Home Educatione-Learning End of Life Decision Making and Care of the Dying Patient
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End of Life Decision Making and Care of the Dying Patient

PCCSU Volume 25, Lesson 12


The American College of Chest Physicians offers this lesson as a review of a previously offered self-study program. The program provides information on pulmonary, critical care, and sleep medicine issues. CME is no longer available for the PCCSU program.


  • Update your knowledge and understanding of pulmonary medicine topics.
  • Update your knowledge and understanding of critical care medicine topics.
  • Update your knowledge and understanding of sleep medicine topics.
  • Learn clinically useful practice procedures.

Effective July 1, 2013, PCCSU Volume 25 is available for review purposes only.

Effective December 31, 2012, PCCSU Volume 24 is available for review purposes only.

Effective December 31, 2011, PCCU Volume 23 is available for review purposes only. CME credit for this volume is no longer being offered

Effective December 31, 2010, PCCU Volume 22 is available for review purposes only. CME credit for this volume is no longer being offered.

Accreditation Statement

The American College of Chest Physicians is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians.

CME Statement

Credit no longer available as of July 1, 2013.

Disclosure Statement

The American College of Chest Physicians (CHEST) remains strongly committed to providing the best available evidence-based clinical information to participants of this educational activity and requires an open disclosure of any potential conflict of interest identified by our faculty members. It is not the intent of CHEST to eliminate all situations of potential conflict of interest, but rather to enable those who are working with CHEST to recognize situations that may be subject to question by others. All disclosed conflicts of interest are reviewed by the educational activity course director/chair, the Education Committee, or the Conflict of Interest Review Committee to ensure that such situations are properly evaluated and, if necessary, resolved. The CHEST educational standards pertaining to conflict of interest are intended to maintain the professional autonomy of the clinical experts inherent in promoting a balanced presentation of science. Through our review process, all CHEST CME activities are ensured of independent, objective, scientifically balanced presentations of information. Disclosure of any or no relationships will be made available for all educational activities.

CME Availability

Volume 25 Through June 30, 2013
Volume 24 Through December 31, 2012
Volume 23 Through December 31, 2011
Volume 22 Through December 31, 2010

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PCCSU Volume 25 Editorial Board

Steven A. Sahn, MD, FCCP

Director, Division of Pulmonary and Critical Care Medicine, Allergy, and Clinical Immunology
Medical University of South Carolina
Charleston, SC

Dr. Sahn has disclosed no significant relationships with the companies/organizations whose products or services may be discussed within Volume 25.

Deputy Editor
Richard A. Matthay, MD, FCCP

Professor of Medicine
Section of Pulmonary and Critical Care Medicine
Yale University School of Medicine
New Haven, CT

Dr. Matthay has disclosed no significant relationships with the companies/organizations whose products or services may be discussed within Volume 25.

Alejandro C. Arroliga, MD, FCCP
Professor of Medicine
Texas A&M Health Science Center
College of Medicine
Temple, TX

Dr. Arroliga has disclosed no significant relationships with the companies/organizations whose products or services may be discussed within Volume 25.

Paul D. Blanc, MD, FCCP
Professor of Medicine
University of California, San Francisco
San Francisco, CA

Dr. Blanc has disclosed significant relationships with the following companies/organizations whose products or services may be discussed within Volume 25:

National Institutes of Health, Flight Attendants Medical Research Institute – university grant monies
University of California San Francisco, US Environmental Protection Agency, California Environmental Protection Agency Air Resources Board – consultant fee
Habonim-Dror Foundation Board of Trustees – fiduciary position

Guillermo A. do Pico, MD, FCCP
Professor of Medicine
University of Wisconsin Medical School
Madison, WI

Dr. do Pico has disclosed no significant relationships with the companies/organizations whose products or services may be discussed within Volume 25.

Ware G. Kuschner, MD, FCCP
Associate Professor of Medicine
Stanford University School of Medicine
Palo Alto, CA

Dr. Kuschner has disclosed no significant relationships with the companies/organizations whose products or services may be discussed within Volume 25.

