WHEN TO START PALLIATIVE CARE IN ICU

While mortality from injury is correlated with Injury Severity Score and increasing age, prognosis on admission to the ICU is not always clear for every patient. The majority of trauma deaths in the ICU occur in the first 48 hours secondary to traumatic brain injury or traumatic hemorrhage, while another significant proportion (20%–30%) will linger in the ICU only to die weeks later from sepsis and multiple organ failure. In the first group, catastrophic injuries have a rapid trajectory toward death, usually with prognostic certainty; here palliative care should be started early in the ICU course, shortly after admission. In this context, bereavement support and communication with the family while attending to patient care are crucial. This early support sets the stage for later decision making, minimizes conflict and has a salutary effect on family grief, bereavement, and even organ donation rates. For patients who have a protracted course and uncertain prognosis, waiting for death to be imminent before instituting palliative care means that many patients will receive end-of-life care late, have untreated suffering and symptoms, or remain on life support long after it is futile. Thus, palliative care in some form should start early in this group as well, regardless of ultimate outcome.

All trauma patients are admitted to the ICU with the hope and expectation for life-saving care, not only on the part of their families, but physicians and nurses as well. The transition in goals of care to palliative can seem daunting in the face of these hopes. This transition is best initiated on admission with a simple palliative care assessment for likely prognosis, even if the possible outcomes are uncertain. Assessment should include not just survival and mortality risk, but expected long-term quality of life and function. If a poor outcome is possible or expected, an interdisciplinary assessment should follow of pain and symptoms, family psychosocial needs, proxy decision makers, presence of advance directives or patient preferences regarding care, and spiritual issues (Table 1).

Table 1 Palliative Care Assessment on Admission to Trauma ICU

WHAT IS PALLIATIVE CARE IN THE ICU?

Palliative care in the ICU integrates and applies the principles of shared decision making and relief of suffering to critical care practice. The family and the patient are the unit of care; this requires an interdisciplinary approach with team members from not only trauma surgery and critical care nursing, but pain management, social work, psychosocial support, and pastoral care. The unique nature of traumatic injury suggests four main domains of palliative care that are essential in the management of critically ill patients in the trauma ICU: communication and shared decision making, withholding and withdrawal of life support, bereavement and family support, and pain and symptom management. Depending on the injury and trajectory of illness, some domains may predominate. For example, palliative care may primarily focus on the family and their support, as in traumatic brain injury with rapid progression to brain death. Here minimal attention to patient comfort is required, and care is refocused on family crisis and grief, death rituals, and spiritual issues. Conversely, in the patient with sepsis and respiratory failure, palliative care will focus on pain and symptom management and shared decision making around goals of care and life support, often in parallel with ongoing aggressive critical care.

These four components of palliative care are essential for good quality care for trauma patients in the ICU. Evidence suggests that implementation of these components in a pathway or bundle improves many aspects of care. Integration of these four areas of assessment and management into standard critical care in a timed sequence ensures their application when appropriate. Assessment of patient, family, and prognosis is the first step, followed by appropriate family support, communication, and family meetings. From these steps, goals of care should be developed. This should be completed within 72 hours of admission (Table 2).

Table 2 Integrated Care Pathway: Essential Steps in Trauma ICU

COMMUNICATION AND SHARED DECISION MAKING

The foundation of end-of-life care is shared decision making between physician and the patient/patient’s family. In its simplest form, the patient or family report the patient’s wishes and preferences, while the physician contributes information on prognosis, outcomes, and treatment options, and all parties together make medical decisions that are consistent with the patient’s wishes and hopes. Through this process, goals of care are established that will guide specific therapies, procedures, use of life support, and comfort care.

