T h e ne w engl a nd jour na l o f medicine
critical care medicine
Simon R. Finfer, M.D., and Jean-Louis Vincent, M.D., Ph.D., Editors Dying with Dignity in the Intensive Care Unit Deborah Cook, M.D., and Graeme Rocker, D.M.
From the Departments of Medicine, Clin-ical Epidemiology, and Biostatistics, Mc-Master University, Hamilton, ON (D.C.), and the Department of Medicine, Dalhousie University, Halifax, NS (G.R.) — both in Canada. Address reprint requests to Dr. Cook at the McMaster University Health Sciences Center, Rm. 2C11, 1200 Main St. W, Hamilton, ON, Canada, L8N 3Z5, or at debcook@mcmaster.ca.
N Engl J Med 2014;370:2506-14.
DOI: 10.1056/NEJMra1208795
少儿读物下载Copyright © 2014 Massachutts Medical Society.T he trad itional goals of intensive care are to red uce the m orbidity and mortality associated with critical illness, maintain organ func-tion, and restore he
alth. Despite technological advances, death in the intensive care unit (ICU) remains commonplace. Death rates vary widely within and among countries and are influenced by many factors.1 Comparative international data are lack-ing, but an estimated one in five deaths in the United States occurs in a critical care bed.2 In this review, we address the concept of dignity for patients dying in the ICU. When the organ dysfunction of critical illness defies treatment, when the goals of care can no longer be met, or when life support is likely to result in outcomes that are incongruent with patients’ values, ICU clinicians must ensure that patients die with dignity. The definition of “dying with dignity” recognizes the intrinsic, unconditional quality of human worth but also external qualities of physical comfort, autonomy, meaningfulness, preparedness, and interpersonal connection.3 Respect should be fostered by being mindful of the “ABCDs” of dignity-conrving care (attitudes, behaviors, compassion, and dialogue)4 (Table 1). Prerving the dignity of patients, avoiding harm, and preventing or resolving conflict are conditions of the privilege and responsibility of caring for patients at the end of life. In our discussion of prin-ciples, evidence, and practices, we assume that there are no extant conflicts between the ICU team and the patient’s family. Given the scope of this review, readers are referred elwhere for guidance on conflict prevention and resolution in the ICU.5,6 The concept of dying with dignity in the ICU implies that although clinicians may forgo some treatments, care can be enhanced as death approaches. Funda-mental to maintaining dignity is the need to und
法文我爱你erstand a patient’s unique per-spectives on what gives life meaning in a tting replete with depersonalizing devices. The goal is caring for patients in a manner that is consistent with their values at a time of incomparable vulnerability, when they rarely can speak for themlves.7 For example, patients who value meaningful relationships may de-cline life-prolonging measures when such relationships are no longer possible. Converly, patients for whom physical autonomy is not crucial may accept tech-nological dependence if it confers a reasonable chance of an acceptable, albeit impaired, outcome.8 At issue is what each patient would be willing to undergo for a given probability of survival and anticipated quality of life.
On the Need for Palliative Car e
The coexistence of palliative care and critical care may em paradoxical in the technological ICU. However, contemporary critical care should be as concerned with palliation as with the prevention, diagnosis, monitoring, and treatment of life-threatening conditions.
critical care medicine The World Health Organization defines pal-
liative care as “an approach that improves the
quality of life of patients and their families
facing the problems associated with life-threat-
ening illness, through the prevention and relief
of suffering by means of early identification
and impeccable asssment and treatment of
pain and other problems, physical, psychosocial
and spiritual.”9 Palliative care, which is esn-
tial regardless of whether a medical condition
is acute or chronic and whether it is in an early
or a late stage, can also extend beyond the pa-
tient’s death to bereaved family members10
(Fig. 1).
noproblem
Eliciting the Values of Patients Sometimes it is too late. A precipitating event prompting an ICU admission that occurs within
a protracted downward trajectory of an illness
may be irreversible. When clinicians who are car-
knowledgeableing for a patient in such a scenario have not pre-
viously explored whether the patient would want
to receive basic or advanced life support, the
wishes of the patient are unknown, and invalid assumptions can be anticipated. Effective ad-
vance care planning, which is often lacking in
such circumstances, elicits values directly from
the patient, possibly preventing unnecessary suf-
2011格莱美
fering associated with the u of unwelcome in-terventions and thereby prerving the patient’s dignity at the end of life.
