By Elaine Chen, MD
Assistant Professor, Department of Internal Medicine, Division of Pulmonary and Critical Care Medicine,
Section of Palliative Medicine, Rush University Medical Center, Chicago
In today’s world of technology and constant advancement in medicine, critical care practitioners are often asked to provide more, to provide miracles, to keep loved ones alive. We even may feel like we are asked to bring loved ones back to life. These complex situations lead us to pause and ask: What is appropriate and what is not? What is beneficial, what causes more harm than benefit, what is futile? When asked to provide treatments and therapies that may be inappropriate, how should we respond?
Futile or Potentially Inappropriate?
In medicine, the word “futile” is challenging and emotionally laden. Strictly speaking, futile interventions cannot accomplish the intended physiologic goal.1 Because people often transfer their own interpretation of quality of life onto what therapies might be considered “futile,” there have been efforts by ethicists and critical care clinicians to avoid this term, replacing it with “potentially inappropriate” instead.2,3 When considering potentially inappropriate medical treatments, it is important for clinicians to reflect on the physiologic intent, transference of values, laws and legal precedents, and scope of practice. Some therapies may offer some short-term or even medium-term benefit; however, long-term impact remains less clear. We question the cost/benefit ratio, the extent of suffering the patient will endure, and the quality of life that the patient may experience, if they survive, projecting our values onto the patient and family.
An example of a potentially inappropriate intervention could include requesting amputation of the left leg as treatment for a pneumonia; this would not be considered appropriate because it is not indicated and would cause harm. Similarly, why would it be acceptable to give chemotherapy to a patient in whom it would almost be guaranteed to shorten life? Performing cardiopulmonary resuscitation (CPR) on a body in rigor mortis would be absolutely futile. Thus, I would propose that CPR on a person on maximal vasopressor support and mechanical ventilation would also be considered physiologically futile. Some would argue that this could be a slippery slope of describing when CPR would be futile and favor the term “legally discretionary,” where there exist specific laws that allow physicians to say no to treatments and procedures which are generally accepted to have minimal benefit and legal precedent.3,4 For example, a patient has worsening septic shock and escalating vasopressor need, but oxygenation and ventilation are maintained. In more of a palliative care setting, a patient with advanced metastatic cancer may have terminal delirium but acceptable hemodynamics and respiratory status. Would it be appropriate to withhold intubation and CPR in these patients? Many, but not all, clinicians would agree that would be appropriate given a known irreversible cause, but physiologically, short-term life prolongation might possibly be achieved with resuscitation. The laws vary from location to location, but they may involve foregoing CPR in situations when there is a reasonable certainty that it will not have its intended effect.
In contrast, consider the actively drinking patient with cirrhosis whose family requests liver transplantation and asks the team to override organ allocation protocols, which is illegal. Requests of this nature can be described as “legally proscribed,” or treatments and protocols that are not legal for clinicians to provide. Assuming documentation of laws and policies can be provided to the family, a simple statement that the request is against the law would be a clear and appropriate response.
Alternatively, a patient with anoxic encephalopathy but normally functioning organs is protecting their airway. The family does not desire to pursue artificial nutrition or hydration, signs a do not resuscitate/do not intubate/physician orders for life-sustaining treatment (DNR/DNI/POLST) order, and asks the team to give the patient an extra-large dose of opioid to allow the patient to die more quickly. Although comfort medications are ethically appropriate in end-of-life situations by the principle of double effect, the intention and dose must be for symptom management and not to hasten death.5 If the goal is for hastening of death, this is ethically inappropriate and, in fact, illegal in this context.
Requests for potentially inappropriate treatments in the intensive care unit (ICU) often occur near the end of life and may have the intention of prolonging life or hastening death. Responding to these requests can be challenging, unpleasant, or even fear-inducing. To help clinicians navigate these situations, the American Thoracic Society, in collaboration with several other professional societies, created a policy statement for responding to requests for potentially inappropriate treatments in intensive care units.4
The Importance of Communication
At the heart of many challenging end-of-life situations is the family’s love for the patient. Good communication in the ICU is essential to ensure that the care delivered aligns with the patient’s, or surrogate’s, goals of care, and to maintain a firm line when faced with requests for therapies that are inappropriate.6-9 Often these requests for inappropriate treatment are simply cries for help, a desire to be heard and valued.
Good communication also is paramount to build trust and negotiate the conflict that often is associated with requests for inappropriate treatment. Initial establishment of strong trust and good communication between the medical team and the family can temper requests for inappropriate treatments.10 Improving communication requires time and effort, with tools that most clinicians already have; most significant is a listening ear.
