interventions to improve care during withdrawal of life-sustaining treatments

JOURNAL OF PALLIATIVE MEDICINEVolume 8, Supplement 1, 2005© Mary Ann Liebert, Inc.

Interventions to Improve Care during Withdrawal ofLife-Sustaining Treatments

J. RANDALL CURTIS, M.D., M.P.H.

ABSTRACT

Withdrawal of life-sustaining therapies is a common occurrence in the intensive care unit(ICU) setting and also occurs in other hospital settings, long-term care facilities, and even athome. Many studies have documented dramatic geographic variations in the prevalence ofwithdrawal of life-sustaining therapies, and some evidence suggests this variation may bedriven more by physician attitudes and biases than by factors such as patient preferences orcultural differences. A number of studies of interventions in the ICU setting have providedsome evidence that withdrawal of life-sustaining therapies is a process of care that can be im-proved. The interventions have included routine ethics or palliative care consultations, rou-tine family conferences, and standardized order protocol for withdrawal of life support. Forsome of the interventions, for example, ethics consultations or palliative care consultations,the precise mechanisms by which the process of care is improved are not clear. Furthermore,many of these studies have used surrogate outcomes for quality, such as ICU length of stay.Emerging research suggests more direct outcome measures may be useful, including familysatisfaction with care and assessments of the quality of dying. Despite these relative limita-tions, these studies provide convincing evidence that withdrawal of life-sustaining therapyis a process of care that presents opportunities for quality improvement and that interven-tions are successful at improving this care. Further research is needed to identify and test themost appropriate and responsive outcome measures and to identify the most effective andcost-effective interventions.

S-116

INTRODUCTION

THE PURPOSE OF THIS PAPER is to review the stateof the science regarding interventions de-

signed to improve the quality of care for patientsundergoing withdrawal of life-sustaining treat-ments. The literature regarding this topic pri-marily focuses on the intensive care unit (ICU)setting, in large part because this is where with-drawal of life-sustaining treatments occurs mostoften. However, there are studies suggesting that

the withdrawal of life-sustaining treatments alsooccurs in other settings including the acute carehospital setting,1,2 the long-term care setting,3–5

and, in the case of dialysis and of long-term me-chanical ventilation, in the home setting.6–9 Thispaper will focus on the ICU because this is theprimary setting for which interventions to facili-tate withdrawal of life-sustaining treatmentshave been tested and shown to improve care.

Because of the severity of illness, the ICU is a set-ting where death is common. Approximately 20%

Division of Pulmonary and Critical Care Medicine, Department of Medicine, School of Medicine, University ofWashington, Seattle, Washington.

IMPROVING CARE DURING WITHDRAWAL OF LIFE-SUSTAINING TREATMENTS S-117

of all deaths in the U.S. occur in an ICU, whichtranslates to approximately 540,000 Americanswho die in an ICU each year.10 This is similar tothe number of Americans who die of cancer eachyear.11 ICU use at the end of life varies markedlyaccording to the nature of the disease, with the tra-ditional “terminal diseases” such as cancer lesslikely to result in death in the ICU, whereas themore acute, potentially reversible illnesses aremore likely to result in death in the ICU.10 Withthese exceptions, the underlying causes of death inthe ICU reflect the causes of death more generally.Although optimal palliative care of outpatientsshould prevent many terminal ICU admissions, theICU will always remain an important setting forend-of-life care because of the severity of illness ofpatients in the ICU and because many patients withchronic, life-limiting diseases and their families willopt for a trial of intensive care.12–14

Perhaps the best way to improve quality of care regarding withdrawing life-sustaining treat-ments in the ICU is to clarify the goals of care inadvance of critical illness and avoid the life-sus-taining therapies in the ICU altogether when theyare unwanted or unlikely to provide benefit. In the1980s, many experts believed that advance direc-tives would allow patients to inform their physi-cians about the care they want at the end of life andto avoid technological life-sustaining therapies atthe end.15–17 Unfortunately, advance directiveshave not significantly affected the intensity or costsof ICU care,18–20 nor have they changed end-of-lifedecision making.21–23 Nonetheless, advance careplanning before hospitalization is likely to be animportant component for improving end-of-lifecare in the ICU.24,25 However, even with excellentcommunication, improved prognostication, andideal advance care planning, many patients andfamilies will choose a trial of intensive care thatmay ultimately fail.12 With an aging populationand advances in the management of many chronic,life-limiting diseases, it seems likely that the shiftfrom sustaining life to maximizing comfort after atrial of unsuccessful intensive care will continue tooccur frequently in the ICU setting.26

WITHHOLDING VERSUSWITHDRAWING: MORALLY AND

ETHICALLY EQUIVALENT?

