State University School of Medicine

One of the difficulties in advance care planning (ACP) and its effectiveness is that those who draw up rules or criteria most often have never really been in a position to apply the concepts. As a former director of a surgical intensive care unit and at the end of my career as a medical director of several large cancer centers, I have personally been involved in convoluted rules and criteria and documents and concepts drawn up by a patient's legal counsel. When the time comes it is too late to unravel the tangles of bureaucracy and be able to adequately discuss with the patient and more than often the family what the patient really wants and understands. While I agree with the concepts presented in this paper, I also feel that there will never be a real resolution for the reasons that I have enumerated. And this goes for the DNR wishes! It would be helpful to keep the lawyers out of the process and not permit legal threats against the physician and team. Finally, one of the biggest hindrances is lack of agreement among the next of kin, especially when there has been family division prior to any illness and in family fighting occurs. The physician team just cannot take the risk in those cases when a wayward son or daughter insists on a position with the threat of legal activity, even criminal charges.

CONFLICT OF INTEREST: None Reported

October 10, 2021

Implications for Palliative Care Advocacy Groups such as CAPC

Anna Rahman, Ph.D. | Gerontological Research Consultant

Based on this commentary, would you recommend that palliative care advocacy groups, such as the Center to Advance Palliative Care (CAPC), which Dr. Meier founded and lead for many years and which continues to advocate for advance care planning (ACP) on its website (1), cease promoting ACP?

CAPC and other similar palliative care advocacy groups helped spearhead the widespread adoption of ACP, including its use as a quality indicator, so I believe, given your present commentary, that these groups should now help lead the charge to "disinherit" ACP. What do you think?

Reference

1. https://www.capc.org/training/building-physician-skills-basic-advance-care-planning/

CONFLICT OF INTEREST: None Reported

October 12, 2021

Two Steps Forward, One Step Back

Magnolia Cardona, PhD, MPH, MBBS | Gold Coast University Hospital, QLD, Australia

Let’s not throw the baby out with the bathwater. The advance care planning (ACP) movement has made enormous progress in encouraging people to discuss their care preferences before crisis time. That’s already a gain and a culture change. Preparation for a good death based on hypothetical scenarios has been necessary because we don’t have a crystal ball to anticipate what our sudden critical illness will be. ACPs can be updated to reflect any change of mind or circumstances. If we cease that initiative now and go back to the “in the moment” decision approach (assuming the patient can talk and the health proxy is in a state to decide) we might be risking more decisional regret among survivors. Perhaps a compromise position would be to promote the “statement of choices” where a person states in general terms what states of health are unacceptable and not worth living in. No mention of condition names or words like ‘terminal’ are required. Perhaps the terms ‘irreversible’ or “no prospect of survival in acceptable quality of life” may be more helpful in conveying the patient’s wishes to guide clinicians in shared decisions with the family. @endoflifeAUS

CONFLICT OF INTEREST: None Reported

October 12, 2021

Looking on the Brighter Side

John Goodill, M.D. | Christianacare Health System

I appreciate the perspective that we have put a lot of time and effort into Advance Care Planning (ACP) over the years and have difficulty showing a positive impact.

From the perspective of day-to-day care at the bedside it seems more positive. When compared to 30 years ago it seems like more people have an advance directive (at least those with a serious medical condition) and know how it works; more providers are learning how to conduct/document quality conversations on goals of care; there are tools to make these conversations accessible for real time care decisions and conversion to medical orders near the end of life (physician orders for life-sustaining treatment (POLST)). I put all of this under the umbrella of ACP.

As I work with surrogate decision makers of all sorts because patients with serious illness frequently have impaired decisional capacity, I am constantly reminded of a quote by Ira Byok: 'I have an advanced directive (AD) not because I have a serious illness but because I have a family'.

The improvements I see in ACP are far from optimal. ACP is messy, complex and full of missteps much like the human condition itself. It is hard to get it exactly right for every person every time.

