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* From the Department of Medicine, Medical University of South Carolina, Charleston, SC.
Correspondence to: John E. Heffner, MD, FCCP, Department of Medicine, Medical University of South Carolina, 96 Jonathan Lucas St, Suite 812, Charleston, SC 29425; e-mail: heffnerj{at}musc.edu
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Abstract |
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 TOP Abstract IntroductionMaterials and MethodsResultsDiscussionReferences |
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Setting: Fourteen outpatient cardiac rehabilitation programs in 11 states.
Participants: Four hundred fifteen subjects enrolled in cardiac rehabilitation.
Measurements and results: A questionnaire determined patient preferences for advance planning, completion of advance directives, completion of patient-physician discussions on end-of-life care, and effects of health status on patient acceptance of life-sustaining interventions. Seventy-two percent of patients wanted to direct their own end-of-life care, 86% desired more information on advance directives, 62% wanted to learn about life-sustaining care, and 96% were receptive to advance-planning discussions with their physicians. Seventy-two percent of patients had considered that they might require life-sustaining care in the future; acceptability of resuscitative care depended on health status and probability of survival. However, only 15% had discussed advance planning with their physicians, and 10% were confident that their physicians understood their end-of-life wishes. Physicians and cardiovascular rehabilitation programs were considered desirable sources of information on advance planning.
Conclusions: Cardiac patients enrolled in rehabilitation programs want to learn more about end-of-life care and need more opportunities to discuss advance planning with their physicians. Patients consider cardiovascular rehabilitation programs to be acceptable sites for advance planning education.
Key Words: advance directives • coronary disease • ethics • patient education • resuscitation decisions
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Introduction |
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TOPAbstractIntroductionMaterials and MethodsResultsDiscussionReferences |
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We have previously demonstrated that pulmonary rehabilitation programs are effective sites for educating patients about advance directives.7 These findings suggest that cardiovascular rehabilitation may similarly serve as valuable sites for educating patients about advance planning. We have recently shown, however, that < 9% of cardiovascular rehabilitation programs provide educational sessions on end-of-life topics.8 Moreover, 50% of surveyed cardiovascular rehabilitation directors do not consider their programs to be appropriate settings for advance planning education.8
To examine the interests of ambulatory cardiac patients in advance planning and their willingness to participate in advance directive education in cardiovascular rehabilitation programs, we performed an observational survey study. The questionnaire evaluated the interests, knowledge, and preferences related to end-of-life care of 415 cardiac patients enrolled in 14 outpatient rehabilitation centers in 11 states.
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Materials and Methods |
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TOPAbstractIntroductionMaterials and MethodsResultsDiscussionReferences |
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After reviewing the rigorous study methodology, 34 programs declined participation because they did not have sufficient staff to manage the study. The 14 programs that remained interested after discussing the research design were enrolled. An extensive phone interview determined that no differences existed in program design or curricula related to end-of-life issues between the 14 study sites and the 34 programs that declined participation.
Patients
The study patients were adults (
18 years old) who were
enrolled in the participating cardiovascular rehabilitation programs
during the study period. All patients provided informed consent, and
the study was approved by the Institutional Review Boards for Human
Research of the coordinating centers and the study sites. There were no
study exclusions. All patients enrolled in the cardiac rehabilitation
programs were invited to participate in the investigation by the
educational directors at the study sites.
Questionnaire
We modified a 36-item questionnaire that assessed attitudes
regarding advance directives of patients enrolled in pulmonary
rehabilitation programs.5
The questionnaire surveyed
patients for demographic and health status information, in addition to
their preferences and experiences regarding end-of-life care,
life-sustaining interventions, and advance directives.
The questionnaire was pilot tested on elderly hospital volunteers and patients enrolled in a pulmonary rehabilitation program to refine the final questionnaire for clarity. This testing demonstrated a high reliability and construct validity.7
Statistical Analysis
2 or simple logistic regression
analyses evaluated the categorical and continuous variables,
respectively, of patients’ responses to questions. Responses of
interest to the study included the presence of a living will and
durable power of attorney, occurrence of discussions with physicians
about life-sustaining care and advance directives, existence of an
understanding between patient and physician about end-of-life wishes,
and responses to hypothetical vignettes. The following variables were
examined in the univariate analyses: age, gender, marital status,
education, nature of cardiac disease, New York Heart Association (NYHA)
classification, completion of a living will, completion of a durable
power of attorney for health care, previous hospitalizations, previous
admission to an ICU, previous intubation, and previous episode of
mechanical ventilation. Factors that were significant at the p < 0.1
level in the univariate analyses were entered into a nominal logistic
regression model. A forward elimination technique was used to remove
the least significant factors with p values 0.05.
