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(Chest. 2006;130:419-428.)
© 2006 American College of Chest Physicians

Understanding Cardiopulmonary Resuscitation Decision Making*

Perspectives of Seriously Ill Hospitalized Patients and Family Members

Daren K. Heyland, MD, MSc; Chris Frank, MD; Dianne Groll, RN, PhD; Deb Pichora, RN, MSc; Peter Dodek, MD, MHSc; Graeme Rocker, DM, MHSc, FCCP; Amiram Gafni, PhD; for the Canadian Researchers at the End of Life Network

* From the Department of Medicine (Drs. Heyland, Frank, and Groll, and Ms. Pichora), Kingston General Hospital, Kingston, ON, Canada; the Program in Critical Care Medicine (Dr. Dodek), St. Paul’s Hospital, Vancouver, BC, Canada; the Department of Medicine (Dr. Rocker), Queen Elizabeth II Health Sciences Center, Halifax, NS, Canada; and the Center for Health Economics and Policy Analysis (Dr. Gafni), McMaster University, Hamilton, ON, Canada.

Correspondence to: Daren K. Heyland, MD, MSc, Angada 4, Kingston General Hospital, Kingston, ON, Canada K7L 2V7; e-mail: dkh2{at}post.queensu.ca

Abstract

Background: To improve communication and decision making related to cardiopulmonary resuscitation (CPR), a greater understanding of the perspectives of hospitalized patients with advanced diseases and their family members are needed.

Methods: In five Canadian hospitals, we administered a face-to-face questionnaire to older inpatients with end-stage cancer and advanced medical diseases and, where possible, to one of their family members, regarding information needs, the deliberation process, and their preferred decisional role.

Findings: A total of 440 of 569 patients (78%) and 160 of 176 available caregivers (91%) agreed to participate. Most patients (61%) had thought about what treatment they wanted if their heart stopped, few patients (11.3%) could describe more than two components of CPR, and only 2.7% of patients thought that the success rate of CPR was < 10%. A minority of patients (34%) had discussed CPR with their physician; 37% did not want to discuss their preferences with their doctor. Patients who felt that end-of-life issues were relevant to them were 5.5 times more likely to want a discussion with the physician regarding resuscitation (odds ratio, 5.5; 95% confidence interval, 2.5 to 12.0). The preferred role in decision making was variable, but most patients (59.7%) and family members (81.6%) preferred some degree of shared decision making that included the family member. There were no significant differences between cancer and medical patients in their preferred decisional role.

Interpretation: Seriously ill hospitalized patients have poor knowledge about CPR, and variable preferences for deliberation and their role in the decision-making process regarding their treatment. Strategies that improve understanding of CPR and foster discussions that involve patients, family members, and physicians in the decision-making process may improve the quantity and quality of communication and decision making about CPR.

Key Words: cardiopulmonary resuscitation • clinical decision making • end-of-life care

Patients who receive terminal care that is inconsistent with their previously expressed wishes are more likely to be dissatisfied with end-of-life (EOL) care and consume considerable health-care resources.1 However, conversations about preferences for terminal care, such as cardiopulmonary resuscitation (CPR), occur infrequently,23 physicians and families are often unaware of patient preferences for life-prolonging therapies, and there is poor agreement between what a physician or family member thinks a patient would want and the patient’s expressed preference.45 Furthermore, the increased use of "do-not-resuscitate" (DNR) orders for older patients, especially when patients and/or families are not involved in decision making, has raised ethical concerns.6 Several interventional studies78910 that were designed to improve the process of EOL decision making did not enhance meaningful communication between the patient and the physician and, as a consequence, failed to affect subsequent clinical outcomes.

The apparent magnitude of the problem and the failure of current approaches to improve the situation strongly suggests that there are determinants of successful communication and decision making that are not well-understood. In order to improve quality of care more effectively, a greater understanding of the perspectives of seriously ill patients and their family members on communication and decision making related to CPR is needed.

