Chapter 53. End-of-Life Issues in Emergency Critical Care

The majority of patients who are admitted to medical critical care units and many of those in surgical intensive care units begin their hospital course in the emergency department (ED). Thus, ED clinicians set the stage for the future management trajectory, usually initiating aggressive life-saving measures, with a curative and resuscitative approach to care.1,2 Due to advances in technology, deaths in critical patients often result from limitation of life-supporting measures as opposed to a natural decline from disease or age.3 This has resulted in an expansion of the mission of critical care to include provision of the best care available for dying patients and their families.4 In 2003, an International Consensus Conference was convened to discuss some of the end-of-life challenges and to address the issues related to optimal care for dying critical care patients.5 In order to achieve the best “quality” of life rather than just an emphasis on the “quantity” along with cure, it is essential to focus on patient comfort from the onset of care.2,4,5

Essential to the goal of providing good end-of-life care is understanding a few key concepts: (1) death is not a professional failure, (2) a pain-free death must be assured, (3) effective communication with family and surrogates is needed for “shared decision” making, (4) goals of care discussions aid in the “shift” from a curative to a comfort approach, and, most important, (5) a multidisciplinary team approach is absolutely essential and should include nurses, house staff, social workers, family support teams, chaplains, and, when appropriate and available, subspecialist palliative care consult teams.6 We further discuss the following domains frequently encountered in end-of-life care provision: (1) advance directives, (2) goals of care discussions and communication, (3) death-related issues that include delivery of bad news, death notification, and family witnessed resuscitation (FWR), (4) withdrawal of life support, and (5) palliative care with optimal symptom management at end of life.

Currently, decision making in critical care patients varies widely and may not always defer to patient autonomy.5,7,8 A major study reported that physicians did not consistently document a do not resuscitate (DNR) order for patients who did not wish to have cardiopulmonary resuscitation (CPR),7 whereas another showed that DNR orders were followed only 58% of the time.8 Patient-value-based management and respect for patient autonomy involve a shared decision-making model that may be essential to increasing patient and family satisfaction with critical health care.

Determining Decision-Making Capacity

Determining decision-making capacity is an essential step toward assessing patient needs and values and is decision specific.9 This means that the patient may have the capacity to make one particular decision but not have the same capacity for another. Physicians are responsible for judging capacity, whereas competency is assessed by a judge. A list of questions to help assess capacity include: (1) Can the patient understand and process the information? This requires him or her to relay back the content in lay terms. (2) Can the patient analyze and understand consequences? This essentially means he or she is able to weigh the risks/benefits and to communicate the reasoning behind his or her decision. (3) Can the patient communicate his or her choice? This is particularly difficult in the nonverbal, ventilator-dependent patient who may not be able to convey the elements essential to an informed consent. His or her attempts may be prone to a biased interpretation based on values of the person obtaining consent.9 A patient for whom the answer to any of the above is “no” essentially lacks decision-making capacity.

Surrogate Decision Making for Incapacitated Patients

Advance directives or surrogate decision makers come into play when a person lacks decision-making capacity. Living wills or written advance directives are rarely found to be at hand in emergent situations and, even if available, are often not specific enough to be applied to all routine, day-to-day medical decisions.10 The main value of such documents is perhaps in the event of imminent death when a specific choice of no mechanical ventilation or no CPR is requested. In critical situations, the availability and access to a patient's designated legally authorized representative, surrogate, proxy, or durable power of attorney for health care decisions is more helpful and important for daily decision making. Using a surrogate, though, has its own limitations; some studies have found that surrogates may often fail to accurately represent the patient's wishes,11 whereas others have shown that family members have high rates of anxiety and depression that may compromise effective decision making.12 It is important for clinicians to guide the surrogates early, in order to make sure they understand their role in making decisions for the patient. Many have summarized that the role of a surrogate is to provide a “substituted judgment” for the incapacitated patient based on his or her knowledge of the patient and previous statements made by the patient, and should not be based primarily on the surrogate's own values.11,12 In the event of no available pre-identified, legally authorized surrogate, family members are often involved in decision making. In many states, a hierarchy of responsibility may be as follows: spouse, adult child, parent, adult sibling, adult relative, and then a close friend. In cases of interfamily conflict, involvement of ethics committees or court action may also become necessary. Despite a surrogate, major decisions will often also involve the approval of most close family members and effective communication therefore becomes an essential tool for the clinician.13

