LONG-TERM OUTCOMES OF ICU PATIENTS
VI. PROVIDING PALLIATIVE CARE IN THE ICU—IT’S NOT JUST FOR END-OF-LIFE
ICU care. Their underlying illnesses and the procedures we do to diagnose and treat them can be accompanied by pain, dyspnea, anxiety, delirium, agitation, nausea, vomiting, secretions, pruritis, diarrhea, constipation, and other physical and psycho-social-spiritual discomforts. Preventing and palliating these distressing symptoms are goals shared by critical care and palliative care clinicians—whether the patient is receiving life- prolonging care or end-of-life care. Sometimes, formal palliative care consultation is warranted in the ICU, not only when patients are dying. Palliative care interventions have been shown to reduce length of stay and to improve symptom control, communication, and the quality of dying in the ICU. Social service and chaplaincy interventions can be employed as part of or separately from palliative care consultation. Patients, families, and staff are greatly supported by these services, especially under the stressful
circumstances of ICU and end-of-life care.
B. General management of sedation, analgesia, and delirium is covered in Chapter 7 of this handbook. Here, we address clinical and ethical concerns related to withdrawing life- sustaining therapies from patients who are expected to die.
C. Legal and ethical opinion have established that competent individuals may refuse life- sustaining therapies, or have them withdrawn once started; they have also established that surrogates can make such decisions for patients who lack decision-making capacity. The law has evolved over time, balancing the autonomous rights of patients and the state’s interest in preserving life. For surrogate decision making, states vary in their
requirements of the level of evidence needed to discern the preferences of a previously competent person. So it is important to be familiar with your local legal standards.
D. Three ethical assumptions underlie the practice of forgoing life-sustaining treatment:
1. Withholding and withdrawing treatment are considered equivalent.
2. There is a difference between “killing” and “letting die.”
3. One is permitted to use medications to relieve suffering at the end of life—even if side effects of those medications might hasten death—as long as the intent of using the medications is to relieve suffering. For patients who are terminally ill, risking the foreseen, but unintended, consequence of hastening death is justified under the
“doctrine of double effect.”
a. Although some controversy surrounds these assumptions, they have been guiding principles for clinical practice and U.S. legal thought regarding end-of-life care.
VII. GUIDELINES FOR WITHDRAWING LIFE-SUSTAINING THERAPIES (LSTs) A. Goals for the withdrawal of LSTs include the following:
1. Promoting comfort and respecting the wishes of the patient:
a. Withdrawing burdensome therapies
b. Maintaining or achieving the patient’s ability to communicate, if possible c. Preventing or palliating distressing symptoms
2. Supporting and respecting the family
a. Physically, emotionally, spiritually—within their cultural norms 3. Allowing death to occur
B. Your intensive focus now is the provision of comfort for this patient. All clinical orders should be reexamined with a goal toward palliative and comfort care. Consider
consulting palliative care, particularly if care of the patient will continue outside the ICU. Reassess the equipment in the patient’s room and remove unnecessary items in order to make room for comfortable seating for family members. Minimize monitors (and their alarms). Therapies that increase patient comfort or relieve pain, anxiety, or agitation should be continued or added (Table 42.4). Therapies directed toward supporting physiologic homeostasis or treating the underlying disease process are no longer indicated and may be discontinued. These include many of the “routine”
procedures and interventions associated with being an ICU patient (Table 42.5). The benefit-to-burden ratio of each intervention should be used to determine which
interventions should be eliminated. The precise order of discontinuation is tailored to the patient’s situation and reasonable family preferences. Most commonly, a stepwise
approach is followed, with mechanical ventilation discontinued after the withdrawal of vasopressors, antibiotics, or enteral feedings.
TABLE
Examples of Comfort and Palliative Measures in ICU
42.4
Continuation of general nursing care and cleanliness Special clothing, blankets, stuffed animals
Offering of food/water to alert patients Playing music
Nonpharmacologic sleep-promotion strategies Control of oral secretions
Humidified air Analgesics Sedatives
Anticonvulsants Antipyretics
Nonsteroidal anti-inflammatory drugs Prophylaxis for gastrointestinal bleeding Antiemetics
C. Individualized Care. The guiding principles behind shared decision making apply in these situations: prioritize the patient’s/family’s values surrounding end-of-life practices—especially religious or spiritual and cultural—while providing situation- specific professional advice regarding clinical management practices. The family might not have ever experienced an ICU death. Or, perhaps they have, and it went well or went poorly. In the preparatory phases, explore the patient’s/family’s hopes and fears about the process. Hold a separate premeeting involving physicians, nursing, and respiratory
therapy to discuss withdrawal scenarios for this patient, and determine the optimal clinical options. Frame your clinical recommendations on the basis of the
patient’s/family’s values and your clinical expertise in end-of-life care. Provide
assurance of the patient’s comfort throughout the process and invite family presence for as much as they feel comfortable. Assure the family that you will help them understand and cope with the end-of-life events as they unfold. Perhaps what they need most is just to hold their loved one again and prepare for a world without them.