Given that the majority of decedents in Canada are older patients with advanced medical disease or cancer who die in the hospital,1112 the primary aim of this study was to provide comprehensive descriptions of this population’s views on communication and decision-making issues related to CPR choices. A priori, we postulated that patients with different illnesses might have very different perspectives on these discussions and decisions. Patients with illnesses such as congestive heart failure and COPD may not conceptualize that they have a terminal illness despite the presence of significant symptoms and functional limitations, and despite the known short-term survival rates.13 Patients with cancer may have a more progressive, predictable decline compared to patients with end-stage medical disease who experience acute exacerbations of symptoms with an unpredictable prognosis. This difference in disease trajectory has been found to influence the use of palliative care resources, intensive care resources, and the final location of death.14 It is possible that differences in disease course may affect the nature of doctor-patient interactions, and may influence patient and family perspectives on CPR decision making. Therefore, a secondary aim of this study was to explore whether patients with cancer and without cancer had different perspectives on CPR decision making.

Materials and Methods

This study was a cross-sectional survey conducted at five tertiary acute care teaching hospitals across Canada, ranging from 400 to 520 acute care beds. Each site admitted seriously ill patients under the care of a primary service (eg, general medicine or respirology). Palliative care, social work, clinical ethics, and other consultation services with health-care professionals were available on request. The research ethics boards at each participating institution approved the study.

Study Population
Patients were eligible if they met the following inclusion criteria: age > 55 years; and one or more of the following comorbidities at an advanced stage:

  1. COPD: at least two of the four following conditions: baseline PaCO2 of ≥ 45 mm Hg; cor pulmonale; respiratory failure episode within the preceding year; and FEV1 of ≤ 0.75 L.
  2. Congestive heart failure: New York Heart Association class IV symptoms or left ventricular ejection fraction of ≤ 25%.
  3. Cirrhosis: confirmed by imaging studies or documentation of esophageal varices and one of the following three conditions: hepatic coma; Child’s class C liver disease; or Child’s class B liver disease with GI bleeding.
  4. Cancer: metastatic cancer or stage IV lymphoma.
  5. Minimum expected hospital stay of 72 h.

These criteria have been used in previous EOL studies and define a group of patients who have a 50% probability of dying within 6 months.915 We excluded patients who were likely to have communication difficulties, such as language or cognitive barriers. Research nurses reviewed patients’ progress notes and talked with staff or, in some circumstances, the patient directly to make such a determination. No formal mental status assessment was performed.

Questionnaire Development
The details of survey development and pretesting have been reported elsewhere.16 In brief, the development of the entire questionnaire was based on conceptual frameworks that were related to quality EOL care or interviews with patients and families.16 The overall questionnaire consisted of two parts. The first part, which focused on issues related to quality care at the EOL and the respondent’s views on its importance and their satisfaction with the care, has been reported elsewhere.16 The second part of the questionnaire pertained to aspects of CPR communication and decision making. We based this section of the questionnaire on the framework of Charles and colleagues,17 which describes the different components of decision making in the medical encounter. These interactions among patients, professionals, and, sometimes, family members are composed of the following three distinct components: information exchange; deliberation about treatment options; and the actual treatment decision. The deliberation stage of decision making refers to the process of expressing and discussing treatment preferences.17 In the deliberation stage, patients do not choose the treatment to be implemented. This is done in the next stage, which we call in our study "decision making." Although it is useful for research purposes to describe each stage independently, in real life they may occur together or in an iterative process.17 In our adaptation of the framework to the EOL context, each of these components can be affected by the characteristics of the participants, such as age, race/ethnicity, life experiences, and nature of the symptoms. Ultimately, the end product of these interactions will be a decision related to the use, limitation, or withdrawal of life-sustaining therapies. We used this framework to generate items for the second half of the questionnaire. This section of the questionnaire contained 24 questions and assessed respondents’ views on EOL communication and decision-making issues.

