Now, More Than Ever, Is the Time for Early and Frequent Advance Care Planning

In recent weeks, there have been multiple consensus statements and guidelines regarding best practices during the COVID-19 pandemic. These include the ASCO recommendations for the oncology community specifically (hereafter, ASCO recommendations).¹ In addition to guidance about allocation of resources and oncologists’ obligations to maximize health outcomes and steward resources fairly, consistently, and transparently, the ASCO recommendations urge oncologists “to engage in advance care planning (ACP) discussions with their patients early and often.”¹ ACP has never been more important than now.²

The merits of ACP are well described; early discussions, including hypothetical conversations about end-of-life wishes, not only lead to better end-of-life care but also enable greater trust in clinicians, minimize psychological distress, improve quality of life, and facilitate hope.^3-11 Consider how important these outcomes are for patients with a serious illness that may be complicated by COVID-19. Confidence in the medical system is suddenly threatened, and patients are having sensitive end-of-life discussions with unfamiliar practitioners in emergency departments and intensive care units (ICUs) across the globe.^3,12,13 Because of the infectivity of this virus, visitation is restricted and patients are cut off from social supports, likely exacerbating their already high stress and distress.⁶ Although we cannot yet quantify to what extent pre-existing cancer influences outcomes related to COVID-19, early experience suggests that patients with cancer are at increased risk of a more severe illness and perhaps of death.^14,15 Taken together, patients with cancer who might have chosen to forgo life-sustaining therapies during ACP discussions may instead die while on a ventilator.¹⁶

A long-standing principle in ACP is to engage in these discussions before they become necessary, before patients are critically ill. Early ACP is particularly important right now for four specific reasons. First, ACP facilitates goal-concordant end-of-life care, including the use of (potentially scarce) intensive life-sustaining support only when it is desired by the patient. Second, directing resources in a manner that includes patient preferences supports fair resource allocation, which becomes important when said resources are already stretched. The ASCO recommendations, for example, share a hypothetical case scenario in which there are two patients with acute respiratory distress syndrome secondary to COVID-19, and there is only one available ICU bed. One of the two patients previously documented his wishes in an advance directive, including his preference to “die naturally” and without mechanical ventilation. In this hypothetical case, the patient with the documented advance directed receives goal-concordant care focused on his comfort, while the other patient receives care in the ICU. Third, high-intensity care can contribute to moral distress among health care clinicians, especially when such care seems overly aggressive on the basis of a patient’s perceived prognosis.³ Clinician distress may be even higher with COVID-19; not only is there a risk of infection during invasive procedures like intubation, but providing care to one patient may necessarily limit a clinician’s ability to provide it for someone else. Consideration and documentation of patients’ preferences would help patients and clinicians in these situations. Fourth, early ACP enables patients to engage in shared decision-making, which becomes critical if they lose their capacity to participate in later discussions. Indeed, studies in other critically ill populations suggest that as many as 40% of patients who were previously capable of making independent decisions are no longer able to do so during an acute hospital stay.¹⁷

If these reasons are not compelling enough, we have noticed an additional rationale: in the face of the COVID-19 pandemic, patients and families appear eager to have these discussions. Anecdotally, some clinicians share that they are “getting to ACP faster” in the COVID-19 era, though the circumstances surrounding them are vastly different from typical cancer-related conversations. The tremendous media saturation about the large number of deaths has made the possibility of death very real and nearly universal. Conversations about death are happening over the morning newspaper and dinner. Without a doubt, concerns about our own mortality are at the forefront of people’s minds. Dying from COVID-19 is dying from an acute illness without any proven treatment and, as such, becomes a different conversation than discussing death from cancer. Thus, the opportunity to discuss wishes in the face of severe COVID-19 infection is one that people with cancer and their loved ones are eager to have, especially with their trusted oncologist.