It is often said to be a general consensus amongmedical ethicists that withholding and with-

drawing life-sustaining treatments are morallyand ethically equivalent;27–29 critical care organi-zations have produced statements endorsing thisview.30,31 However, although this may be the pre-dominant view in Western medical ethics, it is notthe only view.32,33 Opposition to this view isstrongest among some religious groups. In par-ticular, many Jewish medical ethicists teach thatthere is an important moral distinction betweenwithholding and withdrawing life-sustainingtreatments.34 There is also evidence that someclinicians believe that there is, or experience, adifference between withholding and withdraw-ing life-sustaining therapies.33,35 Many of the em-pirical studies examining withdrawing life-sus-taining treatments in the ICU setting also examinewithholding life-sustaining treatments. In theICU setting, this distinction may be blurred, es-pecially in the case of intermittent life-sustainingtherapies such as dialysis. In other settings, suchas hospice or long-term care, withholding life-sustaining therapies may be taken for granted asthe standard of care because life-sustaining treat-ments may be viewed as no longer medically in-dicated. Furthermore, decisions to withhold ther-apies are often subtle and more difficult to assessaccurately by survey or medical record reviewthan decisions to withdraw life-sustaining thera-pies. Therefore, this paper will focus on inter-ventions to improve quality of care in the settingof withdrawing life-sustaining therapies, but willalso review some of the data concerning with-holding these therapies.

OBSERVATIONAL STUDIES OFWITHDRAWING LIFE-SUSTAINING

TREATMENTS

Many observational studies have examined theproportion of deaths in the ICU that are precededby withholding or withdrawing life-sustainingtherapies.1,36–44 As shown in Table 1, the propor-tion of deaths occurring in the ICU that are pre-ceded by withholding or withdrawing life-sus-taining treatments varies across the differentstudies, but most studies found that the majorityof ICU deaths are preceded by either withhold-ing or withdrawing life-sustaining therapies. Thisfinding is generally true regardless of the time pe-riod, country, or continent in which the study wasconducted. Nonetheless, several studies havedocumented differences across different institu-

tions and across different countries. Prendergastand colleagues surveyed training program direc-tors to determine the proportion of ICU deathspreceded by withholding or withdrawing life-sustaining treatments in 131 ICUs in 110 hospi-tals in 38 states.45 These authors showed dramaticvariation ranging from 0% to 67% of deaths pre-ceded by withholding life-sustaining therapiesand 0% to 79% preceded by withdrawing life-sus-taining treatments. Similarly, Sprung and col-leagues conducted a study of ICU deaths acrossEurope and showed geographic variation in theproportion of deaths preceded by withdrawinglife support with higher proportions in NorthernEurope, intermediate proportions in Central Eu-rope, and lower proportions in Southern Eu-rope.46 However, in a more recent study of with-drawal of mechanical ventilation in 15 intensivecare units located in four countries, Cook and col-

leagues47 did not find variation by site. This lat-ter study raises the question of whether there wassomething different about these 15 ICUs orwhether geographic variation may be decreasingin some areas, as there is more attention paid tothe issue of end-of-life care in the ICU. In a ret-rospective study conducted between 1987 and1990, Curtis and colleagues showed dramatic ge-ographic variation in the decisions to withholdintensive care for patients dying of HIV-relatedPneumocystis carinii pneumonia that was not ac-counted for by severity of the pneumonia or theunderlying human immunodeficiency virus dis-ease.48 Subsequently, these authors conducted asimilar study with data collected from 1995 to1997, updating survival data, but finding no geo-graphic variation.49 These two studies in combi-nation support the hypothesis that variation maydecrease over time with increased focus on the

CURTISS-118

TABLE 1. STUDIES EXAMINING THE PROPORTION OF INTENSIVE CARE UNIT DEATHS PRECEDED BY

WITHDRAWING OR WITHHOLDING OF LIFE-SUSTAINING THERAPIES IN A GENERAL MEDICAL OR

MEDICAL–SURGICAL INTENSIVE CARE UNIT (ICU)

% of Deathspreceded by

Reference Number of % of Deaths % of Deaths withholdingauthor Year(s) of patients preceded by preceded by orand year study Location who died withdrawing withholding withdrawing

Sprung46 1999–2000 37 ICUs in 17 4248 36% 41% 77%European countries

Holzapfel118 1999 1 ICU in France 109 23% 53% 76%Ferrand119 1997 113 ICUs in France 1175 53%Hall120 1996–1997 2 ICUs in 1 hospital 174 79%

in CanadaKollef121 1996 1 ICU in 1 hospital 26, No private 81%

in Missouri attending87, private 30%

attendingEstaban122 1996 6 ICUs in 6 hospitals 644 13% 25% 38%

in SpainKeenan123 1995 9 ICUs in 3 teaching 292 Teaching 4% 64% 68%

hospitals and 6 160 Community 12% 59% 71%community hospitalsin Canada

Nolin124 1994–2000 1 ICU in Sweden 466 41%Prendergast45 1994–1995 131 ICUs in 110 6303 32% 38% 70%

hospitals in 38 USstates

Keenan40 1994 3 ICUs in 3 hospitals 417 51% 20% 71%in Canada

Manara125 1992–1996 1 ICU in Britain 338 65%Prendergast36 1992–1994 2 ICUs in 2 hospitals 200 in 1992–1993 20% 70% 90%

