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(Chest. 1999;116:792-800.)
© 1999 American College of Chest Physicians

Intubation and Mechanical Ventilation for COPD*

Development of an Instrument To Elicit Patient Preferences

Robert E. Dales, MD, MSc; Annette O'Connor, RN, PhD; Paul Hebert, MD, MSc, FCCP; Karen Sullivan; Douglas McKim, MD and Hilary Llewellyn-Thomas, RN, PhD

* From the Departments of Medicine (Drs. Dales, Hebert, and McKim, and Ms. Sullivan) and Nursing (Dr. O'Connor), University of Ottawa, Ottawa, Canada; and the Institute for Clinical Evaluative Sciences and The Clinical Epidemiology Unit (Dr. Llewellyn-Thomas), Sunnybrook Health Science Centre, Toronto, Canada.

Correspondence to: Robert E. Dales, MD, MSc, Ottawa General Hospital, LM17, 501 Smyth Rd, Ottawa, Ontario, K1H 8L6, Canada


   Abstract
TOP
 Abstract
Introduction
 Materials and Methods
 Results
 Discussion
 Appendix 1
 References
 
Background: Whether to simply provide palliative care or to intubate and use mechanical ventilation (MV) in a patient with severe COPD in acute respiratory failure is a difficult decision. The outcome of MV cannot be accurately predicted. Some patients cannot be weaned from the ventilator; those who are weaned often return to chronic severe respiratory disability. It is important that patients participate in this decision, but assistance is required. To address these issues, we developed and pilot-tested an aid to assist patients with MV decisions.

Methods: A scenario-based decision aid was developed consisting of an audiocassette and a booklet describing intubation and MV and its possible outcomes. We used a probability tradeoff technique to elicit the patients' preferences and a decisional conflict scale to evaluate satisfaction.

Results: With the assistance of the decision aid, all patients (10 men and 10 women) reached a decision. Two men and all 10 women declined MV. Mean decisional conflict was low (2.2 of a possible 5; SD, 0.9). At 1 year, only two patients (11%) had changed their decision. The agreement between physicians and patients was 65%; between next-of-kin and patients, there was uniform disagreement.

Conclusion: With the decision aid, stable decisions were made with satisfaction and confidence. Proxy decisions were incongruent, especially when made by family members. The strong gender effect should be further investigated. We suggest that the COPD decision aid be further tested in a community clinical setting.

Key Words: advanced directives • COPD • decision making • mechanical ventilation


   Introduction
TOP
 Abstract
 Introduction
Materials and Methods
 Results
 Discussion
 Appendix 1
 References
 
COPD afflicts > 10 million North Americans, and it is the fifth leading cause of death1 2 3 4 and a major cause of disability. Progressive breathlessness develops over many years and may eventually cause severe social, emotional, and physical disability.4 5 An exacerbation of COPD may result in death from respiratory failure unless ventilatory support is provided.5 6 7 With mechanical ventilation (MV), at best, the patient experiences a few days of discomfort, is able to be removed from the ventilator, returns to the preexisting level of disability,8 and dies on average within 1 year.9 10 Various studies to date report mortality ranges between 20 and 73%.9 11 12 13 At worst, the patient receiving MV cannot regain sufficient respiratory function to be extubated, and may die eventually from complications or remain connected to a ventilator indefinitely.

Often, there is no clear advantage of MV over palliative care.14 The outcome of MV for individual patients cannot be accurately predicted prior to MV,15 16 and the level of preexisting disability may be quite high, even when the patient is free from exacerbations. Therefore, the attitudes of the patient toward this "close call" situation are particularly germane; furthermore, patients often wish to play an active role in decision making.11 16 17 However, the decision is frequently made by the physician alone, or in discussions with family members in the emergency department because the patient is in severe respiratory failure and unable to communicate.18 19 20 21 Unfortunately, evidence suggests that neither physicians nor family members accurately predict what patients would choose for themselves.22 23 In a previous study,24 we demonstrated that physicians not only have difficulty initiating end-of-life discussions, but also tend to modify information in order to influence the ultimate choices made by patients. Therefore, prior to initiating MV, it is especially important not only to determine patients' values, expectations, and treatment preferences, and to assist with the decision to initiate or forgo this intervention, but also to do this in a manner that does not exert undue influence on this process.

