Decision making in CPR: attitudes of hospital patients and healthcare professionals

Abstract

Introduction

No Australian studies reported to date have examined patient preferences regarding CPR decision making. International studies suggest that most patients do not consider discussions about CPR preferences to be cruel or insensitive,² and most wish to participate in decisions regarding CPR and other life-sustaining therapies.³ However, many patients are unable to participate during the final stages of life-threatening illnesses.⁴ The use of advance directives has been proposed as a means by which competent patients may ensure that their wishes will be carried out.

Advance directives are written or verbal statements in which patients set out their preferences regarding life-sustaining treatment in case they later become incompetent. Advance directives have received considerable attention in the United States,⁵ where they have widespread legal recognition,⁶ but have received less publicity in Australia. In the absence of advance directives, CPR decisions are generally made by healthcare professionals in consultation with patients' families.⁷

The aim of this study was to compare the opinions of patients and healthcare professionals about several aspects of CPR: who should be involved in making the decision, what issues are considered important, and how these decisions should be communicated.  

Methods

Survey
We carried out a cross-sectional survey of healthcare professionals (doctors, nurses and allied health professionals) and patients at the John Hunter Hospital, Newcastle, New South Wales, in June 1994. The John Hunter Hospital is a 700-bed teaching hospital in an urban area. The survey formed part of a larger study that aimed to compare patients' and healthcare professionals' attitudes and knowledge about CPR.

Survey questions were developed by reviewing published articles, incorporating questions from previously administered surveys,^8,9 and consulting experts in the fields of ethics and questionnaire development. After pilot testing, the questionnaire was modified to incorporate the suggestions of a sample of patients and healthcare professionals at a local district hospital.

The questionnaire included questions on sociodemographic information (age, sex, marital status, educational, religious and ethnic background) and self-reported health status. Respondents were then asked:

• whether doctors should ask patients if they would like CPR should they require it;

• whether patients have the right to choose or refuse resuscitation;

• who (from a list of people) should be involved in CPR decision making and who should be the main decision maker;

• which of eight issues listed were important in CPR decision making;

• whether discussing CPR was cruel or insensitive;

• whether they had discussed CPR and, if so, with whom;

• whether they would like patients' views about CPR to be expressed in writing before or soon after admission to hospital; and

• whether they would like patients' views about CPR to be included in medical records.

The survey was administered to all healthcare professionals working over a two-day period at the John Hunter Hospital and to all eligible inpatients over an adjacent two-day period. Self-complete questionnaires were delivered by hand and collected as soon as they had been completed.

Patients were initially screened by one of the principal investigators in consultation with a nursing unit manager and excluded if they were regarded as unable to complete the questionnaire or could not understand English. The remaining patients were asked by trained interviewers to participate. After consent was obtained, a Mini Mental State Examination (MMSE) was carried out to assess cognitive status. Patients with an MMSE score less than 24 were excluded, as this may indicate incompetence.¹⁰

Statistical analysis
Data were analysed with SPSS for Windows.¹¹ Continuity-corrected chi-square analysis was used to compare the sociodemographic variables and the responses of patients and healthcare professionals for each questionnaire item.

Ethical approval
The Hunter Area Health Service Research Ethics Committee and the University of Newcastle Research Ethics Committee approved the study.  

Results

Respondents
Of the 803 questionnaires delivered to hospital staff, 511 were returned -- a response rate of 64%. Of these respondents, 148 were doctors, 312 were nurses and 51 were from other healthcare professions, including physiotherapy, social work, occupational therapy, speech therapy and nutrition and dietetics. There were 443 adult patients in the John Hunter Hospital at the time of the study; 183 were excluded because of dementia, neurological impairment or delirium (110 of those excluded), incompetence (35), visual problems (24), psychiatric illness (9), or because they were undergoing procedures (5). Of the 260 remaining patients, 152 completed the questionnaire -- a response rate of 58%.

Healthcare professionals were more likely than patients to be younger, female, have tertiary qualifications and report being healthy. Healthcare professionals and patients did not differ in terms of marital status, religion or ethnic background.