1987–1988 in California 224 in 1987–1988 13% 38% 51%McLean126 1988, 2 ICUs in 2 hospitals 214 in 1993 74%

1993 in Canada 225 in 1988 44%Smedira127 1987–1988 2 ICUs in 2 hospitals 198 45%

in California

topic. Nonetheless, geographic variation in with-drawing and withholding of life-sustaining treat-ments has been shown to be considerable and itremains unclear whether this variation is de-creasing over time.

The reasons for the variations in the propor-tion of ICU death preceded by withholding orwithdrawing life sustaining therapies are not en-tirely clear. Another study by Cook and col-leagues examined the patient determinants ofwithdrawal of life support using a series of pa-tient scenarios presented to critical care physi-cians and nurses across Canada.50 These authorsfound that the most important predictors werethe likelihood of long-term survival, pre-morbidcognitive function, and the age of the patient.There were also a number of clinician character-istics that were associated with an increased will-ingness to withdraw life-sustaining therapies including increased number of years since grad-uation, geographic location, and fewer beds intheir ICUs. Surveys of physicians’ attitudes to-ward withdrawal of life-sustaining therapieshave also identified a number of physician fac-tors that influence physician willingness to with-draw life-sustaining therapies. In particular, asurvey by Christakis and Asch showed thatphysicians who were younger, less religious, spe-cialists, and had more time in clinical practicewere all more willing to withdraw life support.51

These studies suggest that some of the variationmay be determined by clinician attitudes and bi-ases regarding withdrawal of life-sustaining ther-apies.

INTERVENTIONS TO IMPROVEWITHDRAWAL OF LIFE-SUSTAINING

TREATMENTS

One landmark study that attempted to im-prove the quality of end-of-life care for hospital-ized patients and decrease the use of unwantedlife-sustaining therapies at the end of life was theStudy to Understand Prognoses and Preferencesfor Outcomes and Risks of Treatment (SUP-PORT).52 SUPPORT randomized hospitalized, se-riously ill adults to an intervention includingfeedback of prognostic data to physicians, pa-tients, and families, feedback of patient prefer-ences for end-of-life care to physicians, and facil-itation of patient–physician communicationabout end-of-life care. SUPPORT was conducted

by many experienced and talented health servicesresearchers in the field of end-of-life care, and yetthe intervention did not improve quality of care.There have been a number of suggestions as towhy this intervention was unsuccessful.53,54

Some potential explanations include the fact thatthe intervention focused on individual physiciansand patients and did not incorporate the systemsof care and that the outcome measures may nothave been sensitive to small but importantchanges. Although the intervention did not seemto improve care, the study had many importantfindings: many patients died with moderate orsevere pain,51 physicians were unaware of pa-tients’ preferences regarding end-of-life care,55

and the care patients received was not consistentwith their treatment preferences.52 An interven-tion designed to improve the quality of care re-garding withdrawal of life-sustaining therapiesmust incorporate the lessons from SUPPORT.

There have been eight studies published morerecently that have suggested that an interventionfocused on improving end-of-life care in the ICUsetting can improve the quality of care. Table 2summarizes these studies. The interventions in-clude routine ethics consultation, routine pallia-tive care consultation, a standardized order formfor withdrawing life-sustaining therapies, a com-munication intervention in the form of mandatedfamily conferences, a quality improvement proj-ect, and a family informational leaflet. Only twoof these interventions has been evaluated usingthe randomized controlled trial: routine ethicsconsultation and a family informational leaflet.Each of the other interventions have only been as-sessed with before–after study designs.

