An article in The New York Times earlier this year crystallized the dilemma facing health-care providers when they are presented with a patient in a life-threatening situation: Should they rely on advance care directives written years prior to the current medical situation to accurately determine the patient’s care preferences if the patient is unable to participate in treatment decision-making?1 And does advance care planning ensure improved end-of-life care that is consistent with a patient’s values, goals, and preferences, as it is intended to do?
The answers appear to be “no.”
R. Sean Morrison, MD
The value of advance care planning is coming under scrutiny among palliative and end-of-life care providers with the emergence of increasing evidence showing that such planning fails to improve end-of-life care.2 In a recent viewpoint published in JAMA, R. Sean Morrison, MD, Ellen and Howard C. Katz Professor and Chair, Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, and his coauthors argued that it is unrealistic to expect that what people say they want for their end-of-life care in a hypothetical future is likely to match up with in-the-moment goals of care and treatment decision-making in their current health situation.3
“In a hypothetical scenario, we assume our choices are going to be simple, logical, and linear, and we can preserve our autonomy. The reality is that when decisions need to be made in the setting of serious illness and a lot of uncertainty, they are extraordinarily complex, emotionally laden, and fluid,” said Dr. Morrison. “Living and the desire to live to see a future event in the setting of serious illness or the fear of death when the hypothetical becomes real all influence real-time decision-making in a way that people cannot account for in advance.”
In a wide-ranging interview with The ASCO Post, Dr. Morrison discussed why advance care planning does not ensure high-value end-of-life concordant care for patients with cancer; the importance of encouraging the appointment of a patient surrogate; and how to improve in-the-moment shared decision-making.
Determining the Steps Needed for Advance Care Planning to Succeed
Your examination of decades of research on advance care planning found that such documents as living wills and do-not-resuscitate orders do not have the desired effect of providing improved subsequent care for seriously ill patients. Why is advance care planning failing to meet its intended goals?
First, there are several steps that need to happen for advance care planning to succeed, including that people articulate what their values and goals are for their end-of-life care and identify treatments that would align with those goals in a hypothetical future scenario. Second, clinicians and advance care planning counselors need to be able to elicit those values and preferences from patients and document them.
Third, you must have patient surrogates available when end-of-life decisions need to be made to invoke their substituted judgment if the patient is incapacitated, which is what we ask people to do. We say to surrogates put yourself in your loved one’s shoes and tell us the decision he or she would have made if he or she were able. The reality is that is incredibly difficult to do. It is very hard to look back and extrapolate specific treatment decisions the patient may have made and know what the relevancy is in the present context. It is also extraordinarily difficult for surrogates to disentangle their own preferences, emotions, and feelings of guilt from the actual decision.
We do not receive training in how to communicate well. There is a real disconnect between what physicians think they are telling patients and what patients are hearing.— R. Sean Morrison, MD
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Finally, clinicians must listen to those decisions and honor those wishes. Then they must have the health-care resources to implement good concordant care.
The challenge, though, is there are problems with each one of these steps. Scenarios and situations in clinical practice settings rarely reflect these conditions.
In addition, we know that people’s choices are not static and change over time, so when should those decisions be revisited? For example, for patients with cancer, their condition can change very quickly, so how often should providers have these conversations with their patients?
Also, patients’ end-of-life choices are determined by age, function, culture, family preferences, financial resources, and perceived family caregiver burden. All these elements influence decision-making.
Learning to Communicate Well in End-of-Life Conversations
One of the conclusions you came to is research demonstrates that patients leave clinically based advance care planning sessions with serious misconceptions about life-sustaining treatments and that advance directives are often misinterpreted by physicians, families, and surrogates. Why are there misinterpretations about the care patients want at the end of life?
The most important reason is that physicians are not trained to have high-quality discussions about serious illness. We do not receive training in how to communicate well. As a result, patients, family caregivers, and surrogates often misunderstand the patient’s prognosis and likely outcome. There is a real disconnect between what physicians think they are telling patients and what patients are hearing.
However, even if we did a better job of communicating the reality of the situation, it still does not solve all the problems of having a discussion of a hypothetical future medical event.
Improving Shared Decision-Making
Is it the hypothetical event that is the culprit here and the one that is insurmountable?
Yes. What we argue in our viewpoint in JAMA, and what we hope people take away from it, is that we need to focus on three aspects of clinical care.
First, is to encourage people to appoint a surrogate they trust to make health-care decisions for them if they cannot speak for themselves, someone physicians can turn to for answers. Second, we need to focus better on improving in-the-moment shared decision-making, which means sitting with patients and family members to elicit the patient’s end-of-life wishes and goals in that moment and not in the hypothetical future, and helping patients align what they hope to accomplish in the setting of their illness with the treatments available. And then helping them make their best decision.
My biggest worry is that we are promising our patients care we know we will not be able to deliver.— R. Sean Morrison, MD
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The problem is that we still do not have good data to guide us on how best to accomplish this goal. We do not have good data on how much information patients want or need or how much of a role they want their physicians to play in their end-of-life decisions. We do not know what prognostic information they need to make informed decisions or how to help patients who do not want to know that information. We need more research to help us understand how we can have much better-informed conversations with patients when we must make immediate decisions.
