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National Clinical Guideline Centre (UK). Care of Dying Adults in the Last Days of Life. London: National Institute for Health and Care Excellence (NICE); 2015 Dec 16. (NICE Guideline, No. 31.)
6.1. Introduction
Communication is crucial when a person is entering the last days of life. As well as a biological process involving physical changes, dying is also an important social and spiritual time when the person may experience psychological changes. It is important that the dying person and those important to them are able to prepare for death and make any necessary arrangements.
The need for good communication at the end of life is an issue that arose in the More Care Less Pathway review of the Liverpool Care Pathway.30 The report highlighted many examples of substandard patient care, including inadequate documentation of care plans, use of euphemisms such as ‘making them comfortable’ and inexperienced junior doctors having discussions about dying without consulting senior colleagues.
Poor communication at this stage of life can lead to possible misunderstandings and unnecessary distress in dying people and those important to them and lose people precious time that they could be using to put their affairs in order or saying goodbye. It can also create a loss of confidence and trust in healthcare professionals. For example, relatives may misconstrue cessation of routine observations as a lack of care. It has been perceived that much of the distress and controversy surrounding the Liverpool Care Pathway could have been prevented by sensitive and timely communication between clinicians, relatives and other carers. The More Care Less Pathway report highlighted this as a “non-negotiable aspect of best practice in end of life care”.
The Committee noted that NICE had already published related guidance on patient experience in adult NHS services74 that contained relevant recommendations for effective communication that would be applicable to this population. However, given their observation in the previous chapter that some clinicians are uncomfortable with discussing this sensitive topic, the Committee felt that, in order to provide useful guidance for effective communication at the end of life and to identify areas for potential training in communication skills, they would ask the following question that specifically aimed to identify the barriers and facilitators to effective communication.
6.2. Review question: What are the barriers and facilitators to good communication between the dying person, those important to them and the healthcare professional surrounding the likelihood of entering the last days of life?
For full details see review protocol in Appendix C.
Table 23
Characteristics of review question.
6.3. Clinical evidence
Four qualitative studies and 2 retrospective surveys were included in the review,7,8,40,42,49,90 these are summarised in Table 13 below. Key findings from these studies are summarised in the clinical evidence summary below (Table 24 to Table 29). See also the study selection flow chart in Appendix E, study evidence tables in Appendix H, and excluded studies list in Appendix L.
We searched for qualitative studies to explore the experiences, opinions and attitudes of the dying person, family members and healthcare providers on the factors that encourage and prevent good communication between them and the healthcare professional when conveying the likelihood they are entering the last days of life.
No studies were identified that elicited experiences or perceptions of the dying person. One American study40described the experiences and opinions of relatives of critically ill people on an intensive care unit, while 2 other studies (from Canada7, and America8) focused on experiences of healthcare providers as part of a general medical ward team and intensive care unit nurses respectively. A further UK49 study was identified which interviewed both bereaved carers and healthcare professionals about people that had died in acute hospital settings, about the general care they received including communication of prognosis.
Two additional surveys from Norway and the USA were identified that investigated associations with communication of likelihood of entering last days of life, again, focusing on the experiences of healthcare providers.
While none of the studies focused their analysis specifically on the communication of likelihood of entering the last days of life, communication of prognosis (including likelihood of death in hospital) was a facet of the discussions analysed in each of the papers.
6.3.1. Summary of included studies
Table 24
Summary of studies included in the review.
6.3.2. Themes and sub-themes derived from the evidence
Table 25
Themes and sub-themes.
Figure 4
Theme map.
6.3.2.1. Evidence summary
Table 26
Summary of evidence: Theme 1 – factors relating to those important to the dying person that can act as a facilitator or barriers in the communication of the likelihood of entering the last days of life.
Table 27
Summary of evidence: Theme 2 – factors relating to the dying person that can act as facilitators or barriers in the communication of the likelihood of entering the last days of life.
Table 28
Summary of evidence: Theme 2 – factors relating to the dying person that can act as facilitators or barriers in the communication of the likelihood of entering the last days of life.
Table 29
Summary of evidence: Theme 4 – factors relating to resources that can act as facilitators or barriers in the communication of the likelihood of entering the last days of life.