Teofilo Lee-Chiong, MD, FCCP
Associate Professor of Medicine
National Jewish Medical Center
Denver, CO

Dr. Lee-Chiong has disclosed significant relationships with the following companies/organizations whose products or services may be discussed within Volume 25:

National Institutes of Health – grant monies (from sources other than industry)
Covidien, Respironics, Inc. – grant monies (from industry-related sources)
Elsevier – consultant fee

Margaret Pisani, MD, MPH, FCCP
Assistant Professor of Medicine
Yale University School of Medicine
New Haven, CT

Dr. Pisani has disclosed no significant relationships with the companies/organizations whose products or services may be discussed within Volume 25.

Stephen I. Rennard, MD, FCCP
Professor of Medicine
University of Nebraska Medical Center
Omaha, NE

Dr. Rennard has disclosed significant relationships with the following companies/organizations whose products or services may be discussed within Volume 25:

AstraZeneca, Biomark, Centocor, Novartis – grant monies (from industry-related sources)

Almirall, Aradigm, AstraZeneca, Boehringer Ingelheim, Defined Health, Dey Pharma, Eaton Associates, GlaxoSmithKline, Medacrop, Mpex, Novartis, Nycomed, Otsuka, Pfizer, Pulmatrix, Theravance, United Biosource, Uptake Medical, VantagePoint – consultant fee/advisory committee

AstraZeneca, Network for Continuing Medical Education, Novartis, Pfizer, SOMA – speaker bureau

Ex Officio
Gary R. Epler, MD, FCCP

Clinical Associate Professor of Medicine
Harvard Medical School
Brigham & Women's Hospital
Boston, MA

Dr. Epler has disclosed no significant relationships with the companies/organizations whose products or services may be discussed within Volume 25.

Lilly Rodriguez
ACCP Staff Liaison

By Mark D. Siegel, MD, FCCP

Dr. Siegel is Associate Professor and Director of Medical Critical Care, Yale University School of Medicine, New Haven, Connecticut.

Dr. Siegel has disclosed no significant relationships with the companies/organizations whose products or services may be discussed within this chapter.


  1. Explore the key ethical principles that underlie sound end-of-life decision making.
  2. Consider the key structural components necessary to implement effective triage policies.
  3. Discuss futility as a rationale for unilateral decisions to forgo life-sustaining therapy.
  4. Address common sources of conflict between ICU physicians and patients’ family members.
  5. Highlight key features of effective palliative care in the ICU setting.

Key words: decision making; life-support care; medical ethics; palliative care; terminal care

Twenty percent of deaths in the United States follow ICU admission, usually after decisions to forgo life support.1 Too often, dying patients endure distressing symptoms such as anxiety and pain,2,3 and families bear an emotional burden potentially exacerbated by this decision process.4,5 Several comprehensive guidelines and reviews describe strategies intended to optimize end-of-life care.3,6 The objective of this brief review is to highlight effective approaches to end-of-life decision making and palliative care in the ICU.

Ethical Principles and End-of-Life Decision Making

Four key ethical principles should guide end-of-life decision making: autonomy, beneficence, nonmaleficence, and justice.7 Autonomy supports a patient’s right to choose among standard treatment options. Key legal precedents buttress autonomy by recognizing a patient’s right to refuse unwanted care.8 A less settled issue is whether autonomy confers a right to demand care, particularly treatment of questionable value. The principle of beneficence obliges physicians to use their medical skills to help patients, while nonmaleficence requires them to avoid harm. The principle of justice demands fair distribution of medical resources—for example, when shortages preclude meeting a population’s needs.

Ethical tension arises when these principles conflict with each other. Autonomy may conflict with beneficence, for example, when patients refuse potentially helpful treatment. Justice may conflict with beneficence and autonomy when one patient is chosen over another for the last remaining ICU bed, even though both might want treatment and benefit from it. A common and troublesome example arises when patients or surrogates request care that physicians consider nonbeneficial or harmful—for instance, when life-sustaining therapy is demanded despite a dismal prognosis.8 The challenge of ICU ethics is to pursue solutions to conflicts that leave all stakeholders feeling reasonably satisfied.


