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Oncology nurses' perceptions of their role in resuscitation decisions

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Madeline Bass, BSc (Hons), RGN

Palliative Care Nurse Specialist, Ipswich Hospital NHS Trust, Suffolk

This paper will examine the results of a small-scale research study carried out in June 2000 on nurses working in an acute oncology and haematology unit. The research examined how some of these nurses felt about resuscitation decisions for oncology patients. It questioned what they felt their role was, if any, in such decisions and if this role was then fulfilled in practice. A phenomenological approach was used with semi-structured questionnaires. The main aims of the research are shown in Box 1.
This paper will examine the results of a small-scale research study carried out in June 2000 on nurses working in an acute oncology and haematology unit. The research examined how some of these nurses felt about resuscitation decisions for oncology patients. It questioned what they felt their role was, if any, in such decisions and if this role was then fulfilled in practice. A phenomenological approach was used with semi-structured questionnaires. The main aims of the research are shown in Box 1.

Nurses from the inpatient and outpatient areas were questioned and results were examined using thematic analysis. Findings revealed differences in how the nurses' perceived their role and the actual reality of their role. The term resuscitation in this paper means the use of basic and advanced life support when a patient's heart or lungs stop working normally: it does not indicate withholding or withdrawing any other treatment or care, as this is a separate legal issue (BMA and RCN, 1993).

Background to the study
A full literature review (Medline and Cinahl, 1995 to 2000) revealed that no previous studies had examined nurses' perceptions of their role within resuscitation decisions for oncology patients.

Everyone who dies essentially experiences a cardiac arrest, in that his or her heart will stop. Resuscitation, however, should be attempted only on patients with 'a good chance of successful revival for a comfortable and contented experience' (European Resuscitation Council, 1998). Resuscitation can be appropriate and desirable but may also be distressing in inappropriate situations, and a resuscitation decision is a complex one, involving legal, ethical and emotional issues (Jevon, 1999).

Kouwenhoven et al (1960) first described closed chest massage and explained that almost anyone could initiate it. Resuscitation tends to always be thought of as successful and appropriate, a view that others feel was started with Kouwenhoven et al's (1960) interpretations (Birtwhistle and Nielson, 1998; Jevon, 1999).

The British Medical Association (BMA) has developed resuscitation guidelines in conjunction with the Resuscitation Council for the UK (RCUK) and the Royal College of Nursing (RCN), (1999, 2001) in order to advise practitioners on resuscitation issues. These organisations also encourage each individual trust to produce its own guidelines on resuscitation.

The resuscitation guidelines state that, ultimately, the final decision to resuscitate lies with the doctor in charge of that patient, but that the decision itself should be a multidisciplinary one, and discussed with the patient where appropriate (BMA et al, 2001). This means that, as well as doctors and nurses, physiotherapists, occupational therapists and social workers can all be included in the decision-making process. It may well be that a member of the team who is not a nurse or doctor may have a greater understanding of the patient's wishes and have a stronger relationship with them. Resuscitation decisions should not be left solely to junior medical staff, although this often happens (BMA et al, 2001).

The resuscitation guidelines (BMA et al, 2001) list circumstances in which it may be inappropriate to resuscitate (Box 2).

In situations where a positive outcome from resuscitation is in doubt the decision should be made according to local policy, and taking the principle of non-maleficence into account (Birtwhistle and Nielson, 1998). Resuscitation should be initiated if no prior resuscitation decision has been made and there are no express wishes made by the patient, otherwise criminal charges could result (Dimond, 1990). However, inappropriate resuscitation can deny a dignified death, cause distress to relatives and may be an inappropriate use of valuable resources (Jevon, 1999).

The development of Macmillan nurses and palliative care nursing has highlighted the empowerment of dying patients (Stephens, 1986). There should be sensitive exploration of the patient's wishes and if death is near then resuscitation is deemed to be futile (BMA et al, 2001). Although many would recognise the sanctity of life (Hayward, 1999), others would argue it should be balanced with quality of life, which is a more subjective judge-ment (BMA et al, 2001).

Although it may be difficult to raise the subject of resuscitation with a patient or their relative/carer, a 30-40% inconsistency has been found between what practitioners think a patient would want and want they really do want in terms of resuscitation, hence the importance of this discussion (Hayward, 1999). It is worth mentioning that a decision not to be resuscitated tends to apply only while the patient is in hospital; that same patient could collapse while in the street and have attempts at resuscitation made on them.

The nurse's role in resuscitation decisions has been identified as one of advocacy and accountability (Jevon, 1999). Patient and relative education is also an important role for the nurse in such decision making. However, advocacy may be difficult for inexperienced nurses, as well as raising the subject of resuscitation in the first place. Jevon (2001) writes that, historically, nurses have tended to leave resuscitation decisions to medical staff, perhaps on the basis that it is easier to follow medical orders than to be the patient's advocate and promote his or her wishes. However, he argues that nurses have a responsibility to act as advocate where able, as outlined in the Nursing and Midwifery Council's Code of Professional Conduct (2002). Birtwhistle and Nielson (1998) add that, although death was one of the activities of daily living outlined by Roper et al (1990), the subject is often left out of many clinical assessments as a result of nurses' own fear, poor training in communication skills, and out of fear that patients will become upset.