The draft questionnaire was then pilot-tested to assess readability, sensibility, and clarity. We held a focus group with a critical care physician, three palliative care physicians, a palliative care nurse from the local hospice, two research nurses, an epidemiologist, a cognitive psychologist, and a clinical ethicist to review the content and phrasing of the draft questionnaire. In addition, we presented the draft questionnaire to seven patients who met the inclusion criteria for the study and to their family members. Each patient was asked how well they understood each question and why they chose a particular response option. Discrepancies between what was intended by a question and what the patient understood were noted. We also asked patients to identify any questions that made them feel uncomfortable or embarrassed, or that they felt were negative in any way. Finally, we asked these patients how the questionnaire might be modified to improve clarity and completeness. Based on feedback about content, clarity, and sensibility, modifications were made before using the questionnaire in this study. To evaluate the decisional role, we provided a list of various roles ranging from active (I decide what treatments I will receive) to passive (the doctor decides what treatments I will receive), which were similar to those in previous studies.18 To evaluate what information was important in making decisions related to CPR, we used the following 5-point ordinal scale: 1, not at all important; 2, somewhat important; 3, important; 4, very important; and 5, extremely important. The surveys for the patients and family members were identical, and family members were requested to report their own views, not to offer proxy responses on behalf of the patient.

Data Collection
At each hospital, a research nurse screened patient charts to identify potential participants from Monday to Friday. The research nurse approached suitable patients, and informed consent was obtained. The family members of enrolled patients were also approached for consent. Both patients and family members were then administered the questionnaire in independent, face-to-face interviews, usually on the same day. To facilitate answering the questions with categoric responses, we provided cards that showed the response options. The research assistant recorded verbatim answers to open-ended questions. We also collected the following demographic data: age; gender; marital status; number of dependents; ethnicity; religion; education; and patient’s admission diagnosis and functional status (as measured by the scoring system of Katz et al19). Survival status at 6 months was determined for all patients by contacting the patients, their families, or their family doctor.

Statistical Analysis
As the main purpose of this study was descriptive, we set out to obtain a consecutive sample of 100 eligible patients in each of the five participating hospitals. A sample size of 100 reflected a population that was considered to be large enough to provide a representative sample of responses for each local participating hospital. The baseline demographics of participating patients and family members are described using means, SDs, frequency counts, and percentages. Differences between cancer and noncancer patients were analyzed using independent t tests (for continuous variables) or {chi}2 analyses (for dichotomous variables). To be parsimonious in our data presentation, we isolated "extremely important" responses (response option 5) to focus on the elements that patients and family members considered to be the most important, relative to the other elements. We ranked the elements based on the proportion of responding patients and family members who rated each element as "extremely important."

Decision-making models were developed using ordinal regression models to evaluate which independent variables were associated with different levels of patient and caregiver decision making. The dependent variable consisted of the following three levels of decision making: level 1, "physician decide"; level 2, "shared decision making between patient, family and physician"; and, level 3, "I make all the decisions (patient or family member)." Independent variables entered into the models included age, gender, diagnosis, functional status as measured by the Katz score (for patient models), rural vs urban, marital status, having a family caregiver or not (for patient model), and relevance of this issue to their current condition (ie, are these questions relevant to you?; response, yes/no). A similar model was developed to explain why some patients did not want to participate in discussions about resuscitation. The results of models were expressed as odds ratios (ORs) and 95% confidence intervals (CIs). Agreement between patients and caregivers regarding the role they would like to play in CPR decision making was measured using the {kappa} statistic with quadratic weights. Differences were considered significant when the p value was < 0.05. All statistical tests were performed using a statistical software package (SPSS; version 12.0; SPSS; Chicago, IL).

Results

A total of 569 eligible patients were identified and approached for consent at the five participating hospitals, and 447 patients consented for an overall response rate of 78.6%. Six patients withdrew from the study after beginning the interviews, and one patient died on the day before the interview. Of the participants, 226 patients (50.5%) had a family member who could potentially participate. However, due to logistical reasons, not all family members could be approached; of the 176 available family members, 160 agreed to participate (response rate, 90.9%). The demographics of study patients and family members are shown in Table 1Go . Less than half of the patients (n = 205; 45.6%) had an EOL care order (ie, an order for no CPR or a DNR order) on the medical chart for the concurrent hospitalization.


