The Complex Intersection of Critical and Palliative Care
September 1, 2015
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By Elaine Chen, MD
Assistant Professor, Department of Internal Medicine, Division of Pulmonary and Critical Care Medicine, Section of Palliative Medicine, Rush University Medical Center, Chicago
Dr. Chen reports no financial relationships relevant to this field of study.
Following initiation of mechanical ventilation for respiratory failure, most patients are successfully weaned, but some develop ventilator dependence. These patients or their families may opt for long-term ventilator support or withdrawal of the ventilator with the understanding that death will likely ensue. Here we address ventilator-dependent patients who otherwise have functioning vital organs. What options are available, what questions need to be answered, and how should we proceed.
Ventilator withdrawal is multidisciplinary, with a complex and evolving history involving ethics, law, and culture.1,2 Healthcare providers in critical care settings should be able to counsel their patients about the risks, benefits, and options regarding mechanical ventilation in both the short term and the long term. Patients and families may face ethical and psychological barriers, and clinicians should be prepared to discuss these concepts. Once a decision has been made to withdraw the ventilator, the clinician must be able to manage symptoms, which may include dyspnea and anxiety, during the peri-withdrawal time period.3,4
EPIDEMIOLOGY
Withdrawal of life support in the intensive care setting is increasing in frequency. More than half a million deaths a year, or 20-25% of all deaths in the United States, occur in ICUs.5 Serial review of ICU deaths in San Francisco found that from the 1980s to the 1990s, the percentage of ICU deaths that occurred following withdrawal or withholding of life support increased from approximately 50% to approximately 90%.6,7 The factor most strongly associated with withdrawal of mechanical ventilation are the physician’s perception of patient’s preferences about use of life support.8 This emphasizes the importance of asking patients, especially those with serious or life-limiting illness, to consider what kind of quality of life is acceptable when they are stable in the outpatient setting.
PROGNOSIS
When deciding whether to withdraw ventilator support, families often want an estimate as to how long the patient is likely to survive following removal. Uncertainty is the rule, but having a rough prognostic estimate can be useful. A predicted survival time of ≤ 60 minutes following withdrawal has been used to help families and clinicians prepare for palliative symptom management, family grieving, and allocation of ICU beds. Post-withdrawal survival has been described in several studies, with median survival of approximately 1 hour, and interquartile ranges of minutes to a few hours.9-13 Patients surviving more than a week have also been described, so counseling should include the discussion of potential transfer out of the ICU, especially for patients expected to survive beyond the first hour.
There is no standard tool for prediction of survival, but intensivist prediction of death within 60 minutes seems to be the prevailing clinical standard.12 Tools such as the United Network for Organ Sharing Criteria, developed to assist in prediction of time to death in the setting of organ donation after cardiac death, have been validated but not universally applied.13 Clinical parameters, such as lower pH, lower Glasgow Coma Scale, lower spontaneous respiratory rate, lower systolic blood pressure, higher positive end-expiratory pressure (PEEP), and higher fraction of inspired oxygen (FiO2), have been shown to correlate well with death within 60 minutes, with a greater number of positive parameters increasing the predictive value (see Table 1).11,12 Other clinical concerns, such as respiratory mechanics, muscular weakness, neurologic status, and extent of multi-organ dysfunction, can contribute to predictions of survival time.14 Providing accurate predictions remains a challenge.