用英语怎么说Regardless of the rate and pattern of decline in health, by the time that patients are in the ICU, most cannot hold a meaningful conversa-tion as a result of their critical condition or dating medications. In such cas, family members or other surrogates typically speak for them. In decisions regarding the withdraw-al of life support, the predominant determi-nants are a very low probability of survival, a very high probability of verely impaired cog-nitive function, and recognition that patients would not want to continue life support in such circumstances if they could speak for them-lves.11 Probabilistic information is thus often more important than the patient’s age, coexist-ing medical conditions, or illness verity in influencing decisions about life-support with-drawal.
Discussions can be initiated by eliciting a nar-rative from patients (or more commonly, from family members) about relationships, activities, and experiences treasured by the patient. The u of engaging, deferential questions, such as “Tell me about your . . .” or “Tell us what is im-portant to . . . ,” is esntial. Clinician guidance for constructing an authentic picture of the in-capacitated patient’s values is offered in the Fa-cilitated Values History,8 a framework that pro-vides clinicians with strategies for expressing empathy, nsitively depicting common scenarios of death, clarifying the devisit是什么意思
cision-making role of surrogates, eliciting and summarizing values most relevant to medical decision making, and link-ing the values explicitly to care plans.
Communication
Before a critical illness develops, patients’ percep-tions about what matters most for high-quality
end-of-life care vary, but human connections are * This approach is adapted from Chochinov.4
feel like的用法T h e ne w engl a nd jour na l o f medicine
key. Many riously ill elderly patients cite effec-tive communication, continuity of care, trust in the treating physician, life completion, and avoid-ance of unwanted life support.12 After critical ill-ness develops, most patients or their surrogates find themlves communicating with unfamiliar clinicians in a sterile environment at a time of unparalleled distress. Challenges in communica-tion are magnified when patients die at an early stage of critical illness, before rapport has been well established.Clear, candid communication is a determinant of family satisfaction with end-of-life care.13Notably, measures of family satisfaction with respect to communication are higher among family members of patients who die in the ICU than among tho of ICU patients who survive, perhaps reflecting the intensity of communica-tion and the accompanying respect and compas-sion shown by clinicians for the families of dying patients.14 The power of effective communica-tion also includes the power of silence.15 Family satisfaction with meetings about end-of-life care in the ICU may be greater when physicians talk less and listen more.16Decision M aking Decision-making models for the ICU vary inter-nationally but should be individualized. At one end of the continuum is a traditional parental approach, in which the physician shares infor-mation but assumes the primary r
esponsibility for decision making. At the other end of the con-tinuum, the patient makes the decisions, and the
physician has an advisory role. In North America and in some parts of Europe,17 the archetype is the shared decision-making model, in which phy-sicians and patients or their surrogates share in-formation with one another and participate jointly in decision making.18
Although preferences for decision-making roles vary among family members,19 physicians do not always clarify family preferences.20 Family mem-bers may lack confidence about their surrogate decision-maker role, regardless of the decision-making model, if they have had no experience as a surrogate or no prior dialogue with the patient about treatment preferences.21 Decision-making burden is postulated as a salient source of strain among family members of patients who are dying in the ICU; anxiety and depres-sion are also prevalent.22,23
Providing Prognostic Infor m ation Valid prognostic information is a fundamental component of end-of-life discussions. Under-standing the predicted outcome of the critical illness and recognizing the uncertainty of that prediction are helpful in making decisions that reflect the patient’s values. However, when it comes to prognosticating for riously ill pa-tients, families and physicians someti
mes dis-agree.24 In one study, surrogate decision mak-ers for 169 patients in the ICU were randomly assigned to view one of two videos of a simu-lated family conference about a hypothetical patient.25 The videos varied only according to whether the prognosis was conveyed in numeri-cal terms (“10% chance of survival”) or qualita-tive terms (“very unlikely to survive”). Numeri-cal prognostic statements were no better than qualitative statements in conveying the progno-sis. However, on average, surrogates estimated twice as often as physicians that the patient would survive.In another study, when 80 surrogates of pa-tients in the ICU interpreted 16 prognostic state-ments, interviews suggested an “optimism bias,” in which the surrogates were likely to interpret the physicians’ grim prognostication as positive I n t e n s i t y o f C a r e
Time Admission to ICU Death Bereavement Curative care Palliative care Figure 1. Curative and Palliative Approaches to Care throughout a Critical Illness.This diagram, which is adapted from a policy statement of the American Thoracic Society,10 illustrates the relative intensity of curative and palliative approaches to the care of patients at different stages of a critical illness.
