AJCC
HOME HELP FEEDBACK SUBSCRIPTIONS ARCHIVE SEARCH TABLE OF CONTENTS
QUICK SEARCH:   [advanced]


     

American Journal of Critical Care. 2006;15: 65-77
This Article
Right arrow Abstract Freely available
Right arrow Full Text (PDF)
Right arrow Respond to This Article
Right arrow Alert me when this article is cited
Right arrow Alert me when eLetters are posted
Right arrow Alert me if a correction is posted
Services
Right arrow Email this article to a friend
Right arrow Similar articles in this journal
Right arrow Similar articles in PubMed
Right arrow Alert me to new issues of the journal
Right arrow Download to citation manager
Right arrow reprints & permissions
Citing Articles
Right arrow Citing Articles via HighWire
Right arrow Citing Articles via Google Scholar
Google Scholar
Right arrow Articles by Guentner, K.
Right arrow Articles by Chelluri, L.
Right arrow Search for Related Content
PubMed
Right arrow PubMed Citation
Right arrow Articles by Guentner, K.
Right arrow Articles by Chelluri, L.

Preferences for Mechanical Ventilation Among Survivors of Prolonged Mechanical Ventilation and Tracheostomy

By Kathleen Guentner, RN, PhD, Leslie A. Hoffman, RN, PhD, Mary Beth Happ, RN, PhD, Yookyung Kim, PhD, Annette DeVito Dabbs, RN, PhD, Aaron B. Mendelsohn, PhD, MPH and Lakshmipathi Chelluri, MD. From Nursing Quality and Outcomes, University of Pittsburgh Medical Center (KG), Department of Acute/Tertiary Care (LAH, MBH, ADD) and Department of Health and Community Systems (YK), University of Pittsburgh School of Nursing, Department of Epidemiology, University of Pittsburgh Graduate School of Public Health (ABM), and Department of Critical Care Medicine, University of Pittsburgh School of Medicine (LC), Pittsburgh, Pa.


   Abstract
Top
 Abstract
Patients’ Preferences
 Methods
 Results
 Discussion
 Limitations
 Conclusion
 References
 
• Background Among survivors of prolonged mechanical ventilation, preferences for this treatment have rarely been explored.

• Objectives To elicit preferences of survivors of prolonged mechanical ventilation (≥7 days) and factors influencing these preferences.

• Methods A descriptive, cross-sectional survey design was used. Subjects were recruited from intensive care units in a tertiary care hospital and from long-term care facilities. Each subject (n = 30) was asked to reflect on the decision to use mechanical ventilation; rate current health, pain/discomfort in the intensive care unit and from mechanical ventilation, perceived family financial burden, and emotional/physical stress related to mechanical ventilation; identify changes that would influence preference for mechanical ventilation; and answer questions about quality of life, functional status, depressive symptoms, and communication.

• Results Most subjects (75.9%) would have chosen mechanical ventilation. Median days of mechanical ventilation and tracheostomy were greater for subjects who would have chosen mechanical ventilation (98.5 vs 70), as were median days of tracheostomy (102 vs 64). Patients who would not have chosen mechanical ventilation had more depressive symptoms and were more likely to be insured by Medicare. No other variables differed between groups. Patients who preferred mechanical ventilation would change their preference on the basis of their families’ emotional/physical stress and financial burden. Patients who did not prefer mechanical ventilation would change their preference if the family financial burden and emotional/physical stress were reduced and current health improved.

• Conclusions Most patients would have chosen mechanical ventilation. Survivors’ preferences were influenced by their current health and families’ financial burden and stress.

Care in the intensive care unit (ICU) is associated with significant costs, and critically ill patients who require prolonged mechanical ventilation account for a substantial proportion of these costs.1 Although most patients who require mechanical ventilation during an acute illness are quickly weaned from ventilatory support, in a minority, an estimated 3% to 6% of all patients admitted to the ICU, weaning is prolonged.2,3 The cost of caring for patients who are difficult to wean is related to the time and effort-intensive nature of the weaning process, extended stay in acute and long-term care facilities, and the morbidity associated with increased duration of ventilatory support.4,5

Escalating healthcare costs, concerns about patients’ autonomy, and recognition that prolonged ICU stays are often followed by death or disability have prompted evaluation of the benefits and burdens of intensive care and life-sustaining therapies.4–14 Mortality is high in patients who require prolonged mechanical ventilation; according to estimates, 33% to 44% of patients who require such treatment die during the first 12 months after discharge from the ICU.9,10 Higher mortality is associated with increased age,4,5,10 more comorbid conditions,4,10 and poorer functional status before hospitalization.10 Despite resource-intensive treatment, most patients who require prolonged mechanical ventilation experience profound physical debilitation as a consequence of their extended illness.12 Consequently, nearly all spend an extended period in a long-term care facility after discharge from the ICU.4,5,7 Although Niskanen et al11 found that 6 months after ICU discharge most patients who had required prolonged intensive care were independent in activities of daily living, in most studies,4,5,10,12 similar patients had a significant decline in physical functioning. Nevertheless, long-term survivors of prolonged mechanical ventilation commonly report satisfaction with their quality of life despite moderate to severe limitations in functional ability.9,10,13


Patients who require prolonged mechanical ventilation have mortality rates of 33% to 44% during the 12 months after ICU discharge.

 


Survivors of prolonged mechanical ventilation commonly report satisfaction with their life despite functional limitations.