Despite the heightened critical importance of early ACP during this pandemic, engaging in discussions about patients’ end-of-life wishes, values, and goals remains difficult. Oncologist-reported barriers to ACP include fears of undercutting hope and a sense that discussing worst-case scenarios is tantamount to abandonment.¹⁸ Neither is true. Discussing a patient’s wishes, especially now, can foster hope, trust in physicians, and a greater satisfaction with care.¹⁹ Additional concerns relate to the time involved in holding such discussions. Although it is true that exploring a patient’s values and goals takes time, it may not be as long as oncologists believe. Evidence suggests that meaningful conversations, when done skillfully and with intention, may take fewer than 20 minutes.²⁰ For example, when oncologists compassionately discuss prognosis with statements of concern for a patient’s future, patients’ prognostic understanding greatly improves within a matter of minutes.²⁰ Finally, taking time to address ACP is a worthwhile investment. When ACP is done nonurgently, while patients and families can calmly engage in open discussions, clinicians and families feel more confident in decision-making.¹⁷

Patients with cancer follow the cues of their oncologists; when oncology teams avoid ACP, so too do patients and families. Moreover, the culture of oncology is necessarily focused on beating cancer.¹⁸ A common occurrence when delivering a poor prognosis is for oncologists to focus specifically on treatment options rather than on patient preferences.¹⁸ This practice means that discussions skip explorations of patient values to more quickly arrive at decisions. Clinicians also tend to wait for patients and families to introduce topics outside the specific oncology care plan, including ACP.¹⁸ As a result, patients may feel disempowered or disengaged.^21,22 Unless oncologists provide an opportunity for ACP, their patients seen in an emergency department for COVID-19 are likely to be forced to consider it without them.

As the ASCO guidelines suggest,¹ ACP is not a one-time responsibility; patients’ preferences and goals change as circumstances evolve. Decisions for or against resuscitation should be revisited. Most patients with cancer suggest that their experience with decision-making over time did not actually involve multiple decisions; rather, they describe having “only one way to proceed” at each key decision point.¹⁸ It follows that more frequent discussions about possible options and their ramifications becomes crucial in the face of COVID-19, as patients may wish to revisit their decisions for or against resuscitation and life support. Just as patients who once requested full resuscitation can change their minds and shift toward requests to limit such support, so too can patients who previously decided to limit life-sustaining therapies request more. Imagine a patient with cancer who previously explored her end-of-life wishes within a narrow context of dying from progressive refractory pulmonary metastatic disease. She may have acknowledged that mechanical ventilation would not solve the problem of her illness and thus elected to forgo such intensive support. She may feel differently about mechanical ventilation for severe acute respiratory syndrome secondary to COVID-19. Perhaps she would now endorse a time trial of more aggressive support with clear benchmarks to evaluate her prognosis.

Making sure that patients’ potential care aligns with their goals is an expression of the value of a patient’s life. That value is not diminished by a diagnosis of cancer. Although published guidelines recognize that there may be difficult choices to be made on the basis of a patient’s age and likelihood of survival,^23,24 the ASCO guidelines explicitly state that these decisions should not be made by patients’ treating clinicians but rather by a triage officer or triage committee, with information from the treating oncology team.¹ Moreover, the guidelines state that patients with cancer deserve equitable access to scarce resources in allocation protocols. Prior ACP may help patients and families prepare for these unimaginable scenarios by allowing patients to consider their own mortality and by allowing families to consider the loss of their loved one.

ACP helps clinicians advocate for their patients, honor patient preferences, and fulfill their own duties to provide optimal oncology care. All oncologists who care for patients with cancer should have expertise in communication, especially when it comes to ACP. Now, in the era of COVID-19, this skill is more important than ever.² Several COVID-19–specific resources have been developed, including talking maps for ACP topics, such as proactive planning; exploring preferences and goals of care; discussing code status; and managing emotions, such as anxiety, fear, and uncertainty.^18,25 Similar, oncology-specific resources for tackling topics, such as COVID-related changes, in oncology treatment plans are also available.²⁶ ACP in the current environment presents an opportunity to support patients and families during a time when their (and our) world feels even more uncertain. Patients with cancer and their families are afraid and want to talk about their concerns with their oncologists. Let us now deliver.

AUTHOR CONTRIBUTIONS

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Now, More Than Ever, Is the Time for Early and Frequent Advance Care Planning

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jco/authors/author-center.

Open Payments is a public database containing information reported by companies about payments made to US-licensed physicians (Open Payments).

Don S. Dizon

Stock and Other Ownership Interests: InfiniteMD, NeuHope

Consulting or Advisory Role: i-Mab, Clovis Oncology, AstraZeneca, Regeron, Tesaro

Research Funding: Merck Sharp & Dohme (Inst), Bristol-Myers Squibb (Ist), Kazia Pharmaceuticals (Inst), Tesaro (Inst)

(OPTIONAL) Open Payments Link: https://openpaymentsdata.cms.gov/physician/744193/summary

No other potential conflicts of interest were reported.