The review explored whether patients are actively involved in decision making about DNACPR and whether those decisions are clearly recorded and communicated between healthcare professionals.
Foreword
I am pleased to be publishing this report which presents the findings from our Review of Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions for adults in Wales.
DNACPR decisions are an important part of end-of-life care, and during the course of our lives many of us will become involved in these discussions either on a personal level or in relation to a loved one. It is important that these discussions, and the decisions made, happen in a sensitive and effective way in order to respect the wishes and views of all of those involved. When done well, DNACPR discussions can be a positive experience, offering clarity at a time of uncertainty, ensuring that distractions are limited at such an important time.
Our work has allowed us to highlight areas of good practice, and to identify areas for improvement, which is timely with the forthcoming biennial review of the all-Wales DNACPR policy.
It is clear that understanding the patient’s wishes at the end of their life is an essential element of good care and I expect health boards, trusts, and Welsh Government to carefully consider the content of this report and the overall findings from our review. I also expect health boards and trusts to consider the staff and public’s feedback highlighted throughout the report, to determine how these can influence improvement with the quality of the DNACPR decision making process.
I would like to express my thanks to the staff who helped inform our review by sharing information, participating in our interviews and focus groups, and for completing our surveys. In addition, to Professor Mark Taubert for his continuous support and professional advice throughout, and finally to those who supported us by completing our public survey.
To close, I must take this opportunity to pay tribute to the staff who take part in discussions about DNACPR decisions, and to those who provide care and support to people at the end of their lives. The compassion and dedication of those we engaged with throughout this work is heartening and provides a strong and positive basis upon which to improve.
Summary
The review explored whether patients are actively involved in decision making about DNACPR and whether those decisions are clearly recorded and communicated between healthcare professionals.
It is clear from our review’s findings that there are examples of noteworthy practice across Wales regarding the DNACPR decision making process. However, we have also identified opportunities to improve. These include the need to strengthen the quality of communication with both patients and those close to them, and across different healthcare teams. This is to ensure that discussions and DNACPR decisions and the rationale behind these, are clearly recorded and communicated between healthcare teams.
Cardiopulmonary Resuscitation (CPR) can in theory, be attempted on any person when their heart and their lungs cease to function. The joint guidance from the British Medical Association, the Resuscitation Council (UK) and the Royal College of Nursing; Decisions Relating to Cardiopulmonary Resuscitation, highlights that clinical outcomes following CPR are dependent on the clinical factors that led to the situation. Unfortunately, in many instances, the CPR procedure does not always result in a good clinical outcome, and when people do survive, there is significant risk of harm and long-term complications.
When people are affected by life-limiting and palliative illnesses, an open discussion about the reasons not to resuscitate them if their heart and lungs cease to function, can be an important part of advance care planning, and can help minimise distress at a later stage. To facilitate and support the DNACPR decision process, clinicians in Wales who make decisions not to resuscitate a person, must legibly and fully complete a DNACPR Form. This will ensure that the patient’s wishes are respected and that decisions reflect the best interests of an individual. This is highlighted within the all-Wales DNACPR Policy.
A key area and focal point during our review, and one where improvement is required, is the need for accurate and effective recording on DNACPR forms. Our review has highlighted that across Wales, the legible and full completion of DNACPR forms and the supporting or additional written accounts within an individual’s clinical records was variable. Illegible or incomplete records can have a negative impact on effective communication across healthcare teams about a DNACPR decision.
We reviewed approximately 280 DNACPR forms during our work. It was positive to find some good examples of concise and thorough explanations of patient discussions, and instances where a clear indication had been given for any absence of discussion with patients and/or those close to them. We also found examples of comprehensive narratives written within patient clinical records to support the DNACPR form. However, improvements are needed in the way that information is recorded on the forms to support communication of the DNACPR decision.
A central element that is critical to making DNACPR decisions is communication. There is room for improvement to ensure that people’s experience of DNACPR discussions is as informative and holistic as possible. Most staff who we engaged with felt that individualised communication is at the centre of all DNACPR decision making, and that this is done in an open and honest way. However, we found that this could be strengthened further, by having DNACPR discussion with patients at an earlier point during their illness, instead of these taking place closer to the end of their life. This is crucial in enabling people to feel informed and understand what will or will not happen once the decision not to resuscitate is made.
Understanding the patient’s wishes at the end of their life is a fundamental element of good care. We feel more can be done to improve people’s awareness of DNACPR and access to information resources, to help them come to terms with and understand the DNACPR decision process. Whilst our review identified that resources are available to support this, it was disappointing to find that three quarters of respondents to our public survey said they were not provided with supporting information about the decision not to resuscitate.
Whilst a third of respondents to our public survey felt they were aware of what a DNACPR decision meant, prior to discussing this with clinicians, over half felt their understanding did not change following a DNACPR discussion. However, we received some positive examples where patients said they had received ongoing care and active cancer treatment, and the DNACPR decision did not mean this would discontinue, as they originally thought.