 


   Patients’ Preferences
Top
 Abstract
 Patients’ Preferences
Methods
 Results
 Discussion
 Limitations
 Conclusion
 References
 
The focus of most studies of outcomes after prolonged mechanical ventilation has been physical functioning, quality of life, morbidity, mortality, and the caregiving experience.3–13 Patients’ preferences for prolonged mechanical ventilation have rarely been explored.14 Of studies in which preferences were examined, most were anticipatory in nature (ie, patients were asked to make decisions in anticipation of requiring mechanical ventilation) and were focused on end-of-life decision making.15–17 It is unclear whether patients who have had an opportunity to reflect on their experiences during an episode of critical illness, including prolonged mechanical ventilation, would have the same preferences as those verbalized before the event.14

In one of the few studies in which preferences of ICU patients were examined, Teno et al6 interviewed patients admitted to the ICU for 14 days or longer or the patients’ surrogate decision makers and physicians to determine how often prognosis, preferences, and goals of medical care were discussed. Only 34% of patients or surrogates had discussed preferences with the patients’ physicians by the second week of hospitalization. In another study, Mendelsohn et al14 interviewed survivors of prolonged mechanical ventilation 12 months after the patients’ discharge from the ICU. Most patients (86.5%) indicated that they would elect to undergo mechanical ventilation again. However, in that study,14 prolonged mechanical ventilation was defined as treatment for 48 hours or longer; the more common definition is treatment for 7 days or longer. Therefore, whether patients who required mechanical ventilation for a longer interval would express the same preferences remains unclear.

Communication status may also affect patients’ preferences for mechanical ventilation, but little research has been done on this aspect of functioning.18 Initially, mechanical ventilation is provided via an endotracheal tube. Extended use of an endotracheal tube, especially for periods longer than 7 days, may cause hoarseness, vocal cord immobility, and laryngeal stenosis, resulting in impaired speech.19 In order to minimize risk and promote comfort, a tracheostomy is typically performed after 7 to 10 days of mechanical ventilation if a patient cannot be weaned from mechanical ventilation or has problems with airway secretions.20 However, the need for a tracheostomy compromises the ability to communicate, especially if a cuffed tube is required.21 Although augmentative communication methods can be used (eg, paper and pencil, tracheostomy tubes with speaking valves, computer keyboards), such devices are infrequently and inconsistently used in ICUs.18

Evidence also exists that depressive symptoms may influence preferences for mechanical ventilation. According to studies by Levowitz22 and Kessler et al,23 15% to 20% of elders in the United States have clinically significant depression. Among older adults, those most likely to be depressed are those with social isolation, comorbid conditions, and physical impairments,24 characteristics common among patients who experience prolonged mechanical ventilation. From a study7 of 232 patients who underwent prolonged mechanical ventilation (≥48 hours), 35% were at risk for clinical depression as indicated by self-reported symptoms on the Center for Epidemiologic Studies Depression scale (CES-D). Further, survivors with scores reflecting more depressive symptoms were less likely than survivors with fewer depressive symptoms to indicate a preference for mechanical ventilation.14 These findings are similar to those reported from a study25 of patients with chronic obstructive pulmonary disease who also completed the CES-D. In that study, 50% of patients with depression compared with 23% of patients without depression would refuse cardiopulmonary resuscitation. However, self-reported depression was not significantly associated with preference for mechanical ventilation.

The purpose our study was to extend the work of Mendelsohn et al14 to include patients who had prolonged mechanical ventilation for a longer period (≥7 days rather than ≥48 hours). In addition to variables previously examined, we assessed the effect of communication status and tracheostomy on patients’ preferences because we reasoned that ability to share thoughts verbally might be a significant determinant of a patient’s preference. Additional variables examined included quality of life, functional status, depressive symptoms, demographics, and clinical characteristics.


   Methods
Top
 Abstract
 Patients’ Preferences
 Methods
Results
 Discussion
 Limitations
 Conclusion
 References
 
Site and Sample
Patients were recruited from the University of Pittsburgh Medical Center, a tertiary care institution (n = 9), and from 6 long-term care referral sites (n = 21) in southwestern Pennsylvania during a 5-month interval (March 2004 through July 2004). The referral sites included 3 long-term acute care hospitals and 3 skilled nursing facilities. Patients were eligible for the study if they were 18 years or older, had received mechanical ventilation for 7 days or longer, had had a tracheostomy during this admission, were able to understand English (required to answer questionnaires), and had no cognitive impairment as indicated by a standardized score of 24 or higher on the Mini-Mental State Examination (MMSE).24 The study was approved by the appropriate institutional review board, and all patients provided informed consent.

Design
A descriptive, cross-sectional survey design was used. Each patient answered 5 questionnaires to assess (1) preferences toward mechanical ventilation for actual and hypothetical situations, (2) quality of life, (3) physical functioning, (4) depressive symptoms, and (5) communication status. The questionnaires were explained, any questions the patient had were answered, and the questionnaires were completed in the order listed during an interview session scheduled a minimum of 6 weeks (range 6–362.6 weeks) after the patient had been treated with mechanical ventilation for 7 days or longer and had received a tracheostomy. The interview took place in the patient’s room and lasted approximately 1.5 hours. If the patient wanted his or her family present, the request was granted. All tools were administered verbally by a member of the research team (K.G.) who introduced herself as a nursing student working on her doctoral degree and who was not known to any of the patients in the study. A laminated card was presented to the patient to facilitate ease in providing responses. Proxy responses were not used.

Instruments
  Preferences for Mechanical Ventilation.   Preferences for mechanical ventilation were assessed by using an instrument14 designed to elicit preferences for mechanical ventilation from critically ill patients who received mechanical ventilation in an ICU. When completing this part of the study, patients were first asked if they would have chosen mechanical ventilation (yes or no) in view of their experiences. The patients then were asked to rate 5 domains associated with their experiences in the ICU and after discharge from the unit: current health state, pain or discomfort from mechanical ventilation, pain or discomfort in the ICU, perceived family financial burden from hospitalization, and perceived family emotional and physical stress (caregiver burden) from hospitalization. The patients used a 5-point Likert scale that ranged from 0 (positive, i.e., excellent health, no pain or discomfort) to 4 (negative, i.e., poor health, extreme pain or discomfort) (see FigureGo). In order to reduce order effects, patients were given the opportunity to change their responses after answering all 5 questions. If a response was changed, the new answer was recorded. If a patient did not recall being in the ICU, treatment with mechanical ventilation, or aspects of the experience (pain or discomfort), the response was coded as no pain or discomfort. Once the patients answered the question about the domains, they were asked again if they would choose mechanical ventilation. This preference was the one used for calculations.



