The aim of this project is to improve communication and dialogue between patients with palliative and terminal illness and their healthcare professionals about Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions.
Four videos hosted on a website aim to describe some of the main areas to consider when discussing this important topic. Videos were co-directed by patients, in order for them to help explain relevant issues surrounding this sensitive subject. In addition, videos for healthcare professionals with guidance and tips on how to start these conversations sensitively and professionally are also available on the website.
We also aimed to clarify some of the common misconceptions surrounding CPR and DNACPR towards the end of life in a news article. This project is referenced in this Guardian article and can be found here.
Aims and objectives
The aim of this project, entitled ‘TalkCPR’, is to improve communication and dialogue between patients and their healthcare professionals about Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)decisions.
Before reading this submission, we suggest viewing the short videos we produced with patients and carers:
Cardiopulmonary Resuscitation or CPR is an emergency procedure, with the aim of restarting heart and breathing when these have ceased to function. This is a medical emergency, but for many it is also a natural process at the end of life.
Talking about CPR is important, and in fact it is best to discuss it when a person is still reasonably well, and can express an opinion on whether the intervention is something they would consider appropriate for themselves or not, should it become necessary in future. At this point they may also choose to not further discuss this topic, if it is felt to be distressing.
Communicating all this in a respectful and supportive way requires skill and once it has been discussed it should be documented very clearly, for other healthcare team members to know what discussion has been held. There is a need to explain this procedure better within society.By increasing clinicians’ opportunities to learn about examples on how to start these conversations, these resources can help spread the concept of allowing a natural and anticipated death.
We set out to produce two videos for patients and carers who wanted to know more about this topic and wanted it as a resource to help shared decision making with their clinician. Two further videos were developed to provide healthcare professionals with tips and approaches to start this challenging topic. The project set out to investigate the both the impact of these videos and their acceptability. This was done with nurse, doctor and patient/carer participation.
The videos were also co-produced and scripted by patients and healthcare professionals, and all Welsh NHS health boards and trusts were involved in setting content. A Barriers and Aims diagram was set up at the start of the project and can be found in the supplementary materials provided.
Reasons for implementing your project
NICE Quality Standard QS13 states that: 'People in the last days of life should be identified in a timely way and have their care coordinated and delivered in accordance with their personalised care plan'.
Frequently in healthcare settings, DNACPR discussions can be part of a rushed, formulaic process, when a patient has acutely deteriorated. Gathering and contextualizing all the information at such times is very challenging, but a UK Court Of Appeal ruling has stipulated that it is unlawful not to discuss DNACPR forms that have been placed in a person's medical notes with them and/or their proxyunless the discussion is thought to potentially cause harm.
Communicating DNACPR in an acceptable and understandableway requires skill and once it has been discussed it should be documented very clearly, for other healthcare team members to know what discussion has been held.
- Use of the new All Wales DNACPR form, which came into effect during 2015 for all healthcare settings in Wales. This form is used to document communication between healthcare professionals and patients/carers.
- Acceptability and readiness of patients and healthcare professionals to use communication videos on this topic, to help understand what CPR actually is
- Roll-out of the All Wales DNACPR form across Wales, and its uptake and use as a communication tool between healthcare professionals, patients and carers
- Roll-out of TalkCPR videos. Four videos (all aimed at patients, carers and healthcare professionals) co-produced and co-directed by patients and Dr Mark Taubert under the auspices of the All Wales DNACPR Policy Implementation Group (AWDPIG) and other stakeholders including patients and a charity (Byw Nawr- Dying Matters in Wales).
Patient Liaison Groups were involved in the planning and review process of the videos and TalkCPR website. Four separate baseline assessments were carried out and are detailed in Methods and in Supplementary Materials. The videos have been disseminated to all Health boards and Trusts in Wales and a general public roll-out is planned for mid-2016, using a social media campaign with the hashtag #TalkCPR.
How did you implement the project
NICE quality statements: People approaching the end of life and their families and carers are communicated with and offered information in a sensitive way, at a time when it is helpful and with respect for their needs and preferences.
A PDSA cycle approach was used to test whether videos were seen as a meaningful change and how acceptable and sensitive they were. Four sets of results are presented:
- A survey given to 25 nurses measuring pre- and post TalkCPR video-viewing impact metrics
- A survey given to 15 junior doctors measuring pre- and post TalkCPR video-viewing impact metrics
- A summary of a hospital patient-liaison focus group session
- A comparison of 2015/2016 DNACPR form documentation with comparison to audit results from previous years Pre- and post-video questionnaires were undertaken with a group of nurses and doctors (at separate teaching events) in order to elicit their readiness to see, view or even recommend a video about DNACPR to someone else, and to also elicit how appropriate they found this.