In surveys of critical care patients' families, it is reported that families consistently rate communication as among their most important concerns and often report dissatisfaction with the manner in which they were informed about the diagnosis, prognosis, and treatment and in general the quality of communication with the critical care staff.7,10,14,15 Models of communication are being increasingly addressed in critical care literature and emphasize a “shared decision” making, proactive approach to resolving conflicts and reaching consensus (Figure 53-1).5,13,16–19 Guidelines suggest that when organizing such goals of care family conferences, clinicians take into account the specific needs of families that have been identified in studies to include reassurance that the patient's symptoms will be managed; clear information conveyed to caregivers about the patient's condition and treatment; a willingness of staff to listen and respond to family members and to address their emotions; value patient preferences; clear explanations about surrogate decision making; and reassurance of continuous, compassionate, and technically proficient care until death occurs.17 Decisions should generally be made collaboratively by clinicians partnering with patients' families. Treatment choices should be crafted to meet specific, achievable goals.20 The process is one of negotiation, and the outcome will finally be determined by the personalities and beliefs of the participants. Ultimately, it is the physician's responsibility, to decide on how reasonable a planned action may be. If a conflict cannot be easily resolved, an ethics consultation may be helpful.4,5 Communication with family members is not different from other aspects of critical care and requires training, interdisciplinary teamwork, and implementation of effective/flexible protocols to achieve the best possible outcome (Table 53-1).13,18,21

Delivery of Bad News and Death Notification

Delivery of bad news, especially death notification, is perhaps the most difficult, emotionally laden communication task that physicians perform.22,23 Physicians often report factual medical information but avoid the most stressful issues and have trouble with empathic disclosures.23 Stressors include the physician's fear of being blamed, the difficulty in dealing with surviving family members' emotions, and the physician's own personal fear of death.24 ED death notifications may be especially difficult because: (1) ED deaths are often sudden/unexpected, due to an acute traumatic event, or may involve young patients, (2) there is usually no preexisting relationship between the physician and the patient or family, (3) the chaotic, public environment of the ED itself may not be suitable for the family to grieve privately, and (4) clergy or social service support staff may not be readily available.22,25 Various methods to inform families of the death of a loved one exist, and it is important to remember that the clinician has a responsibility toward the survivors since the words spoken to them will linger in their memories and influence the grieving process.22,23,26 The GRIEV_ING intervention has been shown to improve physician confidence and competence in death notification. This method is outlined in Table 53-2. It may be important for each clinician to refine the particular language he or she uses in such situations, rehearse a stepwise approach to decrease his or her own stress, and review the terminology in advance when using a translator. With the rapid growth of telecommunications, it is best that phones and beepers be switched to a vibrate mode so there are no interruptions. It is also recommended that clinicians sit down to emphasize the importance of being available for questions and not rush through the delivery. Delivering the news appropriately with compassion will ease the grief period and allows loved ones to reclaim their lives.26

Family Witnessed Resuscitation

Recent literature advocates family member presence during CPR.27–30 The perceived benefits of FWR are the following: (1) most family members prefer to be given the option to be with the patient at time of death, (2) although such experiences are emotionally draining, they may assist in bereavement and decrease complicated grief, (3) may reduce overall fear or anxiety, (4) provide higher sense of connection with the patient, (5) remove doubt that everything possible was done for the loved one, and finally (6) provide a feeling of closure.27–30 Provider attitudes, though, continue to represent a barrier to FWR: concerns that family involvement might cause distress for survivors, interfere in the resuscitation, distract or intimidate the team, bring greater pressure to prolong the code, cause anxiety in pronouncing death, and may lead to increased malpractice litigation, when in fact family members are probably less likely to seek medical litigation, if they feel everything possible was done.29,30 There also appears to be more hesitation in the urban setting as compared with suburban, possibly due to lack of adequate ancillary support or underlying nature of the types of resuscitations.30 The concerns cited with FWR include the issues of: (1) human dignity, (2) personal privacy, and (3) the provision of adequately trained staff to help relatives cope with the emotional trauma the experience of being a witness may invoke. However, most agree that a multidisciplinary, well-planned, and practiced approach is necessary and should be used to develop and enhance an institutional protocol, address staff concerns, and train family facilitators.30

