1 Where is the locus of decision-making authority in the intensive care unit (ICU) regarding end-of-life care?

The process of shared decision making locates the responsibility between the patient or surrogate and the caregivers, thus aiming to respect the autonomy of the patient or surrogate, as well as the beneficent and nonmaleficent intentions of clinicians. The surrogate’s responsibility is to express a substituted judgment, that is, to convey an understanding of what the patient would want. If the patient’s preferences are unknown, the best interests standard is used—a presumed understanding of what a reasonable person would want. The attending physician has the ultimate responsibility in deciding on a reasonable plan.

2 Describe the shared decision-making paradigm

The key to the paradigm is communication. The process includes meetings to allow the caregivers to learn about the patient’s values and goals, as well as to allow the patient or surrogates to learn about the patient’s condition and about the interventions that might be reasonable to use, in light of the patient’s values and prognosis. The dynamic process allows for reassessment and readjustment of plans, befitting the patient’s changing condition and goals.

3 What if clinicians disagree with the patient or surrogate?

After additional clarification of values, goals, prognosis, and treatment options, both parties can try to persuade the other and/or seek common ground. A time-limited trial of continued therapy, followed by reassessment, may bring about resolution. Consider additional informational or supportive services from other persons and clinicians who know the patient well, second-opinion consultations, social services, chaplaincy, ethics consultation, psychiatry, and/or palliative care.

4 What if the clinical team believes some interventions are futile?

There is no agreement on a precise definition of futility, yet clinicians clearly recognize when they are in a futility quagmire. The term comes up when “the team” thinks some interventions are ineffective, overburdensome, wasteful, and harmful, but they are faced with a family that demands that “everything be done” to prolong the patient’s life. Tensions increase, and people get edgy, cagey, defensive, or elusive in reaction to conflict, mistrust, and power struggles. If the procedures described in answers 2 and 3 have been tried and are unsuccessful, then the clinicians might:

Some institutions have developed a procedural “Futility Policy” or “Conflict Resolution Policy” that outlines a stepwise process for a committee to review the perspectives of the team and family before making a recommendation regarding the LSTs in question.

5 What if there is no surrogate decision maker for the patient?

Gather as much information as possible about the person to best understand the patient’s story, lifestyle, functional status, and values. Consider contacting neighbors, work colleagues, clergy, community members, primary care providers, and other outside health care providers. Use the information gained to approximate a substituted judgment to supplement the “best interests” standard to make decisions. Ethics consultation and advice from hospital legal counsel may be required to complement the plans devised by the attending physician and ICU team.

6 How prevalent is conflict in ICUs, and what are some of the sources and consequences of conflict?

The prevalence of conflict in ICUs is high, up to 70%, and most conflicts are rated as “severe,” “dangerous,” and/or “harmful.” Yet 70% of conflicts are perceived to be preventable. Conflicts occur among staff members and between staff and families. Sources of conflict include personal animosity, mistrust, poor communication, and troublesome end-of-life care. Concerns about end-of-life care include lack of psychological support, suboptimal decision making, suboptimal symptom control, treatment futility, and disregard for family and patient preferences. The perception that futile care is being rendered is strongly associated with moral distress, especially among nurses. Conflict contributes to moral distress, burnout, and job turnover. A high level of burnout has been measured in intensivists. This is disturbing, because burnout is characterized by a detached or dehumanizing attitude and a lack of concern for others.

7 List means to lessen or resolve moral distress and intrateam or team-family conflicts

Proactive family meetings, open visitation, family presence on rounds, respect of cultural norms, routine unit-level meetings, staff debriefings, collaborative care, spiritual support, relieving patients’ distressing symptoms, ethics consultation, and integration of palliative care principles and practices into the ICU.

8 What will an ethics consultant want to know when a consultation is requested?

An ethics consultant will want to know:

Equipped with this information, the consultant may then help:

9 Have ethics interventions been shown to reduce ICU length of stay or improve other ICU quality indicators?

Yes. A large multicenter randomized controlled trial of ethics consultation in the ICU showed mitigation of treatment conflicts and, for nonsurvivors, reduced ICU length of stay by 1.44 days, days of ventilator use by 1.7 days, hospital length of stay by 2.95 days, and costs (range of savings: $3000 to $40,000). These reductions were achieved without altering mortality between the intervention and control groups. Proactive multidisciplinary family meetings and palliative care interventions reduce length of stay and improve communication, symptom control, and quality of dying in the ICU.

10 What are overlapping common concerns of critical care and palliative care?

Optimizing the care of critically ill patients, whether living or dying, requires competencies shared by critical care and palliative care clinicians. These competencies include symptom management, communication and relational skills, interdisciplinary collaboration, prognostication, shared decision making, defining goals of care and setting plans, and providing psychosocial and spiritual assessment and support. Given high ICU mortality rates, the provision of excellent end-of-life care, including managing withholding and withdrawing LSTs, is a critical care priority.

11 What is the difference between acceptable end-of-life care in the ICU and active euthanasia?

Good end-of-life care in an ICU involves focusing on comfort (physical, psychosocial, and spiritual) while withholding or withdrawing LST from a patient who is expected to die in the near term of his or her underlying condition. The focus—the intent—is on achieving relief of distressing symptoms and on forgoing burdensome therapies. Occasionally, patients with life-threatening conditions survive treatment withdrawal (11%).