In many countries, resource limitations pose an obstacle to providing ICU care to all eligible patients. The United States has historically enjoyed sufficient resources, but several factors will strain access in the future. The aging population will increase the number of patients with life-threatening illness, and manpower shortages, particularly an insufficient number of ICU physicians, may impede access to expert care.9 Increasing cost may also impose limitations.10 These factors, combined with concerns about pandemics, natural disasters, and bioterrorism, force us to consider how precious resources, such as ICU beds and ventilators, should be distributed if demand exceeds supply.11

Appropriate triage seeks to provide care that best meets a population’s needs, recognizing that this may conflict with the needs and wishes of individual patients. Triage algorithms attempt to prioritize patients most likely to benefit from the ICU. Lower priority is given to patients likely to do well outside the ICU and to those too sick to benefit. Several alternative approaches to ranking patients have been proposed.11-14 Some advocate “first come, first serve” after patients unable to benefit have been excluded; others favor more nuanced systems that use comorbidities and severity of illness to rank patients. Our ICU gives top priority given to those who (1) require advanced technology and (2) appear likely to benefit (Table 1). Lower priority is assigned to patients unlikely to benefit, such as those with advanced terminal illness.


Table 1Yale-New Haven Hospital Triage Scoring System

Triage Levela Meets Criteria for ICU Admission Requires ICU Technologyb Potential for Benefitc
1 Yes Yes Yes
2 Yes No Yes
3 Yes Yes No
4 Yes No No
5 No N/A N/A

aTriage levels are listed in order of priority for ICU beds, with 1 denoting highest priority and 5 the lowest priority.

bICU technology refers to invasive monitoring and therapy, typically provided only in an ICU. Examples include endotracheal intubation, intracranial pressure monitoring, continuous renal replacement therapy, and intra-aortic balloon pumps.

cPotential for benefit is considered present by default, except in cases of severe acute illness and/or comorbidities that make meaningful benefit exceedingly unlikely. Examples include multiple organ failure that is failing to respond to treatment; progressive, imminently fatal underlying illness, such as advanced cancer; and severe cognitive impairment such as a persistent vegetative state or advanced dementia without the ability to recognize or interact with others.

The need to triage should be minimized by maximizing available resources. All efforts should be made to staff the hospital with a sufficient number of skilled providers. Improved expertise and monitoring outside the ICU may free up unit beds for those requiring advanced care. Collaboration between ICUs within the hospital and between neighboring institutions should increase flexibility and availability. Good practices, such as promoting efficient throughput, using treatments that decrease length of stay, and promptly addressing goals of care, can increase the number of beds available.

Triage should be fair. Patients should not be discriminated against because of race, religion, sex, sexual orientation, or ability to pay. A qualified ICU physician should direct triage; however, to avoid conflict of interest, decision-making authority should be assigned to someone without direct patient care responsibilities if possible. Physicians with clinical responsibilities can and should advocate for their own patients’ welfare, but all physicians must commit themselves to supporting triage to benefit the larger population. Patients excluded from the ICU should be managed as well as possible, acknowledging that circumstances may be suboptimal. If lifesaving therapy is not available, exclusion from the ICU may require a shift in focus to ensure the patient’s comfort.