To start, take some extra time to listen to the family. Ask about the patient as a human, ask what they love to do. Ask if they have ever talked to the patient about end-of-life issues or life-prolonging therapies. Ask what the family is hoping for, what they expect, and what they are worried about. Then, align the medical team with the patient and family rather than antagonizing. I have heard members of the clinical team tell me that the family “doesn’t understand” or “has unrealistic expectations.” Rather, understand that families are using hope and optimism as a coping mechanism. Acknowledge that loss and change are hard, and emphasize that the medical team’s goal also is to preserve and recover life. The “I wish” statement is a tool that can be employed effectively in these situations: “I wish we could make her better,” “I wish we had additional treatments to offer,” “I wish things were different.”11 Offer support to the family, validate and normalize the emotions they are feeling, empathize, and allow silence. Table 1 summarizes some take-home communication pearls.
Table 1: Communication Pearls |
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Tailoring communication to the preferred decision-making style of the family also can improve communication. The spectrum of shared decision-making ranges from an autonomous style, driven by the patient and family, to a more paternalistic or parentalistic style, where patients and surrogates cede authority to providers.9,12-15 Most patients and families will fall somewhere in the middle of this continuum in the decision-making process. Clinicians should adapt the decision-making model to the needs and preferences of the patient or surrogate. However, in the setting of requests for inappropriate treatments, the physician has a firm obligation to offer only clinically and ethically appropriate options.
When treatment alternatives are not being offered, particularly in the case of CPR, common communication approaches include the concepts of informed non-dissent or informed assent.16-20 With informed non-dissent, a family is notified of a decision (such as a DNR order) that will be put in place if they do not object. With informed assent, a family is notified, for example, that CPR will not be performed because it will not work, and given an opportunity to acknowledge understanding. In this model, the family is not given an option to object. These methods of communication may ease the burden on families who feel they are being tasked with a difficult or impossible decision.
The discussion of appropriate or inappropriate CPR is a subject of ongoing evolution. I once interacted with an awake patient who repeatedly requested “one round of CPR” at the time of cardiac arrest or death. She was alert and fully cognizant; she worked in healthcare with a partial understanding of the nature of CPR. She had advanced metastatic cancer and was near death, but it was not imminent. Our medical team had multiple discussions about the ethics of providing partial CPR and the moral distress associated with being asked to inflict unnecessary and non-beneficial suffering to honor the patient’s explicit wishes.
In contrast, I spoke with the mother of a young patient with a very new and devastating diagnosis of hematologic malignancy, who rapidly required escalating mechanical ventilation and vasopressors. She strongly emphasized that she wanted “everything” done to save her son. We gave him everything we possibly had, counseled his mother as such, and told her we would not perform CPR. She very gratefully but tearfully assented to the DNR order. If assent cannot be obtained, unilateral DNR policies can be considered, depending on the policies and laws of the hospital and state.
A Recommended Procedural Resolution Process
If communication fails to resolve a conflict, American Thoracic Society guidelines recommend the following procedural resolution process.4 The first step in this process is to involve expert consultation. This could be an ethics consultation or a palliative care consultation, if they are not yet involved. These guidelines also recommend informing the surrogates in writing when this process is started. Consultation from ethics committees may vary among institutions, depending on the scope, makeup, and availability of the committee members. These members of ethics committees may include physicians from various specialties, chaplains, attorneys, ethicists, psychologists, or nurses. Unlike medical consultation, which a provider must request, ethics consultation often can be requested by any member of the healthcare team, a patient, or a family member. An ethics consultation generally will involve gathering medical information and applying it to an ethical framework. Potential benefits and risks to involved parties should be weighed. The four box or four topic approach is a common ethical framework that may be applied.21,22 The four topics to be considered are medical indications, patient preferences, quality of life, and contextual features. Using this framework, an ethics team may consider core principles, frame an ethics question, and offer a list of ethical options. An ethics consultation may be beneficial even if the family members and physician have come to consensus to help staff who may be struggling with moral distress or compassion fatigue to better understand the issues and decisions.
If, after expert consultation, consensus has not been reached, the next step is to obtain a second opinion. This should be an independent clinician with appropriate expertise in the patient’s condition and prognosis. Practically, I might consult with another clinician in my institution, or the family might request that medical records be sent to another institution or ask that I speak with an outside team and solicit their recommendations.
The next step detailed in the guidelines is to perform a review by an interdisciplinary hospital committee. This committee should not include treating clinicians and should offer clinicians and family members an opportunity to share their perspectives. In the fast-paced clinical environment of the ICU, this is not common.