Likert scale-type questions were analyzed as both ordinal and continuous variables. No differences were noted in the two analyses, so results were reported as continuous variables with multiple comparisons made by the Tukey-Kramer HSD test. The Kruskal-Wallis test determined differences between more than two factors when the distribution was nonparametric. Odds ratios (ORs) and adjusted ORs (AORs) with their 95% confidence intervals (CIs) were calculated by standard techniques. The variation of normally distributed data is described by the standard deviation. All analyses were performed using JMP version 3.2 software (SAS Institute; Cary, NC),9 with p < 0.05 accepted as indicating significant differences.
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Results |
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TOPAbstractIntroductionMaterials and MethodsResultsDiscussionReferences |
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Four of the 415 patients did not complete some of the questions, giving a denominator for calculations of 411 to 415 for individual questionnaire items. Demographic factors and outcome measures did not vary by the respondents’ state residence.
The characteristics of the study subjects are shown in Table 1 . Most patients had coronary artery disease as shown by the high prevalence (87%) of myocardial infarction, angioplasty, and coronary artery bypass surgery. Eighty-percent of patients had undergone one or more cardiac surgery interventions. Although the patients had high functional levels as shown by the 91% of patients who were in NYHA classifications of 1 to 2, most patients (73%) had been previously hospitalized for a complication of their cardiac condition (median number of hospitalizations, 2; interquartile range, 1 to 3), and 91% had been cared for in an ICU for cardiac or noncardiac-related illnesses. Twenty-nine percent of patients had been previously intubated and received mechanical ventilation for events related to their cardiac conditions.
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Living Wills and Durable Powers of Attorney for Health Care
Most patients had heard of living wills (93%) and durable powers
of attorney for health care (DPAHC; 52%) from various sources (Table 2 ). Forty-one percent of patients had a living will, and 27% had a
DPAHC. The following variables in the univariate analysis were
associated with the completion of a living will: female gender (OR,
1.6; 95% CI, 1.0 to 2.5; p = 0.049), older age (p < 0.0001),
completion of a DPAHC (OR, 28.3; 95% CI, 15.2 to 57.0; p < 0.0001),
and completion of physician discussions about advance directives (OR,
7.7; 95% CI, 4.2 to 15.4; p < 0.0001). The following variables were
associated with the completion of a DPAHC: older age (p = 0.0006),
completion of a living will (OR, 28.3; 95% CI, 15.2 to 57.0;
p < 0.0001), and completion of physician discussions about advance
directives (OR, 6.5; 95% CI, 3.7 to 11.5; p < 0.0001).
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The majority of patients (96%) indicated that they would find patient-physician discussions about advance directives acceptable; 37% would find these discussions informative, 41% informative and reassuring, 18% anxiety provoking but worthwhile, and 4% too anxiety provoking to pursue. Most patients (98%) would find explicit patient-physician discussions about the nature of life-sustaining interventions acceptable; 33% would find these discussions informative, 45% informative and reassuring, 20% anxiety provoking but worthwhile, and 2% too anxiety provoking to pursue.
Patients preferred that physicians initiate discussions about advance directives (59% of patients) and life-sustaining interventions (74% of patients). The remainder of patients preferred physicians to wait for patients to request these discussions. Expecting physicians to initiate discussions, however, did not appear to be an effective strategy. Physician-initiated discussions about advance directives or life-sustaining care occurred in only 5% of patients; only 19 of 64 patients (30%) who had discussions about advance directives and 19 of 38 patients (50%) with discussions about life-sustaining care stated that their physicians had initiated these discussions. Of the patients who opined that patients should initiate these discussions, only 13 of 170 patients (8%) had initiated discussions themselves on advance directives, even though 92% stated a desire to have these discussions. Only 8 of 107 patients (7%) had initiated discussions on life-sustaining interventions, even though 93% stated a willingness to do so.
