Medical, Ethical and Legal Considerations When a Patient Lacks Decision-Making Capacity and Proxy

Editor’s note: This is an abridged version of an article originally published in the Cleveland Clinic Journal of Medicine. The article in its entirety, including a complete list of references, can be found here.

By Jonathan Wiesen, MD, Christopher Donatelli, MD, Martin L. Smith, STD, Laurel Hyle, JD, MPH, and Eduardo Mireles-Cabodevila, MD

Amid the various clinical decisions that must be made for critically ill patients in the intensive care unit (ICU), physicians must often confront complex circumstances involving end-of-life care. Physicians receive minimal training about their jurisprudential obligations in determining end-of-life care, and misconceptions abound regarding their legal responsibilities in this area. Moreover, each state in the United States maintains its own medicolegal system, and many physicians practice medicine in multiple clinical settings and geographic areas, all of which complicate their ability to master the law. These factors can contribute to significant uncertainty among critical care physicians regarding their ethical and legal obligations for terminally ill patients.

We present a hypothetical case to elucidate the medical, ethical and legal considerations in common end-of-life situations encountered in the ICU. After placing the case in its medical and ethical contexts, a broad legal overview at the federal and state levels will be provided

Case: A patient without DMC and without an identified surrogate decision-maker

A 78-year-old woman with a history of multiple strokes and severe dementia is admitted to the medical ICU from an extended-care facility for treatment of septic shock. The patient never completed an advance directive and has no family members or friends. A number of urgent management decisions must be made, including intubation. The attending physician believes that shifting to comfort care is appropriate.

Medical perspective

Physicians often care for patients for whom discussions and decisions about goals of care have not been established. The discomfort many physicians experience when discussing matters pertaining to end-of-life care and the ambiguity about which clinical service is responsible for holding such discussions (e.g., primary care, geriatrics, palliative medicine) also contribute to the lack of established goals of care.

Physicians caring for patients with life-limiting clinical conditions must carefully distinguish between interventions that are beneficial and those that are overly burdensome and potentially medically inappropriate or futile. Although physicians are not obligated to provide futile therapy, there is little consensus for the definition of medical futility. Brody and Halevy categorized 4 conceptual definitions of futility:

• Physiologic futility: The intervention is unlikely to have any clinical effect.
• Imminent demise futility: The patient will likely die soon regardless of the intervention.
• Lethal condition futility: The patient’s underlying disease is likely to impede long-term survival.
• Qualitative futility: The intervention is unlikely to restore a patient’s meaningful quality of life.

Any procedure that alleviates discomfort or provides palliation should not be considered futile.

While these categories of futility are generally relevant, patients often have their own perception of what they believe to be futile. In the case of this 78-year-old patient, the physician must decide whether treatment is beneficial. If the physician feels that treatment would be beneficial, then he or she would provide all indicated treatments to the patient while simultaneously searching for more guiding information. On the other hand, the physician may find the treatment to be futile or nonbeneficial. A declaration of futility is not performed through a standardized procedure or algorithm but rather is determined on a case-by-case basis. At times, physicians invoke an arbitrary six-month predicted survival metric used by the U.S. Centers for Medicare and Medicaid Services to define a terminal condition. Most often, however, futility is a clinical judgment made in partnership with a patient or the patient’s surrogates, in view of achievable goals of care. If the physician feels the therapy is futile, then he or she is not obligated to provide any therapy that would be considered futile, harmful or nonbeneficial.

Because failing to intubate the patient may result in immediate death or death within a very short time, the magnitude of this consequence could argue for using temporary intubation to create a window of time to attempt to locate someone who can speak to the patient’s wishes and values. If it is not possible to locate such a person after a thorough and diligent search, then clinically appropriate next steps should be taken as they would for any patient.

Ethical perspective

The physician must do what is best for the patient. Beneficence is the driving principle for the patient-physician relationship and often aligns with its corollary to avoid harm (nonmaleficence). As such, the physician, as the expert in the matter, must undertake a risk-benefit assessment within each situation to determine if interventions pose more potential harm than benefit, or vice versa.

Moreover, irrespective of the potential short-term outcomes, the clinician must determine if the interventions are clinically indicated or futile in the broader picture. The balance between beneficence and nonmaleficence depends on the clinical condition of the patient and the patient’s values. Ideally, clinical decision-making proceeds through a partnership between patients, physicians and other members of the clinical team.

On a practical level, there are ethically supportable strategies for clinical management aimed at promoting a patient’s best interests. Often, but not always, hospitals have policies and procedures to guide clinicians’ decisions for patients lacking DMC in the absence of healthcare proxies. For this 78-year-old patient, it would also be appropriate to include a social worker to further explore the existence of family members, friends and others who may know something about the patient’s values, lifestyle and activities of daily living prior to her strokes and dementia. Finally, the hospital’s ethics consultation service should be asked to review the case and to provide ethically supportable recommendations. Throughout the patient’s ICU stay, intensive efforts should be given to ensure the patient’s comfort.

Legal perspective

If the patient lacks DMC or cannot communicate this information, an effort should be made to determine whether the patient has historically communicated this information to anyone else. For instance, the patient may have an advance directive that provides such information, or the patient may have had discussions at some time in the past with a clinician, including a primary care provider, another member of the clinical team, a surrogate medical decision-maker or a care provider or loved one who may be able to offer insight into the patient’s perspective.

However, the patient’s goals, desires and values should form the touchstone of understanding how the patient would like to proceed in this milieu, and clinicians should be cautious not to substitute their own values or goals or those of family members, surrogates or others for those of the patient.

Additionally, clinicians’ assessments regarding the utility of specific interventions is an important part of the legal analysis pertaining to whether proposed clinical interventions will achieve the patient’s desired goals of care and comfort within the context of the patient’s values and desires. A common way to emphasize consensus among physicians is to provide notation by a second independent physician confirming the plan of care.

Mr. Smith is Director of Clinical Ethics at Cleveland Clinic. Dr. Mireles-Cabodevila is staff in the Respiratory Institute.