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The patient experience of receiving bad news from health professionals

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People always remember being given bad news, no matter how well it is delivered. Health-care professionals have a responsibility to minimise the trauma of this experience by being well prepared (Radziewicz and Baile, 2001).

Pauline McCulloch, RGN, MCGI, PG Dip Palliative Care, Dip Counselling

Nurse Consultant Cancer Services (GI Tract), Colchester General Hospital, Colchester, Essex

The information must be delivered to patients at their pace, and the bearer of the news should demonstrate empathy and maintain some realistic hope (Ptacek and Eberhardt, 1996).

Clinicians seem to favour a systematic process involving preparation, delivering the news and further information. Two such models are A 10-Step Approach (Kaye, 1996) and How to Break Bad News (Buckman, 1992). These stipulate that the recipient of the bad news must have the opportunity to ask questions about what has been said. Clinicians should always check that patients understood what was said to prevent later confusion. Non-verbal aspects of communication are also important, such as seating, eye contact and tone of voice.

Some health-care professionals perceive that patients wish to have someone with them, and that they might like some physical contact, such as a hug or a touch while news is given. However, other research suggests what patients want is for the information to be delivered in a straightforward, honest and compassionate manner (Kim and Alvi, 1999).

Breaking bad news is seldom a single event. News needs to be digested, with time to think of further questions and a further opportunity to ask them. All health-care professionals should provide ongoing support to patients and carers and need training on breaking bad news (DoH, 2001).

A study of users’ experiences

This paper reports on a pilot study of users’ actual experiences of receiving bad news after being diagnosed with cancer.

The findings for this pilot, carried out at Essex Rivers Healthcare NHS Trust, will form the basis for the development of a new multiprofessional education package that reflects users’ experience. There will be input from members of a multiprofessional team, set up to provide recommendations (Girgis and Sanson-Fisher, 1998; Ptacek et al, 2000).

The questionnaire was designed by the author and the NHS trust’s customer services manager to address issues local to Essex Rivers Healthcare NHS Trust. Boxes 1-3 summarise the questions asked. The interim findings will form the basis for a review of current trust guidelines to inform future education on breaking bad news.

A multiprofessional task

Most research into breaking bad news focuses on the actual event and the experiences of doctors (Farrell et al, 2001). Many professionals are prepared to criticise the skills of those who deliver this news but rarely question the way patients are supported in the aftermath. This is where real multiprofessional teamwork begins - we all have a role to play in informing and supporting patients throughout their experience. How bad news is broken will affect patients’ subsequent interactions with health-care professionals. This was addressed in the questionnaire by asking participants to comment on further contact/visits with health-care professionals.

Preparation and ethical approval

As consultant surgeons predominantly deliver the bad news, it was essential that they were willing to back the project. I spoke to each one and then sent them a copy of the proposal and the patient questionnaire. All were happy to support the study once they had been reassured that individual practice would not be identifiable.

The ethics committee also wanted to see this anonymity demonstrated. The committee required patients to opt into the study rather than opt out. It advised that patients must not be approached about the study at the first clinic visit but only at their second one, as it was felt that during the first visit they would be in too vulnerable a state to give informed consent. At the patient’s second appointment the clinic nurse or nurse specialist gave patients an information leaflet and form with a pre-paid envelope to opt into the study.

Methodology

The study mixed qualitative and quantitative methods. The questionnaire covered:

- The setting in which the diagnosis was given

- Language used by the health-care professional

- Issues of privacy and dignity at time of diagnosis

- Contact and support from other health-care professionals in the first month after diagnosis

- Whether health-care professionals acknowledged the diagnosis

- What aspects made the experience good?

- What aspects made the experience not so good?

The patients were sent questionnaires at least a month after their diagnosis. By this time they would have interacted with other health-care professionals.

In the qualitative area of the questionnaire patients were asked to describe in their own words their experiences around particular issues. Common themes arose from these comments.

Patients were offered a one-to-one confidential interview with the customer services manager but nobody took up this option.

A target was set for 60 respondents but in fact there were 47, due to unforeseen circumstances.

Results

Pre-clinic issues - Seventy per cent of respondents (32) stated that they would have liked to have had prior notification to bring someone with them to the clinic appointment. In the event, 75% (35) did bring someone along anyway, and reported that they viewed this as positive thing to do.

Being given the diagnosis - Predominantly patients were given their diagnosis by the consultant, with only one reporting that it was given by a nurse.

Standing or sitting - Thirty-three per cent of respondents (15) stated they did know who everyone was at the consultation and that there were not enough seats for everyone present. Consequently, some people were standing, which is at odds with recommendations around non-verbal issues (Maguire and Pitceathly, 2002). The consultant was standing up while giving the diagnosis, according to 20% of respondents (10).

Similarly, 20% of respondents reported that they were given their diagnosis when only partially dressed. It is not clear if this was the same 20%.

Both standing and talking to patients while they are undressed can contribute to making the person feel more vulnerable and not an equal in the discussion process. The giver of bad news automatically assumes a position of power over the patient (Buckman, 1992). The lack of chairs may well have have been the reason for consultants standing, rather than a wish to assume power over the patients they were talking to.

Language used - Every respondent reported that their diagnosis was stated clearly and that they did understand what had been said. Fifty-five per cent (25) also recall that they were asked if they understood. This is a vital skill in good communication, ensuring the sender and the receiver are speaking about the same thing (Kaye, 1996).