To address these issues, we developed and tested a structured decision aid for patients with severe COPD. The aid has two components. The first component (the MV information scenario) describes the process, risks, and benefits of intubation and MV. The second component (the probability trade-off) attempts to gauge the strength of the patient's preference for MV, and serve as a device for making his/her values explicit.

The performance of this two-component decision aid was assessed from three different perspectives. First, to determine whether it influenced decisions, patients' MV preferences before and after administration of the aid were compared. Secondly, to evaluate whether it fosters successful decision making, the patients' satisfaction with their decision and its stability over time (1 year) were examined. Finally, to explore whether the decision aid is able to reveal discrepancies between patients and significant others, patient preferences were compared with those of the patients' surrogate decision-makers.


   Materials and Methods
TOP
 Abstract
 Introduction
 Materials and Methods
Results
 Discussion
 Appendix 1
 References
 
Development of the MV Information Scenario
Fifteen respirologists from the Ottawa area were interviewed to determine the type of information exchanged between physicians and their patients about the prognosis of COPD, the ventilation process, and possible outcomes of MV.24 The interviews were tape-recorded and transcribed, and content analysis of the qualitative data was performed25 26 to identify themes that were then incorporated into the decision aid. The information was reviewed for completeness and accuracy by members of the critical care team at the Ottawa General Hospital, including a social worker, a chaplain, nursing staff, and a respiratory therapist. The resulting information scenario described the social, emotional, and physical aspects of COPD; its evolution and potential complications; the intubation and MV process; and the potential outcomes of being ventilated and not being ventilated (see Appendix). The scenario was incorporated into a booklet designed to be read while listening to a recorded voice presenting the same information.

Finally, the decision aid scenario was reviewed by three intensive care nurses, two secondary (high) school teachers, six healthy elderly persons, and one patient who received MV previously. A 15-item questionnaire requested feedback about the completeness and appropriateness of the information presented. Responses were scaled using a 5-point Likert rating (ie, 1 = very well described to 5 = not at all well described). Mean summative scores were 1.5 for questions addressing understandability, and 2.2 for appropriateness. The decision aid was modified until consensus was reached that the information was complete and easy to understand.

Study Population
A convenience sample of patients was recruited from the pulmonary function laboratory, as well as ambulatory respiratory and general medicine clinics of the Ottawa General Hospital, affiliated with the University of Ottawa, Canada. To be eligible for the study, patients had to have good mental status, be >= 40 years of age, and have a physician's diagnosis of COPD and an FEV1 of < 45% of predicted measured within 12 months of the first interview. Approval for the study was granted by the Research Ethics Committee of the hospital. Study consent was obtained individually from the patients and their families and physicians.

Data Collection
Patient Interviews: Study patients were interviewed on two occasions, alone and in private. At the first interview, baseline data were collected, the patients responded to the two-component MV decision aid, and, finally, they indicated their level of decisional conflict regarding placement on a ventilator. The second interview took place a year later, to assess the stability of their preferences regarding MV.

Baseline Assessments: In order to assess possible covariates, the Short Portable Mental Status Questionnaire27 was used to assess cognitive ability; the British Medical Research Council Modified Dyspnea Index28 (MRC Dyspnea Index) indicated the degree of dyspnea on a scale from 0 (no breathlessness) to 4 (extreme breathlessness); and the SF-3629 was used as a generic measure of health-related quality of life.

Preferences Before and After the Decision Aid: Prior to receiving any information, patients were asked how they felt about being placed on a ventilator in the event that they could no longer breathe on their own. The MV information scenario described above was then presented to the participant, followed by a probability trade-off technique designed to estimate each patient's strength of preference for ventilation, relative to not being intubated. Patients were asked which of the following two options they would choose, if they were actually experiencing this decision situation:

A. To be intubated and receive MV: "Medication will be used to reduce breathlessness and discomfort, and there will be a 50% chance of coming off of the machine and living for one (1) year in a state of health that is no better or worse than before the attack which brought them to hospital," or

B. Not to be intubated: "Medication will be used to reduce breathlessness and discomfort, and there will be a 100% chance of natural death.