Futile care is best defined as care that cannot achieve a stated goal, whether it be saving a patient’s life or achieving a functional outcome.15 Futility raises ethical concerns because it provides no benefit, subjects patients to harm, and wastes resources. In theory, decisions to forgo futile care can be made without a patient or surrogate’s consent, the presumption being that the principle of autonomy does not confer a right to demand ineffective care. Professional societies have long endorsed this principle, stating that physicians are not obliged to provide futile care, even if requested.16

For several reasons, the futility rationale is best relegated to a limited number of obvious cases. First, no definition of futility is universally accepted.17 Second, error could lead physicians to misdiagnose futility.18 Third, many patients question whether perceived futility should authorize physicians to make unilateral decisions to limit treatment.19 Fourth, diverse views on acceptable outcomes raise questions about the appropriateness of enforcing standards inimical to ethnic and religious minorities.20 Finally, some have suggested that concern for a family’s well-being may justify futile care in certain situations.21

Despite these concerns, many would agree that some circumstances justify withholding life-sustaining therapies, even when families object, particularly when compelling concerns are raised about pain and suffering or consensus exists among caregivers that an acceptable outcome is impossible. To ensure a fair approach, the American Medical Association’s Council on Ethical and Judicial Affairs has recommended a systematic approach that provides families the opportunity to seek second opinions and transfer care.22 Although protocols may ensure due process, their legal status is less certain. Regardless of ethical and legal concerns, all efforts should be made to seek consensus with patients and families. A skilled approach to communicating and addressing families’ needs should mitigate most disputes and offset the need to make unilateral decisions to limit treatment.

End-of-Life Decisions: Family Meetings and Treatment Choices

End-of-life decisions most commonly address whether to pursue endotracheal intubation or CPR. Factors such as sedation, delirium, and dementia generally preclude critically ill patients from deciding for themselves, thus shifting the responsibility to surrogates, usually family members.23 Major decisions are often made during formal “family meetings,” which include relatives, physicians, and other ICU team members.24,25

Surrogates and the medical team have specific roles to play when making decisions.24,25 The surrogate’s job is to represent the patient’s wishes.23 Some studies have cast doubt on the stability of patients’ wishes and surrogates’ abilities to represent them.26,27 Still, family members are clearly best positioned to represent the patient. Traditional hierarchies have assigned decisional authority to specific relatives, but it is usually best to seek consensus within the family and pursue the most reliable representation of the patient’s wishes, regardless of the source.

Surrogates should report the patient’s preferences, if known. Advance directives may help, but they often are unavailable or do not address relevant issues.28 When lacking explicit guidance from written or verbal statements, surrogates should attempt substituted judgment, describing what the patient would choose if able, based on knowledge of previously expressed values.23,29 If this is impossible, decisions should be based on what surrogates believe to be in the patient’s best interest.

Physicians have several key responsibilities. First, they must accurately describe the patient’s condition, treatments attempted, and prognosis to the extent it is known. Physicians should explore treatment goals and clearly describe therapeutic options, likelihood of success, and anticipated burdens. Physicians should explain surrogate decision making, emphasizing that the goals chosen should reflect the patient’s preferences, even if they differ from the family’s. Physicians should offer to help with decisions, recognizing that many families prefer sharing responsibility with physicians.30

End-of-Life Decision Making: Common Obstacles

Several obstacles commonly interfere with effective decision making and often manifest as conflict between families and the ICU team. Conflict is a frequent source of distress for both physicians and families, and frequently results from lack of trust and/or miscommunication.8,31,32 Most conflict can be prevented or solved once the source is identified (Table 2). Some common sources of conflict are outlined here.