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  		Table 1. Demographics of Study Subjects*

 

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  		Table 1A. Continued*

 
Information Exchange
Table 2 summarizes patients’ knowledge about CPR, and their preferences and preferred roles in CPR discussions. Patients without cancer reported a higher frequency of CPR in the past (18.2% vs 8.4% of cancer patients, respectively; p < 0.05). The majority of patients could not describe the treatments performed on people during CPR, and more cancer patients than medical patients could not identify any of the key elements of CPR (53.6% vs 38.7%, respectively; p < 0.05). Less than 3% of all patients had an accurate knowledge of CPR outcomes, and 63.4% of patients were uncertain as to the rates of hospital discharge following CPR. While the majority of patients (61.1%) had considered what to do if their heart stopped beating, more than a third (37.0%) did not wish to have a discussion with their physician about resuscitation. Older patients (OR, 0.96; 95% CI, 0.93 to 0.99; p = 0.029), patients with greater functional impairments (OR, 0.61; 95% CI, 0.44 to 0.84; p = 0.003), and patients who were not married (OR, 0.23; 95% CI, 0.13 to 0.53; p > 0.001) were less likely to want a discussion with the doctor. Patients who felt these questions were relevant to them (OR, 5.50; 95% CI, 2.51 to 12.05; p > 0.001) were five times more likely to want a discussion with the doctor about resuscitation.


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  		Table 2. Patients’ Perspectives on Communication and Decision Making Related to CPR

 
A third of patients (34.3%) had spoken to a hospital physician about resuscitation treatments, and a larger percentage (46.4%) reported discussions they had had with family members. When asked about the amount of information they would prefer to hear to make decisions, 25.5% reported wanting a lot of information and an equal amount (25.5%) wanted no information. A larger number of patients (39.0%) preferred "some information." There was no difference between cancer and noncancer patients in the amount of information desired.

Patients and family members identified the following two main informational needs that they considered to be "extremely important" compared to other possibilities (Table 3 ): "knowledge about the expected course of the illness"; and "knowledge about the expected quality of life after resuscitation." "Knowledge about the expected course of the illness" was preferred more frequently for cancer patients than for noncancer patients (45.1% vs 35.8%, respectively; p = 0.03). For all of the informational categories, there were more family members who rated them as being "extremely important" compared to patients (p < 0.001 for all comparisons).


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  		Table 3. Informational Needs of Patients and Family Members Related to CPR*

 
Deliberation
When asked about who should be involved in the deliberation, 23.2% of patients wished to do this on their own. A small number of patients (8.2%) wished the hospital physician alone to be the main person making the decision, and 34.1% wished a combination of patient/family/MD to deliberate (Table 2). In the situation in which the patient was too sick to participate, 51.9% of family members saw the deliberation process as involving themselves, other family members, and the doctor; 24.4% preferred to involve only other family members, and 15.6% felt that no one else needed to be involved other than themselves.

Decision Making
In their current health state; 22.5% of patients wished to make the decision themselves, 26.6% desired joint decision making with patient and physician, and 26.8% wished to make the decision with physician input (Table 2). There was no difference between cancer and noncancer patients in terms of the preference for decisional responsibility. Female patients were more likely to prefer a shared or physician-only decision-making model (OR, 1.8; 95% CI, 1.05 to 3.02; p = 0.033).

If the patient was too sick to participate in decision making, the majority of patients wanted their family member and the physician to decide together in some form of shared decision making (Fig 1 ). Compared to patients’ wishes for their preferred role, family members were more likely to prefer joint decision making with physicians and were less likely to prefer that they or the physician decide independently (p < 0.001) [Fig 1]. Family members who felt that the ill family member was facing EOL issues currently were more likely to prefer shared or physician-only decision making than when EOL issues were not judged to be relevant (OR, 21.72; 95% CI, 16.07 to 27.38; p < 0.001). For those patients with a matched family member, there was poor agreement regarding the family member’s preferred decisional role when the patient was too sick to participate in decision making ({kappa}, 0.11; p = 0.016).


