The Importance of Addressing Advance Care Planning and Decisions About Do-Not-Resuscitate Orders During Novel Coronavirus 2019 (COVID-19) | Critical Care Medicine | JAMA | JAMA Network
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March 27, 2020

The Importance of Addressing Advance Care Planning and Decisions About Do-Not-Resuscitate Orders During Novel Coronavirus 2019 (COVID-19)

Author Affiliations
  • 1Division of Pulmonary, Critical Care, and Sleep Medicine, University of Washington, Seattle
  • 2Cambia Palliative Care Center of Excellence, University of Washington, Seattle
  • 3Larner College of Medicine, Division of Pulmonary and Critical Care Medicine, University of Vermont, Burlington
JAMA. 2020;323(18):1771-1772. doi:10.1001/jama.2020.4894

The novel coronavirus disease 2019 (COVID-19) pandemic is challenging health care systems worldwide and raising important ethical issues, especially regarding the potential need for rationing health care in the context of scarce resources and crisis capacity. Even if capacity to provide care is sufficient, one priority should be addressing goals of care in the setting of acute life-threatening illness, especially for patients with chronic, life-limiting disease.

Clinicians should ensure patients receive the care they want, aligning the care that is delivered with patients’ values and goals. The importance of goal-concordant care is not new or even substantially different in the context of this pandemic, but the importance of providing goal-concordant care is now heightened in several ways. Patients most likely to develop severe illness will be older and have greater burden of chronic illness—exactly those who may wish to forgo prolonged life support and who may find their quality of life unacceptable after prolonged life support.1 In addition, recent reports suggest that survival may be substantially lower when acute respiratory distress syndrome is associated with COVID-19 vs when it is associated with other etiologies.2,3

In this context, advance care planning prior to serious acute illness and discussions about goals of care at the onset of serious acute illness should be a high priority for 3 reasons. First, clinicians should always strive to avoid intensive life-sustaining treatments when unwanted by patients. Second, avoiding nonbeneficial or unwanted high-intensity care becomes especially important in times of stress on health care capacity. Third, provision of nonbeneficial or unwanted high-intensity care may put other patients, family members, and health care workers at higher risk of transmission of severe acute respiratory syndrome coronavirus 2. Now is the time to implement advance care planning to ensure patients do not receive care they would not want if they become too severely ill to make their own decisions. As eloquently pointed out by an intensivist, “If you do not talk with [your family] about this now, you may have to have a much more difficult conversation with me later.”4 Several online resources can guide these advance care planning discussions.5-7

For patients in a community setting or living in a nursing home, clinicians should engage in discussions about goals of care now, especially with older patients with chronic disease. During this pandemic when nonessential medical visits are currently limited, these conversations may need to occur via telemedicine (either as a stand-alone appointment or in combination with an appointment designated or scheduled for another purpose). This process should include primary care and specialty clinicians (eg, cardiologists, pulmonologists, nephrologists, oncologists, and geriatricians), and patients might appreciate this opportunity to discuss advance care planning. Depending on state regulations, patients with chronic life-limiting illness should be offered the option to complete a physician order for life-sustaining treatments form, especially if they would not want to receive cardiopulmonary resuscitation (CPR) or mechanical ventilation.

For hospitalized patients, one focal point for goal-concordant care is related to discussions of code status or the use of CPR and advanced cardiac life support (ACLS). Many hospital-based clinicians overemphasize code status as the first step of a goals-of-care discussion, but asking patients about CPR before assessing values and goals leads to ineffective code status discussions. During this pandemic, it is equally important to understand a patient’s values and goals prior to discussing code status; however, the importance of avoiding inappropriate CPR has increased for 2 reasons. One reason is that although unwanted or nonbeneficial CPR under any circumstance may risk increasing psychological distress for patients’ family members,8 inappropriate CPR during the pandemic is especially stressful and potentially dangerous for health care workers. Another reason is that nonbeneficial or unwanted ACLS will strain available resources for personal protective equipment because multiple health care workers are needed for effective ACLS. Therefore, the COVID-19 pandemic heightens the importance of implementing do-not-resuscitate (DNR) orders for appropriate hospitalized patients.