Patient involvement in CPR decision making
Patients and healthcare professionals differed significantly in their responses to whether doctors should ask patients if they would like CPR should they require it (P < 0.001): 23% (95% confidence interval [CI], 16%-30%) of patients and less than 1% (95% CI, 0-2%) of healthcare professionals thought that doctors should never ask patients, whereas 30% (95% CI, 22%-37%) of patients and 41% (95% CI, 37%-46%) of healthcare professionals thought that they should always ask patients. The remaining respondents were unsure or thought it depended on the patient's circumstances.

There was also a significant difference in the way healthcare professionals and patients responded regarding the right to choose or refuse CPR (P < 0.001): 32% (95% CI, 25%-40%) of patients and 1% (95% CI, 0-2%) of healthcare professionals felt that patients should never have this right. Fewer patients (34%; 95% CI, 26%-42%) than healthcare professionals (67%; 63%-71%) believed that patients should always have the right to choose or refuse resuscitation, and the remaining respondents thought it depended on the patient's circumstances.

Who should be involved in decision making
More than 80% of patients and healthcare professionals indicated that patients and their doctors are important in CPR decision making (Table). Approximately half the respondents regarded the patient's partner and family members as important, but only a third regarded nursing staff as important decision makers. Interestingly, 47% (95% CI, 41%-52%) of nurses believed that they should be involved, whereas only 23% (95% CI, 16%-31%) of doctors and 24% (95% CI, 13%-37%) of allied health professionals believed that nurses should be involved. A significantly lower proportion of patients than healthcare professionals indicated that patients and their partners are important in making the decision.

Approximately two-thirds of respondents identified the patient and less than one-third identified the doctor as the person who should be the main decision maker. There was a significant difference in the way healthcare professionals and patients responded. Fewer patients (55%; 95% CI, 47%-63%) than healthcare professionals (85%; 95% CI, 82%-88%) thought the patient should be the main decision maker, whereas 29% (95% CI, 22%-38%) of patients but only 14% (95% CI, 11%-17%) of healthcare professionals thought the doctor should be the main decision maker. The other respondents identified nurses, partners or family members.

Important factors in the decision
The patient's wishes, diagnosis and quality of life were identified by at least two-thirds of all respondents as important factors in CPR decision making (Figure). Patients were less likely than healthcare professionals to regard patient's wishes (P < 0.001), diagnosis (P < 0.001) and quality of life (P < 0.001) as important, but were more likely to regard age (P < 0.001), family wishes (P < 0.01), mental state (P < 0.03) and social circumstances (P < 0.01) as important.

Discussing CPR
Most respondents (82% in both groups) did not think discussing CPR was cruel or insensitive. Although 92% (95% CI, 86%-96%) of patients and 96% (95% CI, 94%-97%) of healthcare professionals (P < 0.001) indicated that they had family members who could make decisions for them if they were unable to, only 29% (95% CI, 22%-37%) of patients and 57% (95% CI, 52%-61%) of healthcare professionals (P < 0.001) had discussed with others whether they would like CPR. For all respondents, any discussions that had taken place were with partners (37%; 95% CI, 33%-41%), and/or family members (26%; 95% CI, 23%-30%) and/or doctors (3%; 95% CI, 2%-4%).

Advance directives
More than half the respondents (47% [95% CI, 39%-55%] of patients, 69% [95% CI, 64%-73%] of healthcare professionals; P < 0.01) preferred to express their wishes about CPR in writing before or soon after being hospitalised. The remaining respondents preferred to tell a family member or close friend about their wishes.

About two-thirds of all respondents indicated that they would like their views about CPR to be part of their medical records. Fewer patients (60%; 95% CI, 52%-68%) than healthcare professionals (85%; 95% CI, 81%-88%) wanted their views in their medical records (P < 0.001). The remaining respondents were either uncertain or did not wish to have their views as part of their records.  

Discussion

This study has several flaws. The study uses a self-report questionnaire, and the low response rate among patients suggests that the group may not have been representative of the population as a whole. Indeed, there is likely to have been a systematic bias towards those who were willing to discuss CPR. Despite this, the findings of this study are of interest, particularly as the study sampled inpatients and had methodological strengths, including a process for the assessment of patient competence and the use of trained interviewers who were not members of the patients' own healthcare team, and thus less likely to influence their participation in the study or their responses to the questions about CPR.

