Little is known about family members' experiences and their needs and priorities. Resuscitation is a complex and highly emotive situation but guidance for paramedics to support families either in the decision-making process or to remain present is limited. Policy developments around improved and shared decision-making are not evident in any guidance for resuscitation for paramedics. Paramedics have always been involved in resuscitation in the family home, but as they remain on scene for longer periods, it is important that the issue of family participation is addressed and specific guidance produced to enable paramedics to offer more focused and enhanced support to them, and utilise the family members in the decision making process which is a requirement from recent policy developments.
Methods
A systematic review methodology was used to examine primary research studies from a qualitative perspective, and gain insight into the feelings and perceptions of family members who witness an adult family member resuscitation. This enabled a line-by-line examination to determine themes across and within the studies to inform a ‘meta-synthesis’ of the studies selected for this review. This resulted in four main themes emerging from the analysis of over 34 smaller themes, which were re-categorised and sub-themed into major topics for further analysis and discussion to formulate implications for practice and further reseach.
Findings
Four themes emerged from this review:
Literature and policy drivers
There were 60 000 resuscitation attempts in England in 2013, 80% were outside of hospital and 20% in hospital (British Heart Foundation (BHF) et al, 2014). The most likely responders to events out of hospital are paramedics (Blaber, 2012). Paramedics provide resuscitation care for patients and families in out-of-hospital cardiac arrests, and in those situations, families need a great deal of support to manage their emotions as they may have to come to terms with the sudden and often unexpected consequences of resuscitation (Leung and Chow, 2012).
In out-of-hospital cardiac arrest, the reliance on support during such an event may be more acutely felt by families as they often have little choice on who is present, particularly those in a public area and rely on the expertise and skills of the paramedic to support them (Blaber and Harris, 2011). The paramedic is unable to supply the comprehensive range of support that is available in the in-hospital context without a multi-professional resuscitation team to draw from (Williams, 2014). This is a challenge for paramedics, as at times they are required to provide life-saving interventions (Gaskin, 2014). The context in which paramedic care has changed significantly within the function of their major employer, NHS Ambulance Services, as they have moved from a transport service to a dynamic decision-based service (Association of Ambulance Chief Executives (AACE), 2013; Williams, 2014). This change in practice highlights the need to develop policy and guidance for practice.
Little is known about the actual experiences of resuscitation by family members during such events, and a substantial body of literature focuses on the legitimacy of family presence rather then their needs or priorities during such episodes of care. Clear evidence from qualitative and quantitative studies overwhelmingly report family members should be present (Doyle et al, 1987; Hanson and Strawser, 1992; Eichorn et al, 2001; Leung and Chow, 2012). The benefits include improved coping strategies with death to fewer reported psychological long-term issues (Fulbrook et al, 2004; Monks and Flynn, 2014).
Guidance exists from the Resuscitation Council (1996) and the Royal College of Nursing (RCN) (2002), but to date this has not been consolidated in either a NHS-wide policy or more local publications in individual Trusts (Thorén et al, 2010). The policy drivers for practice regarding resuscitation should guide practice but they appear to not reflect the current context of resuscitative care. The Resuscitation Council (UK) (1996) policy that was written in 1996 does not consider that patients are more actively resuscitated outside of hospital. The Resuscitation Council (UK) (1996) policy assumes that all resuscitative efforts are exclusively carried out in the hospital context. Paramedics offered a ‘scoop and run’ and transport service at the time of publication; however, as a more intensive and resuscitative care team in 2016 some 20 years later, this requires a more complex decision-making process rather then immediate transport (Blaber and Harris, 2011). The evidence suggests that families want a far more active role in that decision-making process than was considered necessary or desirable in the past as a result of many changes to practice and policy.
The Resuscitation Council (UK) (1996) and RCN (2002) reflect practice at the time and they were formed mainly as a result of the well-publicised poor practice around paediatric death (Benjamin et al, 2004). They talked in depth about paediatric resuscitation and provided in-depth guidance for paediatric patients, but adult patients were almost referred to in passing. The RCN (2002) guidance suggests families should be allowed to be present but only after consultation with the senior doctor or nurse. This does not reflect the current policy of transparent shared decision-making (Department of Health (DH), 2012; Keogh, 2013). Unfortunately, the RCN (2002) guidance is the only professionally led guidance for practice. The College of Paramedics (2014) curriculum framework does not mention this, neither does the AACE (2013) guidance for practice. Furthermore, the RCN (2002) guidance makes the assumption that all resuscitation occurs in hospital despite 80% of all recorded resuscitations occurring outside of hospital (BHF et al, 2014).