It is therefore evident that improvement is needed to support the public’s understanding of the DNACPR decision making process, and its implications for individuals receiving care and support for their ongoing health needs. A DNACPR decision does not mean an immediate end to patient care and support, rather it means the individual will not be resuscitated in the event of cardiac arrest or dying naturally, because of deterioration in their existing clinical condition.
It was disappointing to find that almost half the respondents in our public survey felt their accessibility needs were not considered during DNACPR discussions, with most saying that their communication needs or preferences were not discussed. However, we also heard positive comments from people about the resources which helped their understanding, such as videos and leaflets. These included, “Sharing and Involving”- Information for patients and their carers to help make decisions about CPR, and online resources, such as Talk CPR – Discuss DNACPR, and the dedicated YouTube Channel Byw Nawr – Live Now.
A key issue to have emerged from our review relates to patients having the mental capacity to make and communicate decisions about CPR, and the quality of how these details were recorded on the DNACPR form. Whilst this section of the form was generally well-completed for people who had capacity, this was not always the case for those who may have lacked capacity. We found some forms and clinical records either contradicted each other, were incomplete, or there was no evidence that a mental capacity assessment had been undertaken and without rationale. We are therefore not assured, based on the records we reviewed, that the DNACPR decision making process is always completed in line with the all-Wales Policy, for patients who were deemed to lack capacity. This issue must be addressed by health boards and trusts.
Training and support for staff around DNACPR discussions and decision making, emerged as a consistent theme through our review. Training modules, resources, and information to support clinicians is available nationally. However, a recurring issue appears to be staff awareness of these resources and their ability to access them in a timely manner. These resources are valuable and can help ensure that DNACPR discussions can be held in a person-centred way, that meet the needs of people. For instance, it can be challenging to hold conversations with people about DNACPR when communicating with those who have strong beliefs, for instance cultural or religious, or with people who have learning disabilities. Only 40% of staff survey respondents said their organisation provides appropriate equality and diversity training or support, which contradicted information provided to us by each organisation.
It was positive to find that communication aids for people with language barriers and sensory or cognitive impairments are widely available across Wales. Access to interpretation and translation services is also available and includes support for those with hearing and sight impairments. However, once again we heard that staff were not always aware of the resources available to support them when having discussions with people who have communication challenges.
The general disparity regarding staff training may in part be due to constraints on the ability of staff to attend, or a lack of awareness of its availability. Irrespective, we believe more should be done to ensure staff can access the resources available to them to support effective DNACPR conversations.
We found the summaries of main clinical conditions and reasons why CPR would be inappropriate were generally well-completed on the DNACPR forms. However, the form’s free text box has minimal space for a clinician to record all relevant information. On a practical level, staff felt that expanding the size of the free text box on the form would aid with capturing the more pertinent points more effectively. Whilst we saw some positive examples of concise and thorough summaries of patient clinical conditions, and clear indications why CPR would be inappropriate, we also saw other summaries which were sparse or illegible. We therefore concluded that documentation in the clinical condition section of the form must be strengthened, to help ensure there is no ambiguity or misinterpretation of what is recorded.
It was concerning to find that almost a third of staff responding to our survey, felt that communication across healthcare teams about DNACPR was not at all effective. A theme arising from our survey was the need for effective information sharing across healthcare teams, with particular reference to the need for an all-Wales electronic repository for the DNACPR form. The benefits of an electronic system would enable people and services, such as patients, clinicians, GP practices, out-of-hours services, WAST staff and the NHS 111 service, to access a central system promptly, to establish if a patient has a DNACPR decision in place.
Whilst an electronic repository would not eradicate all risks and challenges, as it would still be reliant upon its effective usage by staff, such a system may be beneficial in bridging the gap between hospital, community and primary care settings, or from one health board to another. Such a system could help to support the efficient sharing of crucial information around DNACPR.
It is clear, that lessons can be learned from both the staff and public’s experience and feedback of DNACPR decision-making as highlighted throughout this report. Health boards and trusts should consider these views and identify how they could influence improvement around the quality of the DNACPR decision process, and the experience of patients and those close to them.
It is important to highlight that the staff we engaged with during interviews, focus groups, and through the responses received in our staff survey, endeavour to support people with the dignity and respect they deserve during the end of a person’s life. We have found that there are positive examples where DNACPR discussions take place well, and in a timely manner before the end of someone’s life. However, these can be challenging and distressful times for those involved, and sometimes there is little time available for through discussions, particularly during unforeseen emergency situations.
Overall, we found examples of noteworthy practice, but also areas needing improvement. Health boards and trusts must consider the findings of our review and act on our recommendations to drive improvement in relation to the DNACPR process. This includes the need to reflect on the experiences of staff and the public, which are highlighted throughout the report.
We would like to express our thanks to the staff who helped inform our review by sharing information, participating in our interviews and focus groups, and for completing our surveys. In addition, we are thankful to Professor Mark Taubert for his continuous support and professional advice throughout our review, which was appreciatively received. Finally, we wish to thank those who supported our work by completing our public survey.