On the other hand, the goal of active euthanasia is the death of the patient. Direct euthanasia is illegal in the United States and in most other countries. Practitioners of active euthanasia usually also intend the comfort of the patient, but one of the means they use to achieve that goal is by killing the patient. Many persons note an ethical difference between “letting die” and “killing.”

12 Why is the administration of narcotics and sedatives during the terminal withdrawal of LSTs not considered active euthanasia?

It is not considered active euthanasia when doses are titrated “to effect,” with the intent being the relief of particular distressing symptoms. The foreseen but unintended consequences of lowering blood pressure or slowing respirations are ethically acceptable if it is clear, from the titrating of doses, that the intention is palliation. Such dosing is justifiable under the “doctrine of double effect.” However, if doses are given with the intent of causing death, then that would be considered active euthanasia (killing).

13 My patient has a “Do Not Attempt Resuscitation” status yet needs surgery. Do we need to make him or her “full code” for the operating room?

No or maybe. It depends on what the patient’s goals of care are, what he or she hopes to achieve from the surgery, and what the patient has delineated as unacceptable outcomes. Thus a discussion must occur before the surgery in the context of discussing the expected benefits and risks of the procedure in light of the patient’s condition, values, hopes, fears, and reasonable goals.

14 Are there acceptable crisis standards of care under conditions of true scarcity, such as during an influenza pandemic or a major disaster?

Crisis standards of care or altered standards of care have been proposed by various state organizations to address possibilities of severe medical shortages. Yet such altered standards, and clinical guidelines based on them, have not been widely promulgated or accepted for several reasons:

Though a utilitarian goal of “the greatest good for the greatest number” makes intuitive sense to many (and already influences our allocation of organs for transplantation), clinicians accustomed to usual standards of care may find it difficult to withhold a treatment from a person in front of them for that treatment to be allocated to another person. Furthermore, the public will not easily accept being deprived of treatments to which it previously felt entitled.

15 Should physicians be able to withhold cardiopulmonary resuscitation (CPR) from patients against the wishes of patients and surrogates?

Pro: Physicians should be able to refrain from attempting CPR when they think CPR would not be beneficial—even against the express demands of the patient/surrogate—because it is an affront to human dignity and professional integrity to perform such an aggressive brutal intervention under conditions when it is deemed to be inappropriate. Not only would the attempt be ineffective, but it is likely to be wasteful and harmful too.

Con: Given that (1) medical decision making is rooted in respecting the autonomous choices of patients, (2) prognostication is an inexact science, and (3) physicians frequently underestimate the value patients might place on seemingly undesirable states of being, physicians should not be allowed to override the stated preferences of patients or surrogates regarding something so crucial as attempting resuscitation. Providers should respect a family’s belief that one should fight for life. A family’s convictions and psychological aftereffects take priority over the providers’ transitory interest in the patient’s welfare.

16 Do universal or bundled consent forms for commonly performed procedures in the ICU improve patient-centered decision making?

Yes: The need to perform invasive and possibly life-saving procedures can arise suddenly in the course of routine intensive care. Yet it is often difficult to find someone quickly who can give consent to these procedures (such as intubation, mechanical ventilation, placement of arterial and venous lines, blood transfusions, bronchoscopy, chest tube placement). Therefore it is efficient and respectful of patient-centered care to discuss a whole bundle of procedures at the time of patient arrival in the ICU and then to request voluntary consent, allowing the patient or surrogate to learn about and decide about the whole big picture that comprises the complexities of critical care.

No: The tenets of good informed consent include the patient’s or surrogate’s capacity to understand information, giving and receiving adequate information, and the opportunity for the patient or surrogate to voluntarily consent or refuse the treatment being proposed. These are nearly impossible to achieve in a one-time orientation discussion to the ICU when a patient or surrogate may be under a great deal of undue influence to agree with whatever is being offered. The value of autonomous well-informed consent should not be sacrificed for the sake of efficiency. Clinicians should engage in the informed consent process for each invasive procedure. If they cannot locate a surrogate and if they believe performing the procedure would be consistent with the patient’s values and goals and in the patient’s best interests, the “emergency exception” to informed consent allows clinicians to proceed with that procedure.

17 Once family consent has been given to proceed with organ donation, using donation after cardiac death (DCD) guidelines, may interventions be done before death to improve organ viability?

Pro: Patients and families who consent to organ donation want to optimize the outcome of that gift. If the patient is bound to die anyway, the viability of his or her precious organs becomes paramount. It is respectful to the patient as a donor to optimize the value of his or her gift by intervening before death is declared to preserve the organs for transplantation.

Con: The preceding argument suggests that organs could be taken from persons before it is really known whether they would die of treatment withdrawal. Adhering strictly to the “dead donor rule” is respectful of patients as persons, upholds the integrity of clinicians as healers and patient advocates, and upholds the public’s trust in the medical profession. DCD guidelines make it clear that the critical care team is caring for the dying person. Not until the person dies does the transplant team begin to care for the dead donor.