Routine ethics consultation

In the first of two randomized trials, Schnei-derman and colleagues assessed routine ethicsconsultation in a single center study.56 Eligiblepatients were those for whom study nurses de-termined that “value-based treatment conflicts”arose. The goals of the ethics consultations wereto identify, analyze, and resolve the ethical issues;to educate about ethical issues; and to help pre-sent personal views. The investigators found that,among patients who went on to die, those ran-domized to receive a routine ethics consultationhad a shorter length of stay in the ICU and fewerlife-sustaining treatments. More recently, Schnei-derman and colleagues performed a similar study


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as a multi-center, randomized trial in seven hos-pitals around the U.S.57 Eligible patients werethose in whom a study nurse and site principalinvestigator determined that “value-based treat-ment conflicts” arose. In this study, the interven-tion was described as a process that included as-sessing the ethical issues, making an ethicaldiagnosis, making recommendations for the nextstep including meetings to improve communica-tion, documentation of the consultation in themedical record, follow-up by the ethics consul-tant to provide ongoing support, and evaluationof the process for quality improvement of ethicsconsultation. They found that routine ethics consultations reduced the number of days thatpatients spent in the ICU and hospital, again suggesting that these consultations reduced pro-longation of the dying process. In addition, fam-ilies and clinicians reported a high level of satis-faction with ethics consultation, althoughsatisfaction was not compared with the groupthat was randomized to not receive routine ethicsconsultation. Finally, there has also been a be-fore–after study examining the effect of routineethics consultation in the ICU setting.58 Eligiblepatients included all patients receiving continu-ous mechanical ventilation for more than 96hours. The ethics consultation included assess-ment of advance directives; assessment of deci-sional capacity and legal surrogate decision-maker; assessment of the decisionmakersunderstanding of diagnosis, prognosis, treatmentgoals, and alternatives; assessment of treatingphysicians’ view of prognosis and markers of re-sponse to treatment; and assessment of discus-sions of treatment limitation. After implementa-tion of routine ethics consultations, there was areduction in ICU days for patients who died andmore frequent communication as well as morefrequent decisions to forego life-sustaining treat-ments for these patients.

Routine palliative care consultation

There have been two studies of routine pallia-tive care consultation in selected ICU patients. Ina before–after study design, Campbell and Guz-man studied the effect of routine palliative careconsultation on duration of life-sustaining thera-pies for patients with anoxic encephalopathy af-ter cardiopulmonary resuscitation and also in pa-tients with multiple organ dysfunction syndrome(MODS) with more than three organs affected for3 or more days.59 The intervention conducted by

the palliative care consultants included earlycommunication with the family about prognosis,identifying advance directives or patient prefer-ences, discussion of prognosis and treatment op-tions, implementation of palliative care strategieswhen goals changed to “comfort measures only,”and education of the primary team regarding pal-liative care strategies. These authors showed thatroutine palliative care consultation reduced thenumber of ICU days for the patients with anoxicencephalopathy and also reduced the number ofICU days after onset of MODS for patients withMODS.59 In a follow-up study, these same au-thors applied the same routine palliative care con-sultation intervention to patients admitted to themedical ICU with severe dementia and againfound that after implementation of routine pal-liative care consultation, patients who receivedthe consultation had fewer ICU days and also hadfewer life-sustaining treatments after initiation ofa Do Not Resuscitate order.60

Standardized order form for withdrawal of life-sustaining treatments

There has been one before–after study of a stan-dardized order form for withdrawal of life-sus-taining therapies.61 This study used a before–af-ter design to evaluate the order form amongpatients who died in the ICU. The order form con-tained four sections: (1) preparation for with-drawal of life support (which included docu-mentation of family conference; discontinuingroutine labs and radiographic tests; discontinu-ing prior medications; completion of a Do NotResuscitate order); (2) a sedation and analgesiaprotocol that provided for continuous narcoticand benzodiazepine infusion if needed and pro-vided nurses with wide latitude on doses and nomaximal dose, but required documentation of thesigns of discomfort that prompted increaseddoses; (3) a protocol for withdrawing mechanicalventilation that focuses on maximizing patientcomfort; and (4) a set of principles to guide with-drawal of life-sustaining therapies. The interven-tion included development of the order form withinput from multiple disciplines including nurs-ing, physicians, pharmacists, and respiratorytherapists as well as unit-based education on useof the order form before implementation. Theseauthors showed that the order form was foundto be helpful by the vast majority of physiciansand nurses and resulted in an increased averagedose of opioids and benzodiazepines used dur-

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ing the 1 hour before ventilator withdrawal andthe 1 hour after ventilator withdrawal. However,the intervention was not associated with anychange in the time from ventilator withdrawal todeath. Interesting, there was also an increase inthe standard deviation of drug dose used for bothopioids and benzodiazepines. This study sug-gests that there was an increase in medicationused for pain and sedation among some patientswithout evidence that these medications wereused in a way that hastened death. The authorsalso examined a nurse assessment of the qualityof dying and death, using a validated question-naire,62,63 but this intervention did not show anysignificant change in the nurses assessment of thequality of dying and death.