If analyzed closely, almost all patients who die while receiving medical attention in a critical care setting do so as a result of withholding or withdrawing of life-sustaining therapy.3 Sometimes, the decision is made to not resuscitate the patient prior to the terminal decompensation and at other times because even multiple, vigorous resuscitation attempts have failed to halt the terminal decline and cannot be provided indefinitely.3 The practice varies among countries and institutions.31,32 Withdrawal of life support measures is sometimes necessary early in the care of a critical patient in the ED: for example, if a patient was initially placed on mechanical ventilation and the family wishes withdrawal after accepting the extremely poor prognosis in the case of a catastrophic intracranial bleed.

Ethically, there exists no distinction between the decisions to withdraw a specific treatment and a decision not to initiate a treatment.31 Sometimes, initiating a time-limited course of aggressive therapy may actually be beneficial to family and caregivers, and necessary in order for them to come to terms with a critical patient's condition and to allow clinicians to adequately evaluate all treatment options.31 As with any other treatment, if this trial does not improve status and fails to show any benefit, then there is justification for its withdrawal. CPR is the therapy most often withheld and DNR orders may precede up to 60% of all deaths.3,7,33 Mechanical ventilation, vasoactive drugs, renal dialysis, and antibiotics are the other therapies commonly withheld. The most commonly withdrawn therapy prior to death is mechanical ventilation, followed by vasoactive drugs.3,33–35

Many algorithms for medical management of withdrawal of ventilator support in the ED exist.36–39 The decision to withdraw or withhold therapy is best achieved by a consensus between the critical care team and family. Discussions with surrogates should be frank and consistent. Withholding or withdrawal of life support should be recommended, not merely listed as an option. The rationale used to come to this recommendation, including prognostication and disease-specific data, should be communicated to family in lay terms.13,19,21 Often, multiple meetings may be necessary after the initial recommendation to reach consensus.33 It is also advisable not to make CPR the focus of discussions, but rather to focus on the goals of care, which should define whether a therapy will be withheld or withdrawn.

Once the decision is made to withdraw mechanical ventilation and life support, all interventions should be stopped including vasopressors and antibiotics.36,38,39 Family and caregivers should be made aware that death may not happen instantaneously and in fact some patients may survive for many hours postwithdrawal.33 In all cases, a humane, pain-free process should be assured and the family presence at bedside encouraged. The administration of sedatives and analgesics may not hasten death; in one study, median time to death following the withholding/withdrawal of life support was 3.5 hours in patients who received such drugs compared with 1.3 hours in those who did not.37 Both extubation and gradual weaning have been used, and patients should be premedicated and have staff present at bedside to answer concerns during and after the process.38,39 One such protocol suggests the following steps: (1) first, discontinue all paralytics allowing full return of neuromuscular function, (2) disable all alarms, (3) titrate sedation to comfort—continuous infusions are least obtrusive, (4) reduce FiO2 to room air and PEEP to zero over 5 minutes or less, (5) gradually reduce volume and pressure support over 20–30 minutes, and finally (6) once the patient is comfortably sedated on above settings, extubate or change to a T-piece.

Disagreements can occur among family members and also between caregivers and clinicians, especially when some may strongly believe in preserving life at all costs because of cultural or religious beliefs. Such disagreements can cause tension and moral distress among families and clinicians. Again, a multidisciplinary approach with a dedicated staff who has received prior training might facilitate and ease such decision making.