In the palliative care model, the intensity of care increas at the end of life, and support of the patient’s family continues beyond the patient’s death.
critical care medicine
with respect to the patient’s condition.26 Clini-cians should recognize that family members who are acting as spokespersons for patients in the ICU are often “living with dying” as they face uncertainty while maintaining hope.27 Hope should be respected during prognostic disclo-sure28 while a realistic view is maintained, an attitude that is aptly expresd by the simple but profound notion of “hoping for the best but pre-paring for the worst.”29ego什么意思
M aking R ecommendations Physicians in the ICU sometimes make recommen-dations to forgo the u of life-support technology. In one study involving surrogates of 169 critically ill patients, 56% preferred to receive a physician’s recommendation on the u of life support, 42% preferred not to receive such a recommendation, and 2% stated that either approach was accept-able.30 A recent survey of ICU physicians showed that although more than 90% were comfortable making such recommendations and viewed them as appropriate, only 20% reported always providing recommendations to surrogates, and 10% reported rarely or never doing so.31 In this study, delivering such recommendations was associated with per-ceptions about the surrogate’s desire for, and agree-ment with, the physician’s recommendations. Other potential influences are uncertainty, per-sonal values, and litigation concerns.
Asking families about their desire for recom-mendations from physicians can be a starting point for s
hared deliberations about care plans.32 Eliciting preferences for how patients or their families wish to receive information, particularly recommendations concerning life support, is not an abnegation of responsibility but rather an ap-proach that is likely to engender trust. Physi-cians should judiciously analyze each situation and align their language and approach with the preferred decision-making model, understand in-terpersonal relationships, and avoid overempha-sizing a particular point of view. For example, in the shared decision-making model of care for dying patients, family discussions typically include a review of the patient’s previous and prent status and prognosis, elicitation of the patient’s values, prentation of the physician’s recommen-dations, deliberations, and joint decision making about ongoing levels of care.
Providing Holistic Car e Cultivating culturally and spiritually nsitive care is central to the palliative approach. The pil-lars of both verbal and nonverbal communica-tion are crucial. Conscious nonverbal communi-cation is rarely practiced yet can be as powerful as verbal communication during end-of-life de-cision making. Physicians should be aware of the cultural landscape reflecting an institution’s catchment area, how cultural norms can influ-ence admissible dialogue, and what is desirable versus dishonoring in the dying process.33
The meaning assigned to critical illness, par-ticularly when death looms, is frequently inter-preted thr
ough a spiritual lens. For many people, critical illness triggers existential questions about purpo (of life, death, and suffering), relation-ships (past, prent, and future), and destiny. Clinicians should be able to po questions about spiritual beliefs that may bear on experiences with respect to illness. Introductory queries can open doors, such as “Many people have beliefs that shape their lives and are important at times like this. Is there anything that you would like me to know?”34 A uful mnemonic for obtain-ing ancillary details is SPIRIT, which encom-pass acknowledgment of a spiritual belief system, the patient’s personal involvement with this system, integration with a spiritual commu-nity, ritualized practices and restrictions, impli-cations for medical care, and terminal-events planning34 (Table 2).