Alternatives to withdrawal of the ventilator should be discussed in detail during counseling. With a stable surgical airway, a ventilator-dependent patient can be kept alive for months, even years. Some patients may gradually wean from the ventilator support over weeks or months, while others may never be liberated, depending on the nature of the underlying condition. Autonomy and independence can vary, and definitive prognosis may take months to determine.15,16
Table 1. Clinical Parameters Suggesting Prognosis of < 1 Hour Following Ventilator Withdrawal11,12,13 |
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ETHICAL AND PSYCHOLOGICAL CONCERNS
Withdrawal of life support with expected death has significant ethical, legal, moral, and psychological facets for clinicians, patients, and families. Some may feel a sense of moral obligation to try all available therapies, regardless of potential benefit.2 Patients have the right to refuse or withhold any treatments or therapies at any time. The benefit, or lack thereof, of a potential therapy may not be known prior to a therapeutic trial. If the therapy does not demonstrate significant benefit after a therapeutic trial, withdrawal allows the irreversible underlying disease to take its natural course; the intention is to acknowledge the limits of medicine and not to hasten death. Thus, withholding and withdrawing a life-sustaining therapy such as a ventilator are considered ethically equivalent.4
Psychologically, however, withdrawal may feel more burdensome than withholding due to the active nature of removing treatment. This psychological barrier is important to consider in grieving family members who may suffer from guilt at “killing” their loved one. In such instances, the gradual withdrawal of other life-sustaining therapies over a period of hours to days prior to ventilator withdrawal has been associated with improved satisfaction. Ventilators are frequently the last therapy discontinued prior to death.17
When families are considering ventilator withdrawal they may show signs of resistance, conflict, disagreement, anger, and grief. Cultural, religious, personal, or social issues may affect caregivers’ perceptions and attitudes.18 It is important to provide a multidisciplinary approach to support, including chaplains and other psychosocial support staff, allow time and space for reflection, answer questions honestly, and offer empathy and assurance.19,20
After the ventilator is withdrawn, the goal is to allow the disease to take its natural course, to neither hasten nor prolong death. When observing the patient’s discomfort, requests may come from family or bedside caregivers to shorten the duration of suffering. Medical methods for hastening death could include increasing doses of sedatives beyond what is symptomatically indicated or administration of lethal medication that has no symptomatic benefit. These options are legally and ethically unacceptable in the United States.1 The patient’s suffering should not be discounted, and every effort must be made by clinicians to ensure the patient’s comfort.2,4,21
Conversely, clinicians or families may express a fear of hastening death. The doctrine of double effect provides the ethical rationale and moral imperative to treat symptoms with sedating medications, even when they may have the foreseen (but unintended) consequence of hastening death.4,21 A number of studies have evaluated the effect of opioids and benzodiazepines on timing of death and found no definitive correlation between dose and timing of death. Indeed, some studies have shown that patients receiving higher doses may actually have longer survival, with the theory being that relieving dyspnea and anxiety may decrease oxygen demand.22-24 Overall, general principles of critical care and palliative care should be followed when administering analgesia and sedation surrounding ventilator withdrawal.
Withdrawing a ventilator in a patient who is awake, aware, and cognizant that removal of the ventilator will result in their death is also psychologically and ethically challenging. While the ultimate prognosis may be similar to the patient who is unaware, it may feel like suicide. However, legal precedents and ethicists have deemed that if the quality of life is unacceptable to the patient, removing a ventilator from an awake patient is ethically equivalent to removing a ventilator from a patient who is unaware. One benefit is that the provider can be confident of the patient’s actual wishes. However, one must ensure durability of the patient’s desire and an absence of reversible reasons for desire to hasten death, such as clinical depression, concerns of being a burden to family, or uncontrolled pain.25,26
In a patient who is unable to communicate, a legal decision maker must be used to decide the plan of care. This may be a power of attorney previously designated by the patient or a surrogate decision maker chosen based on a legal hierarchy. A power of attorney or surrogate is obligated to choose what they think the patient would have wanted, even if it conflicts with what they themselves would want. This speaks to the importance of a patient making their wishes known ahead of time.
SYMPTOM MANAGEMENT AND PRACTICAL ISSUES
The process of ventilator withdrawal should be stepwise and systematic in order to decrease unnecessary distress among all involved (see Table 2).4,20 Prior to withdrawal of the ventilator, communication should be thorough and well-documented. A “Do Not Resuscitate” order should be confirmed. Alarms and monitors should be turned off, allowing visitors to focus on the patient without distracting noises.