TABLE
Examples of Routine Measures That May Be Withdrawn During the Process of Withdrawing Life-Sustaining Therapy
42.5
Frequent phlebotomy for laboratory tests Frequent vital sign determinations
Placement of venous and arterial lines Radiographic examinations
Aggressive chest physiotherapy and endotracheal suctioning Debridement of wounds
Thromboembolism prophylaxis
The process of withdrawal should be clearly explained and the family educated about what to expect. For example, it is helpful to describe changes in skin color that occur, noises due to airway secretions, and the irregular breathing pattern preceding death. Explain that these changes usually are not consciously felt by the patient and that you will be vigilant to prevent or alleviate distressing symptoms. Practical wishes of the patient and family concerning the desirability of extubation can usually be
accommodated. The anticipated rapidity of the dying process or realities of the patient’s medical condition, however, may dictate specific choices concerning therapies to be withdrawn, the rate of withdrawal, and the ability to accommodate the requests of families. When a rapid death is anticipated, it may be impossible to accommodate requests to communicate with the patient after extubation or to hold prolonged vigils.
D. Specific LSTs that may be withdrawn include the following:
1. Vasopressor and inotropic support can be discontinued without weaning. The gradual withdrawal of circulatory support appears to offer no benefit for patient comfort.
2. Extracorporeal support therapies are usually considered quite invasive by the patient and the family. These therapies require maintenance of vascular cannulae and
the presence of additional equipment and personnel at the bedside. Intermittent extracorporeal support (e.g., intermittent hemodialysis) may simply not be restarted.
Continuous renal support (e.g., continuous venovenous hemofiltration) can be discontinued. Death is usually not immediate following the discontinuation of dialysis, often occurring more than 1 week following discontinuation. Continuous circulatory support (e.g., ventricular assist, extracorporeal membrane oxygenation, intra-aortic balloon pump) can be discontinued and death anticipated soon after termination of support. Decisions regarding removal of vascular access devices not only should reflect patient comfort and family preference but also may take into account the risk of excessive bleeding due to uncorrectable coagulopathy.
3. Antibiotics and other curative pharmacotherapy. After the decision is made to terminate LSTs, therapies directed at cure are no longer consistent with the GOC.
Such therapies include cancer chemotherapy, radiation therapy, steroids, and antimicrobials—unless the treatments play a significant palliative role (such as topical antifungal agents, oral hygiene, or antibiotics aimed at treating painful lesions).
4. Supplemental oxygen. If the avoidance of hypoxemia is no longer a therapeutic goal, supplemental oxygen may be discontinued and the patient returned to breathing room air. This is reasonable even if it is decided that mechanical ventilation will be
continued. If the patient is removed from the ventilator but continues to have an artificial airway in place (e.g., endotracheal tube or tracheostomy), humidified air can be administered to avoid the irritation of drying the airway and secretions. The continuation of supplemental oxygen often merely prolongs the dying process without providing comfort. An exception would be made for a dyspneic patient who desires to be alert for as long as possible.
5. Mechanical ventilation is the most common therapy withdrawn when LSTs are discontinued. Some physicians, however, prefer to withdraw therapies other than mechanical ventilation (such as vasopressors) with the expectation that the patient will die while still receiving mechanical ventilation. Similarly, during a prolonged illness, patients’ families may have become comfortable with the surroundings of the ICU, the monitors, the artificial airway, and the mechanical ventilator. They may fear that the patient may suffer if mechanical ventilation or airway support is withdrawn, or they may believe that it is wrong to withdraw such support. Under such
circumstances, it is reasonable to continue mechanical ventilation and airway support while discontinuing other LSTs. Nevertheless, mechanical ventilation does not differ morally or legally from other LSTs such as dialysis and can be discontinued if the patient or his or her proxy believes that it represents unwanted therapy.
a. Mechanical ventilation may be gradually withdrawn by decreasing the inspired oxygen to room air, decreasing positive end-expiratory pressure, and then gradually decreasing ventilatory rate. We recommend that this be done over several minutes (not hours), allowing for the titration of palliative medications.
The rate of decrease is quite variable among practitioners. An overly slow
“weaning” process may prolong the dying process and may provide the family with a misleading hope for survival.
b. Or, mechanical ventilation may be discontinued rapidly and humidified air
administered via T-piece, or the ventilator can simply be removed from the patient and the patient extubated. Extubation may result in death more quickly compared with gradually decreasing the intensity of mechanical ventilation. It is important to anticipate, prevent, and be ready to treat dyspnea, obstruction, and air hunger.
c. The gradual and rapid techniques are each applicable in certain situations.