International studies have demonstrated that most patients would like to be involved in CPR decision making.¹² Layson et al, reviewing international published studies, found that 52%-87% of patients had considered their preferences for life-sustaining therapy (CPR and admission to intensive care) and wished to discuss their preferences with their doctors, but few did so.¹³ We found that 80% of patients believed they should be involved in CPR decisions, but only 29% had discussed CPR with their doctors or their families.

Forty-seven per cent of patients in this study would have liked to express their wishes regarding CPR in writing, either before admission or shortly after. The remainder preferred to tell a family member or a close friend. However, very few patients reported giving advance directives. There are few data to validate routine use of advance directives in hospitals. In the largest study to date that looked at the introduction of advance directives in routine care, their use did not affect patient-physician communication, physician's knowledge of patient preferences, the number of patients receiving ventilation or the use of hospital resources.¹⁴ Interestingly, that study was based upon the extensive use of nurses to assess patient preferences and communicate these results to physicians.

Hospital staff appear to place more importance upon the role of patients in CPR decision making than patients do. This has been noted in previous studies of patient preferences about decision making,^15,16 leading commentators such as Ende et al to suggest that the current emphasis upon patient autonomy arises more from normative ethical reasoning than from patients' actual preferences.¹⁶

Other researchers suggest that this is a misconception arising from combining several different aspects of decision making into a single question. Deber and Baumann suggest that shared decision making has two parts:¹⁷ problem solving, in which an expert identifies diagnostic and treatment options and expected risks and benefits, and decision making per se, in which the doctor and patient together determine an appropriate course of action.¹⁸ According to Deber et al, "given the choice between abiding by the decisions of a paternalistic provider and being handed a stack of medical books and being told to figure out what they wish to do, most patients unsurprisingly opt to hand over control to a trusted provider".¹⁸ Both these options are probably inappropriate, and if given a wider choice patients are unlikely to opt for unilateral decision making. Our study suggests that, despite differences between the views of healthcare professionals and patients, the overwhelming majority of both groups support patient and doctor involvement in shared decision making about CPR.

Who else should be involved in CPR decision making? Both patients and healthcare professionals believe that partners and some family members should be involved. Surprisingly, only 36% of patients believed that nurses should be involved in these decisions. The reasons for this are likely to be complex. There is no doubt that nurses have a genuine stake in discussions about resuscitation. When a patient has a cardiac arrest, nurses are faced with an ethical decision: to follow their own ethical standards, or to follow the protocols documented in patient notes and hospital procedures, if such documentation exists. Within this context it is interesting to note that in a recent study of American critical care nurses 16% reported that they had participated in euthanasia or assisted suicide, many without the knowledge of physicians, patients or patients' surrogates, and 4% reported that they had hastened a patient's death by only pretending to apply life-sustaining treatment ordered by a physician.¹⁹

Nurses are independent moral agents, and there are good reasons for nurses to be involved in CPR decision making. However, there are considerable practical difficulties as nurses care for patients in shifts, and it is not possible to involve every nurse who looks after a patient. It is clearly inadequate to include only one nurse, and then to document "nursing staff in agreement". Perhaps some of this uncertainty filters through to patients. Without continuity of nursing care, patients are unlikely to consider nurses to be major participants in CPR decision making. In addition, the professional image of nurses as moral agents in their own right may not have been communicated adequately to patients or other healthcare professionals. Either way, this finding challenges the notion of "nurse as patient advocate".

Differences between staff and patients in preferences about CPR decision making may influence the way decisions are made in hospital and limit the capacity for healthcare professionals to act as patient advocates. This suggests that the proper role for advance directives and the process of CPR decision making requires further study. The effect of determinants such as age, health status, education and religion on CPR decision making also requires further research.

Simplistic assertions of autonomy or of the theoretical moral or legal value of advance directives without consideration of the importance of care, compassion or clinical context are clearly inappropriate. This study suggests that both healthcare professionals and patients see decision making at the end of life as a complex, shared process rather than a sterile abstraction of expert information disclosure followed by patient self-determination.  

Acknowledgements

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