Table 2. Process of Ventilator Withdrawal4,20 |
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While withdrawal of life-sustaining therapies, such as vasopressors or intravenous fluids, should cause no immediate discomfort, withdrawal of mechanical ventilation may be accompanied by dyspnea and anxiety. Symptom management during this time must be aggressive, and drug titration may need to be frequent. Clinicians have a broad array of medications from which to select for symptom management in this time period (see Table 3). First-line therapy for management of dyspnea and pain is usually an intravenous opioid, such as fentanyl, morphine, or hydromorphone. First-line therapy for management of anxiety is usually an intravenous benzodiazepine, such as midazolam or lorazepam. Both opioids and benzodiazepines can be administered as a bolus dose or as a continuous infusion.9 Patients may require higher doses of opioids or benzodiazepines than used in routine critical care settings to adequately manage dyspnea and anxiety during ventilator withdrawal; the doses should be titrated to symptoms without a set ceiling.27 Deep sedation, such as with propofol, is sometimes used, usually in patients who are already receiving the medication or in those who are anticipated to have a high degree of tolerance to opioids or benzodiazepines. Barbiturates have been cited in older literature but they used less frequently today.4,28
Table 3. Symptom Management After Ventilator Withdrawal4,28 |
|||
|
Symptom |
Medication Class |
Medication |
Route of Administration |
|
Dyspnea and Pain |
Opiods |
Morphine Hydromorphone Fentanyl |
IV infusion or bolus
IV infusion or bolus |
|
Anxiety |
Benzodiazepines |
Midazolam Lorazepam |
IV infusion or bolus IV infusion or bolus |
|
Oropharyngeal secretions |
Anticholinergics |
Scopolamine Atropine Glycopyrrolate |
Transdermal Sublingual (eye drops, off-label) IV infusion or bolus |
|
Agitation |
Neuroleptics |
Haloperidol |
IV bolus |
|
Paralysis |
Neuromuscular blockers |
NOT INDICATED |
NOT INDICATED |
|
Uncontrolled symptoms |
General anesthesia Deep sedation Barbiturates |
RARE USE Propofol Pentobarbital Phenobarbital |
IV infusion IV infusion IV bolus |
Neuromuscular blockade (i.e., paralysis) is sometimes used to decrease ventilator dyssynchrony in patients on mechanical ventilation. Patients appear comfortable as the facial muscles are relaxed and all breathing is triggered by the ventilator. Neuromuscular blockers provide no additional comfort to the patient and should not be initiated as a comfort measure prior to ventilator withdrawal. Additionally, if a ventilator is withdrawn on a paralyzed patient, there will be immediate death as there will be no spontaneous breaths. If paralytics are being previously administered, a provider should ensure they are discontinued with enough time for the patient to initiate their own breaths prior to ventilator withdrawal.29
Two distinct weaning methods for withdrawal of mechanical ventilation have previously been described: gradual terminal weans and immediate terminal extubations.30 Current guidelines advocate for a hybrid, with a rapid wean over no more than an hour or so to allow for aggressive titration of medications to adequately control dyspnea and anxiety but not to allow for prolongation of death.4,31 When ventilator support and symptom control are such that symptoms are not expected to escalate upon removal of support, mechanical ventilation is discontinued by extubation or disconnection of the ventilator from the tracheostomy.
After removal of the endotracheal tube, saliva and secretions may pool in the posterior oropharynx and tracheobronchial tree, leading to rattling sounds with inspiration and expiration. This phenomenon, sometimes called the “death rattle,” tends to occur in the terminal phase in patients who are too weak or obtunded to adequately expectorate. It can be frequent, reported in up to 90% of patients at the end of life. Although the death rattle is thought not to be extremely distressing to the patient, caregivers may experience distress that their loved one is choking. Temporary postural drainage can be used to decrease the volume of secretions, and anticholinergic medications can also be used to decrease formation of secretions.32 Further titration of medications may be required following removal of ventilator support, and if patients survive beyond the initial few hours, arrangements may be made for transfer out of the ICU.
CONCLUSION
Patients can end up on life support, even in unexpected circumstances. Ventilator withdrawal with expected death is a complex process, now considered an ethically and morally acceptable practice. Familiarity and literature on this topic are increasing. Life expectancy following withdrawal varies from minutes up to weeks. Critical care providers should be comfortable with counseling families before ventilator withdrawal and the process and symptom management surrounding ventilator withdrawal.
REFERENCES
- Luce JM, Alpers A. Legal aspects of withholding and withdrawing life support from critically ill patients in the United States and providing palliative care to them. Am J Respir Crit Care Med 2000;162:2029-2032.
- Reynolds S, et al. Withdrawing life-sustaining treatment: Ethical considerations. Surg Clin North Am 2007;87:919-936.
- Rubenfeld G. Principles and practice of withdrawing life-sustaining treatments. Crit Care Clin 2004;20:435-451.
- Truog RD, et al. Recommendations for end-of-life care in the intensive care unit: A consensus statement by the American Academy of Critical Care Medicine. Crit Care Med 2008;36:953-963.
- Angus DC, et al. Use of intensive care at the end of life in the United States: An epidemiologic study. Crit Care Med 2004;32:638-643.