But let's keep trying.

CONFLICT OF INTEREST: None Reported

October 17, 2021

A Call to Action

Stuart Pickell, MD, MDiv | Chair of Texas Talks, Associate Professor, UNTHSC-TCU School of Medicine and former Chair, North Texas Respecting Choices

One of the problems with studies designed to measure advance care planning (ACP) initiatives is that they require quantifiable metrics that when taken in isolation don’t mean very much. The authors correctly identify eight points where the execution of an advance care plan may break down. However, the problem isn’t the plan, it’s the process. Did the studies control for the variables that hinder the plan’s execution?

Rather than pivoting away from ACP initiatives I see this as a call to action to improve the processes that prevent them from being successful. In our organization we did a study (that we didn’t but should have published) that controlled for these variables and demonstrated a significant improvement in patient preferences being honored, family satisfaction, and cost reduction in the last 6 months of life. As a result, I remain optimistic about the value of advance care planning initiatives because I know that, done correctly, they work.

CONFLICT OF INTEREST: None Reported

October 27, 2021

Of Straw Arguments, Conflation, and Alternatives

Nathan Kottkamp, JD, MA (Bioethics) | Founder, National Healthcare Decisions Day

As an advocate of advanced care planning (ACP) I am troubled by this article. It seems to be another variation of the authors' previous pieces that criticize ACP without either clearly defining it or offering meaningful alternatives.

The straw man here sets up ACP as unhelpful, if not worse, but fails to provide a specific definition of what is being criticized. The conflation here is that the designation of and collaboration with a health care proxy is, itself, a core form of ACP.

Despite their criticism of "ACP," however they conceive of it, the authors fail to offer any meaningful alternatives to decision-making in the absence of capacity. To be sure, if the authors' point is that written statements of care choices are no good, then they need to say it, but arguing against "ACP" while seeming to advocate for health care proxies confuses the matter, at best.

It strikes me that articles like this miss one of the key issues with ACP: it hasn't been implemented in a systematic and meaningful way. In the absence of a viable alternative, we need to look at how ACP is implemented in the real world. Among other things, it is often an after-thought matter or a matter of check-the-box compliance with little or no integration into care (e.g., facilities where 100% of patients are asked by the registration clerk about having an advance directive, but the answer is often meaningless and those who answer "yes" rarely have them in their medical record and even more rarely have them integrated into the delivery of their care).

Before we criticize ACP, we need to commit ourselves to a goal that every patient and every admission has an ACP of some sort (a written directive, a named proxy, or both). Until then, it is premature to dismiss the utility of ACP--at least, not in the absence of some other ethically acceptable method of making decisions for patients who cannot make them for themselves.

CONFLICT OF INTEREST: None Reported

November 3, 2021

What’s Right with Advance Care Planning?

Jessica Simon, MB ChB, FRCPC | On behalf of committee members of the International Society of Advance Care Planning (ACP-i)

This provocative commentary warns against slipping into complacent thinking about advance care planning (ACP). The negative title obscures the global evolution of ACP definitions, processes, and efforts that are striving towards shared decision-making and person/relational-centred health care (1).

What is ACP?

As committee members of the International Society of Advance Care Planning (ACP-i) we disagree that ACP emerged in response “to the problem of low-value end-of-life care.” ACP emerged in response to paternalistic medical decision-making -- “Nothing about me without me” -- and as a way to hear patient values even if capacity is lost (2,3).

International consensus definitions of ACP frame it as preparing for “serious illness” (4,5). ACP processes include healthy adults; it’s about preparing those close to us and our healthcare providers so they can take the best care possible. This shift is reflected in our name change from “International Society for ACP and End of Life” to ACP-i.

Why are ACP Results Mixed?