Patients least likely to survive resuscitation are those with irreversible organ failure and widespread malignant disease (George et al, 1989). Success of resuscitation for hospitalised patients has been quoted as high as 53% but this can drop to 3-29% for survival to discharge (Jevon, 1999). Successful resuscitation can result in 'post-resuscitation disease' (Negovsky and Gurvitch, 1995) caused by the presence of metabolic toxins, cardiac failure or persistent vegetative state (Hayward, 1999).

Informed consent is thought to be a legal requirement in health-care practice, as well as a moral obligation (Thomas, 1997). It should be sought for all resuscitation decisions, preferably from patients who are deemed mentally competent; however, if this is not possible, a decision can be discussed with relatives/carers that can be used as a guide for the doctor's final decision (Marchette et al, 1993). It must be recognised that relatives/carers cannot legally make that decision for the patient, they may only advise on what the patient may want (Dimond, 1994). There is no legal basis for proxy decision-making in this country (Birtwhistle and Nielson, 1998). It has been argued that there is actually no ethical obligation to discuss resuscitation decisions when the chances of success are so low that it is to be regarded as futile (Cumming, 1995; NCHSPCS, 2002). If, however, the outcome of resuscitation is uncertain it should be explored sensitively.

It is hoped that increased discussion around the subject of resuscitation and an open approach to such decisions will lessen the fear and anxiety, which the subject at present naturally raises.

The research outline
A phenomenological approach was used for the research, to provide qualitative data. The questionnaire was tested initially using five trained nurses from within the oncology and haematology unit (both inpatient and outpatient areas). This resulted in some minor grammatical changes to the wording of the questions. Semi-structured questionnaires were used, and were given to 30 trained nurses. The nurses were randomly chosen from a total population of 58. Seventeen anonymous responses were collected. The data were analysed, and sorted into eight main themes (Box 3).

Results and discussion
The resuscitation process
When asked about their role in resuscitation most nurses answered in terms of the practical aspects of the process of cardiopulmonary resuscitation itself, not in terms of other aspects, such as decision-making.

No other questions attracted answers concentrating solely on practical aspects of resuscitation: perhaps the question needed to be re-worded. However, it is positive that the nurses felt that there was a practical role for them in the cardiopulmonary resuscitation of patients in oncology.

DissentThere was some dissent from the respondents on whether all oncology patients should be suitable for resuscitation. Some felt it was an undignified process backed up by unsuccessful research statistics. Others felt that all oncology patients, regardless of disease status, should not be for resuscitation. Those who answered so negatively gave the impression that their role was one of 'ethical protector', wanting to ensure patients and carers were not given false hope when resuscitation itself would most likely be futile. Most respondents quoted the success rate of resuscitation in hospital to be between 10 and 17%. However, one answered that it was a high as '50/50'. If some nurses feel resuscitation could be this successful, it could influence how they would discuss it with patients and their carers. It was interesting that answers varied so much within the same unit and area of nursing, reinforcing the need for further education and training on resuscitation.

Multidisciplinary approachThe nurses were asked how the role of the multidisciplinary team worked in resuscitation decisions: the majority felt strongly that it should not be solely a medical decision. They felt that other workers such as social workers, occupational therapists and physiotherapists may build up a different and perhaps closer relationships with patients and would therefore be more able to act as advocate or to support them during the resuscitation discussion. Most felt their own role was that of prompting doctors to ensure the necessary resuscitation paperwork was complete. The majority of respondents felt that the doctor in charge could only make the final decisions, but that the patient or carer should be included as well. However, not all nurses felt the patient should be included in the decision-making process. A few felt that inclusion of the patient would make discussion of the subject harder. They did not clarify why: whether it was the issue of time, or of patient distress, or of their own discomfort. It is interesting that such varied views were held; however, the assumption is that nurses' own beliefs and values very much influenced their responses.

Advocacy and accountabilityWhen asked what nurses perceived their role to be in resuscitation decisions, the majority felt strongly that they were an advocate for the patient and carer, someone to support and uphold the patient's choice. One respondent stated that assessing the patient's own perception of their quality of life, their feelings towards their illness and life expectancy, were all part of the nurse's role towards a clearer decision being made. The respondents all perceived that their role included accountability but felt this mainly consisted of prompting medical staff to fill in the correct paperwork once a resuscitation decision had been made. A few respondents perceived their role of advocacy as including protecting patients from futile resuscitation. One respondent felt there was no role for the nurse in such decision-making.