- Smedira NG, et al. Withholding and withdrawal of life support from the critically ill. N Eng J Med 1990;322:309-315.
- Prendergast TJ, Luce JM. Increasing incidence of withholding and withdrawal of life support from the critically ill. Am J Respir Crit Care Med 1997;155:15-20.
- Cook D, et al. Withdrawal of mechanical ventilation in anticipation of death in the intensive care unit. N Eng J Med 2003;349;1123-1132.
- O’Mahony S, et al. Ventilator withdrawal: Procedures and outcomes. Report of a collaboration between a critical care division and a palliative care service. J Pain Symptom Manage 2003;26:954-961.
- Cooke CR, et al. Predictors of time to death after terminal withdrawal of mechanical ventilation in the ICU. Chest 2010;138:289-297.
- Huynh TH, et al. Factors associated with palliative withdrawal of mechanical ventilation and time to death after withdrawal. J Palliat Med 2013;16:1368-1374.
- Brieva J, et al. Prediction of death in less than 60 minutes following withdrawal of cardiorespiratory support in ICUs. Crit Care Med 2013;41:2677-2687.
- DeVita MA, et al. Donors after cardiac death: Validation of identification criteria (DVIC) study for predictors of rapid death. Am J Transplant 2008;8:432-441.
- Wind T, et al. Prediction of time of death after withdrawal of life-sustaining treatment in potential donors after cardiac death. Crit Care Med 2012;40:766-769.
- Nelson JE, et al. Chronic critical illness. Am J Respir Crit Care Med 2010;182:446-454.
- Ankrom M, et al. Elective discontinuation of life-sustaining mechanical ventilation on a chronic ventilator unit. J Am Geriatr Soc 2001;49:1549-1554.
- Gerstel E, et al. Duration of withdrawal of life support in the intensive care unit and association with family satisfaction. Am J Respir Crit Care Med 2008;178:798-804.
- Cook D, et al. Understanding and changing attitudes toward withdrawal and withholding of life support in the intensive care unit. Crit Care Med 2006;24(Suppl.):S317-S323.
- Prendergast TJ, Puntillo KA. Withdrawal of life support: Intensive caring at the end of life. JAMA 2002;288:2732:2732-2740.
- Curtis JR, Vincent JL. Ethics and end-of-life care for adults in the intensive care unit. Lancet 2010;376:1347-1353.
- Truog RD, et al. Should patients receive general anesthesia prior to extubation at the end of life? Crit Care Med 2012;40:631-633.
- Bakker J, et al. Why opioids and sedatives may prolong life rather than hasten death after ventilator withdrawal in critically ill patients. Am J Hosp Pall Med 2008;25:152-154.
- Edwards MJ. Opioids and benzodiazepines appear paradoxically to delay inevitable death after ventilator withdrawal. J Palliat Care 2005;21:299-302.
- Chan JD, et al. Narcotic and benzodiazepine use after withdrawal of life support: Association with time to death? Chest 2004;126:286-293.
- Edwards MJ, Tolle SW. Disconnecting a ventilator at the request of a patient who knows he will then die: The doctor’s anguish. Ann Int Med 1992;177:254-256.
- Billings JA. Terminal extubation of the alert patient. J Pall Med 2011;14:800-801.
- Billings JA. Humane terminal extubation reconsidered: The role for preemptive analgesia and sedation. Crit Care Med 2012;40:625-630.
- Von Gunten CF, Weissman MD. Symptom control for ventilator withdrawal in the dying patient, 2nd edition. Fast Facts and Concepts. July 2005;34. Available at: www.capc.org/fast-facts/34-symptom-control-ventilator-withdrawal-dying-patient/.
- Truog RD, et al. Pharmacologic paralysis and withdrawal of mechanical ventilation at the end of life. N Engl J Med 2000;342:508-511.
- Truog RD, et al. Recommendations for end-of-life care in the intensive care unit: The ethics committee of the Society of Critical Care Medicine. Crit Care Med 2001;29:2332-2348.
- Campbell ML. Patient responses during rapid terminal weaning from mechanical ventilation: A prospective study. Crit Care Med 1999;27:73-77.
- Wildiers H, Menten J. Death rattle: Prevalence, prevention, and treatment. J Pain Symptom Manage 2002;23:310-317.
Ventilator withdrawal with expected death is now considered an ethically and morally acceptable practice. Here's what you need to know.
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