Figure 1
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  		Figure 1. Preferred role in CPR decision making when the patient is unable to participate. The totals do not add up to 100% as 8.9% of a patient responses and 4.4% of family responses were missing. MD = doctor.

 
Discussion

Studies of satisfaction with EOL care suggest that improvements in communication and decision making among patients, families, and providers are likely to have the greatest impact on improving the quality of EOL care.2021 Before we can improve the situation with regard to decisions about resuscitation, we need to have a better understanding of patient and family perspectives. This is the first study that comprehensively describes the views of older hospitalized patients with life-limiting cancer and noncancer diagnoses and those of a family member as they pertain to CPR communication and decision making. Since the majority of deaths occurring in hospitals are secondary to noncancer causes, we believe that understanding the views of these patients and those of their families on communication and decision making about CPR is an important starting place for improving EOL care.

Despite the increased publicity and awareness about EOL decision making and advanced directives, little has changed in the acute care hospitals that we studied since Hofmann and colleagues22 described a similar proportion of seriously ill hospitalized patients who did not want to discuss preferences for CPR with their physicians. A significant number of patients in this study (37%) were not open to discussing EOL treatment options, and only half of them had an EOL order (eg, order for no CPR or no intubation) on their chart for their index hospitalization. Their unwillingness to discuss EOL issues may relate to a patient’s desire to concentrate on staying alive rather than talking about death or to their uncertainty about which physician will be taking care of them when they are very sick.23 Alternatively, such patients may be expressing a desire that they want others to make decisions for them. More research is needed to understand the barriers to such conversations. Interestingly, it was exactly those patients who were at highest risk of death or deterioration of their condition who had no family available to help with decision making (eg, older patients with impaired functional status living alone) who did not want to discuss resuscitation with their physician. If the conditions of these patients deteriorate to the point where they can no longer advocate for themselves, how will physicians know their preferences for EOL care? The self-assessed relevancy of EOL issues for patients seemed to be a strong predictor of their willingness to discuss CPR with physicians. Perhaps the starting point for CPR discussions should be a clear and frank discussion with the patient and the family about the patient’s prognosis. Prognostic information provided early in the course of a serious illness may not only improve CPR decision making but may have a favorable impact on the overall patient satisfaction with care.24

We found that patients’ knowledge about the rationale and process of CPR and resuscitation, as well as the clinical outcomes, was very limited in our study population. Perhaps patients and family members know more than they reveal in this face-to-face questionnaire. However, the significance of this observation is that preferences for life-sustaining treatments, like CPR, vary depending on the patient’s understanding of the burden related to the treatment, the outcomes, and the likelihood of those outcomes.252627 The predominant clinical approach of constraining patients to choose various resuscitation options without adequate discussion about the burden of treatment, the potential outcomes, and the likelihood of those outcomes is likely a major contributing cause to the current problems related to discussions about resuscitation. Strategies to improve patient (and family) understanding of the process and the probabilities of certain outcomes of CPR are needed.

Given our findings of poor knowledge of CPR, and that some patients lack interest in discussing CPR, it is reasonable to conclude that for the situation to improve, physicians should be responsible for initiating these EOL conversations directly with their patients. In doing so, physicians should consider involving family members as the majority of patients and families view CPR decision making as a collaborative experience among the health-care provider, the patient, and the family. This is especially relevant to families who judge their loved one to be currently facing EOL issues. Looking back on the death of a loved one, some families would have wanted more information and more involvement in decision making.28 This is apparent in the results of our assessment of informational needs where we observe family members’ ratings of the importance of various information bits as much more important compared to patients’ ratings. Unfortunately, physicians rarely suggest to patients that they involve family members in resuscitation discussions and decisions.29 For future communication strategies to be successful, health professionals should attempt to engage the triad of the provider, the patient, and the family member, when possible and when considered desirable by the patient (and their family).