View larger version (14K):
[in this window]
[in a new window]
  		Preference tool for mechanical ventilation.

 
After these ratings were recorded, patients were asked to identify hypothetical changes in each of the domains that would alter the patients’ preferences for mechanical ventilation. For each patient, each of the 5 domains was manipulated individually (with the levels of the other 4 domains kept constant) until the patient changed his or her preference. For example, a patient who indicated that he or she would have chosen mechanical ventilation was asked if a more negative experience in regard to the patient’s current health state, pain or discomfort from mechanical ventilation, pain or discomfort in the ICU, and so on would alter this preference. Conversely, a patient who indicated that he or she would not choose mechanical ventilation was asked if a more positive experience in regard to each domain would alter this preference. Each patient was questioned about changes in his or her preference until he or she indicated a point between 2 consecutive points along the 5-point scale where this preference changed. This point was termed the indifference point, that is, the point at which the patient had no preference between the 2 alternatives (mechanical ventilation or no mechanical ventilation). Patients whose preference did not change for any scale value were deemed to have no indifference point for that factor. Training to administer the preference tool occurred during a period of 12 weeks and was guided by its developer (A.B.M.).

Procedures used to develop this tool have been previously described.14 The 5 domains were chosen to reflect experiences during and after an ICU stay from the perspective of patients. Selection of the domains reflected consensus of intensivists, epidemiologists, and decision theorists based on their experience, a review of the literature, and views of former patients. Patients in a pilot study were asked to provide additional items. Because the tool was developed as a multidimensional instrument and each item was developed to represent a single dimension (i.e., 1-item scale for each construct), internal consistency reliability could not be computed as was done for other measures used in this study.

  Quality of Life.   Quality of life was measured by using the Medical Outcomes Study Short Form, version 2 (SF-36).26 The SF-36 was developed as a generic measure of physical functioning and well-being. It consists of 8 subscales: physical functioning, role functioning, bodily pain, general health, vitality, social functioning, mental health, and reported health transition. Scores on 4 subscales (physical functioning, role functioning, bodily pain, and general health) are combined to yield a physical component score, and scores on the remaining 4 subscales (vitality, social functioning, mental health, and reported health transition) are combined to yield a mental component score.27 The total score ranges from 0 to 100; higher scores indicate greater quality of life and general health.

Reliability coefficients have been reported to equal or exceed 0.80.26 Internal consistency and item discriminate validity have been reported to equal or exceed 0.40.27 In our study, internal consistency, as indicated by the Cronbach {alpha}, was .78 for the physical subscale and .80 for the mental subscale. The SF-36 has been used successfully with patients with both acute and chronic illnesses, including patients treated with mechanical ventilation.28 The time required to complete this instrument was 15 to 20 minutes.

  Physical Functioning.   Physical functioning was measured by using the Health Assessment Questionnaire.29 This tool provides information about the ability to participate in activities of daily living and was used to amplify information obtained from the SF-36 on ability to carry out such activities. Eight general categories are assessed: dressing and grooming, arising, eating, walking, hygiene, reach, grip, and outside activity. A total of 18 items are scored according to the scale 0 = without any difficulty, 1 = with some difficulty, 2 = with much difficulty, and 3 = unable to do. An additional item requests information about the need to use aids or devices, such as a cane or wheelchair, or help from another person. The highest score on any item within each category is used as the score for that category. A point is added when the patient needs to use a disability aid, such as a cane, walker, or wheelchair. The total score is determined by adding scores for each category and dividing by the total number of categories completed. Scores range from 0 to 3; higher scores indicate greater functional impairment.

Reported estimates of internal consistency range from 0.7130 to 0.94.31 In our study, internal consistency, as indicated by the Cronbach {alpha}, was .94. Two-week test-retest reliability estimates ranged from 0.87 to 0.98.29 Validity has been assessed by examining relationships with the Functional Status Index (r =0.75) and the Sickness Impact Profile (r = 0.78).32 The time required to complete this tool was 3 to 8 minutes.

  Depressive Symptoms.   Depressive symptoms were measured by using the CES-D.33 This tool is a 20-item Likert scale used to assess depressed mood; feelings of guilt and worthlessness, helplessness, and hopelessness; loss of appetite; and sleep disturbances. The possible total scores range from 0 to 60; scores of 16 or higher suggest risk of clinical depression.33 Coefficient {alpha}’s ranged from 0.84 to 0.90.33 In our study, internal consistency, indicated by the Cronbach {alpha}, was .90. The time required to complete the instrument was 10 to 15 minutes.

  Communication Status.   Communication status was evaluated by using the Patient Communication Survey (M. B. Happ, M. K. Roesch, S. H. Kagan, unpublished data). The Patient Communication Survey is a 9-item Likert scale used to measure 3 dimensions of communication: communication satisfaction, ease of communication, and success of communication. The total score ranges from 0 to 36; lower scores indicate greater ability to communicate. In our study, internal consistency, as indicated by the Cronbach {alpha}, was .86. The time required to complete the instrument was 5 to 8 minutes. In addition, we collected information about the methods of communication used by the respondents.

  Cognitive Functioning.   Cognitive functioning was assessed by using the MMSE.34 The MMSE is an 11-question general-purpose cognitive screening examination used to assess orientation, registration, attention and calculation, recall, and language to quantify the severity of cognitive impairment in persons with dementia or dementialike conditions.35 A score less than 24 indicates cognitive impairment34; patients with scores less than 24 were not eligible for our study. In our study, internal consistency, as indicated by the Cronbach {alpha}, was .63. The reliability coefficient may be low because the MMSE is not a unidimensional measure of cognitive function, indicating items are not homogeneous. The time required to complete this instrument was 5 to 10 minutes.