If the patient indicated that he or she would choose option A (MV), the probability of successful weaning was hypothetically decreased by decrements of 10% until the patient's choice changed to option B (no MV). Conversely, for those patients initially choosing option B (no MV), the probability of successful weaning in option A (MV) was hypothetically increased in increments of 10% until they switched to accepting option A (MV). Later, a strength-of-preference score for ventilation could be derived by calculating the complement of the patient's switch point. For example, a patient who initially chose option A (MV) who switched to option B (no MV) only when the probability of successful weaning was lowered from 50 to 10% would be considered to have a relatively strong MV preference, which would be reflected in the complementary score of 90%. Another patient who initially chose no MV and switched to MV only when the probability of successful weaning was raised to 80% would be considered to have a relatively weak preference for MV, which would be reflected in the complementary score of 20%.

Assessing Decisional Conflict: The patient's overall level of conflict about making this hypothetical decision-aided choice was measured using the Decisional Conflict Scale (DCS), which assesses the sense of certainty in making the choice, the sense of being informed about the choice, clarity about values, social support for decision making, and perceived effective decision making.30 The DCS is a 16-item instrument with 5-point Likert scale responses ranging from strongly agree to strongly disagree. Internal consistency and test-retest coefficients exceed 0.80, and the scale discriminates between those who make and those who delay decisions.30 Responses to the DCS items were scored so that 1 = low and 5 = high conflict, and then scores were added and averaged.

Decision Stability: To test the stability of the hypothetical decision-aided choice, the patient was contacted 1 year later by telephone to report his or her current choice regarding MV. At this time, in order to obtain patient feedback regarding the perceived value of the decision aid and the decision-making process, patients were asked seven questions about the decision aid and their subsequent hypothetical decision.

Surrogate Decisions by Family Members and Physicians: The patient's physician was interviewed in person or by telephone. Blinded to the patient's decision, the physician was asked whether or not he or she would recommend ventilation to prevent death from respiratory failure. The information scenario was administered to the family member most likely to make a decision in the actual event of a life-threatening exacerbation of the patient's COPD. The family member was then asked which MV choice he or she would make for the patient. Respondents were not aware of the recorded preference of the patient.

Statistical Analysis
Descriptive statistical analyses were performed on all patient characteristics as well as components of the DCS, SF-36, and MRC Dyspnea Index. The characteristics of patients who agreed to MV were compared with those of patients who did not want MV using the following tests: (1) independent t tests for continuous variables such as age, spirometric measures, the Mini Mental Status scores, the SF-36 (and subscales), and the DCS (overall mean values in the subscales); and (2) Fisher's Exact Test for categorical variables, including gender and previous history of MV. {kappa} statistics were used to estimate agreement beyond chance between patients' choices before and after the decision aid and between decisions made by surrogates and patients. All continuous outcome data are reported as mean ± SD. Absolute p values are given without adjustments for multiple comparisons.


   Results
TOP
 Abstract
 Introduction
 Materials and Methods
 Results
Discussion
 Appendix 1
 References
 
Twenty of 21 consecutive patients who were approached agreed to participate in the study; only 1 patient refused to complete the entire interview process. One patient did not want to commit to the time and energy required for the interview. All the patients were cared for by six specialists, with no one physician accountable for > 30% of these patients. The average length of the interviews was 79 min (range, 50 to 138 min). The patients were equally divided by gender (10 men, 10 women), had an average age of 66 years (range, 42 to 84 years), and had severe airflow obstruction (Table 1 ). Five patients (25%) had received MV previously.


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  		Table 1. Characteristics of the Study Subjects (n = 20)*

 
Decisions Before and After Decision Aid
Prior to administering the decision aid, 10 patients (50%) indicated that they did not want MV, 7 patients (35%) chose MV, and 3 patients (15%) were uncertain (Table 2 ). Following the administration of the decision aid, there were some shifts in these choices. Of the 10 patients who declined MV at baseline, 1 patient chose MV; of the 7 patients who chose MV at baseline, 2 patients declined MV; and of the 3 patients who were uncertain at baseline, 2 patients chose MV and 1 patient declined MV (see Table 2 ). Altogether, after working with the decision aid, 12 patients (60%) declined MV and 8 patients (40%) chose MV. For each of these latter two subgroups, the trade-off task yielded mean strength-of-preference scores for MV of 0.10 and 0.86, respectively (p = 0.0001 by t test; p = 0.0002 by Wilcoxon rank sum test).