Routine family conferences

Another intervention assessed in a before-afterstudy was the implementation of a policy re-garding routine family conferences in the ICU set-ting. Lilly and colleagues assessed this interven-tion among critically ill patients for whom theattending physician predicted a risk of mortalitygreater than 25% or anticipated an ICU length ofstay of more than 5 days.64 The intervention wasa mandated family conference for these patientswithin 72 hours of admission to the ICU. The con-ferences were to be conducted by the attendingphysician and to cover four topics, including: (1)review of the medical facts and treatment options;(2) discussion of the patient’s perspectives ondeath and dying; (3) agreement on a care plan;and (4) agreement on criteria by which success orfailure of the plan would be judged. This inter-vention was associated with a reduction in ICUdays and the reduction was most prominentamong the patients with the highest severity ofillness who went on to die. These results weresustained in a 4-year follow-up report from thisinvestigative group.65

More recently a study of communication dur-ing family conferences has suggested some spe-cific features that are associated with increasedfamily satisfaction or investigator assessment ofthe quality of communication including an in-crease in the proportion of time during the con-ference that the family speaks66 and a focus onpotential missed opportunities, such as the op-portunity to listen and respond to family mem-bers, the opportunity to acknowledge and ad-dress family emotions, and the opportunity toaddress basic tenets of palliative care including

the exploration of patient preferences, decision-making using substituted judgment, and non-abandonment.67 In addition, a prior study hassuggested that a number of features of care of thefamily are associated with a reduction of symp-toms of anxiety and depression among familymembers including consistent communication bydifferent team members and finding a privateplace for the family.68

Quality improvement project

There has been a published quality improve-ment project designed to improve quality of end-of-life care in the ICU.69 This project was under-taken in response to legal actions taken against acritical care physician after withdrawal of life-sustaining treatments. In response, the qualityimprovement intervention was designed withthree steps: (1) identify nurses and family con-cerns about end-of-life care in the ICU; (2) alternursing progress notes entries to increase docu-mentation of the withdrawal process; and (3)change orders to be used for analgesic and seda-tive medications to require a fixed upper limit tothe amount of drug administered. Among thosepatients that died, the intervention was associ-ated with reduction in the use of cardiopul-monary resuscitation in the last 12 hours of life,fewer number of analgesic and sedative medica-tions used, and lower cumulative doses of di-azepam.

Family informational leaflet

There has also been a randomized trial show-ing that the distribution of an informationalleaflet to family members of critically ill patientsimproved family member understanding of pa-tients’ illnesses and treatments and family satis-faction.70 Although this study did not target fam-ily members of patients undergoing withdrawalof life support, it seems likely that these familymembers would also benefit and this study pro-vides direction for future studies to improve fam-ily experience before, during, and after with-drawal of life support.

Summary of interventions to facilitate withdrawalof life-sustaining treatments

The evidence described above, based on tworandomized trials and a before–after study,56–58

suggest routine ethics consultation reduce ICUdays, and decrease prolongation of dying for a


subset of critically ill patients. These data alsosuggest that the ethics consultations are well re-ceived by family members and ICU clinicians. Al-though the process of the consultations are de-scribed, it is difficult to know what aspects ofthese consultations reduced ICU days andwhether, as ICU clinician experience with ethicsconsultation increases, the benefit of consultationwill persist. Before–after studies suggest that pal-liative care consultation may also have a similareffect on ICU length of stay for selected pa-tients.59,60 Whether these two interventions havea similar mechanism is hard to assess based onexisting data. A recent review article describessome of the models that can be used for ethicsand palliative care consultation in the ICU andthe settings in which either ethics consultation orpalliative care consultation may be more useful.71

The study by Lilly and colleagues also suggeststhat ICU clinicians may be able to have a similareffect by implementing routine family confer-ences in the sickest patients.64,65 Finally, simpleinterventions such as an informational leaflet forfamilies may improve the family experience.70

One study suggested that a standardized orderform for withdrawal of life-sustaining treatmentsin the ICU is associated with high levels of clini-cian satisfaction and can increase use of opioidsand benzodiazepines, on average, for these pa-tients without hastening death.61 There are alsosome data to suggest that quality improvementprojects targeting end-of-life care in the ICU set-ting can affect quality measures.69 Interestingly,the former of these two studies had the goal ofincreasing critical care nurses’ ability to giveanalgesic and sedative medications when neededwhile the latter had the goal of decreasing thevariability in use of sedating medications in thesetting of open-ended orders. Each study had itsintended effect, although the intended effectswere oppositional. Both studies attempted to in-crease nurses’ documentation of the reasons forgiving analgesic and sedative medications in thesetting of withdrawal of life-sustaining treatment;and one study examined documentation andshowed that this documentation did increase.69

One feature of each of these successful inter-ventions that is important to note is that each in-cluded an explicit involvement of an interdisci-plinary team that included, at a minimum,physicians and nurses. Critical care nurses pro-vide an important component of the care72–77 forpatients undergoing withdrawal of life-sustaining

treatments and will likely be an important part ofsuccessful interventions to improve this care.