A focus group session was held with a patient liaison group during which the TalkCPR videos were shown and subsequently discussed. Survey questions for doctors and nurses were:
1). How ready do you feel to answer questions on Do Not Attempt CardioPulmonaryResuscitation(Dnacpr) planning decisions from patients?
2). How ready or unready is the general public to see an information video on DNACPR?
3). How ready are patients/carers to see a video about DNACPR in a clinical area, ie a hospital bed or GP practice waiting room?
4). How ready would you be to show an information video to palliative patients/and or their carers on this topic, if you had a portable computer that made this easy?
5). How ready would you feel to suggest a video on the topic of DNACPR to another member of staff?
6). Do you think palliative care patients are ready for such a video, as a newer form of communicating complex areas of care if it can add-on to vital face-to-face discussions?
Nurses and doctors filled in the questionnaire (baseline survey), then watched the TalkCPR videos and then filled in the questionnaire again (post intervention survey) on a separate sheet of paper, to measure if there had been any change in perception after watching videos. They scored from 0-10 (0 = not ready at all, 10 = very ready)
The overall roll-out of the new DNACPR policy and its communication tools across Wales was paid for by NHS Wales and was funded through the ‘One Wales’ palliative care funding programme. This included costs for printing All Wales DNACPR forms and producing patient/healthcare professional resources including videos.
Nurses: Average score across 25 general nursing participants through all questions was 6.12 out of 10 initially, and increased to 8.28 out of 10 after watching the TalkCPR videos . A breakdown is provided in the graphs (Graph 1 and 2) in supplementary materials. Doctors: The above survey was also given to junior doctors (n=15) rotating through Velindre NHS Trust in Cardiff during 2015 and 2016 at the start of DNACPR teaching sessions, in induction week.
(FY2- ST2 level). They showed considerable increases in readiness to recommend videos to patients and proxy and they increased their readiness to show a video compared to baseline survey. Graphs 3 and 4 in supplementary materials illustrate these findings. Patient Liaison Group: TalkCPR videos were presented to the Patient Liaison Group (PLG) at Velindre NHS Trust in December 2015.
Listed below are the outcomes of the PLG focus group meeting.
- Outcome 1: PLG felt that videos were acceptable and not distasteful.
- Outcome 2: PLG took key educational messages from videos and interpreted them as was intended
- Outcome 3: PLG felt initial dissemination was appropriate and that videos should get wide-spread coverage
- Outcome 4: PLG agreed that wider remit (i.e. not merely in cancer settings) of video accessibility was highly appropriate
- Outcome 5: Black & white video was seen as highly informative and with potential to alter patients/carers preconceptions
- Outcome 6: PLG members felt that background music in videos was unnecessary and potentially distracting.
- Outcome 7: Mixed views on first (introductory) video showing a family in a waiting room, PLG felt that more detailed information on CPR/DNACPR could have been provided in this video- However acknowledged that this info was covered in other, longer video and the initial short video was aimed at generating interest in topic.
- Outcome 8: Agreed that additional supporting information could be provided on TalkCPR website itself, for those who wanted more information after viewing first video.
Quality of DNACPR form documentation in hospital: A comparison of DNACPR form documentation with results from previous years (Pre- and Post-inervention Data): 50 DNACPR forms from inpatient and outpatient notes from Oct 2015 to Feb 2016 were collected. The data collected was compared to previous years and showed marked improvement in documentation of discussions held with patients and families (see run chart in Supporting Material).
Key learning points
In the development of this project, an initial process map was useful in setting out the overall aim and ethos of the TalkCPR project, and this was developed co-productively with patient groups, a charity, healthcare professionals including junior doctors, psychologists, resuscitation practitioners and many more.
The process map can be found in supporting materials. Furthermore a driver diagram (see supporting materials) helped set out the strategic aims. A Barrier and Aims diagram was used early on and devised after a task and finish group meeting to plan for difficulties and challenges (see supporting materials), for example we incorporate the possibility that patients may find discussions about death and dying distasteful or frightening.
When developing website materials and videos for a roll-out across all healthcare settings in Wales, a number of challenges had to be addressed early on:
- IT infrastructure in different health boards and trusts varies
- Accessibility of videos (YouTube not available in all healthcare settings but this is changing)
- Different viewing modalities need to be available (Vimeo and permanent links on Welsh Howis system).
- Not all computers have loudspeakers, so subtitles may be necessary.
- Welsh language access required, so create this in parallel with English language versions
- Address potential hearing/vision challenges
- Find out communication team leads for each healthcare provider and ask them to help test-drive website and videos on local computers. One health board, for instance, was running an Internet Explorer browser that was several years old, and videos could not be viewed.