Third, we need to know how to set the stage better to have these conversations, so patients are better prepared.
Starting Conversations About Advance Disease Planning
In the case of a patient with an incurable cancer and a prognosis that is not good long term, isn’t there clinical value in having early conversations with the patient’s loved ones and physicians, so there is a baseline of what the patient would want at the end of life, whether that is in 1 year or 5 years?
I do think there is a role in the setting of serious illness for these early conversations. I agree with you completely. For anyone living with a life-threatening illness, this is not about advance care planning. This is truly about advance disease planning. These decisions are meaningful right now and realistically, not hypothetically, need to be made. It is important to initiate these conversations early and certainly when the disease progresses and treatment decisions need to be made. The challenge is relying on advance care planning to help physicians know what patients really want in their present situation.
Challenging the Benefits of Advance Care Planning
One of the benefits often associated with advance care planning is that it reduces overtreatment and improves quality of care at the end of life, but that is not what you found in your research.
No, it is not. In fact, in the randomized controlled trials, including in cancer, we reviewed for our paper, we found no evidence that advance care planning improves goal-concordant care, ensures the best treatments patients receive near the end of life, increases decision-making that is associated with better patient satisfaction or patient experience, or reduces medical use or cost.
The most positive aspect of advance care planning we found is that it may reduce surrogate anxiety regarding treatment decision-making, although I hesitate to say that because it appeared in only a few studies. Overwhelmingly, all the outcomes of advance care planning we found that were designed to address patients’ end-of-life preferences and goals were not linked to having an advance care directive.
GUEST EDITOR
Jamie H. Von Roenn, MD, FASCO
Avoiding False Health-Care Promises
Please talk about the unintended consequences of continuing with the current advance care planning system.
My biggest worry is that we are promising our patients care we know we will not be able to deliver. We go into these conversations in the current situation, which are stressful for everyone. We say to patients, you have assigned a surrogate and have documented your end-of-life wishes, and we will assure you that you will receive the care that is consistent with those wishes, and that is a false promise. We should not promise that because we know we will not be able to deliver that care.
In addition, we are spending a lot of time and money focused on developing measures of quality for our insurance programs, health systems, and physicians for an intervention that we know is not meeting patients’ needs. That money could be better spent on other aspects of care. For example, it could be spent on research and clinical efforts to improve current shared decision-making between a patient’s trusted surrogate and clinicians.
In addition, the presence of an advance directive may actually inhibit current discussions about goals of care. When we were facing the COVID-19 pandemic surge in the spring of 2020, and our hospitals were overwhelmed with patients and our emergency physicians were exhausted, a lot of health systems made a huge effort to ensure that people had filled out an advance care directive (particularly those at high risk for COVID), had medical orders for life-sustaining treatment, and documented their “wishes.”
What I witnessed too often when patients came into the hospital with those documents was that they were just a roadmap for overwhelmed health-care workers to make a treatment decision. What I worry about, especially for marginalized populations, is when another crisis like COVID happens; it will be too easy to look at a piece of paper that probably not a lot of thought went into writing and act on it.
But isn’t there some intrinsic value in having end-of-life conversations in the cancer care setting and having some documentation on what a patient would want at the end of life?
I find the written documents, and the data support me, extraordinarily unhelpful because they never specify or identify what the true decision is during the medical situation at hand. It is very helpful to have a surrogate who the patient trusts make decisions if the patient
s unable to communicate his or her wishes and who can sit with the clinician and talk through the situation and what the surrogate knows about the patient’s values and goals and come to a decision together.
Having an advance care directive probably helps some physicians in their end-of-life decision-making, but for the overwhelming majority of physicians, it does not.— R. Sean Morrison, MD
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Showing Science Works
The advance care planning system is so embedded in cancer care. Are you getting pushback from other physicians on the position you are taking?
I have received a tremendous number of comments from clinicians thanking us for writing the viewpoint article in JAMA. We get pushback from the folks who are heavily invested in the advance care planning industry. Having an advance care directive probably helps some physicians in their end-of-life decision-making, but for the overwhelming majority of physicians, it does not.
The history of advance care planning is a good example of science working. We had a problem—the need to know a patient’s end-of-life wishes and goals—we came up with a solution—the advance care directive—that we thought addressed the problem; it had good faith validity and seemed to make good sense at the time. However, when we did the research, we discovered advance care planning does not work, and we should stop promoting it as high-value end-of-life care. This is what scientific research is supposed to do. It is supposed to identify what does and does not work, and that’s what happened with the advance care directive.
DISCLOSURE: Dr. Morrison reported no conflicts of interest.
REFERENCES
1. Lamas DJ: When Faced With Death, People Often Change Their Minds. The New York Times, January 3, 2022. Available at www.nytimes.com/2022/01/03/opinion/advance-directives-death.html. Accessed August 3, 2022.
2. Jimenez G, Tan WS, Virk AK, et al: Overview of systematic reviews of advance care planning: Summary of evidence and global lessons. J Pain Symptom Manage 56:436-459.e25, 2018.
3. Morrison RS, Meier DE, Arnold RM: What’s wrong with advance care planning? JAMA 326:1575-1576, 2021.