The implementation of DNR orders can occur in 3 situations. First, patients or their surrogate decision makers may clearly understand and communicate that the patient would not want CPR if the heart were to stop and may even have a physician’s order for life-sustaining treatments form that specifies such. Second, patients or their surrogate decision makers may follow the recommendation of a clinician to forgo CPR; this may occur through informed consent or, occasionally, informed assent (as discussed below).9 Third, in extreme situations in which CPR cannot possibly be effective, clinicians in some health care settings may unilaterally decide to write a DNR order.10 This latter approach is not uniformly accepted and, prior to COVID-19, it rarely had a role. During this pandemic, however, in extreme situations such as a patient with severe underlying chronic illness and acute cardiopulmonary failure who is getting worse despite maximal therapy, there may be a role for a unilateral DNR to reduce the risk of medically futile CPR to patients, families, and health care workers.10

Informed assent may be a more acceptable approach to code status discussions than medical futility and may be useful for patients in whom CPR is exceedingly unlikely to allow a successful return to a quality of life they would find acceptable.9 The Figure provides a proposed guide for an approach to having an informed assent discussion with a patient or family member of a patient for whom the clinician believes CPR is not indicated. The advantage of informed assent over a more traditional informed consent approach is that the clinician does not ask the patient or designated family member to take responsibility for the decision but rather asks the patient or family member to allow the clinician to assume responsibility. Some family members may be willing to permit clinicians to make this decision while simultaneously being unable to accept responsibility themselves, even if they agree, because of the psychological burden it places on them. In this setting, informed assent may provide family members a way to agree with the clinician’s determination without assuming responsibility. Importantly, this approach places great responsibility on clinicians to enact careful prognostication and thoughtful, respectful, open communication with family members. This same responsibility is also present for informed consent.

Figure.  Proposed Components of Informed Assent Framework
Proposed Components of Informed Assent Framework

The COVID-19 pandemic is placing tremendous stress on health care systems. There are many important components of an appropriate response to this pandemic, including public health measures to reduce rapidity and extent of spread. Another important element of the best possible response is to ensure that clinicians have high-quality discussions both about advance care planning for individuals in the community, especially those of older age and with chronic illness, and about goals of care with patients or their families when patients have illness that requires hospitalization.

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Article Information

Corresponding Author: J. Randall Curtis, MD, MPH, Cambia Palliative Care Center of Excellence, University of Washington, 325 Ninth Ave, PO Box 359762, Seattle, WA 98104 (jrc@u.washington.edu).

Published Online: March 27, 2020. doi:10.1001/jama.2020.4894

Conflict of Interest Disclosures: Dr Curtis reports receipt of grants from the National Institutes of Health (NIH) and from Cambia Health Foundation. Dr Kross reports receipt of grants from NIH outside the submitted work. Dr Stapleton reports receipt of grants from NIH and the National Institute on Aging outside the submitted work.

Role of the Funder/Sponsor: None of the funders had a role in the preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Additional Contributions: The authors would like to thank Anthony L. Back, MD; Ruth A. Engelberg, PhD; James Fausto, MD, eMHA; Dee Ford, MC, MSCR; and Christine Ritchie MD, MSPH, for their contributions to the practical steps for informed assent.

References
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Wu  C, Chen  X, Cai  Y,  et al  Risk factors associated with acute respiratory distress syndrome and death in patients with coronavirus disease 2019 pneumonia in Wuhan, China.   JAMA Intern Med. 2020; doi:10.1001/jamainternmed.2020.0994PubMedGoogle Scholar
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Arentz  M, Yim  E, Klaff  L,  et al.  Characteristics and outcomes of 21 critically ill patients with COVID-19 in Washington State.   JAMA. 2020. doi:10.1001/jama.2020.4326PubMedGoogle Scholar
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Rubenfeld  G.  The coronavirus is a chance to have the end-of-life conversations we need. The Globe and Mail. March 16, 2020. Accessed March 3, 2020. https://www.theglobeandmail.com/opinion/article-the-coronavirus-is-a-chance-to-have-the-end-of-life-conversations-we/.
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Sudore  RL, Schillinger  D, Katen  MT,  et al.  Engaging diverse English- and Spanish-speaking older adults in advance care planning: the PREPARE randomized clinical trial.   JAMA Intern Med. 2018;178(12):1616-1625. doi:10.1001/jamainternmed.2018.4657PubMedGoogle ScholarCrossref
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Goodman  E.  The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. Institute for Healthcare Improvement. Published 2020. Accessed March 21, 2020. http://theconversationproject.org.
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Curtis  JR, Burt  RA.  Point: the ethics of unilateral “do not resuscitate” orders: the role of “informed assent”.   Chest. 2007;132(3):748-751. doi:10.1378/chest.07-0745PubMedGoogle ScholarCrossref
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    4 Comments for this article
    EXPAND ALL
    Helpful Templates to Facilitate Discussion
    Ron Louie, MD | Clin. Prof. Peds, (Heme-Onc) Univ. WA
    Although hospital / facility admission officers usually ask about advanced directives at the front door, there may be logistical issues having the document available when it's needed. If no document exists, the decision-making process usually takes time, so it may be practical to delegate the introduction of concepts to another member of the team, with followup with clinicians later.