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  		Table 2. Patients' Preferences for Intubation and MV Before and After Administration of the COPD Decision Aid*

 
Possible Covariates
Of the measured baseline characteristics, only the patient's gender was associated with the MV choice at conventional levels of statistical significance (p < 0.05). All of the women (10/10) but only two of the men (2/10) declined MV (p = 0.0004). Of the five patients who had received MV previously, two patients declined to receive MV again. The patients who chose MV tended to report higher scores (ie, better quality of life) on all of the SF-36 dimensions (functional status, well-being, and overall health evaluation), but these differences did not reach statistical significance at p < 0.05.

Decisional Conflict
In Table 3 , we present the overall means and SDs for the total DCS and for each of its subscales, both for the full study group and for the subgroups who indicated they would accept/decline MV. As a full group, these patients reported relatively low total DCS scores (overall mean, 2.2; SD, 0.9). For each DCS item, we also dichotomized patients as either "low conflict" (scores of 1 or 2) or "other" (scores of 3, 4, or 5); accordingly, Table 3 presents the percentages of patients reporting "low conflict" scores for each item.


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  		Table 3. Decisional Conflict Total and Subscale Scores: Means, SDs, and Percentages of Patients Indicating Low Decisional Conflict (Score of 1 or 2), for Full Study Group and by MV "Decision" Subgroups*

 
For the full study group, reported conflict tended to be highest for the subscale regarding "certainty of choice" (mean score, 2.7; SD, 1.3), consistent with the observation that as few as 50% of the patients reported low scores on individual items. (However, apparently those declining intubation found it to be an easier choice and were more certain about what to do.) For the full study group, reported conflict tended to be lowest for the subscales referring to "informed about the choice" (mean score, 1.9; SD, 0.6) and "effective decision making" subscales (mean score, 1.9; SD, 0.9). This is fairly consistent with the observation that, for the full group as well as the accept/decline subgroups, majorities ranging from 75 to 100% reported low decisional conflict scores on the items in these subscales.

Finally, within the "social support" subscale, there was a 25% difference between the two groups but it did not reach conventional levels of statistical significance at p < 0.05.

Decisional Stability
After 1 year, 18 of the 20 participants were able to complete the follow-up interview. Only 2 of 18 patients had changed their decision; 89% of patients indicated that they would choose the same MV option initially elicited by the decision aid (Table 4 ). The {kappa} for agreement was high at 0.89 (SE, 0.2; p = 0.0008).


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  		Table 4. Patient's "Decision" at 1 Year Compared With Initial Preference as Elicited by MV Decision Aid (n = 18)*

 
Agreement Between Patients and Surrogates
With the exclusion of the three cases in which the physician was uncertain, 11 of the 17 physicians (65%) agreed with their patients (Table 5 ). Physicians were as likely as patients to prefer MV, with 11 of 17 patients and 9 of 17 physicians preferring this option. Only three patients (16%) indicated that they had spoken previously with their physician about their wishes. In an attempt to examine the ability of the decision aid to detect potential mismatches between what patients say they would want and what their significant others assume they would want, a subset of family members of seven participating patients was interviewed. (Scheduling and availability limitations did not allow for a more inclusive sample.) When asked which choice they would make for the patient in the event of a life-threatening exacerbation, all seven family members' choices were directly in conflict with those of the patients themselves. The {kappa} for agreement was low at 0.28 (SE, 0.23).


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  		Table 5. Agreement Between the Patients and Their Physicians (n = 17)

 

   Discussion
TOP
 Abstract
 Introduction
 Materials and Methods
 Results
 Discussion
Appendix 1
 References
 
In summary, we developed and applied an information scenario and a probability trade-off technique. Together, these elements constituted a proposed decision aid designed to provide information, describe choices, and allow patients with severe COPD to express the strength of their convictions concerning MV. We attempted to evaluate this decision aid from three different perspectives. Below, we first discuss this study in terms of its original motivation, and then we examine the extent to which our three evaluative approaches indicate whether this is a worthwhile decision aid for future applications.