Skills in communication, negotiation, and consensus building are essential for this process to be effective in the trauma ICU. The vast majority of critically ill patients lack capacity for communication due to injury or sedation, and their families must function as proxy decision makers. Direct communication with the family about the patient’s condition, proposed treatments, prognosis, and range of possible outcomes with each therapy should commence as soon as possible in the intensive care course. Questions on advance directives and patient preferences for or against life support should be posed. The earlier this happens, the less conflict will ensue in later discussions on end-of-life decisions, do-not-resuscitate orders, and withholding of life support. Conflict is most common between family and health care staff, usually when families want life-prolonging care that physicians deem to be futile. Good communication, education, and support in many cases will resolve conflict. Evidence is clear that a structured family meeting or communication within 72 hours of admission focused on goals of care improves quality of care, length of ICU stay, and patient and family satisfaction. Studies suggest that this meeting is most effective when it includes a proper setting and appropriate members of the team, and then assessment of family understanding, discussion of prognosis and goals of care, and provision of support, and concludes with recommendations for care (Table 3). In many instances, facilitation of the meeting is best done by social workers, bereavement counselors, or nurses who can provide emotional support for the family during difficult or conflicted decisions. The physician plays a critical role, however, in discussing prognosis and medical treatment options in a clear and direct fashion, and how each may or may not meet the patient’s goals of care. It is important also for the physician to make a recommendation for a care plan based on these discussions.

Table 3 Family Meeting in ICU

Adapted from Curtis JR, Patrick DL, Shannon SE, Treece PD, Engelberg RA, Rubenfeld GD: The family conference as a focus to improve communication about end-of-life care in the intensive care unit: opportunities for improvement. Crit Care Med 29(Suppl 2):N26–N33, 2001.

WITHHOLDING AND WITHDRAWAL OF LIFE SUPPORT

In the last decade, withdrawal and withholding of life support before death in the ICU has become common practice. Now more than 80% of patients who die in ICU do so in the setting of withdrawal or withholding of life support. Discussion and management of do-notresuscitate orders are standard practice in critical care, and require expertise in both decision making and its clinical applications. Ethical and legal precedents in the United States clearly place patient autonomy and the right to refuse therapy as prominent principles in end-of-life care, even if withdrawal of therapy ultimately results in the patient’s death. In addition, withdrawal of support is ethically equivalent to withholding it; once a therapy is initiated, it can still be withdrawn later if such decision meets the patient’s goals.

The decision to withdraw or withhold any therapy is based on (1) the patient’s preference, advance directives and goals of care, and (2) the benefits versus burdens of each therapy in achieving these goals. Each individual therapy is evaluated as to whether it meets the goals of care; the decision to forego cardiopulmonary resuscitation, for instance, does not necessarily imply refusal of surgery, particularly if proposed surgery would relieve burdensome symptoms. Life support can be used in time-limited trials, particularly if it is uncertain if improvement will result, and then withdrawn if it does not accomplish goals. Concerns have been raised regarding traumatic brain injuries that progress to brain death, as the issue of organ donation can complicate the palliative care plan. In reality, the option of organ donation needs to be integrated into the end-of-life discussions; if organ donation is part of the goals of care, then withdrawal of life support is not appropriate.

Once decisions have been made to withdraw life support, withdrawal should be accomplished in an appropriate setting, that is, in a manner that ensures comfort and is not unnecessarily prolonged. This is a critical care procedure that requires planning and skill. The withdrawal of the ventilator deserves special mention as it raises fears on the part of physicians and nurses that it will hasten death, and on the part of families that it will cause breathlessness and feelings of suffocation. Families need to be reassured that dyspnea can be treated, and in most cases comfort is assured for a peaceful death. Several procedures for ventilator withdrawal have been described. The terminal wean involves slowly weaning (15–20 minutes) ventilator support as well as oxygen so that opioids can be titrated to control symptoms, but the endotracheal tube is left in place to prevent airway compromise from secretions. Immediate extubation and treatment with humidified air or oxygen via face mask is preferred in many situations, since it has the advantage of removing unsightly tubes and allows the patient to communicate. The choice again is guided by the goals of the patient and family for the end of life. The patient should be premedicated with opioids for dyspnea prior to extubation and then reassessed after ventilator withdrawal for symptoms, initially every 10–15 minutes. There is no role for neuromuscular blockers, as they only mask symptoms and do not ameliorate them. Anxiety from breathlessness or hypoxia can be treated with small doses of benzodiazepines as well. There is no evidence that appropriate treatment of dyspnea in this situation hastens death. Families usually want to be present at the bedside and this should be encouraged and accommodated, although they need to be prepared for the dying process and how it looks.