  Demographic and Clinical Data.   Demographic data collected included age, sex, race, education, employment before hospitalization, occupation, marital status, and insurance type. Clinical data, obtained from the medical record, included primary diagnosis, comorbid conditions (Charlson Comorbidity Score36), ICU and hospital lengths of stay, indication for mechanical ventilation, date of intubation and tracheostomy, weaning status, and presence or absence of a tracheostomy tube.

Recruitment
Information on criteria for entry into the study was shared with nursing staff at the various institutions, who screened patients to determine the patients’ eligibility for and interest in participating in the study. One member of the research team (K.G.) contacted patients who were interested in participating, explained the study in detail, and obtained informed consent. All participants who provided informed consent completed the study, except for one patient who was excluded because of the MMSE score.

Data Management and Analysis
Categorical variables, such as sex, race, level of care, and marital status were analyzed by using the Pearson {chi}2 and Fisher exact tests when the expected cell count was less than 5. Continuous variables, such as scores on instruments used to measure quality of life (SF-36), functional ability (Health Assessment Questionnaire), depressive symptoms (CES-D), and communication (Patient Communication Survey), were examined by using a 2-group independent t test for normally distributed variables and the nonparametric Wilcoxon rank sum test for nonnormally distributed variables. Statistical analysis was performed by using SPSS software version 11.5 (SPSS Inc, Chicago, Ill). Alpha was set at P <.05 a priori.


   Results
Top
 Abstract
 Patients’ Preferences
 Methods
 Results
Discussion
 Limitations
 Conclusion
 References
 
Demographic Characteristics
A total of 17 men and 13 women a mean of 62.7 years old (SD 17.6 years, range 20–83) were enrolled in the study (Table 1Go). At the time of data collection, 17 patients were being treated with mechanical ventilation with a tracheostomy, including 5 who remained in the ICU. A total of 8 patients were in a long-term acute care facility and continued to participate in weaning trials; 4 were in a skilled nursing facility with no further weaning attempted because of a diagnosis of neuromuscular disease or chronic obstructive pulmonary disease. One subject had chronic obstructive pulmonary disease and sleep apnea and was being treated at home with nocturnal invasive ventilation.


View this table:
[in this window]
[in a new window]
  		Table 1 Demographics of the sample*

 
Preference for Mechanical Ventilation
One subject was undecided about a preference for mechanical ventilation after considerable contemplation and therefore was not included in this analysis. Of the 29 remaining subjects, most (75.9%) stated that they would have chosen mechanical ventilation (Table 2Go). Insurance status was significantly associated with preference for mechanical ventilation (P = .02). Patients not insured by Medicare were more likely than patients with this insurance to state that they would undergo mechanical ventilation. No other demographic variables, including age; sex; residence in an acute care, long-term acute care, or skilled nursing facility; marital status; education; employment; diagnosis; and current airway/ventilator support, were significantly associated with preference for mechanical ventilation.


View this table:
[in this window]
[in a new window]
  		Table 2 Association between patients’ demographic data and preference for mechanical ventilation*

 
Although the difference was not significant, patients who indicated a preference for mechanical ventilation were younger (mean age 60.8 years; SD 19.2) than were patients whose preference was no mechanical ventilation (mean age 67.0 years; SD 11.7). Patients admitted to a long-term acute care facility indicated a strong preference for mechanical ventilation (90%), as did patients admitted to a skilled nursing facility (80%). Subjects hospitalized in an acute care institution, including those in an ICU, were more evenly divided about whether they would have chosen mechanical ventilation (56% would have chosen this treatment). All patients who were single indicated that they would have chosen mechanical ventilation (100%). Patients who were married or were widowed or divorced were more varied in their choices; 75% of the married patients and 60% of the patients who were widowed or divorced would have chosen mechanical ventilation. Patients who had more than a high school education were also more likely than patients with a high school education or less to state that they would have chosen mechanical ventilation (90% vs 68%).


Most subjects stated that given their experience, they would have chosen mechanical ventilation.

 

The number of days to tracheostomy ranged from 0 to 27 (median 7) for patients who would have chosen mechanical ventilation (yes group) and from 6 to 20 (median 9) for the patients who would not have chosen mechanical ventilation (no group) (Table 3Go). Median ICU length of stay was comparable between patients who stated they would (yes, 31 days) and would not (no, 27 days) undergo mechanical ventilation, but the range of days each group spent in the ICU varied considerably (yes, 7–186 days; no, 14–83 days). The median hospital length of stay was also similar for both groups (yes, 31 days; no, 29 days). Again, the range of days each group was in the hospital varied considerably (yes, 7–205 days; no, 14–83 days). The number of days of mechanical ventilation varied extensively because 6 of the subjects in a skilled nursing facility had been receiving mechanical ventilation for several years.


View this table:
[in this window]
[in a new window]
  		Table 3 Association between patients’ clinical data and preferences for mechanical ventilation*

 
Scores on the CES-D differed marginally (P = .05) between the 2 groups of patients; median scores were higher for patients who would have not chosen mechanical ventilation (29) than for patients who would have chosen this treatment (14). Although many patients in the study were being treated for depression, most (56.7%) continued to have symptoms of depression as indicated by CES-D scores. Quality of life, functional ability, and communication status did not differ between patients who would have chosen mechanical ventilation and those who would not.


Patients who would not have chosen mechanical ventilation had higher depression scores than did those who would have chosen it.

 

Hypothetical Scenarios
Of the 22 patients who would have chosen mechanical ventilation, preference remained unchanged for the majority (n = 12 to n = 14) regardless of domain manipulation (Table 4Go). The remaining patients changed their preference after manipulation of at least 1 domain scale (n = 6 to n = 7) or were unable to identify an indifference point (n = 1 to n = 3). Preference was more likely to change if the domain involved the emotional and physical stress of the patient’s family and the family’s financial burden.