The Original Motivation
There is currently a widespread interest in the development of patients' decision aids. The interest is fueled by rising health consumerism, more complex therapeutic options, and increasing concern about the ethical and economic consequences of uninformed or inappropriate decision making. Such pressures are particularly problematic in situations like MV for COPD, in which there is much at stake for the patient, but the "best" decision is uncertain. The objective is to promote choices that reflect an understanding not only of relevant factual information, but also of the individual's preferences. Accordingly, the factual information is presented in a manner designed to engage the patient in actively formulating and articulating personal preferences.

Information Salience
Living wills have been criticized for being vague about the specific treatments and the circumstances in which treatment is being considered,31 both of which may influence preferences. For example, Uhlmann et al32 reported that patients were more likely to want resuscitation if they were severely disabled by COPD than if disabled by a stroke. Our decision aid was disease- and circumstance-specific, allowing the presentation of greater detail about risks and benefits.

Probability Trade-off Technique
This approach has been used to measure the relative strength of preference scores for a variety of treatments, including chemotherapy,33 34 radiation therapy,35 36 combined chemotherapy and radiation therapy,37 38 the "do not resuscitate" order,39 and medication for hypercholesterolemia40 and hypertension.41 In each of these applications, the technique was able to identify patient subgroups with unique preference profiles. The present application reported here is one of the first to assess the feasibility of using the technique as a values clarification device that could be incorporated into a formal patient decision aid.

Evaluating the Decision Aid
A comprehensive assessment of the effectiveness of our MV information scenario and probability trade-off technique would involve testing its ability to produce the several benefits claimed for other patient decision aids. These include improving comprehension,42 43 44 reducing psychological stress,45 46 47 48 49 increasing self-efficacy,49 and modifying inappropriate expectations.45 50 Improved comprehension and greater self-efficacy may in turn result in increased long-term commitment to treatment decisions. Providing realistic expectations of treatments may reduce subsequent distress from side effects of treatment.45 50 Reduced psychological distress, in the form of lower levels of decisional conflict, may reduce delays in making a decision and consequently, in some time-dependent clinical contexts, lead to more effective treatment.51 52 53 54 55 56 However, such a comprehensive assessment was beyond the scope of this exploratory project. Here, we undertook only to compare patients' reported preferences before and after administration of the aid, to measure the patients' satisfaction with their decisions, to examine the long-term stability of the decisions, and to compare patients' MV preferences with those reported by surrogate decision makers.

Stated Preferences Before and After Administration of the Decision Aid
Of the full study group of 20 patients, there were 6 patients for whom the decision aid may have helped to clarify their values to the point that they changed their decision (1 patient shifted to choosing MV; 2 patients shifted to not choosing MV; and 3 patients shifted from being uncertain to making a definite choice for or against MV). Let us assume that the MV "decisions" made just after viewing the aid closely approximate the respondents' actual preferences. (The validity of this assumption is supported by two observations; the MV/no MV preferential subgroups reported a statistically different mean strength of preference scores on the tradeoff task at p = 0.0002, and only a small number of patients changed their "decision" a year later.) Let us also assume that this proportion (30%) is representative of the behavioral responses that would be observed in the larger population of COPD patients. Taken together, these assumptions imply that a notably large number of COPD patients are at risk for making MV choices that are not actually consistent with their values, and that a decision aid like the one used here could help offset that risk. Given the prevalence of COPD and the ethical and economic consequences of treatment/values mismatches, this is an important implication that points to the need to further develop and test such an aid for this clinical context.

The Influence of Gender on the Preference for MV
In the present study, there was a strong association between female gender and declining intubation. This has not been previously reported for MV, but parallel observations have been made in ischemic heart disease treatment, in that women are approximately half as likely as men to undergo coronary artery catheterization, angioplasty, and bypass surgery.57 58 59 It is possible that these differences in utilization rates may partially be due to hidden systematic biases in medical decision making, referral patterns, etc. However, it is also possible that these variations may arise from wide attitudinal differences between the genders, given our observations as well as earlier evidence suggesting that women and men may use implicitly different criteria in their decision-making processes,60 61 62 63 that women may be less inclined to burden their families, and that women may be more risk-averse.60 61 64 The determinants and consequences of such gender-related differences in end-of-life decision making clearly warrant thorough, systematic exploration.