Most patients (90%) did not believe that their physicians understood their end-of-life wishes. Factors in the univariate analysis associated with the existence of an understanding in the remaining 10% of patients was the existence of a living will (OR, 3.2; 95% CI, 1.6 to 6.4; p < 0.0006) or DPAHC (OR, 2.6; 95% CI, 1.3 to 5.0; p = 0.003) and a previous episode of intubation and mechanical ventilation (OR, 7.8; 95% CI, 2.5 to 23.9; p < 0.0001). In the multivariate analysis, the presence of a living will (AOR, 3.1; 95% CI, 1.6 to 6.5; p = 0.001) and previous intubation (AOR, 7.8; 95% CI, 2.4 to 25.0; p = 0.0005) were independently associated with a patient-physician understanding (whole model, p < 0.0001).
Patient Preferences for Timing Patient-Physician Discussions
Thirty-eight percent preferred having discussions about
life-sustaining care during routine office visits, 14% preferred
office visits prompted by new serious problems, 11% preferred hospital
admissions, 15% preferred hospital admissions for new serious
illnesses, and 22% preferred these discussions when the need for
life-sustaining care appeared imminent. An ambulatory office setting
was preferred by 52% of patients.
Patient Preferences in Hypothetical Settings
Self-perceived health status and the estimated probability of
survival after cardiopulmonary resuscitation affected the patients’
acceptance of mechanical ventilation. Sixteen percent of patients would
accept life-sustaining care regardless of health status or probability
of survival, and 11% would not desire life-sustaining care in any
circumstance. The remaining 302 patients (73%) would alter their
acceptance of intubation and mechanical ventilation depending on their
baseline health status, postrecovery health status, and the probability
of surviving the acute illness for which life-sustaining care was
needed.
Different hypothetical baseline health statuses, probability of survival, and postrecovery health status altered patients’ willingness to accept life-sustaining care (p < 0.0001; Figs 1 2 3 ). No clinical factor was associated with the patients’ responses.
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Discussion |
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TOPAbstractIntroductionMaterials and MethodsResultsDiscussionReferences |
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We observed that a relatively high proportion of our study patients had living wills (41%) or DPAHC (27%), compared to patients with general medical conditions.10 11 12 13 This greater likelihood of advance directive adoption may derive from the high socioeconomic status of patients enrolled in rehabilitation programs, which may provide more opportunities for legal assistance with estate planning and completion of health-related advance directives. This impression is supported by the large proportion of study patients whose lawyers were the first source of information on advance directives. Socioeconomic class and educational level have been previously shown to have a direct association with the adoption of advance directives.14
Few of the study patients identified their physicians or their cardiovascular rehabilitation programs as informational sources on advance planning. Combined with the low completion rate of physician-patient advance planning discussions, it appears that many of the study patients depended on nonmedical sources to learn about end-of-life care. This observation is notable considering the large proportion of patients who had been previously hospitalized for myocardial infarctions, cardiac surgery, angioplasty procedures, and other potentially life-threatening events. The absence of physician discussions is especially striking, considering that patients identified their physicians as one of the most desirable sources for advance planning information.
Most patients wanted their physicians to initiate advance planning discussions. Only 5% of patients, however, had a physician-initiated discussion. Previous studies indicate that most physicians believe that patients prefer to initiate end-of-life discussions, which thereby signals patient readiness to consider advance planning.15 This misimpression may have contributed to the lack of dialogue noted in the study.
Limited data exist on the interests and perceptions of cardiology caregivers relative to other medical specialists regarding end-of-life issues. Dickinson and Pearson16 reported that cardiologists demonstrated more difficulty communicating with terminal patients and their families compared to other specialists. The SUPPORT investigators17 observed that agreement on do-not-resuscitate status between patient and physician occurred for 8% of cardiology patients compared to 24% of oncology patients.17 Recent observations indicate that cardiology journals publish few articles on advance planning issues compared to pulmonary and critical care journals.18 Programs that enhanced end-of-life communication between cardiologists and their patients appear to be needed.