Informed consentAll of the respondents who felt patients should be included in resuscitation decisions felt that informed consent was important before a real decision could be made. However, none of the same respondents felt they could raise the subject with patients themselves. One respondent stated that patients should be told, where appropriate, 'that there is little chance of being resuscitated'. Another stated that resuscitation discussion and informed consent would give the opportunity, 'to help the patient prepare for their impending demise'. Although it may seem simpler for a doctor to make the decisions, particularly as this is the legal requirement, discussions between patients and other multidisciplinary members of staff would not be inappropriate if handled correctly.

Legal and ethical issues, and medical paternalismThe respondents were asked whether they were aware of any legal or ethical issues surrounding resuscitation. All answered that human rights were important as well as patient choice. The general theme emerged that, as stated by one nurse, 'no one else should be able to make a decision for a person when they are capable of doing so themselves'. Others felt that there was now a greater need than ever for patients to be included in any treatment decisions, mainly because of the risk of litigation. It was, however, generally felt that very few patients were ever included in such decisions within the unit, and that it tended to be a medical decision alone and therefore medical paternalism was highly present. All the respondents felt that legally it was only a doctor who could make the final decision.

Other ethical issues raised included: euthanasia, family and patient collusion, patients not being told that they had a 'not for resuscitation' status and ensuring death with dignity.

Quality of life, and hopeThe majority of respondents felt that a resuscitation decision depended on how the patients themselves perceived their own quality of life and whether the risks of resuscitation itself outweighed any benefits. A few felt that how the multidisciplinary team perceived that patients' quality of life should also be taken into account. One respondent felt that discussing resuscitation decisions with patients would cause them to lose hope. Another felt that having a 'not for resuscitation' decision made about a patient might prevent them wanting future hospital admissions. It would be hoped that, if staff took the correct attitude in such discussions, then fear would be reduced.

Disease statusThe majority of respondents felt that the stage of the patient's cancer should be taken into consideration when discussing resuscitation. Some felt that secondary spread of disease was a good reason to make a patient 'not for resuscitation'. Many of the respondents felt that once a patient was very weak and 'imminently terminal' then resuscitation would be futile, and that this may need to be explained to the patient as the disease progressed.

Other findings from the researchThe research gave some interesting themes and results, but also threw up some anomalies:

- Although the majority of respondents felt that patients should be asked about their resuscitation status, in practice the doctors usually made the decision. This shows strong evidence of medical paternalism and does not reflect the desire of the nurses for informed consent or patient choice and empowerment

- Patient autonomy versus beneficence: the respondents felt that, regardless of what a patient wanted in terms of resuscitation status, it could be overruled by a doctor, thus beneficence (doing good) could overrule the patient's choice

- Although the majority of respondents felt that cardiopulmonary resuscitation was unsuitable for many oncology patients once they reached a certain stage in their disease, they felt unable to raise the issue of resuscitation with the patients themselves. They felt that the patient should have some say within the multidisciplinary team decision, but felt unable to initiate this.

Limitations of the research
Certain variables could have affected the results:

- Despite testing of the questionnaire, many of the nurses misinterpreted one of the questions, resulting in the possibility that not all aspects of the study were fully explored

- Length and type of nursing experience: nurses who had been qualified for a longer period of time, and also those who were more experienced within oncology, may feel more confident in being involved in resuscitation discussions

- The outpatient nurses felt that anyone within that area should be resuscitated, whereas at ward level the patients were assessed more regularly

- Religion/beliefs: this may have influenced some of the answers given on the ethics of resuscitation. One respondent stated that her religion influenced most of her beliefs and attitudes to resuscitation.

Implications for practice
Although the trained nurses in this study perceived their roles in resuscitation decisions to include accountability and advocacy, the majority of them felt unable to raise the subject themselves, or to initiate such discussion with patients/carers. Addressing such issues can be highly emotive and distressing for patients, their carers and staff. However, with increasing nurse autonomy within the clinical area comes increasing responsibility. Certain nurses may be more suited to discuss resuscitation with patients/carers than other members of the multidisciplinary team. Bearing this in mind, is it fair to expect nurses to carry out this discussion if it needs to be the doctor in charge who has the final say? Guidelines on such decisions (BMA et al, 2001) state that they should be multidisciplinary and include the patient, or carer. Nurses, as well as doctors, need the confidence and training to allow them to embrace this ideal (Box 4).

This study examined nurses' perceptions of their roles in the resuscitation status of oncology patients. Results from semi-structured questionnaires were examined through thematic analysis and revealed that, although nurses perceived their role as being that of an advocate, few felt they were able to act in this way. They also perceived their role towards the patients as one of an 'ethical protector' from the prospect of a futile resuscitation procedure. Most perceived their role to include accountability, mainly making sure that resuscitation forms had been completed. None of the respondents were aware of legal guidelines on resuscitation, and most were unsure of being involved in aiding patient autonomy within a resuscitation decision. It is clear that the decisions, although finally down to the doctor in charge, should be discussed by the multidisciplinary team, particularly those members who have had involvement with the patient.

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