Look closely at the evidence cited before concluding ACP “does not have the desired effect.” The reviews describe great variability in how ACP was “defined and conceptualized”, the focus of ACP interventions, health sector contexts, study designs and outcomes. One concluded, “Outcomes for all ACP interventions were predominantly positive” (6) and another described features associated with effective interventions (7).
We agree that “the history of ACP is the story of science working.” Prior study limitations are being addressed by researcher/stakeholder collaborations, e.g., developing frameworks for ACP outcomes, what goal-concordant care means, and how it might be better measured (8).

Treatment decisions are “complex, uncertain, emotionally laden, and fluid” and influenced by personal, family, surrogate decision maker, provider, social, cultural and equity factors. However, it isn’t patients alone who “identify which treatments … align with those goals...” ACP helps people articulate their priorities, which helps providers offer treatment and care options aligned with these priorities.

Some gaps between the intentions and outcomes of ACP may be explained by the persistent influences of colonialism, paternalism, healthcare commercialization, and the enormity of shifting medical and legal cultures from telling to listening.

We should continue to address the problems and are heartened by efforts many are making to engage in ACP as part of health promotion and “life planning” while living with uncertainty. During the COVID-19 pandemic, we experienced how ACP ahead of illnesses brought peace of mind amidst the distress of making decisions distanced from loved ones (9).

There’s a lot right with ACP today. Let’s continue to address the gaps.

Authors: Simon J, Krones T, Anderson S, Manson L, Götze K, Borenko C, C, Lin CP, Sinclair C, Lasmarias C, Neves Fortes D for ACP-i

References:

1. Gómez-Vírseda C.. BMC Med Ethics. 2019;20(1):76
2. Billingham V Through the Patient's Eyes, Salzburg Seminar Session 356, 1998
3. Curd PR. J Palliat Med. 1999;2(2):157-159. doi:10.1089/jpm.1999.2.157
4. Rietjens JAC. The Lancet Oncology. 2017;18(9):e543-e51
5. Sudore RL,. J Pain Symptom Manage. 2017;53(5):821-832.e1. doi:10.1016/j.jpainsymman.2016.12.331
6. McMahan RD,.J Am Geriatr Soc. 2021; 69(1):234-244. doi:10.1111/jgs.16801
7. Jimenez G. .J Pain Symptom Manage. 2018;56(3):436- 459.e25. doi:10.1016/j.jpainsymman.2018.05.016
8. Sudore RL J Pain Symptom Manage. 2018;55(2):245-255.e8. doi:10
9. Curtis JR, JAMA. 2020;323(18):1771–1772 doi:10.1001/jama.2020.489

CONFLICT OF INTEREST: Grant funded research on ACP - Canadian Frailty Network. Physician Consultant for Advance Care Planning and Goals of Care, Alberta Health Services Calgary Zone.

November 8, 2021

Focus on Function

Jeanne Kerwin, D.MH, HEC-C | Consultant in Bioethics and Palliative Care; Atlantic Health System, Morristown, NJ

Since advance directives are written by someone who wishes to describe future medical interventions that they would choose to accept or refuse depending on the medical circumstance at the time, describing functions would better articulate those wishes. Instead of using descriptors such as "terminal illness", "irreversible illness", "reasonable chance of recovery" or "acceptable quality of life," declarants should describe functional capacities that, if permanently lost, would drive decisions about the provision of life-prolonging interventions. Such functional capacities as "interacting with loved ones," "ability to swallow and enjoy the taste of food," ability to get be out of bed," and so on, would better describe situations in which one would either accept or refuse life-supporting treatments.

CONFLICT OF INTEREST: None Reported

November 22, 2021

AD's as Tools vs. Solutions

Ronn Huff, B.A. | HCA

I think it is fair to say that most individuals who complete instructional advance directives do not intend for those documents to take the place of real-time conversations between proxies and physicians. Patient-generated instructions still hold significant value to the extent that they are used to inform what Fins et al refer to as "contextually informed moral judgments" which usually exist on a contractual-to-covenantal continuum (1). The frequency and quality of proxy-physician communication remains the essential component in the proper interpretation and application of advance directives.

