Clinicians are regularly involved in discussions about end of life care. Such discussions can be difficult and upsetting for all involved. “Do not attempt cardiopulmonary resuscitation” (DNAR) orders are often made when patients are too ill to take part in the discussion and relatives are then asked to help clinicians to understand what the patient may have wanted. Patients’ attitudes towards these discussions are, however, largely unknown.1 Once the order has been made it is vital that it is effectively communicated.2 The recent Mental Capacity Act 2005 has strengthened the patients’ right to make decisions in case they become incapable.3 Advanced refusals and lasting powers of attorney help to communicate patients’ wishes within a clear legal framework. Doctors will have to make decisions in the patients’ best interest according to the Act’s Code of Practice defining clear guidelines to come to a best interest decision. This will include decisions about resuscitation status.

In this study we aimed to get a better understanding of patients’ views of DNAR discussions, including the role of relatives and the means of communicating the decision. For this study DNAR applies only to cardiopulmonary resuscitation in the event of an arrest.

METHODS

This was a prospective questionnaire based study set in the general adult outpatient department of Wrexham Maelor Hospital, a district general hospital in a semi-rural area in North Wales, UK. Two documents were given to patients—a covering letter and the questionnaire itself.

The covering letter explained, in simple English, what cardiopulmonary resuscitation and DNAR orders are and what we were trying to examine. It made clear that the study would not affect their resuscitation status. The project proposal along with the questionnaire and explanatory letter was sent to the trusts internal review panel. Following review by the panel, which includes the chair of the local ethics board, it was decided that ethics approval was not required.

Most questions were of a yes/no nature. A small number were multiple choice and sections of free text were included in key areas. The only personal information collected was age (by band) and gender. We did not enquire as to the respondents’ wishes for their own resuscitation status. The questionnaire was refined after a pilot of 30 responses.

The final questionnaire was handed to patients as they registered at the outpatient clinic reception. It could then be completed in the waiting room and collected by clinic staff.

Data from the questionnaire was extracted to Microsoft Excel Spreadsheet, which was used for analysis.

RESULTS

Five hundred questionnaires were distributed in the out patient department over a period of two weeks. A total of 386 completed questionnaires were returned (77% response rate). Forty-seven of these were incomplete and hence excluded from further analysis. The remaining 339 were analysed. Of the respondents, 180 (53%) were male and 159 (47%) were female. The age distribution of the respondents is shown in figure 1.

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Figure 1 The histogram shows the age distribution of the responders in our study.

In all, 132 (39%) of the patients had previously considered their resuscitation status. None of the six patients under 21 years of age had thought about their resuscitation status. Two of the three patients over 90-years-old had thought about their resuscitation status. The percentages of patients who had already thought of their resuscitation status in three different age groups (<30, 30–60, >60) is shown in table 1.

In all, 78% of the patients expressed a desire to be consulted regarding their resuscitation status. However, 321 (95%) of patients had not had any kind of discussion regarding their resuscitation status at any point prior to this study. This is shown in figure 2.

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Figure 2 This figure demonstrates that there is disparity between the proportion of patients who wish to discuss and who have had a discussion regarding do not attempt resuscitation.

Ninety percent of the respondents said they would not find a discussion of their resuscitation status upsetting. The percentages of those who would be upset by discussion DNAR status in the three age groups is shown in table 2. Of the 10% who said they would be upset, 48% said they would like to be asked anyway, despite the anticipated upset.

In all, 89% of patients felt that everyone should be asked about resuscitation status at some point during a hospital admission. Regarding the appropriate time for discussions to take place, 14% would like to have the discussion after they became critically unwell, 33% would like to have the discussion during an outpatient clinic appointment, 37% on admission to hospital and 16% at the time of consent for surgery.

Only 40 (12%) of patients had previously been involved in discussing the resuscitation status of a relative. Overall, 87% of patients would like their relatives to be involved in discussion of their resuscitation status should they become critically ill and unable to hold such a discussion. However, 13% were against their relatives’ involvement in their DNAR decision. Of those who said no typical reasons given were: “It’s not their decision”, “It’s unfair to burden them with the responsibility” and “It would be upsetting for them”. In all, 21% of the respondents would find it uncomfortable to discuss their relatives’ resuscitation status.

Thirty three percent of patients preferred the DNAR status simply to be recorded within the main clinical notes. Of those who wanted it to be noted differently, 19% preferred a highly visible sheet in the notes, 20% felt that it should be written on their hospital wristband, 16% felt it should be marked on the wristband but in some form of code, 6.5% wanted it written on the name board above their bed and 5.5% on the name board in some form of code.

DISCUSSION

Cardiopulmonary resuscitation has a low success rate and significant complications. A third may survive an arrest in hospital and fewer when the event occurs in the community.4 The survival overall may be as low as 4%5 with a 1-year survival of around 1%. A joint statement from the British Medical Association, the Royal College of Nursing and the UK Resuscitation council recommended that resuscitation status should be discussed with patients before they get critically ill.6 Others have suggested that patients do not need to be involved in the decision although they should be told of the health professionals’ decision.7 We believe that most healthcare professionals feel that patients should be involved, if that is possible, but in practice discussions are often left until patients are too ill to be involved. We were unable to identify any literature studying the patient perspective on this problem despite an extensive search.

Our study asked whether patients want these discussions. The answer was an overwhelming “yes”. A third had thought about the issue before receiving our form whatever their age. Ninety percent felt this would not be upsetting and half of those who felt it would still wanted the discussion. Only a very small proportion appeared to have been asked about their own resuscitation status. The Mental Capacity Act puts the onus on doctors to find out whether their patients have made any provisions under the Act. It also gives doctors the opportunity to actively engage their patients in a discussion about the provisions they would like, including resuscitation. This has the potential to reduce the number of patients who come to DNAR discussions de novo when they are already critically ill or incapacitated.

If we accept that making these decisions with the patient is desirable the discussion needs to precede a terminal deterioration. Patients appeared to agree with this reasoning. Only a seventh of patients wanted the discussion left to a time when they were critically ill and a third wanted the discussion in the outpatient clinic, if that were possible.

We were interested in the role of relatives and carers who have a role in finding a best interest decision under the Mental Capacity Act if the patient lacks capacity or if the patient wants them involved. The vast majority of our patients wanted relatives involved if they lacked capacity but appeared to recognise the burden this might represent. A significant minority did not want relatives involved. This creates two significant problems: firstly to make sure that relatives are not involved unless this is wanted by the patient, secondly to make relatives aware of the potential gravity of a DNAR discussion if they are chosen to get involved. Only by seeking the discussion before a patient loses capacity can all these wishes be reconciled.

Cardiopulmonary resuscitation in a patient who has stated their desire not to be resuscitated is indefensible. The means of recording and communicating the decision is therefore vital. Two thirds of our patients wanted more than a simple entry in their clinical notes but there was no a clear preference among the choices that we offered.

We believe our study is the first to demonstrate patients’ desire to have discussions about their resuscitation status earlier than is currently practised. We, as clinicians, appear to be the obstacle. We are planning work to better understand this resistance and look forward to a future, in which all patients will be asked their views on their resuscitation status as a matter of course.

CONCLUSION

This study demonstrates that patients understand the problems of resuscitation status. They want early discussions and better communication of the decisions, even though they recognise the potential upset this might cause. It appears that resistance to these discussions is not from patients. The Mental Capacity Act challenges and enables doctors to have such discussions early.