Although it is unrealistic to expect that clini-cians will be familiar with the views of all the world religions regarding death, they should be cognizant of how belief systems influence end-of-life care.35 Physicians may recommend differ-ent approaches to similar situations, depending on their religious and cultural backgrounds, as has been lf-reported36 and documented in ob-rvational studies.37 Innsitivity to faith-bad preferences for discussion and decision making may amplify the pain and suffering of both pa-tients and their families. Clinicians should un-derstand how spirituality can influence coping, either positively or negatively.38 Chaplains are indispensable for ad
dressing and processing existential distress, conducting life review, and facilitating comforting prayers, rituals, or other obrvances.
T h e ne w engl a nd jour na l o f medicine
The Final Steps
If a shift is made in the goals of care from cure to comfort, it should be orchestrated with grace and should be individualized to the needs of the patient.39 Before proceeding with end-of-life measures, it is necessary to prepare staff mem-bers and the patient’s room, as well as the pa-tient (Table 3). The panoply of basic and ad-vanced life-support equipment and the mechanics of their deployment or discontinua-tion are chronicled in multiple studies, as well as in discussion documents, connsus state-ments from professional organizations, and task-force reports.10,17,32,40 Strategies should b
e openly discusd and informed by the same bal-ance of benefits, burdens, and respect for the preferences of patients and their surrogates that apply to other aspects of end-of-life care.10There is no single, universally accepted tech-nical approach. Admissible strategies in most t-tings include variations and combinations of non-escalation of current interventions, withholding of future interventions, and withdrawal of some or all interventions, except tho needed for com-fort. When life-support measures are withdrawn, the process of withdrawal — immediate or grad-ual discontinuation — must be considered care-fully. Mechanical ventilation is the most com-mon life-support measure that is withdrawn.11 However, even in the ca of mechanical ventila-tion, legal or faith-bad requirements, societal norms, and physician preferences influence de-cisions about withdrawal.32 The initiation of non-invasive ventilation with clear objectives for pa-tients who are not already undergoing mechanical ventilation can sometimes reduce dyspnea and delay death so that the patient can accomplish short-term life goals.41 Whatever approach is ud, individualized pharmacologic therapy, which de-pends on prevailing levels of analgesia and da-tion at the time of decisions to forgo life sup-port, should ensure preemptive, timely alleviation of dyspnea, anxiety, pain, and other distressing symptoms.42 Clinicians can mitigate the stress of family members by discussing what is likely to happen during the dying process (e.g., unusual sounds, changes in skin color, and agonal breath-ing). Physician attendance is paramount to re-evaluate the patient’s comfort and talk with the family as needed (Table 4).
Conquences for Clinicians
too late
Dying patients and their families in the ICU are not alone in their suffering. For some clinicians, views about the suitability of advanced life sup-port that diverge from tho of the patient or family can be a source of moral distress. Clini-cians who detect physical or psychic pain and other negative symptoms may suffer indirectly, yet deeply. Vicarious traumatization results from repeated empathic engagement with sadness and loss,43 particularly when predisposing character-istics amplify clinicians’ respon to this work-place stress. Clinicians should be aware of how their emotional withdrawal or lability and “com-passion fatigue” can jeopardize the care of dying patients and their families.Informal debriefing or ca-bad rounds,44 local meetings with other professionals, modi-fied work assignments, and other strategies may help clinicians to cope with the distress.45 Formal bereavement counling that is designed espe-cially for involved clinicians can enhance aware-ness about vicarious traumatization and encour-age adaptive personal and professional coping strategies.End-of-Life Car e as a Qualit y-Improvement Target Palliative care is now a mainstream matter for quality-improvement agendas in many ICUs. A de-cade ago, the Robert Wood Johnson Foundation Critical Care End-of-Life Peer Workgroup and 15 associated nur–physician teams in North
America conducted a review of reported practices * This approach is adapted from Maugans.34 The mnemonic SPIRIT can be ud to elicit a spiritual history from a patient as part of the goal of providing nsitive, compassionate end-of-life care.