Reference

Joseph J. Fins, Barbara S. Maltby, Erika Friedmann, Michele G. Greene, Kaye Norris, Ronald Adelman, Ira Byock. Contracts, covenants and advance care planning: an empirical study of the moral obligations of patient and proxy. Journal of Pain and Symptom Management. Volume 29, Issue 1, 2005, Pages 55-68.

CONFLICT OF INTEREST: None Reported

November 25, 2021

Advance Care Planning is a Robust, Complex Clinical Intervention

Neil Wenger, MD, MPH, for the UC Health Care Planning study investigators | Professor of Medicine, UCLA Department of Medicine

Morrison and colleagues argue that advance care planning (ACP) does not improve end of life care, but they narrowly conceptualize ACP as a series of isolated, unrelated steps choreographed to guess the right approach to some future clinical situation. However, ACP is a complex clinical intervention.

The ACP process aims to identify and engage family or friends to nurture a common understanding of a patient’s goals. Implemented by or in concert with one’s clinician, it fosters an understanding of one’s illness to facilitate prognostic awareness and help prepare patients for potential future treatments and the medical decisions that will be needed.

However, ACP is more than the sum of these parts. In the healthcare setting, an important goal is to cultivate a communication pattern between clinician and patient that enforces an exchange of clinical information leading to shared decision making on a solid foundation of clinical data and shaped by the goals and values of the patient.

ACP communication creates an expectation in the patient – and their family – that this open exchange is the normal and anticipated mechanism by which decisions are made. This mechanism forms the backdrop against which the clinician can translate a patient’s goals into a tailored treatment plan. Without the explicit and thorough integration of patient goals into the calculus, such a discussion or a plan would be paternalistic.

When dealing with the weighty issues of serious illness and end-of-life decisions, an ACP conversation that incorporates elicited values and goals into clinician recommendations is perceived as caring [1] and is clinically efficient [2]. Efforts to implement and evaluate these models are ongoing. ACP is a vibrant, evolving field, not a failed intervention.

UC Health Care Planning study investigators

Lisa Gibbs, MD, Professor of Medicine, UCI
Jonathan Lee, Professor of Medicine, UCSF
Maryam Rahimi, MD, Professor of Medicine, UCI
Rebecca L. Sudore, MD, Professor of Medicine, UCSF
Anne M. Walling, MD, PhD, Associate Professor of Medicine, UCLA
Neil S. Wenger, MD, MPH, Professor of Medicine, UCLA

References

1. Zwakman M, Jabbarian LJ, van Delden J, et al. Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness. Palliat Med. 2018;32:1305-21.

2. Baidoobonso S. Patient Care Planning Discussions for Patients at the End of Life: An Evidence-Based Analysis. Ont Health Technol Assess Ser. 2014;14:1-72.

CONFLICT OF INTEREST: None Reported

November 29, 2021

Shared Understanding and Advance Care Planning: Why We Shouldn't Give Up

Zoe Fritz, MBBS PhD | Cambridge University Hospitals

Advance Care Planning is in its tweenage stage: it needs time to develop and be taken seriously, to integrate with more mature health systems and cultural mores, and to be understood by clinicians and patients alike. The process of having a conversation about what lies ahead, and considering what outcomes may be valued or feared, may have benefits beyond what we currently know how to measure.

Morrison et al report that there has been no net benefit seen in ACP, and argue that resources should therefore be directed elsewhere [1]. We disagree with the analysis of the two systematic reviews that are referenced, which both conclude that ACP has (limited measurable) benefits. Jiminez identifies improvements in “communication…dying in a preferred place and in health care savings” [2]. McMahan et al defined positive findings as statistically significant differences between study arms (P < .05) and reported: “Process (e.g., readiness) and action outcomes (e.g., communication and documentation) were consistently positive…the majority of congruence and satisfaction with communication and care outcomes were positive, but goal concordant care was not…the majority of surrogate distress and grief outcomes were positive, but patient quality-of-life outcomes were not” [3]. Thus, studies to date have shown some positive measurable outcomes and have certainty not shown any negative effects.