View this table:
[in this window]
[in a new window]
  		Table 4 Factors influencing changes in patients’ preferences for mechanical ventilation

 
For the 7 patients who indicated that they would not have chosen mechanical ventilation, preference tended to be most stable in regard to pain/discomfort in the ICU. A total of 1 to 3 subjects changed their preference after manipulation of the remaining domain scales. Preference was most likely to change in reference to current health status, the financial burden of the patient’s family, and the family’s emotional and physical stress.


   Discussion
Top
 Abstract
 Patients’ Preferences
 Methods
 Results
 Discussion
Limitations
 Conclusion
 References
 
The major findings of this study were as follows: Most survivors of prolonged mechanical ventilation and tracheostomy who had no cognitive impairments would choose to have mechanical ventilation again even though 17 of 29 remained dependent on mechanical ventilation at the time of the interview. Survivors experiencing fewer symptoms of depression had a stronger trend toward choosing mechanical ventilation than did survivors with more symptoms. Patients who did not have Medicare insurance were significantly more likely than patients who had this insurance to choose to have mechanical ventilation again.

Healthcare providers have an obligation to elicit patients’ preferences for life-sustaining treatments in order to individualize patients’ care, especially in settings such as the ICU, where some treatments, such as mechanical ventilation, can be viewed as artificial life support. Many patients admitted to an ICU have conditions associated with a high mortality rate, severe functional deficits, and an extended recovery. With input from patients and patients’ families, a healthcare team can choose a plan of care that emphasizes comfort and pain relief, rather than life-sustaining measures, if such care is what the patients prefer.

Advance directives are preferences about medical treatment a person would or would not like to receive for healthcare made a priori in the event that decisional capacity is lost.37 Use of these directives is a powerful method to document preferences.37,38 However, advance directives are usually made on the basis of sources other than experience. The use of mechanical ventilation is considered an extraordinary measure and, as such, is often included in a living will, along with treatments such as blood transfusions, tube feedings, and treatment with antibiotics. With few exceptions, most persons writing a living will most likely have never experienced mechanical ventilation, let alone prolonged mechanical ventilation and tracheostomy. Advance directives are more helpful when developed as a consequence of discussions about a patient’s preferences,37,38 especially when these discussions include hypothetical scenarios.39 The preference tool for mechanical ventilation that we tested can be another means to determine a patient’s preferences.


Preferences for mechanical ventilation were not influenced by the continued need for mechanical ventilation and/or tracheostomy.

 

Most studies10,12,13 of recovery after prolonged mechanical ventilation indicate that patients require an extended period to regain their previous level of physical functioning or never regain this ability. A common scenario involves transfer to an institution designed to provide a lower level of care, such as a long-term acute care, an acute rehabilitation, or a skilled nursing facility.4,5 This recovery period may be followed by care at home and outpatient services to help the patient return to optimal health and functioning.40 Some patients spend the remainder of their life in a facility where they require assistance with activities of daily living.12 When patients become dependent on others for care at home or in an institution, the cost to the patients’ family members in lost wages, stress, and anxiety is high.

Regardless of these issues, our findings suggest that most patients who have no cognitive impairments would elect to undergo mechanical ventilation if given the opportunity to make this choice. In our study, 75.9% of the patients indicated a preference for mechanical ventilation. Patients who indicated a preference for mechanical ventilation spent an extended period in the ICU (median 31 days) and receiving mechanical ventilation (median 98.5 days, range 8–2624 days), as did patients who did not indicate a preference for undergoing mechanical ventilation. In fact, for patients who would not elect mechanical ventilation, the length of stay in the ICU (median 27 days) was similar, and the duration of mechanical ventilation (median 70 days, range 10–1668 days) was slightly less. Further, we found no indication that preferences were influenced by continued need for mechanical ventilation and tracheostomy. Therefore, neither the duration of mechanical ventilation nor the length of stay in the ICU appeared to influence patients’ preferences.


Neither duration of mechanical ventilation nor length of time in the ICU influenced patients’ preferences.

 

We found a significant difference between groups for insurance status. Patients who had a preference for mechanical ventilation were less likely than patients who did not to have Medicare as their insurance provider. The explanation for this finding is not clear, because age did not differ significantly between patients who would choose to have mechanical ventilation and patients who would not. Possibly, this finding was due to the small sample size. Alternatively, perhaps patients who were insured by Medicare had less extensive benefits and consequently a greater financial burden than did patients who were not insured by Medicare, but we did not examine this possibility. Critical illness can impose a high caregiving and financial burden on patients’ families, and this burden, in turn, can influence patients’ preferences.40–42

Irrespective of insurance status, many families experience substantial financial loss after critical illness. In a study by Swoboda at al40 of surgical ICU patients whose ICU stay was 7 days or longer, more than two thirds of the patients reported marked changes in their lives and more than one third reported lost income or savings. In the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), after statistical controls were implemented for patients’ demographic data, illness severity, functional dependency, depression and anxiety, and pain, economic hardship on the patients’ family members as a result of illness remained associated with a preference for comfort care rather than life-extending care.42

In our study, patients who had fewer symptoms of depression were more likely than patients with more symptoms to indicate a preference for mechanical ventilation. An effect of depression on preferences has been reported in studies of patients with end-stage lung disease,25 seriously ill hospitalized patients,43 and older patients with depression.44–46 In the SUPPORT study, patients who initially preferred do-not-resuscitate status were more likely than patients who did not to change treatment preferences to wanting resuscitation when depression scores improved.43 These findings indicate that patients who say they do not want resuscitation should be assessed for depressive symptoms and that treatment of depression should be instituted if indicated.25

Our findings also support those of Mendelsohn et al,14 who used the same instrument as we did to assess preferences for mechanical ventilation at 12 months after discharge from the ICU in patients who had received mechanical ventilation for 48 hours or longer (median 8.6 days). Of 133 patients interviewed, 87% would have chosen mechanical ventilation; patients less than 65 years old were more likely than older patients to choose mechanical ventilation (90% vs 68%, respectively; P < .001) and healthier patients were more likely than sicker patients to choose this treatment (92.5% vs 77.4%, respectively; P = .01). Of interest, although the time at which interviews were conducted varied between our study and the study of Mendelsohn et al, the proportion of patients who elected to choose mechanical ventilation was similar. Unlike Mendelsohn et al, we found no differences in age or health between patients who did or did not have a preference for mechanical ventilation.