    Social work and palliative care / hospice units undoubtedly have their own paperwork to facilitate the discussion, but independent non-profits like End of Life Washington have nicely made documents available through their website (not affiliated).
    CONFLICT OF INTEREST: None Reported
    Advance Care Planning a Gift to Ourselves, Families and Healthcare Providers
    Bob Parke | Bioethicist UHN Toronto
    I appreciate this article which also encourages us to remind patients that if advance care plans (ACPs) have been done they should inform family members (decision makers) where the plans are as well as any related power of attorney documents if completed.

    An ACP is a gift a person first gives themselves to best ensure they receive the treatment they want or not. Secondly, it is a gift provided to their family members or decision makers if they must make treatment decisions on their behalf. A gift with the benefit of peace of mind, less guilt and greater
    assurance that loved ones of the patient have made decisions the person wanted. Thirdly, at this time of the COVID-19 pandemic, completing an ACP and having it available is a gift given to treating staff including the front-line doctors. With likely shortages of ventilators, ICU beds and when doing CPR may put staff at risk, an ACP with the focus on comfort care is a gift that will lift some of the burden placed on an MD who has to propose treatments in the context of limited resources.

    In response to Ron Louie MD's concern in the comments about the logistical problem of having documents available when needed, this is a real concern and why patients if they have done ACPs should inform their decision makers where those documents are. I would like to add that ACPs can be provided in ways other than paper documents. One modality that I am coming to appreciate is the work done by Dr. Ferdinando Mirarchi to embed video recordings of ACPs within a QR code on a fob or card. The card can be in a wallet or on a bracelet that can be easily read by current smart phones. Dr. Mirarchi has abbreviated this method MIDEO (My Informed Decision on VidEO) (1). At a time when family members can't be with their loved ones it is another way for the person to quickly give voice to their wishes.

    REFERENCE

    1. https://mideocard.com/
    CONFLICT OF INTEREST: None Reported
    READ MORE
    Critical Ill patient and informed consent in a pandemic situation
    Giuliano Ramadori, Professor of Medicine | University Clinic,Internal Medicine,Göttingen,Germany
    The authors address an important issue for doctors involved in the treatment of critically ill COVID-19-positive patients: how to inform not only the patient but and even more importantly how to inform family members and how to involve them before the important decision of mechanical ventilation is taken.

    They mention two reports which gave some indications that survival after this treatment can be very low; mortality after mechanical ventilation was 65.7% and 20.9% of the patients were discharged from the hospital in the first report from China (1). In the second report (2) mortality in mechanically ventilated patients
    was 67% and 9.5% were released from the ICU. In the first report 20.9% of the patients remained hospitalized (1) while in the second report (2) 24% of the patients remained critically ill at the time of publication. It is reasonable to believe that about 80% of the patients who required mechanical ventilation probably died in the ICU. It would be interesting to learn, however, the fate of those patients who remained critically ill. Furthermore it would be important to know the clinical characteristics of those patients who could be released from the ICU and/or from the hospital.

    This information could help facilitate real informed consent from patients and family members and could also reduce the risk of criminal and civil liability (3)

    REFERENCES

    1.Wu C, Chen X, Cai Y, et al Risk factors associated with acute respiratory distress syndrome and death in patients with coronavirus disease 2019 pneumonia in Wuhan, China. JAMA Intern Med. 2020; doi:10.1001/jamainternmed.2020.0994

    2.Arentz M, Yim E, Klaff L, et al. Characteristics and outcomes of 21 critically ill patients with COVID-19 in Washington State. JAMA. 2020. doi:10.1001/jama.2020.4326

    3.Cohen G,Crespo AM,White DBPotential legal liability for withdrawing or withholding ventilators during COVID-19.Assessing the risk and identifying needed reforrms.JAMA.2020 Apri 1.
    CONFLICT OF INTEREST: None Reported
    READ MORE
    Surprise Billing, Surprise Decisions
    Leslie Kelly Hall | Engaging Patient Strategy
    Today there are 30,000 surprise bills to patients every day. Advance Directives set the stage for direction for care. When this is ignored, the patient's family get the surprise. My voice. My care. My risk. My cost. Listen to me.
    CONFLICT OF INTEREST: None Reported
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