In the UK we have developed the ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) process [4]. It encourages clinicians and patients to establish a shared understanding about the patient’s condition, about what health outcomes they value and fear, and a shared understanding of what kinds of treatments would be of benefit. Used in both the acute and community care settings, it focusses more on the outcomes that are valued and feared by patients rather than specific health interventions which might hypothetically be needed which, as Morrison et al say, are often difficult to predict. Clinical judgment is therefore still needed in an emergency setting, but the in-the-moment decision-making is guided by what was previously stated as important to that particular patient.

Not undertaking a conversation with a patient about what is important to them before they lose the capacity to tell you their wishes is paternalistic. We agree that more evidence is needed about the best way to do this and to ensure that those wishes are respected across healthcare settings [5]. Measuring appropriate outcomes is still elusive. But we should not give up on ACP; we should support it to reach maturity.

Zoë Fritz

Gavin Perkins

Jasmeet Soar

References

1. Morrison, R.S., D.E. Meier, and R.M. Arnold, What's Wrong With Advance Care Planning? JAMA, 2021. 326(16): p. 1575-1576.
2. Jimenez, G., et al., State of advance care planning research: A descriptive overview of systematic reviews. Palliat Support Care, 2019. 17(2): p. 234-244.
3. McMahan, R.D., I. Tellez, and R.L. Sudore, Deconstructing the Complexities of Advance Care Planning Outcomes: What Do We Know and Where Do We Go? A Scoping Review. J Am Geriatr Soc, 2021. 69(1): p. 234-244.
4. Hawkes, C.A., et al., Development of the Recommended Summary Plan for eEmergency Care and Treatment (ReSPECT). Resuscitation, 2020. 148: p. 98-107.

CONFLICT OF INTEREST: I am on the Resuscitation Council UK, which supports the ReSPECT process

February 21, 2022

What's Wrong With This "What's Wrong with ACP" Viewpoint

Dan Morhaim, MD | Self-employed

The same could be said about medical and social change of any type including the authors' field of “geriatric and palliative care medicine.” In other words, adopting new approaches takes time and effort.

I hope nobody thinks we should stop ACP. We have to get better at it, at all levels and steps in the process. The default of not doing ACP is doing nothing, thus leaving critical decisions to be made by any number or persons or committees who don’t know the person whose life is at stake.

Regarding this "Viewpoint" itself:

A key statement in the article is “New research focused on training clinicians and preparing patients and families to engage in high-quality discussions when actual (not hypothetical) medical decisions must be made is needed to achieve the outcomes that ACP has not.” That’s always been true, and the whole issue of ACP is at its beginning, not at its conclusion. ACP is a first step in a long road toward figuring out how to manage advanced illness and end-of-life care. And of course it’s obvious that more training is needed at all levels: the general public, clinicians, institutions.

I looked at a couple of the articles' references and their conclusions. These don’t necessarily support the “What’s Wrong” argument.

One states: “Outcomes for all ACP interventions were predominantly positive.”

Another concludes: “Preliminary evidence highlights several elements that influence the ACP process and provides a variety of features that could support successful, effective, and sustainable ACP implementation.”

Another reports: “This study found that an ACP video program was not effective in reducing hospital transfers, decreasing burdensome treatment use, or increasing hospice enrollment among long-stay residents with or without advanced illness.”

Not surprising. Video is not the same as conversations in-person.

One more concludes: “The program led to short-term improvements in the decision-making.” But “short term improvements” are certainly worthwhile. At end of life, it’s pretty much always short term benefits anyway.

CONFLICT OF INTEREST: None Reported

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