When change in preferences was examined in regard to the hypothetical scenarios, in the study by Mendelsohn et al,14 25% of the patients who would have initially chosen mechanical ventilation indicated that they would refuse this therapy if their families’ financial burden were beyond certain thresholds. A similar proportion would have refused mechanical ventilation if it were associated with greater pain or discomfort. In our study, patients who would initially choose mechanical ventilation would refuse this treatment if their current health were poor and if their family members’ stress were worse. Patients who would not choose mechanical ventilation would change their mind if their families’ financial burden and stress were reduced.

Several other investigators have examined patients’ preferences for ICU care and life-sustaining treatments. Danis et al47 interviewed 160 patients who were in a medical or respiratory ICU for at least 24 hours and the patients’ family members to determine preferences for ICU care and the importance of the life circumstances in determining those preferences. Most patients (74%) stated they would be "completely willing" to undergo intensive care for brief periods of life prolongation. Patients and their families would not choose intensive care if the patients had no hope of recovery, if the patient would be kept alive by machines, and if the patient were in a vegetative state or had neurological impairment. These findings are similar to comments made by the patients in our study, who said their preferences were influenced by survival, cognitive ability, and the need for tube feedings.

Elpern et al48 interviewed 84 patients after an ICU stay of 48 hours or longer to determine the patients’ preferences. Although patients identified sources of stress associated with their ICU stay, most (76%) rated their ICU experience positively. Preferences for future intensive care varied with perceived outcome and were strongest for health restoration and weakest for persistent vegetative states. Although ICU length of stay in this study48 was relatively short (4.5 days), the mean score (13.3) on the Acute Physiology and Chronic Health Evaluation II indicated low acuity, and all patients were breathing spontaneously, the patients’ preferences were similar to those of the patients in our study.

In the largest study of patients’ preferences, Teno et al6 examined decision making and outcomes after an ICU stay of 14 days or longer in patients who were enrolled in the SUPPORT study. Each patient or a family decision-maker for the patient was interviewed during the second week of hospitalization while most patients (91%) were still in the ICU. A total of 45% of the patients/families preferred a life-extending approach, whereas 36% expressed a preference for comfort care, even if such care shortened life. Teno et al did not distinguish between the preferences provided by patients and those provided by patients’ family members. However, because most of the patients were hospitalized in the ICU, most likely their family members would have been the primary information providers. Accordingly, it is not clear if the preferences were those of the patients or of the patients’ proxies. In our study, patients, rather than proxies, provided all study data, and patients who were interviewed in the ICU consistently stated that they would undergo mechanical ventilation again if needed.

Previous studies of ICU patients have indicated significant relationships between the inability to speak and feelings of panic and insecurity, sleep disturbances, and stress level.18 In our study, the tool used to assess communication status was designed to measure satisfaction, ease, and success of communication. Scores were almost identical regardless of preference for undergoing mechanical ventilation again. None of the patients had any cognitive impairment at the time of data collection, and all were able to communicate with the interviewer in a variety of ways, including speaking (when an artificial airway or mechanical ventilation was not required), mouthing words, and writing. Most patients expressed frustration with their ability to communicate as desired, but this frustration did not appear to influence their preferences. Possibly, differences, if present, could not be detected with the instrument we used. Alternately, the patients may have adjusted their expectations because of the extended duration of mechanical ventilation.


   Limitations
Top
 Abstract
 Patients’ Preferences
 Methods
 Results
 Discussion
 Limitations
Conclusion
 References
 
This study was subject to several limitations. First, the sample size was relatively small, a characteristic that limits the strength and generalizability of the findings. Further, because of the small sample size, differences between conditions could exist that were not detected because the number of patients with each condition was too low. However, our findings are consistent with those of larger studies in which different and similar methods were used.

Second, entry criteria required that patients be treated with mechanical ventilation for 7 days or longer and have a tracheostomy. However, no restriction was placed on the duration of mechanical ventilation, which varied considerably for the patients in the study. Possibly, duration of mechanical ventilation influenced patients’ preferences. However, median days on mechanical ventilation were higher for patients who stated they would have mechanical ventilation again than for patients who would not have this treatment again.

Third, to be eligible to participate in this study, patients had to have survived for at least 2 months after mechanical ventilation was initiated and have no cognitive impairment as indicated by their MMSE score. Other patients who did not survive for this length of time or who had cognitive impairments might have different preferences. However, a goal of the study was to elicit preferences from patients themselves, rather than from patients’ proxies, a goal that required that patients be able to understand questionnaire items and share their responses. Finally, we did not analyze scores on the Acute Physiology and Chronic Health Evaluation because few of the patients had the scores recorded and most participants were white.


   Conclusion
Top
 Abstract
 Patients’ Preferences
 Methods
 Results
 Discussion
 Limitations
 Conclusion
References
 
In summary, most patients with no cognitive impairments who experienced prolonged mechanical ventilation and tracheostomy would be willing to have mechanical ventilation again. As one patient so eloquently stated, "Of course, I would go on the breathing machine again—I’m alive." Preference for mechanical ventilation increased if patients perceived that this treatment would promote a return to usual health, and a reduction occurred in the number of patients who had a preference for mechanical ventilation if they thought the treatment would result in an increase in the stress and financial burden of their families. Patients who were insured by Medicare were less likely than patients without this insurance to choose mechanical ventilation, and patients with more depressive symptoms were less likely than patients with fewer depressive symptoms to indicate a preference for mechanical ventilation. Although the effects of depression on preference for life support are understandable, the effect of Medicare was not clear and should be examined in future studies.