Requesting transfer to a different institution is the next step and is pursued more commonly. The transfer process can vary in practice between institutions and also may depend on the type of institution. If families obtain the name and contact information of a physician or hospital who has accepted the case, our hospital transfer center will facilitate the transfer. Sometimes, families may obtain the name and contact information of a physician or hospital who would be willing to hear about the case from me, and I discuss the case to see if they are willing to accept. Surrogates should be informed of their right to pursue an extramural appeal, such as through the judicial system. After this full process has been completed, the decision then can be implemented. If the committee agrees with the clinician, then the disputed treatments may be withheld or withdrawn, with a care plan to include ongoing provision of indicated treatments as well as comfort to the patient.
Conclusion
In summary, a proactive approach should be taken to handle requests for potentially inappropriate treatments in the ICU. Communication with the patient and family should begin at the time of ICU admission to gain trust and develop rapport. When requests for potentially inappropriate treatments occur, the initial steps include increasing communication and improving mutual understanding to find a path that is ethically and legally appropriate while honoring the goals and concerns expressed by patients and their families. If requests persist and conflict develops despite these communication strategies, clinicians should seek external assistance in a stepwise fashion. These steps may include obtaining a second opinion from colleagues, institutional ethics consult, external review, extramural appeal, and seeking transfer to another facility.
REFERENCES
- Kon AA, Shepard EK, Sederstrom NO, et al. Defining futile and potentially inappropriate interventions: A policy statement from the Society of Critical Care Medicine Ethics Committee. Crit Care Med 2016;44:1769-1774.
- Burns JP, Truog RD. Futility: A concept in evolution. Chest 2007;132:1987-1993.
- Kon AA, Davidson JE. Retiring the term futility in value-laden decisions regarding potentially inappropriate medical treatment. Crit Care Nurse 2017;37:9-11.
- Bosslet GT, Pope TM, Rubenfeld GD, et al. An Official ATS/AACN/ACCP/ESICM/SCCM Policy Statement: Responding to requests for potentially inappropriate treatments in intensive care units. Am J Respir Crit Care Med 2015;191:1318-1330.
- Truog RD, Campbell ML, Curtis JR, et al. Recommendations for end-of-life care in the intensive care unit: A consensus statement by the American College of Critical Care Medicine. Crit Care Med 2008;36:953-963.
- Nakagawa S. Communication — The most challenging procedure. JAMA Intern Med 2015;175:1268.
- Curtis JR, Engelberg RA, Wenrich MD, et al. Missed opportunities during family conferences about end-of-life care in the intensive care unit. Am J Respir Crit Care Med 2005;171:844-849.
- West HF, Engelberg RA, Wenrich MD, Curtis JR. Expressions of nonabandonment during the intensive care unit family conference. J Palliat Med 2005;8:797-807.
- Davidson JE, Aslakson RA, Long AC, et al. Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit Care Med 2017;45:103-128.
- Norton SA, Hogan LA, Holloway RG, et al. Proactive palliative care in the medical intensive care unit: Effects on length of stay for selected high-risk patients. Crit Care Med 2007;35:1530-1535.
- Quill TE. Discussing treatment preferences with patients who want “everything.” Ann Intern Med 2009;151:345.
- Kon AA. The shared decision-making continuum. JAMA 2010;304:903-904.
- Kon AA, Davidson JE, Morrison W, et al. Shared decision making in ICUs: An American College of Critical Care Medicine and American Thoracic Society Policy Statement. Crit Care Med 2016;44:188-201.
- Kon AA, Davidson JE, Morrison W, et al. Shared decision-making in intensive care units. Executive Summary of the American College of Critical Care Medicine and American Thoracic Society Policy Statement. Am J Respir Crit Care Med 2016;193:1334-1336.
- Heyland DK, Cook DJ, Rocker GM, et al. Decision-making in the ICU: Perspectives of the substitute decision-maker. Intensive Care Med 2003;29:75-82.
- Kon AA. Informed non-dissent: A better option than slow codes when families cannot bear to say “let her die.” Am J Bioeth 2011;11:22-23.
- Kon AA. Informed nondissent rather than informed assent. Chest 2008;133:320-321.
- Curtis JR, Burt RA. Point: The ethics of unilateral “do not resuscitate” orders: The role of “informed assent.” Chest 2007;132:748-751.
- Curtis JR. The use of informed assent in withholding cardiopulmonary resuscitation in the ICU. Virtual Mentor 2012;14:545-550.
- Real de Asúa D, Lee K, Koch P, et al. We don’t need unilateral DNRs: Taking informed non-dissent one step further. J Med Ethics 2019;45:314-317.
- Toh HJ, Low JA, Lim ZY, et al. Jonsen’s four topics approach as a framework for clinical ethics consultation. Asian Bioeth Rev 2018;10:37-51.
- Sokol DK. How to think like an ethicist. BMJ 2010;340:c3256.
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