METHODOLOGICAL ISSUES INSTUDIES TO IMPROVE WITHDRAWAL

OF LIFE-SUSTAINING THERAPIES

Outcome assessment

Studies of interventions to improve the qualityof withdrawal of life-sustaining treatments mustaddress the issue of identifying the appropriateoutcomes for such interventions. Several studieshave used ICU length of stay among all patientsor among patients that die as the outcome mea-sure. The rationale for this outcome measure isthat if ICU days are decreased for those patientsthat ultimately die and without an increase inoverall mortality, the intervention has reducedthe “prolongation of dying.” This outcome as-sumes that prolongation of dying is a marker ofpoor quality care. There are some important the-oretical limitations to ICU days as an outcomemeasure for such interventions. For example, anintervention that “rushed” families to make de-cisions might be associated with decreased fam-ily satisfaction with care and increased family de-pression and anxiety. There may also come apoint in time when the prolongation of dying hasbeen sufficiently minimized so that further im-provements in the quality of care regarding with-drawal of life-sustaining treatments may not nec-essarily result in further reductions in ICU days.Nonetheless, in the current environment, reduc-ing ICU length of stay, particularly if it is associ-ated with high levels of family satisfaction, seemslike an appropriate surrogate marker for im-proved quality of care.

A similar outcome measure used in some stud-ies is reduction in technologic life-sustaining ther-apies after a decision is made to limit life-sustaining therapies. Campbell and Guzman con-ducted two studies using a measure called Ther-apeutic Intervention Scoring System (TISS). TISSquantifies standard ICU and hospital interven-tions through the assignment of weighted points.These authors argue that TISS points after a DoNot Resuscitate order is a surrogate marker ofquality of care in the process of withdrawing life-sustaining treatments, as the use of nonbeneficialinterventions that do not increase patient comfortare reduced.59,60

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Another potential assessment of quality ofwithdrawal of life-sustaining treatments is fam-ily or clinician satisfaction with care. Patient sat-isfaction is not a practical outcome measure, asthe vast majority of patients are not able to re-spond to questions at the time that a decision ismade to withdraw life-sustaining therapies.36

Family and clinician satisfaction has been used inrandomized trials by Schneiderman and col-leagues, although in these studies the authors as-sessed satisfaction with the intervention andtherefore did not survey family members of pa-tients in the control arm.56,57 Treece and col-leagues used a measure called the Quality of Dy-ing and Death (QODD), a survey completed bynurses (in this study) to assess quality of with-drawal of life support.61 The family-assessedQODD was validated in a study of 204 deaths inMissoula County and was shown to have goodinternal consistency (Cronbach’s � � 0.86) andconstruct validity, correlating significantly withmeasures of symptom burden, patient–cliniciancommunication about treatment preferences, andseveral measures of quality of care78; and it hasbeen shown to have a moderate inter-rater relia-bility among family members, with an intra-classcorrelation coefficient of 0.44.79 The family-as-sessed QODD was also shown to correlate withother markers of quality of care in a study of pa-tients in hospice.80 The QODD has been used toevaluate the quality of ICU deaths in several stud-ies.63,79,81,82 Levy and colleagues showed that thisinstrument could be completed by family mem-bers, nurses, resident physicians, and attendingphysicians. They reported that nurses and resi-dent physicians gave more negative ratings thanfamily members or attending physicians.81

Hodde and colleagues showed that the ICUnurse-assessed QODD demonstrated signifi-cantly higher quality of dying among patientswho did not receive cardiopulmonary resuscita-tion in the last 8 hours of life and for patients whohad someone present at their death.63 Althoughthese studies suggest the QODD may be a usefultool for assessing quality of withdrawing life-sus-taining treatments, it is not been demonstrated tobe responsive to an intervention. The study of astandardized order form for withdrawal of life-sustaining therapies did not show improvementin the QODD score, either because the interven-tion was not effective for this outcome or the out-come tool may not be sensitive to a small but clin-ically important difference.61 Further studies are

needed to determine whether the QODD will bea useful outcome measure for such interventions.There are additional measures of family satisfac-tion with intensive care that may be useful out-come measures for studies of interventions to im-prove withdrawal of life-sustaining therapies; butthese measures, although reliable and valid, havenot been used in a way that allows assessment oftheir responsive to change.83–86

Another potential category of outcome mea-sures for interventions to improve end-of-life carein the ICU include psychosocial outcomes forfamily members and reduction of conflicts amongICU team members and between team membersand family members. Prior studies have shown ahigh level of anxiety and depression among fam-ily members of critically ill patients68 and a sig-nificant burden of symptoms of post-traumaticstress disorder among family members.87 Becausehigh-quality care in the ICU includes family-cen-tered care,88 improvement in psychological dis-tress for family members is an important outcomefor future studies. In addition, a number of stud-ies have shown a significant amount of conflictwithin the ICU team or between the team andfamily members around issues of withdrawinglife support.89–93 Some degree of conflict, if ap-propriately addressed, may facilitate decisionmaking.94 Nonetheless, high degrees of conflictor unresolved conflict may be another potentialtarget of interventions to improve end-of-life carein the setting of withdrawal of life support.