Ninety per cent of patients (42) reported that the manner in which they were told was considerate, and less than 10% (5) felt the experience was impersonal. Similarly, 90% felt able to ask questions which were received and answered satisfactorily. Again this is considered a key component of communication skills, particularly relevant to breaking bad news (Kaye, 1996; Maguire and Pitceathly, 2002).

Written information regarding the diagnosis, its impact and treatment options available was given to 90% of respondents (42), who found it easy to understand.

Ten per cent of patients (5) reported that they felt their privacy had not been respected or maintained throughout the consultation, while 5% (2) reported feeling a lack of dignity. There should be no loss of privacy or dignity for any patient.

Other health-care professionals - Ninety per cent of patients (42) had the opportunity to discuss their diagnosis with the clinical nurse specialist after being given the news. In the qualitative part of the questionnaire, 90% of patients singled out the clinical nurse specialist as the most useful point of contact after the diagnosis. Reasons ranged from her being there with the patient, interpreting information, telephone contact and being a point of continuous support.

Ward nurses were perceived positively in terms of the support they provide in that they are a listening ear, willing to answer questions and acknowledge the emotional impact the diagnosis has had.

What was good - Radziewicz and Baile (2001) remind us that the delivery of bad news can be done well. The recurring issues around finding this emotionally charged experience bearable were that the news should be given in an honest, straightforward manner, delivered with sensitivity (Department of Health, 2001; Kim and Alvi, 1999). Above all, patients reported a positive experience if they felt things were moving quickly and they had an outline of their careplan, preferably with treatment and investigation dates. This is in keeping with proposals in the NHS Cancer Plan (Department of Health, 2000). Several patients noted that being given written information to support the bad news contributed to a more positive experience.

The arrangement of the room so that they were made to feel part of the discussion was considered important by many patients. The recurring key words here were:

- Calm

- Openness

- Honesty

- Straightforwardness

- Professional yet friendly demeanour

- Support

- Information.

This supports previous research suggesting that when clinicians seem to like people they are perceived as better communicators (Janisse and Vuckovic, 2002).

Not so good experiences - When asked about the worst part of the experience, many patients reported this to be the number of personnel in the room. This made them feel as if they were on show, not allowed to experience this life-changing experience with only the essential people present.

While most patients recognised it was inevitable, they felt that the time lag between investigations and obtaining the results contributed to their bad experience.

The lack of a private, quiet room was also mentioned. This was compounded by having to wait in a busy clinic corridor. While the need to deliver bad news in a private setting is well documented, this is not always practical in a busy outpatient setting (Kaye, 1996; Maguire and Pitceathly, 2002, Ptacek and Ptacek, 2001).

Discussion

This study found that patents were satisfied with the language used when being given bad news. This reflects the growing move for all clinicians to receive more education about breaking bad news, with particular emphasis on the language used.

Patients’ main concern seemed to be the number of people in the room. While it could be argued that the best way for health-care professionals to learn and reinforce the theory is to see it in action, this must be balanced by thinking of the patient’s needs for privacy at such an emotional time. The potential conflict for the patient is to react to the news while feeling uncomfortable at being observed in this raw state.

Patients need to be consulted about the inclusion of additional people during their consultations. Health professionals should ask the patient, or display a sign stating that this occurs, and that people have the right to refuse.

This study has begun to address the issue of involving users in evaluating current services to shape those of the future. We have invited one of the patients who took part to join the working party developing education packages and examining the guidelines on breaking bad news. It is vital that we listen to patients’ experiences. A bad experience stays in the memory and clouds future interactions with health-care professionals.

Limitations

The author hoped to include 60 patients in the study, but ended with only 47. However, it was felt that this gives a good enough snapshot of patients’ experiences of being given bad news on which to base future recommendations at the trust.

The other potential limitation was that the questionnaire was designed specifically for this study - in order to answer what we set out to examine. The questionnaire survey would need to be repeated in another centre and the results then compared to validate it.

Proposed changes to the service

The two main changes to the service should be to reduce the number of personnel in the room at the time bad news is delivered and to ensure that the patient has somebody of their choice present at the time. This will be addressed in the guidelines.

Two patients also pointed out that clinicians must always remember that, although they have broken bad news many times, it is the first time for the patient. The patient will always remember this moment, whether the experience was good or bad (Radziewicz and Baile, 2001).

The way forward

A multiprofessional, cross-boundary working group, which includes user representation, has been set up. The remit of this group is to develop self-directed educational packages for all levels of staff. These packages will be generic rather than focusing on bad news around cancer. A wide range of clinicians are having input into this package. The group is nearing the completion of the educational programme and is currently investigating funding to develop a CD-Rom. Over the next six to 12 months it will also review trust guidelines on breaking bad news, make any necessary alterations, and develop an audit tool to assess their effectiveness.

The research will be repeated in two years’ time to examine any changes in patients’ experiences following the introduction of the training packages.

Conclusion

This research showed that consultants use appropriate language and have good communication skills when it comes to delivering bad news. However, action is needed to improve the negative reporting on the setting for delivering the news, and the fact that in some cases patients were not fully dressed. These problems can be remedied easily by raising awareness among health professionals of how important patients consider them to be.

In recent years much energy, education and resources have gone into the language aspect of communication and breaking bad news, and this is now bearing fruit. It is now time to recognise the equal importance of the non-verbal aspects of communication.

Acknowledgements

The author would like to acknowledge the support of Sue Selleck, Customer Services Manager; the Consultant Surgeons; the Colorectal and Breast Clinical Nurse Specialists; the Clinical Audit Department, Essex Rivers NHS Trust; and all the patients involved.

 

 

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