Table 2Potential Sources of Conflict During End-of-Life Decision Making

Potential Source of Conflict Possible Solutions
Family Centered
Knowledge deficits Do not assume knowledge; explain key features of ICU interventions and provide an honest assessment of potential benefits and burdens of treatment options; avoid jargon.
Psychiatric symptoms Be patient; offer support from social work and psychiatric liaison.
Language and cultural issues When families do not speak English, use trained interpreters for all key communication and seek help in understanding cultural issues.
Religious and spiritual concerns Request help from hospital chaplains and/or from patient’s or family’s religious leaders to better understand relevant religious principles and provide spiritual support.
Lack of trust Engage families early in ICU course; promote liberal visitation; invite interested families to join rounds; promote continuity of care.
Pressure to make decisions Avoid undue pressure to make decisions; allow time to process information and understand prognosis; share in decision making.
Role uncertainty Explain principles of surrogate decision making.
Uncertainty about patient’s wishes Seek reliable information from written documents if available, as well as past discussions regarding preferences and values.
Physician Centered
Knowledge deficits Use resources from professional societies, including key reviews on medical ethics, religion, the law, and psychosocial topics; seek assistance from hospital ethics committee, religious ministries, hospital legal office, social work, psychiatry, and expert colleagues.
Excessive trainee responsibility Assign responsibility consistent with level of training and experience, as for all ICU procedures.
Miscommunication Meet early and often with family; take time to listen to questions and concerns; ensure comprehension; avoid jargon.
Mixed messages Ensure consensus among ICU team members and consultants when speaking to family; meet with all team members prior to family meetings; identify physician in charge.
Prognostic uncertainty Use severity-of-illness scoring systems and clinical judgment judiciously; recognize that families value physician input, even if uncertain.
Time constraints Invite families to join team on rounds; recognize that time spent engaging families may prevent conflicts which prove far more time consuming.
Role uncertainty Ask families if physician assistance with decision making is desired; recognize that most families want physicians to play an active role in decision making.


Knowledge Deficits
Most ICU patients’ families have no medical background and often overestimate the benefit of interventions such as CPR and long-term tracheotomy.33-35 Accurate information can change preferences and provide families with the knowledge needed to navigate the decision-making process successfully.36,37 Allowing families ample access to physicians (for example, by allowing them to participate during rounds) may foster knowledge transfer and communication.

Unfortunately, many physicians fail to communicate effectively, making it impossible for families to make informed choices.34,35,38,39 Exacerbating factors include insufficient training, time constraints, use of jargon, and language and cultural barriers. Insufficiently skilled trainees are often asked to discuss treatment options with patients and families and often focus disproportionately on technical details and insufficiently on likely outcomes and burdens.38 End-of-life discussions should be treated like other skills that need to be taught in order to be done well. Enormous good can come from family meetings scheduled early in an ICU course, even before critical decisions become urgent.37 Spending time with families allows physicians to build rapport with them and foster their trust in physicians, and it also provides the opportunity to consider and discuss the patient’s clinical course before decisions become urgent. In contrast, placing undue pressure on families to make decisions rapidly can backfire and undermine trust.40 Every effort should be made to achieve consensus among team members and consultants to avoid giving mixed messages, so that discussions with families do not breed confusion.

Language and Cultural Issues
In the United States, it is becoming increasingly common for family members speak a primary language other than English, increasing the risk of miscommunication with the medical team.41 Trained interpreters should be used for all key communications to mitigate misunderstanding. In addition to assisting with language, interpreters can serve as cultural brokers, helping the team to understand how families view critical illness, particularly in ways that might not be anticipated. Potential sources of discomfort among non-Western families may include being asked to discuss poor prognoses, to consider the patient’s wishes as distinct from the family’s, or to take personal responsibility for decision making.

Even when language is not an issue, ethnicity and culture can impose important challenges to communication. Minority families may be at particular risk for communication failures. Numerous studies have shown that minorities are more likely to choose aggressive ICU care than others.42 These choices often deeply held cultural and religious beliefs, but inadequate communication may also occur more frequently and contribute to poor rapport. In turn, this may undermine informed decision making, even when less aggressive care is preferred.42 Increased cultural sophistication and awareness of potential communication pitfalls are essential.43

Emotional Issues
ICU patients’ family members commonly experience stress, anxiety, and depression.4,44 These symptoms, combined with fear, fatigue, and anticipatory grief, impose a severe emotional burden, particularly when coupled with decision-making responsibility. Symptoms may be obvious, but some behaviors, such as anger and avoidance, should also be recognized as possible manifestations of distress. Some authors have questioned whether psychiatric symptoms undermine families’ decision-making capacity.44 While emotional distress undoubtedly challenges families, most should be able to fulfill their surrogate role, particularly if supported. Assistance from psychiatry, palliative care, and social work services may be particularly valuable.