6.4. Economic evidence
Published literature
No relevant economic studies were identified. See also the economic article selection flow chart in Appendix F.
6.5. Evidence statements
Clinical
Qualitative evidence indicated several themes around healthcare professionals' and family members' experiences, opinions and attitudes on the factors that encourage and prevent good communication between the dying person and those important to them and the healthcare professional when conveying the likelihood they are entering the last days of life. Low to moderate quality evidence was reported from 3 studies (3 qualitative studies, n=62) from the opinions of nursing staff, doctors and family members on factors relating to those important to the dying person that affect communication. These included an impaired ability to retain and process information, avoidance of discussing prognosis, family being unaware of the patient's diagnosis and exclusion by the family of the patient during the communication.
Low quality evidence on the factors relating to the dying person that facilitate or inhibit communication of prognosis were obtained from 2 studies (n=99) including people having a wide range of cultural and societal beliefs, or current circumstances meaning that communication is likely to raise anxiety. 1 observational study (n=196) also provided low quality evidence that people who had a higher level of consciousness and were younger were more likely to be informed of prognosis. 5 studies (3 qualitative studies n=119, and 2 observational surveys n=424) reported on factors related to the healthcare professional that can facilitate or hinder communication of prognosis. The low quality themes identified included uncertainty in prognosis, poor communication skills, lack of information provision to the patient, lack of training and expertise, and discomfort with discussion as acting as a barrier to communication.
1 qualitative study (n=38) reported low quality evidence on privacy acting as a barrier to communication of prognosis.
Economic
- No relevant economic evaluations were identified.
6.6. Recommendations and link to evidence
| Recommendations |
|
|---|---|
| Relative values of different outcomes | The Committee agreed that outcomes which highlighted the barriers and facilitators to communication of prognosis in the last days of life were vital to this review. These outcomes included the experiences, opinions and attitudes of the dying person, those important to them, and the healthcare professionals involved in their care, as it was felt each population would offer a unique and informative perspective on this topic. |
| Trade-off between clinical benefits and harms | The evidence identified a number of barriers and facilitators to effective communication of prognosis. These were divided into factors relating to the dying person, those important to them, and healthcare professionals. The Committee agreed with the findings presented, as they reflected observations from their practice. They agreed that adequate communication of prognosis improves the end of life care of dying people. It also improves the post death bereavement experiences of people important to the dying person, although this was not evidenced in the literature reviewed. Harms identified include the impact of poor communication of prognosis, causing unnecessary anger and confusion in the last days of life and beyond. The Committee felt that the benefit of good communication would always outweigh any potential distress caused. |
| Trade off between net health benefits and resource use | This review question focuses mainly on the content and methods of how communication should be delivered. The recommendations made are unlikely to have any economic consequences. |
| Quality of evidence | A qualitative review was conducted. Qualitative studies were identified from the perspective of those important to the family member and healthcare professionals. There were no identified studies from the perspective of the dying person. The quality of evidence ranged from low to moderate; this was due to limitations in studies, risk of bias and the applicability of the findings given that the studies were conducted in other healthcare settings to the UK, and were examining wider topics than the communication of prognosis. The recommendations were based on the evidence and the consensus opinion of the Committee members. There were no themes the Committee could identify from their experience that were not picked up in the evidence review, and similarly none of the included themes were felt to be out of place. |
| Other considerations | The Committee was aware of the guidance on effective communication contained within the NICE guideline on Patient experience in adult NHS services74 and wished to draw attention to these as part of their overall recommendations in this section. The Committee commented on the importance of tailoring communication for people with different needs, for instance cultural preferences, those for whom English is not their first language, people who have dementia or other cognitive impairments, and people with speech and language impairments. These and other factors, including their current understanding of their condition, should be assessed before communication takes place. The Committee felt that simple assessments of cognitive status, such as orientation to time or place, could be conducted by any healthcare professional delivering care, without the need for specialist help. The Committee noted the importance of reviewing and documenting communication needs, as these may change over the last days of life. The Committee recognised that some people prefer not to be informed of their prognosis fully and felt that the dying person's information requirements and wishes needed to be explored before communicating prognosis. The Committee also noted the importance of competent decision making using the dying person's advance