   ACKNOWLEDGMENTS
 
This research was done at University of Pittsburgh Medical Center. It was supported by an award from the Leslie A. Hoffman Endowed Acute Care Nursing Research Fund, University of Pittsburgh School of Nursing. We acknowledge the patients who participated in the research, whose strength and hope were inspiring. We also thank the nurses, respiratory therapists, and administrators of the facilities who cared for these patients and the willingness of the facilities to allow the research.

To purchase electronic or print reprints, contact The InnoVision Group, 101 Columbia, Aliso Viejo, CA 92656. Phone, (800) 809-2273 or (949) 362-2050 (ext 532); fax, (949) 362-2049; e-mail, reprints{at}aacn.org.

Commentary by Mary Jo Grap (see shaded boxes).


   REFERENCES
Top
 Abstract
 Patients’ Preferences
 Methods
 Results
 Discussion
 Limitations
 Conclusion
 References
 

  1. Welton JM, Meyer AA, Mandelkehr L, Fakhry SM, Jarr S. Outcomes of and resource consumption by high-cost patients in the intensive care unit. Am J Crit Care. 2002;11:467–473.[Abstract/Free Full Text]
  2. Rudy EB, Daly BJ, Douglas S, Montenegro HD, Song R, Dyer MA. Patient outcomes for the chronically critically ill: special care unit versus intensive care unit. Nurs Res. 1995;44:324–331.[Medline]
  3. Douglas S, Daly B, Brennan P, Gordon N, Uthis P. Hospital readmission among long-term ventilator patients. Chest. 2001;120:1278–1286.[Abstract/Free Full Text]
  4. D’Amico J, Donnelly H, Mutlu G, Feinglass J, Jovanovic B, Ndukwu I. Risk assessment for inpatient survival in the long-term acute care setting. Chest. 2003;124:1039–1045.[Abstract/Free Full Text]
  5. Pilcher D, Bailey M, Treacher D, Hamid S, Williams A, Davidson A. Outcomes, cost and long term survival of patients referred to a regional weaning service. Thorax. 2005;60:187–192.[Abstract/Free Full Text]
  6. Teno JM, Fisher E, Hamel MB, et al. Decision-making and outcomes of prolonged ICU stays in seriously ill patients. J Am Geriatr Soc. 2000;48(5 suppl):S70–S74.[Medline]
  7. Quality of Life After Mechanical Ventilation in the Aged Study Investigators. 2-Month mortality and functional status of critically ill adult patients receiving prolonged mechanical ventilation. Chest. 2002;121:549–558.[Abstract/Free Full Text]
  8. Seneff MG, Wagner D, Thompson D, Honeycutt C, Silver MR. The impact of long-term acute-care facilities on the outcome and cost of care for patients undergoing prolonged mechanical ventilation. Crit Care Med. 2000;28:342–350.[Medline]
  9. Douglas S, Daly B, Gordon N, Brennan P. Survival and quality of life: short-term versus long-term ventilator patients. Crit Care Med. 2002;30:2655–2662.[Medline]
  10. Chelluri L, Im KA, Belle SH, et al. Long-term mortality and quality of life after prolonged mechanical ventilation. Crit Care Med. 2004;32:61–69.[Medline]
  11. Niskanen M, Ruokonen E, Takala J, Rissanen P, Kari A. Quality of life after prolonged intensive care. Crit Care Med. 1999;27:1132–1139.[Medline]
  12. Nelson J, Meier J, Litke A, Natale D, Siegel R, Morrison R. The symptom burden of chronic critical illness. Crit Care Med. 2004;32:1527–1534.[Medline]
  13. Chatila W, Kreimer D, Criner G. Quality of life in survivors of prolonged mechanical ventilatory support. Crit Care Med. 2001;29:737–742.[Medline]
  14. Mendelsohn A, Belle S, Fischhoff B, Wisniewski S, Degenholtz H, Chelluri L. How patients feel about prolonged mechanical ventilation 1 yr later. Crit Care Med. 2002;30:1439–1445.[Medline]
  15. Tilden V, Tolle S, Garland M, Nelson C. Decisions about life-sustaining treatment: impact of physicians’ behaviors on the family. Arch Intern Med. 1995;155:633–638.[Abstract]
  16. Hofmann JC, Wenger NS, Davis RB, et al. Patient preferences for communication with physicians about end-of-life decisions. SUPPORT Investigators. Study to Understand Prognoses and Preference for Outcomes and Risks of Treatment. Ann Intern Med. 1997;127:1–12.[Abstract/Free Full Text]
  17. McKinley E, Garrett J, Evans A, Danis M. Differences in end-of-life decision making among black and white ambulatory cancer patients. J Gen Intern Med. 1996;11:651–656.[Medline]
  18. Happ M. Communicating with mechanically ventilated patients: state of the science. AACN Clin Issues. 2001;12:247–258.[Medline]
  19. Stauffer J. Complications of endotracheal intubation and tracheostomy. Respir Care. 1999;44:828–843.
  20. Heffner J. Timing of tracheotomy in mechanically ventilated patients. Am Rev Respir Dis. 1993;147:768–771.[Medline]
  21. Orringer M. The effects of tracheostomy tube placement on communication and swallowing. Respir Care. 1999;44:845–855.
  22. Lebowitz B. Depression and treatment of depression in late life: an overview of the NIH consensus statement. Am J Geriatr Psychiatry. 1996;4(suppl 1):53–56.
  23. Kessler R, Berglund P, Demler O, et al. The epidemiology of major depressive disorder: results form the National Comorbidity Survey Replication (NCS-R). JAMA. 2003;289:3095–3105.[Abstract/Free Full Text]
  24. Ciechanowski P, Wagner E, Schmaling K, et al. Community-integrated home-based depression treatment in older adults: a randomized controlled trial. JAMA. 2004;291:1569–1577.[Abstract/Free Full Text]
  25. Stapleton R, Nielsen E, Engelberg R, Patrick D, Curtis J. Association of depression and life-sustaining treatment preferences in patients with COPD. Chest. 2005;127:328–334.[Abstract/Free Full Text]
  26. Ware J, Kosinski M, Gandek B. SF-36 Health Survey: Manual and Interpretation Guide. Lincoln, RI: Quality Metric Inc; 2000.
  27. Ware J, Kosinski M, Dewey J. How to Score Version 2 of the SF-36 Health Survey. Lincoln, RI: Quality Metric Incorporated; 2000.
  28. Eddleston J, White P, Guthrie E. Survival, morbidity, and quality of life after discharge from intensive care. Crit Care Med. 2000;28:2293–2299.[Medline]
  29. Fries JF, Spitz PW, Young DY. The dimensions of health outcomes: the health assessment questionnaire, disability and pain scales. J Rheumatol. 1982;9:789–793.[Medline]
  30. Milligan SE, Hom DL, Ballou SP, Persse LJ, Svilar GM, Coulton CJ. An assessment of the Health Assessment Questionnaire functional ability index among women with system lupus erythematosus. J Rheumatol. 1993;20:972–976.[Medline]
  31. Pincus T, Summey JA, Soraci SA Jr, Wallston KA, Hummon NP. Assessment of patient satisfaction in activities of daily living using a modified Stanford Health Assessment Questionnaire. Arthritis Rheum. 1983;26:1346–1353.[Medline]
  32. Liang M, Larson M, Cullen K, Schwartz J. Comparative measurement efficiency and sensitivity of five health status instruments for arthritis research. Arthritis Rheum. 1985;28:542–547.[Medline]
  33. Radloff L. The CES-D scale: a self-report depression scale for research in the general population. Appl Psychol Meas. 1977;1:385–401.
  34. Foreman M. Reliability and validity of mental status questionnaires in elderly hospitalized patients. Nurs Res. 1987;36:216–219.[Medline]
  35. Folstein MF, Folstein SE, McHugh PR. "Mini-mental state": a practical method for grading cognitive state of patients for the clinician. J Psychiatr Res. 1975;12:189–198.[Medline]
  36. Charlson ME, Pompei P, Ales KL, MacKenzie CR. A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. J Chronic Dis. 1987;40:373–383.[Medline]
  37. Ahronheim J, Moreno J, Zuckerman C. Ethics in Clinical Practice. Gaithersburg, Md: Aspen Publishers Inc; 2000.
  38. Kass-Bartelmes B, Hughes R. Advance care planning: preferences for care at the end of life. J Pain Palliat Care Pharmacother. 2004;18:87–109.[Medline]
  39. Schwartz CE, Merriman MP, Reed GW, Hammes BJ. Measuring patient treatment preferences in end-of-life care research: applications for advance care planning interventions and response shift research. J Palliat Med. 2004;7:233–245.[Medline]
  40. Swoboda SM, Lipsett PA. Impact of a prolonged surgical critical illness on patients’ families. Am J Crit Care. 2002;11:459–466.[Abstract/Free Full Text]
  41. Covinsky K, Goldman L, Cook E, et al. The impact of serious illness on patients’ families. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. JAMA. 1994;272:1839–1844.[Abstract]
  42. Covinsky KE, Landefeld CS, Teno J, et al. Is economic hardship on the families of the seriously ill associated with patient and surrogate care preferences? SUPPORT Investigators. Arch Intern Med. 1996;156:1737–1741.[Abstract]
  43. Rosenfeld KE, Wenger NS, Phillips RS, et al. Factors associated with change in resuscitation preference of seriously ill patients. The SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Arch Intern Med. 1996;156:1558–1564.[Abstract]
  44. Blank K, Robison J, Doherty E, Prigerson H, Duffy J, Schwartz HI. Life-sustaining treatment and assisted death choices in depressed older patients. J Am Geriatr Soc. 2001;49:153–161.[Medline]
  45. Ganzini L, Lee MA, Heintz RT, Bloom JD, Fenn DS. The effect of depression treatment on elderly patients’ preferences for life-sustaining medical therapy. Am J Psychiatry. 1994;151:1631–1636.[Abstract/Free Full Text]
  46. Eggar R, Spencer A, Anderson D, Hiller L. Views of elderly patients on cardiopulmonary resuscitation before and after treatment for depression. Int J Geriatr Psychiatry. 2002;17:170–174.[Medline]
  47. Danis M, Patrick D, Southerland L, Green M. Patients’ and families’ preferences for medical intensive care. JAMA. 1988;260:797–802.[Abstract]
  48. Elpern E, Patterson P, Gloskey D, Boone R. Patients’ preferences for intensive care. Crit Care Med. 1992;20:43–47.[Medline]