Discuss with nursing and respiratory therapy to discern best strategy for a specific patient. The ability of the patient to maintain a patent airway, the presence of secretions, the perceptions of the patient and family, and the
confounding presence of anesthetic drugs and neuromuscular blocking agents all may dictate a particular method of discontinuing mechanical ventilation. Invasive monitoring and analysis of arterial blood gas tensions or oxygen saturation are unnecessary during withdrawal of mechanical ventilation.
d. The timing of death after the withdrawal of mechanical ventilation is uncertain and depends on the etiology and severity of respiratory failure. Usually death occurs within a few hours to one day. In some studies, however, a small
proportion of patients with chronic lung disease unexpectedly survived and were discharged from the hospital after withdrawal of mechanical ventilation. This observation is humbling: our prognostication is not infallible.
6. Nutrition (enteral or parenteral), fluid resuscitation, blood replacement, and
intravenous (IV) hydration are considered forms of life-sustaining therapies and may be discontinued when sustaining or prolonging life is no longer the goal. Nasogastric and orogastric tubes may be removed, unless they are needed for comfort purposes.
Case reports and controlled studies suggest that little, if any, discomfort accompanies the withdrawal of enteral nutrition and IV hydration. In fact, the continuation of
artificially administered fluids and nutrition can lead to edema and distressing bowel symptoms in dying persons. Nevertheless, families can be quite upset if it is
perceived that their loved one is being “starved.” If so, discussions would be in order about the natural slowing of metabolism during the dying process and the potential complications of artificially providing too much nutrition and hydration.
A reasonable compromise might be reached, with the provision of small amounts of nutrition and hydration.
E. Indications for Pharmacologic Intervention
1. Presumption for comfort measures. Clinicians should not withhold comfort
measures for fear of hastening death. Patients who are given large doses of opioids to treat discomfort during the withdrawal of life-sustaining treatments on average live as long as patients not given opioids, suggesting that it is the underlying disease process, not the use of palliative medications, that usually determines the time of death.
2. Standard of care. The administration of sedatives and analgesics during the withholding or withdrawal of life-sustaining treatments is consistent with the standard of care for critically ill patients. The majority of ICU patients do receive these medications during the withholding or withdrawal of support. Certainly, competent patients may refuse pharmacologic intervention to preserve lucidness.
Drugs may not be indicated for patients who will gain no benefit (e.g., comatose
patients).
F. Specific Indications
1. Pain. The patient’s report of pain or discomfort is certainly the best guide for
treatment. When the patient is unable to communicate effectively, then other signs and symptoms of pain such as vocalizations, diaphoresis, agitation, tachypnea, and
tachycardia may be valuable.
2. Air hunger/dyspnea. Especially with the withdrawal of supplemental oxygen and mechanical ventilatory support, discomfort should be expected and anticipatory doses of anxiolytics and opioids should be administered. Additional doses should be immediately available and opioids continued as a continuous infusion. Clinicians must be immediately and continuously available to assess the patient’s level of comfort and provide additional medication as necessary.
3. Death rattle. Noisy, gargling breathing may occur in patients who are close to death, particularly in extubated patients. Although these sounds may be accompanied by dyspneic symptoms in the patient, they are usually more distressing to family
members who are present. Treatment can include repositioning, gentle oropharyngeal suctioning, anticholinergics, and preparation and reassurance of the family.
4. Anxiety. Alert patients may display varying levels of anxiety at the prospect of
termination of life support. Although nonpharmacologic means of allaying anxiety can be extremely effective, sometimes patients request to be deeply sedated or
unconscious prior to the discontinuation of life-sustaining therapies such as mechanical ventilation. Although death might be hastened by deep sedation, such requests can be honored.
5. Agitation or excessive motor activity. Nonspecific motor activity may occur in some patients. Such activity is often interpreted as discomfort or distress by those attending the patient. It is reasonable that the level of sedation be increased in such situations. Neuromuscular blockade is never indicated because it does not treat the presumed underlying distress of the patient.
6. Avoidance of drug withdrawal. Often, patients are already receiving high doses of opioids or sedatives during the course of their illness and have developed drug tolerance. The patient’s individual dose ranges can be used as a guide to provide increased amounts of opioids and sedatives during the discontinuation of support.
Certainly, there appears to be little reason to decrease therapeutic doses of sedatives or opioids prior to the discontinuation of support for fear that the patient will not breathe adequately once the ventilator is discontinued.