PAIN AND SYMPTOM MANAGEMENT

Quality care of the trauma patient in the ICU includes good pain and symptom management. Attention to relief of suffering is not only ethical and compassionate, but also abbreviates the sympathetic response and physiologic and immunologic derangements associated with surgical stress and painful injury. Studies suggest that inadequate treatment of pain and anxiety in the ICU can lead to long-term sequelae with post-traumatic stress disorder and poor psychosocial outcomes and function. Concerns that treatment of pain in the ICU will lead to hemodynamic or neurologic compromise are for the most part unfounded, and aggressive symptom control can be delivered in parallel with resuscitation in unstable patients. Short-acting agents such as fentanyl and propofol provide pain relief and deep sedation, respectively, in such situations. Newer agents such as dexemetomidine that sedate without respiratory compromise show promise as well.

Assessment of pain and symptoms can be difficult in the critically ill, particularly trauma patients with brain injury. Unconscious, sedated, and noncommunicative patients cannot report their pain. This is a barrier to good pain management in the ICU. Little is known of the importance of other non-pain symptoms, but evidence suggests that symptoms such as thirst, anxiety, and sleeplessness are not only common, but distressing, even to patients who already are receiving pain management. Other studies have noted that even routine nursing and medical procedures such as suctioning and turning are distressing and painful.

Pain management is based on assessment and frequent reassessment of patient. Communicative patients should be assessed based on a numerical rating score (0–10) as reported by the patient. Noncommunicative patients must be assessed by observed behavioral response cues such as grimacing, splinting, restlessness, and so on. Behavioral response scales have been validated but are not in wide use. Sedation may make them less reliable. These in combination with intuitive judgment, physiologic variables, and family input may be helpful, although they are highly subjective.

Response to therapy must be gauged by consistent objective parameters and reassessed frequently. Opioids are the mainstay of therapy, and continuous infusions are first choice for administration, particularly for ventilated patients. Titration should be based on objective pain scores, and infusion increases accompanied by a bolus to produce a more immediate effect. In the end-of-life situation, if intravenous lines are to be avoided, opioids can be delivered via a patch, subcutaneous infusion, or oral suspensions with good effect, although it is difficult to achieve rapid titration with these modalities.

Treatment of anxiety, agitation, and delirium is also important for the critically ill. The presence of these symptoms is clearly associated with complications and longer ICU stay. Therapy with psychotropic drugs to reinstitute or preserve the sleep–wake cycle may be helpful, although in some patients benzodiazepines only exacerbate the situation. Tricyclic and serotonin reuptake inhibitors may be better, but data are scarce. For the terminally ill and imminently dying, sometimes terminal sedation is necessary. In these conditions, a combination of haloperidol and benzodiazepines is useful. Scopolamine is also indicated for its anticholinergic effects in the treatment of secretions.

FAMILY AND BEREAVEMENT SUPPORT

Palliative care adheres to the concept that the patient and the family are considered the unit of care. This is a useful construct in the trauma ICU, as families of critically injured are often in crisis, bereaved, and require lots of support and communication during the ICU stay. This is particularly important when surviving family members are called on to make end-of-life decisions for the patient. Professionals who can provide emotional support as well as consistent communication are essential. Attention to this early in the patient’s course in the ICU can help support the family but also avoid or prevent conflict around decisions later. This role can be fulfilled by various members of the health care team: social workers, pastoral caregivers, bereavement counselors, but also nurses and physicians. Communication skills in breaking bad news are important for the trauma surgeon, as the manner in which this is done and support offered in this process can have significant impact on family members’ bereavement process.

It is now clear that the presence of family in the ICU is important both to the patient’s recovery but also the family’s well-being. The opportunity to say “goodbye” to the dying patient is important for long-term bereavement, even if the circumstances of death and dying seem traumatic or unsightly. Open family visiting hours in ICUs are fast becoming the standard of care and should be encouraged. Family presence at resuscitation is more controversial, but again appears to have a salutary effect. This can be encouraged in selected situations. Someone from the health care team should accompany the family to provide support during the resuscitation. When a patient is expected to die in the ICU, attention should be paid to spiritual care and rituals. Assistance with these matters should be part of the interdisciplinary care provided by ICU staff.