Identifying the target patient population

One of the challenges to improving withdrawalof life-sustaining treatments in the ICU is identi-fying the patients who should be targeted forsuch interventions early during their hospital orICU course. For example, the SUPPORT studytargeted seriously ill patients with one or more ofnine specific illnesses: acute respiratory failure,multiple organ system failure with sepsis, multi-ple organ system failure with malignancy, coma,chronic obstructive lung disease with respiratoryfailure, decompensated congestive heart failure,severe cirrhosis, metastatic colon cancer, andnon–small cell lung cancer.52 Campbell and Guz-man also targeted specific conditions, such asanoxic encephalopathy after cardiopulmonary re-suscitation, multiple organ dysfunction syn-drome, and severe dementia.59,60 The study byLilly and colleagues focused on patients who had


a predicted length of ICU stay more than 5 daysor a predicted mortality of more than 25% as es-timated by the attending physician.64 Prognosticmodels, such as the Acute Physiology andChronic Health Evaluation (APACHE), couldalso be used to identify those patients at highestrisk for death, although such models are limitedin their ability to predict accurately the risk ofdeath for an individual patients.95 Interventionsto improve withdrawal of life-sustaining thera-pies are obviously not applicable to all criticallyill patients. However, identifying all patients whomay benefit from such an intervention early inthe course of their ICU or hospital stay is a chal-lenging task and one that can be operationalizedin many ways.

BEST PRACTICES BASED ON THEEVIDENCE AND EXPERT OPINION

Unfortunately, there are limited data to guideclinicians in the practical aspects of how to with-draw life-sustaining treatments. Expert opinionprovides a framework for clinician to considerand adapt.96–99 Practice should be guided by athorough understanding of the goal of with-drawing life-sustaining treatments: the goal is toremove treatments that are no longer desired orindicated and that do not provide comfort to thepatient. There is growing evidence that an im-portant focus for improving withdrawal of life-sustaining therapies is to improve communica-tion within the clinical team and between theteam and the patient and family. Interventions toimprove clinicians’ communication skills is thefocus of another paper in this volume (see Tul-sky article in this supplement). In addition to theimportance of good communication in the pro-cess of making a decision to withdraw life-sus-taining therapies, communication within theteam and with the family is also important afterthe decision is made. Several topics should becovered with families including explanations ofhow interventions will be withdrawn, how thepatient’s comfort will be insured, the patient’s ex-pected length of survival, the continuation of careby the clinical team, and family or patient pref-erences about other aspects of end-of-lifecare.98,100 Time should also be spent discussing,understanding, and accommodating cultural andreligious perspectives.101

The decision to withdraw life support as wellas the rationale for this decision should be docu-

mented in the medical record. There is evidencethat these decisions and the care delivered afterthese decisions is very poorly documented inmedical records.102,103 An explicit plan for per-forming the procedure of withdrawing life-sus-taining therapies should be formulated as well asa plan for handling complications that may arise.The patient should be in the appropriate settingwith irrelevant monitoring removed. The entireprocess should be carefully documented includ-ing the reasons for increasing sedation or anal-gesia and the outcomes should be evaluated toimprove the quality of this care.

Once a decision is made to withdraw life-sus-taining treatments, the time course over which alife-sustaining treatment is withdrawn should bedetermined by the potential for discomfort astreatment is stopped. Mechanical ventilation isone of the few life-sustaining therapies the abrupttermination of which can lead to discomfort. In acommon approach to terminating mechanicalventilation, often called “rapid terminal wean-ing” or “terminal ventilator discontinuation,” theFiO2 is reduced to room air and positive end-ex-piratory pressure is reduced to zero followed byan assessment of patient comfort. The ventilatorysupport is then reduced from baseline to zerowith use of opioids as needed for patient com-fort, at which point the patient is placed on a T-piece with humidified air or extubated. The speedof this process should be guided by the potentialfor discomfort in a given patient, but shouldrarely take more than 5–20 minutes. As the term“weaning” suggests that the goal is independentspontaneous ventilation, the phrase “terminalventilator discontinuation” may be more appro-priate.94 Limited data are available as to whetherpatients should be extubated. Small observationalcohort studies have found no significant differ-ence in patient comfort,104–106 but these studieslack power to detect clinically important differ-ences.