The Ethics Committee of the Society of Critical Care Medicine in 2001 and the consensus conference in 2003 published guidelines based on identified end-of-life needs of patients, families, and providers.4,5,31 Previously identified patients' needs at end of life are to receive adequate pain management, avoid inappropriate prolongation of dying, achieve a sense of control, relieve themselves of burdens, and strengthen their relationships with loved ones.7,40,41 The families' needs are to be with their loved one during the dying process, be helpful to their loved one, be kept informed of the changing clinical status, understand the process of what and why therapy is being done, be assured of the patients' comfort, be comforted themselves, express their own emotions, be assured that their decisions regarding the patients were correct, and find meaning in the dying of their loved ones.5,17 The needs of the health care providers are to establish consensus regarding the goals, have strategies for providing palliative care, gain knowledge and skills in palliation, be supported in their tasks by their institutions, and have opportunities for grieving and bereavement after patients die.5,31

Close attention to the principles of good pain management, communication with patient and family, and discussion of goals of care are not just for patients who are at the end of life, but are appropriate care for all critically ill patients, regardless of prognosis. In this framework, “intensive care” encompasses palliative and curative care.2,42 With the recent growth in the palliative care field, many hospitals may have subspecialist-level, formal consultation teams to assist the critical care and ED physicians in many of the end-of-life issues discussed above.1,2 However, most institutions still lack such support and a multidisciplinary approach to care with involvement of nursing, social workers, bereavement, and family support teams may maximize utilization of institutional resources.

Optimal symptom management at end of life should remain the focus of the clinician, whether a curative or a comfort approach to patient care is being followed.4,5,42,43 Management of uncontrolled pain and avoidance of oligoanalgesia based on misconceptions is necessary. Cautious individual titration of opioids to analgesic effect is safe, effective, and rarely associated with addiction, clinically significant respiratory depression, rapid tolerance, or euphoria.42,44 The use of pain assessment tools especially in the nonverbal patients, frequent reassessments, and therapy geared toward objective and subjective endpoints may facilitate this goal.

The patient must be provided with sufficient analgesia to alleviate pain and distress; if such analgesia hastens death, this “double effect” should not detract from the primary aim to ensure comfort.5,31 The rule of double effect has been invoked to guide decision making in many end-of-life situations, for example, in terminal or palliative sedation, the practice of using sedatives in the terminally ill at doses that render a patient unconscious as a last resort measure to provide relief from suffering due to distressing symptoms of dyspnea or pain.45–47 This practice is to be clearly differentiated from euthanasia or physician-assisted suicide, in which the intent is to cause death. Recently, the Supreme Court has unanimously ruled that there is no constitutional right to physician-assisted suicide. However, it went with a majority, effectively requiring all states to ensure that their laws do not obstruct the provision of adequate palliative care, especially for the alleviation of pain and other physical symptoms of people facing death.47 One Supreme Court Justice even stated, “a patient who is suffering from a terminal illness and who is experiencing great pain has no legal barrier to obtaining medication, from qualified physicians, to alleviate that suffering, even to the point of causing unconsciousness.” Unlike euthanasia, most terminal sedation protocols require titration at fixed intervals to reassess underlying symptoms and ongoing need, with the intent to provide optimal symptom relief at the lowest therapy dose. As always, frank and detailed conversations with family and caregivers are necessary prior to any major therapeutic interventions.45–47

For provision of optimal end-of-life care to critical patients, it is recommended that clinicians: (1) refer to the basic ethical principles of patient autonomy, beneficence, and nonmaleficence, (2) recognize the necessity to shift from a curative to comfort care approach and consider limitation of life-prolonging treatments when the clinical situation is hopeless, (3) base the decision-making process to ascertain hopelessness of a clinical situation on a thorough patient evaluation and an ample time course, (4) communicate effectively with family/surrogates for shared decision making, (5) document discussions and decisions, (6) use a multidisciplinary approach to end-of-life care, and finally (7) implement thorough palliative care and symptom management strategy once the decision to withhold or withdraw life-sustaining treatments has been made.5