Prognosis and Hope
The prognosis for a meaningful recovery plays a central role in a patient’s willingness to undergo ICU care.45 Patients are often willing to endure a great deal, even for short-term benefit, but are less willing if the likely outcomes are severe functional or cognitive impairment. Clinical predictors such as severity-of-illness scores may help guide prognostication, although it is generally impossible to eliminate uncertainty in all but the most obvious cases.46 Many physicians are reluctant to discuss prognosis, either because of uncertainty or because they fear destroying hope. Despite this, most families prefer to discuss prognosis with physicians, even in the face of uncertainty.47 Most families would consider it inappropriate to withhold information in order to maintain hope.48 The failure to honestly discuss prognosis can increase the risk that patients and families will suffer and undermines the opportunity to consider alternatives such as a focus on symptom management.34,35 A strategy of “hoping for the best while preparing for the worst” may help support families in the context of honest discussions about likely outcomes.49 Many families derive only a fraction of their prognostic beliefs from physicians, even in the setting of excellent communication.50 Many factors—such as perceptions of the patient’s character, will to live, past history, and physical appearance, as well as optimism and faith—may influence how families perceive prognosis.50 Religious and racial background can influence prognostic perceptions; for example, a recent study suggested that African American and religious families are more likely than others to be optimistic about positive outcomes.51 Physicians need to understand that these perceptions may persist despite what they tell families, particularly when seeking to understand the rationale for treatment choices.

Religious and Spiritual Issues
Religious and spiritual issues assume central importance for many patients and families in the context of life-threatening illness.52 Religion and spirituality can have a major impact on treatment preferences and also be a source of considerable misunderstanding. Several studies suggest that religious families are more likely to choose aggressive medical care.51,53 Sometimes decisions to pursue aggressive care have a religious basis,20 although the relationship between religion and treatment preferences is often less clear. The failure to offer spiritual support to religious families may contribute to preferences for aggressive care.53 Misunderstandings about religious beliefs (for example, expressed hopes for a miracle) can be a source of unnecessary conflict.54 Attention to providing sophisticated religious and spiritual support to families, particularly seeking input from hospital chaplains and from a family’s religious community, may prove valuable.

Care of Dying Patients and Their Families

Effective palliative care is paramount in dying patients.2,3,6 Plans to address symptoms should be discussed preemptively, such as when the decision is made to discontinue mechanical ventilation. Medications, particularly narcotics and benzodiazepines, can usually alleviate pain, dyspnea, and anxiety effectively. In patients with severe symptoms, the doses required to achieve comfort cause patients to lose consciousness. It is imperative to provide sufficient doses to control symptoms; conversely, it is inappropriate to withhold medication because of undue concerns that medication may hasten death. There is little evidence to support the belief that medications used for palliation hasten death when used appropriately.55 Assistance from palliative care specialists may be valuable, particularly in challenging cases.

The families of ICU patients are at significant risk for psychiatric disorders, particularly depression, posttraumatic stress, and complicated grief.3,5,56 The extent to which these psychiatric disorders relate to bereavement and participation in end-of-life decision making is uncertain. Nevertheless, it is important to recognize the vulnerability of this population and provide informational, spiritual, and emotional support.2,3 Excellent communication aided by information brochures and well-done family meetings appears to decrease long-term psychiatric morbidity.57 In addition to seeking assistance from other disciplines, such as religious ministries, nursing, and social work, physicians must remain accessible to families during the dying process.2,3


More than one-fifth of deaths in the United States occur following ICU admission. With increasing frequency, physicians are called on to work with patients’ families to make decisions about the wisdom of using life-sustaining therapies. To ensure appropriate decision making, physicians need a solid grounding in the principles of medical ethics. Equally importantly, physicians need to work effectively and closely with families struggling to make end-of-life decisions. Honest and supportive communication, patience, and effective palliation are central to outstanding critical care.


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