This article has been cited by other articles:


Home page
 Arch Intern MedHome page
J. E. Nelson, A. F. Mercado, S. L. Camhi, N. Tandon, S. Wallenstein, G. I. August, and R. S. Morrison
Communication About Chronic Critical Illness
Arch Intern Med, December 10, 2007; 167(22): 2509 - 2515.
[Abstract] [Full Text] [PDF]

This Article
Right arrow Abstract Freely available
Right arrow Full Text (PDF)
Right arrow Respond to This Article
Right arrow Alert me when this article is cited
Right arrow Alert me when eLetters are posted
Right arrow Alert me if a correction is posted
Services
Right arrow Email this article to a friend
Right arrow Similar articles in this journal
Right arrow Similar articles in PubMed
Right arrow Alert me to new issues of the journal
Right arrow Download to citation manager
Right arrow reprints & permissions
Citing Articles
Right arrow Citing Articles via HighWire
Right arrow Citing Articles via Google Scholar
Google Scholar
Right arrow Articles by Guentner, K.
Right arrow Articles by Chelluri, L.
Right arrow Search for Related Content
PubMed
Right arrow PubMed Citation
Right arrow Articles by Guentner, K.
Right arrow Articles by Chelluri, L.

HOME HELP FEEDBACK SUBSCRIPTIONS ARCHIVE SEARCH TABLE OF CONTENTS