Our previous single-center studies looked at the actual process of decision making from both patient and caregiver points of view.3031 The findings of this multicenter survey support our previous findings that patients and their family members have variable viewpoints on their preferred deliberation process and role in decision making, but more than half viewed the experience as an interaction among the patient, family, and doctor with a sharing of decisional responsibility, especially if the family member perceived that the patient was currently facing EOL issues. A shared decision-making model for EOL decisions was endorsed as the preferred option by an international consensus conference32 and is further supported by our own work in the critical care setting.33 The clinical implications of this conclusion relates to how physicians approach patients to make CPR decisions. Often, physicians lay out the treatment options related to CPR and then ask, "What do you want us to do?" While this language may be acceptable to patients desiring active decisional roles, it may add to the anxiety, confusion, and suffering of patients desiring a shared or more passive role. Physician should attempt to elicit preferences for decisional role prior to determining treatment preferences. "Decision aids"34 or "informational leaflets"35 may help to inform patients and families and to facilitate shared decision making in the context of CPR and other EOL decision making in the hospitalized setting. Our results would suggest that patients and families do not desire large quantities of information, and that knowledge about the expected course of illness and the resultant health state are the most important information elements to be communicated in such tools.

It is apparent from our comparisons of patient and family member preferences for their decisional role that there is poor agreement on what role the family plays in the setting of an incompetent patient. What should be done if the patient and family member disagree on involvement in decision making? There is emerging evidence that physicians do give consideration to family interests and perspectives, even if those perspectives are not necessarily important to the patient.36 Moreover, in situations where family members or substitute decision makers disagree with the patient’s prespecified wishes, in more than half of cases the patients prefer physicians to follow the family member’s directions.37 Furthermore, when seriously ill hospitalized patients were asked what elements of care were important to them in their conceptualization of quality EOL care, > 90% endorsed the concept of having their family member involved in the decision-making process.16 While this seemingly may conflict with patient autonomy, at least with elderly patients it has been argued that familial autonomy and familial decision making have social, legal, and ethical justifications.38 Certainly, many cultures and individuals put an emphasis on familial autonomy or on a more family-centered decision-making process.39 Perhaps a persistent focus on patient autonomy, potentially prescribing roles for patients that they do not wish to play, may be responsible for the persistent failure of the system to improve communication and decision making at the EOL. Asking patients how they see these kinds of decisions being made represents an important starting point for such discussions.

The perspectives of cancer patients on CPR decision making were similar to those of noncancer patients. This suggests that the variability in preferences for discussion and decision making may depend more on the individual than on the diagnosis.

The strengths of our study include its comprehensive evaluation of the decision-making process from the patients’ and family members’ perspective in a targeted population at high risk for short-term mortality and likely to consume significant resources in their final months. The lack of a formal assessment of the mental status of study patients and the low numbers of family members participating in the interview are limitations of the study. The limited ethnic diversity of our study population from academic teaching hospitals may limit the generalizability to other groups of patients. However, the multicenter nature of our study enhances the generalizability of our findings.

Conclusions

Patients who have advanced cancer and medical illnesses and are admitted to acute care hospitals do not have good knowledge about CPR. However, more than a third of patients did not wish to discuss preferences with their physician, and those patients who had a poorer understanding of their prognosis were less willing to have these discussions. Most patients prefer shared decision making with family and physician involvement. There are no significant differences between cancer and advanced medical patients as to the preferred role in decision making. Strategies that improve the patient’s understanding of CPR, foster a willingness to discuss CPR, and involve patients, family members, and physicians in the decision-making process may improve the quality and quantity of CPR communication and decision making.

Footnotes

Abbreviations: CI = confidence interval; CPR = cardiopulmonary resuscitation; DNR = do not resuscitate; EOL = end of life; OR = odds ratio

None of the authors have any conflict of interest with any company or organization whose products or services may be discussed in this article.

Received for publication November 9, 2005. Accepted for publication February 3, 2006.

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