During the process of withdrawing life-sus-taining therapies with the anticipated result thatthe patient will die, a primary responsibility ofthe clinical team is to ensure that the patient doesnot suffer pain, dyspnea, or other symptoms dur-ing this process. With the rare exception of thepatient who chooses to forego or to limit anal-gesic and sedative medications to maintain alert-ness, most patients believe the absence of painand other symptoms is an important componentof high quality end-of-life care.107–109 In the set-ting of withdrawing life-sustaining treatments,

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there are observational data from some hospitalsto suggest that opioids and benzodiazepines arenot used in a manner that hasten death.105,110 Ad-equate analgesia and sedation should be a majorpriority in this setting.

Expert opinion suggests that neuromuscularblockers serve no therapeutic purpose duringwithdrawal of life support.111 The argument hasbeen made that paralytic drugs ease the family’sdistress by making the dying patient appear to becomfortable, but that these drugs may increase suf-fering by preventing clinicians from adequately as-sessing patient discomfort. For this reason, phar-macological paralysis should be stopped beforelife-sustaining therapies are withdrawn.

In considering withdrawing life-sustainingtreatment, it is important to incorporate cultur-ally sensitive care by understanding that somecultures do not accept western ethical principlessuch as the equivalence of withholding and with-drawing life support or the definition of braindeath.112 Therefore, it is important to anticipatethese scenarios and to be prepared to apply prin-ciples of culturally effective end-of-life care tothese situations.113

WITHDRAWING LIFE-SUSTAININGTREATMENTS IN SETTINGS OTHER

THAN THE ICU

Most of the evidence regarding withdrawinglife-sustaining treatments concerns patients in theICU setting. However, a study of all deaths infour hospitals conducted by Faber-Langendoenshowed that withholding and withdrawing life-sustaining treatments also occurs in hospital set-tings other than the ICU. In fact, this studyshowed that 76% of deaths in the ICU were pre-ceded by withholding or withdrawing life-sus-taining treatments, whereas 95% of deaths inacute care wards were preceded by withholdingor withdrawing life-sustaining treatments.1

Reynold and colleagues showed that 79% ofdeaths in the long-term care setting were pre-ceded by Do Not Resuscitate orders and 39%were preceded by a decision to withhold or with-draw other treatments.5 Mehr and colleaguesconducted a comparison study of two prospec-tive cohorts of long-term care residents with de-mentia in Missouri (n � 701) and in the Nether-lands (n � 706) found that antibiotics werewithheld in 15% of cases in Missouri, 23% casesin the Netherlands.114 There have also been stud-

ies that have documented the experience of pa-tients undergoing withdrawal of chronic dialy-sis.6,115–117 One of these studies found that mostdeaths following withdrawal of dialysis wererated by patients or family as good or very good.6

Among patients with amyotrophic lateral sclero-sis, the majority of patients die after a decision towithhold or withdraw life-sustaining treatment,although in these patients there is a significantburden of physical symptoms in the last monthof life.9 There is little evidence available in thepublished literature identifying interventionsthat improve quality of care concerning with-drawal of life-sustaining therapies for these set-tings outside of the hospital or ICU in part be-cause withdrawal of life-sustaining treatments ismuch less common outside of the ICU setting.

CONCLUSIONS

Withdrawal of life-sustaining therapies is a com-mon occurrence in the ICU setting and also occursin other hospital settings, long-term care facilities,and even at home. Many studies have documenteddramatic geographic variations in the prevalenceof withdrawal of life-sustaining therapies andsome evidence suggests this variation may be dri-ven more by physician attitudes and biases thanby factors such as patient preferences or culturaldifferences. A number of studies of interventionsin the ICU setting have provided some evidencethat withdrawal of life-sustaining therapies is aprocess of care that can be improved. However,many of these interventions use surrogate out-comes for quality, such as ICU length of stay. Forsome of the interventions, for example, ethics con-sultations or palliative care consultations, the pre-cise mechanisms by which the process of care isimproved are not clear. Nonetheless, there is con-vincing evidence that withdrawal of life-sustain-ing therapy is a process of care that presents op-portunities for quality improvement and thatinterventions are successful at improving this care.Further research is needed to identify and test themost appropriate and responsive outcome mea-sures and to identify the most effective and cost-effective interventions.

ACKNOWLEDGMENTS

This manuscript was supported by an RO1grant from the National Institute of Nursing Re-


search (5 RO1 NR-05226). The author acknowl-edges Drs. Margaret Campbell, Ruth Engelberg,Graeme Rocker, and Gordon Rubenfeld for theirthoughtful review of this manuscript.

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Address reprint requests to:J. Randall Curtis, M.D., M.P.H.

Division of Pulmonary and Critical Care MedicineHarborview Medical Center, Box 359762

325 Ninth AvenueSeattle, WA 98104-2499

E-mail: [email protected]


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