Decisional Conflict
The patterns of responses to the DCS and its subscales indicate that, although there was a tendency to be uncertain about their choice, the overall decisional conflict experienced by these respondents was, on the whole, relatively low. There are several possible implications here. First, prior to seeing the decision aid, the majority of the patients may have already done some serious thinking about the issues inherent in the MV decision and arrived at a comfortable resolution, and the aid merely reinforced their earlier resolution. On the other hand, this group of patients may have been experiencing a high degree of conflict, and the aid helped to modify that experience. To tease out these possibilities, a study designed to include use of the DCS scale before and after encountering the aid would need to be performed. However, our observations do clearly point to a third implication: the decision aid used here did not induce a high level of conflict that would constitute an adverse effect. Accordingly, in future applications of this aid, investigators can have some confidence that they will not inadvertently create high levels of patient distress.

Consistency With Surrogates
Not infrequently, MV decisions are made on behalf of a patient by family members or by the physician alone when the patient is unable to communicate.17 18 20 21 In many cases, there has been minimal prior communication between patient and physician regarding the patient's wishes.65 Unfortunately, physicians and family members often do not accurately comprehend and act on a patient's wishes, even though patients believe that their wishes are known.22 23 As a consequence, physicians tend to base their decisions on their perceptions of the patient's quality of life. However, especially in older age groups, physicians often undervalue that quality of life relative to the patient's subjective evaluation,66 and may have an unconscious tendency to frame treatment-related information to influence choices.67 This line of reasoning highlights the need to test interventions to foster clear, balanced physician-patient communication. The need is reinforced by empirical studies demonstrating that patients' preferences are not influencing the institution of life-sustaining procedures,68 69 70 and by our observations. In this study, there was complete lack of congruence between the patients' and the family members' attitudes about MV, and patients' and physicians' attitudes differed 35% of the time. Taken together, the evidence strongly points to the necessity of directly eliciting the patient's wishes prior to a catastrophic event. We propose that the wide availability of simple, structured decision aids that are readily administered could facilitate early discussions, could reduce the likelihood that the MV decision is influenced by the personal values of the physician and/or by hidden framing effects, could reveal when others are making inaccurate assumptions about the values held by patients, and could affect the actual institution of procedures like MV.

Conclusions
We believe that there is a need to facilitate discussion and decisions concerning MV for patients with severe COPD and that our decision aid addresses this issue. Although the decision was difficult to make, patients reported that they felt well informed, they were generally satisfied with the decision they had made, and they did not change their decision in the subsequent 12 months. To enable widespread clinical use, we recommend that this aid be modified to be self administered, and tested in a clinical setting as an adjunct to physician-patient-family discussions.


   Appendix 1
TOP
 Abstract
 Introduction
 Materials and Methods
 Results
 Discussion
 Appendix 1
References
 
Hypothetical Scenario Describing COPD, Complications, and Treatment Options
COPD (Emphysema)
COPD stands for chronic obstructive pulmonary disease. It is often called emphysema or chronic bronchitis, and it is a common disease that affects the lungs. When a patient has COPD or emphysema, the air passages in the lungs become narrow. This makes it difficult to get air in and out, like breathing through a straw.

Even though the patient does not feel sick, he or she might have trouble breathing and become short of breath very easily.

How Does COPD Affect Daily Life?
COPD affects the way a person performs his or her daily activities. Physically, it is easy to become short of breath, and the chest may feel tight. The patient may tire easily and have trouble sleeping.

Emotionally, the COPD patient may become afraid of getting out of breath, or of not having medication when they need it. It is often common to feel easily frustrated or irritable.

It may also be necessary to get the help of others to do daily activities. Visiting with friends or relatives, traveling, and other social activities may have to be limited because breathlessness is so severe. Everyday activities like walking, dressing, and carrying out chores take longer and are more difficult.

How COPD Is Treated
A doctor can prescribe medication or home oxygen to help the breathing and make the patient more comfortable. COPD does not go away.

COPD may become worse over time.

Do you have any questions or comments about COPD, how it affects daily living, or how it is treated?

When COPD Gets Worse
As time goes by, breathlessness becomes worse. Because the lungs are weak, even a common cold may make breathing so difficult that treatment in hospital is needed. Sometimes, medication and oxygen alone are not enough to support breathing. It may be necessary to consider whether or not to go on a breathing machine.