care plan or any other stated preferences around care in the last days of life, including anticipatory prescribing decisions or refusals to specific treatments and made a recommendation in this regard. Timing of communication of prognosis was recognised as important to good end of life care. The Committee recognised that it is difficult to judge when to initiate these discussions and there is no fixed appropriate time, as it will vary among dying people. They also agreed with the uncertainty in prognosis, identified as part of the evidence review, as a common barrier in practice to communicating prognosis early. They felt, however, that health and care professionals need to manage uncertainty effectively and that it should not be allowed to act as a barrier to communicating prognosis in a timely fashion. Instead discussions should take place as early as possible and include discussions with the dying person and those important to them. The Committee was aware of anecdotal evidence of bereaved family members left angry and bereft at having no time to say goodbye or to reconcile with their relative when communication about the person dying was left too late. It was noted that, whilst some dying people and the people important to them may appear to want to avoid bad news, as reflected in the evidence review, most would rather have prognosis communicated with them as soon as it is recognised. The Committee noted that a close relationship and good rapport between health and care professionals and the dying person helps with the sharing of information. It was noted that this contradicts the discussion in a previous evidence review on recognising dying, where a close relationship can lead to doctors overestimating a prognosis. However, the Committee felt that a good relationship facilitates communication of the sensitive subject of prognosis. However, if a health professional with prior knowledge or rapport was not available this could not be used as a reason not to communicate the information. The Committee felt that health and care professionals sometimes do not have, or may lose, their skills and confidence in delivering difficult news, which can be experienced in a period of time where death is imminent and otherwise unexpected. Training programmes are available and health and care professionals should be encouraged to keep their skills updated. The General Medical Council has outlined specific general duties on doctors to keep their knowledge and skills up to date (see paragraph 8 of the core guidance Good medical practice).37 However, while training is important it was recognised that it can be hard to sustain what has been learnt if the professional does not regularly use these skills. The Committee was not aware of any research found which identifies whether training in difficult conversations has been successful, or whether the communication skills of staff have improved after training. Because of these reasons, and the fact that training was outside the scope of this guideline, a recommendation was not made. The Committee discussed the content of discussion of prognosis with the dying person or those important to them. They felt that this should be individualised to the dying person based on initial assessment. However, there were some areas of good practice the Committee highlighted as important, including providing accurate information, avoiding false optimism, and appropriately ascertaining and addressing any fears or concerns of the dying person. The Committee discussed that it may be relevant to sensitively talk about the dying person's mode of death with the person and those important to them, such as the likeliness of catastrophic haemorrhage or severe vomiting, or the management of implantable cardioverter defibrillators at the end of life to minimise distress. The Committee felt it was important to provide a contact detail for the named lead clinician or other members of the multiprofessional team such as social workers or faith advisors for further discussion about any questions the dying person may have. The Committee noted in the evidence review that those important to the dying person may wish to try and withhold information regarding prognosis from the dying person. The Committee recognised this was a problem in their clinical experience. They noted that any requests of this nature should be dealt with sensitively and respectfully. but that clinicians should always act in the dying person's best interest. The Committee felt that this could be achieved by exploring the reasons why the family (or others) may wish to withhold information from the dying person, explaining why the dying person might find it difficult to have information withheld and explaining that the clinicians have the responsibility to act in the dying person's best interest whilst trying to find a mutually agreeable way forward. The General Medical Council has also provided guidance for doctors in this area in its document: Treatment and care towards the end of life: good practice in decision making. 37 The committee did not intend their recommendations to address, in any detail, any legal requirements related to notification or consent further to the Tracey case27 or the obligation to provide information on material risk of any treatment based on the Montgomery judgment95 but felt that clinicians should be aware of the impact of these legal issues as part of their practice. |
- Introduction
- Review question: What are the barriers and facilitators to good communication between the dying person, those important to them and the healthcare professional surrounding the likelihood of entering the last days of life?
- Clinical evidence
- Economic evidence
- Evidence statements
- Recommendations and link to evidence
- Communication - Care of Dying Adults in the Last Days of LifeCommunication - Care of Dying Adults in the Last Days of Life
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