We found that patients altered their end-of-life wishes for life-supportive care on the basis of clinical factors, such as baseline health, probability of survival, and quality of postrecovery life. Because the willingness to accept or reject life-supportive care was not associated with any patient-related factors, preferences for life-supportive care in varying circumstances can only be learned by talking to patients. Previous studies indicate that informing patients about the probability of survival after cardiopulmonary resuscitation stimulates them to alter their advance directives.19 It is worrisome, therefore, that most patients completed their advance directives without an opportunity to learn their prognosis in various circumstances from their physicians.
Several limitations of our study need to be recognized. Our results may not be generalizable to all cardiac patients because the study focused on patients enrolled in cardiac rehabilitation programs. The study group, however, represents a broader range of cardiac disorders and severity of disease compared to the SUPPORT Project data,6 which is the only previous study to evaluate the end-of-life wishes of cardiac patients. The SUPPORT study was limited to hospitalized patients with acute exacerbations of congestive heart failure. As with all questionnaire studies, patient recall, misunderstandings of terms, and patient selection may have affected results.
The study was limited also by the willingness of only 14 of 48 randomly selected rehabilitation program directors to participate in the investigation. Volunteer bias might limit the validity of our findings due to regional variation in advance directive laws and media coverage of advance care planning. The 14 study centers, however, represented a wide geographic distribution, making an important effect from this source of bias unlikely. Also, the study site program directors indicated that they did not promote advance planning in their curricula; only one study center, which enrolled 15 study patients, discussed advance directives at all, and none of the centers discussed withholding or withdrawing life supportive care. It is unlikely, therefore, that the study overestimated the interests of cardiovascular rehabilitation patients in advance planning because of volunteer bias. Moreover, the random selection process used to invite centers to participate in the study allows greater generalizability of our findings compared to the SUPPORT Project results, which represent data from patients with acute congestive heart failure hospitalized in five nonrandomly selected urban medical centers.6
Our data indicate that patients regard cardiovascular rehabilitation programs as acceptable sites for advance planning education. These sites fulfill patients’ desires to have advance planning occur in an outpatient setting before end-of-life decisions become imminent. Also, group educational sessions within rehabilitation programs allow family members to participate and better understand patients’ end-of-life wishes if surrogate decision-making is later required. Group discussions in the context of a medical educational program address recent recommendations that better communication at the patient-surrogate-physician level is needed to improve congruence between patients’ end-of-life wishes and the life-sustaining care that they actually receive.20 Family participation also addresses the emerging recognition that patients perceive advance planning as a social process intended to safeguard family needs; advance planning does not exist solely within the physician-patient relationship.21
Additional studies are needed to determine whether end-of-life education in cardiovascular rehabilitation programs would result in valid advance directives. A recent study of advance planning education in pulmonary rehabilitation programs demonstrated enhanced adoption of advance directives, more patient-physician discussions, and greater confidence that physicians understood patients’ end-of-life wishes.7 Because of the multiple factors that hinder effective advance care planning, however, the educational effect was incomplete. Nevertheless, the present investigation demonstrates patient receptiveness to educational programs within cardiovascular rehabilitation that may provide an opportunity to introduce meaningful advance planning to the large population of patients with cardiac conditions.
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Acknowledgements |
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Footnotes |
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Received for publication March 5, 1999. Accepted for publication December 2, 1999.
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This article has been cited by other articles:
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  M. Svantesson, P. Sjokvist, H. Thorsen, and G. Ahlstrom Nurses' and Physicians' Opinions on Aggressiveness of Treatment for General Ward Patients Nursing Ethics, March 1, 2006; 13(2): 147 - 162. [Abstract] [PDF]
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 T. Sinuff, D. J. Cook, G. M. Rocker, L. E. Griffith, S. D. Walter, M. M. Fisher, P. M. Dodek, P. Sjokvist, E. McDonald, J. C. Marshall, et al. DNR directives are established early in mechanically ventilated intensive care unit patients: [Les directives PDR sont etablies tot chez les patients sous ventilation mecanique a l'unite des soins intensifs] Can J Anesth, December 1, 2004; 51(10): 1034 - 1041. [Abstract] [Full Text] [PDF]
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 G. Rocker and D. Heyland New research initiatives in Canada for end-of-life and palliative care Can. Med. Assoc. J., August 19, 2003; 169(4): 300 - 301. [Full Text] [PDF]
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