The Decision
It is no longer possible for the patient to breathe on his or her own. A decision will have to be made whether to go on a breathing machine, or not to go on a breathing machine.

The next pages will describe what is like to choose each of these.

How Does a Breathing Machine Work?
When a patient is put on a breathing machine, a tube is put in the mouth and down into the windpipe. A breathing machine pumps air in and out of the lungs. This gives the lungs a chance to rest and recover from the illness.

What Is It Like To Be on a Breathing Machine?
Being on a breathing machine is usually uncomfortable. There are often feelings of breathlessness, panic or anxiety, a gagging feeling, and sometimes pain in the throat. Medications will relieve the discomfort of the procedure.

Since a tube is in the mouth, it is not possible to eat and the patient will be fed through a tube that goes through the nose and down into the stomach. It is usually necessary to stay in bed, but the nurses will be helpful. It is not possible to talk with friends and family because of the tube, but it is possible to communicate by pointing or by writing things down. A patient may be sedated and unaware of their surroundings.

How Well Does Treatment on the Breathing Machine Work?
It is not possible to know ahead of time how long a patient will have to be on the breathing machine.

There are two possible outcomes: there is a 50% chance that the patient gets better, and a 50% chance that the patient does not get better.

If the patient gets better, the lungs become strong enough to be removed from the breathing machine. After the patient comes off of the machine, he or she will be no better than before the illness that brought him or her to hospital.

If the patient does not get better, the lungs can no longer breathe on their own. The patient cannot live without the breathing machine. He or she will stay on the breathing machine until death.

Do you have any questions about a breathing machine, or what it may be like to be on the machine?

What Will Happen if a Patient Decides Not To Go on the Breathing Machine?
If the patient decides not to go on the breathing machine, he or she will no longer be able to breathe. The staff will help make the patient comfortable. Medication will be given to reduce the breathlessness and discomfort. The patient will eventually fall into a deep sleep.

Death will occur without unnecessary tubes, tests, or procedures.

Do you have any questions about what will happen if you do not go on a breathing machine?

End of description.

Hypothetical Decision
Now, I would like you to make a hypothetical decision:

Imagine that you have just had a severe attack from your COPD. Your lungs need the help of a breathing machine in order to breathe. It is no longer possible for you to breathe on your own. Given the information that I have just presented to you, I would like for you to think about your own choice for a breathing machine. Remember, there is no right or wrong answer. You have to do what you feel is best for you; two people might choose very different things for themselves.

If you could no longer breathe on your own, would you choose (A) to go on a breathing machine (you would take medication to reduce breathlessness and discomfort, and you would have a 50% chance of coming off the machine and living for 1 year in a state of health no better than before you went on the breathing machine); or (B) not to go on a breathing machine (you would take medication to reduce breathlessness and discomfort, and you would have a 100% chance of death)?

End of hypothetical decision.


   Footnotes
 
Abbreviations: DCS = Decisional Conflict Scale; MRC Dyspnea Index = British Medical Research Council Modified Dyspnea Index; MV = mechanical ventilation

Drs. Hebert and O'Connor are Career Scientists of the Ontario Minister Of Health. Dr. Llewellyn-Thomas is a National Health Research Scholar supported by the National Health Research and Development Program.

This research was funded in part by the Ontario Thoracic Society.

Received for publication June 26, 1998. Accepted for publication March 29, 1999.


   References
TOP
 Abstract
 Introduction
 Materials and Methods
 Results
 Discussion
 Appendix 1
 References
 

  1. Redline, S (1991) The epidemiology of COPD. Cherniack, NS eds. Chronic obstructive pulmonary disease ,225-234 WB Saunders Philadelphia, PA.
  2. Statistics Canada. Health reports: causes of death, 1990. 1992; 4(1):88–89
  3. Statistics Canada. Health reports: hospital morbidity, 1989–90. 1992; 4(1):32–33
  4. . United States Public Health Service. (1984) The health consequences of smoking: chronic obstructive lung disease—a report of the Surgeon General. US Government Printing Office Rockville, MD.
  5. Sherman, CB, Osmanski, JP, Hudson, LD (1991) Acute exacerbations in COPD patients. Cherniack, NS eds. Chronic obstructive pulmonary disease ,443-456 WB Saunders Philadelphia, PA.
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