The RCN (2002) and the Resuscitation Council (UK) (1996) guidance appear limited and the scope of both documents appears to apply only a small number of current resuscitations. The Francis (The Mid Staffordshire Foundation Trust Public Inquiry, 2013) and Keogh reports (Keogh, 2013) highlighted the lack of family participation in decisions in emergency care as a particular issue, and it would appear timely to review such guidance for practice. The ‘6Cs’ (caring, compassion, competence, communication, courage, commitment) provide a clear platform for healthcare professionals to drive this policy within practice to ensure families are included in a transparent and honest process of decision-making (DH, 2012).
Data collection
The aim of this study was to gain insight into the experiences of the resuscitation of a relative from the family member perspective and consider what implications this may have on paramedic practice. The diversity of evidence collected from a systematic review was selected as the most appropriate methodology, as it would enable a much deeper understanding of the experiences of families rather than a small-scale primary research study. Interpretive qualitative research was selected as the most appropriate evidence for this study as those types of studies seek to understand and interpret the human experience in context. A number of key words were chosen to interrogate the various databases selected for this study can be found in Table 1. The key word searches were selected using an adapted PICO search strategy suggested by Parahoo (2014).
| Population | Issue | Outcome(s) |
|---|---|---|
| Family |
Resuscitation |
Experiences |
In order to provide more focus to the study, inclusion/exclusion criteria were applied to ensure that only those studies that focused exclusively on family experiences were included. In the methodological context this would increase the trustworthiness and therefore the transferability of the findings of the study to practice. The criteria for inclusion can be found in Table 2. This ensured that only adult resuscitation and the experiences of family members were captured for this study.
| Include | Exclude | |
|---|---|---|
| Population | Adult patients (>18 years) Family/relatives/loved ones | Any person without familial connection to the patient |
| Issue | Resuscitation/CPR/cardiopulmonary resuscitation | End-of-life care Palliative care |
| Outcome | Experiences |
None |
| Type of study | Qualitative studies | Quantitative studies |
The databases selected to search for the evidence included MEDLINE, CINAHL, EMBASE and AMED. They were selected because of their specific focus on health care and their relevance to the focused question. The review also examined the ‘grey literature’, which identifies studies without formal peer review, those in progress, or those that had not met the criteria of specific publishers. They were also useful for further references and signposting to relevant documents. This identified 84 studies for potential inclusion in this review.
Data analysis
The 84 studies found from the comprehensive search were analysed using a two-stage selection process. The first selection involved reading the abstract and title to determine if they met the criteria, which resulted in 67 studies being discarded and 17 being put forward for the second stage. The second stage involved a full read of the studies from the first selection to determine how well they met the inclusion criteria. This resulted in the final selection of four studies as the evidence for this review. The studies were then further assessed for methodological quality using the RF-QRA quality assessment tool (Henderson and Rheault, 2004). This tool enables the reviewer to judge the trustworthiness using a quality assessment decision and grading tool. One study was assessed as level one, the highest quality, one at level two, one at level 3 and one at level 5, the lowest quality study.
The final four papers selected for this study were:
Quality assessment: level 1: study number 75
Quality assessment: level 2: study number 29
Quality assessment: level 3: study number 78
Quality assessment: level 5: study number 3
The results from those studies indicated there were 34 themes, and furthermore a number of key commonalities across the studies. The quality assessments of each study examined the length and duration of data collection as part of the credibility assessment of the studies presented. It would appear that regardless of the data collection period, the themes extracted from each study are broadly similar. The demographic and biographic information from each study also do not appear to have had any significant impact on the themes identified by family members as important.
The results were analysed and further synthesised to identify commonality of findings and meanings. A judgement was made by the reviewer following line-by-line examination of themes about those with similarities and common findings. New themes were formed from the synthesis of results and merged into larger headings. This resulted in four main themes being presented as evidence for this paper (see Table 3).
| Theme | Study | New theme |
|---|---|---|
| To submit or ignore the guidance of healthcare professionals | 78 | Competent and professional care |
| You do your job | 3 | |
| Role of the healthcare professionals to ‘fix’ the patient | 3 | |
| Multiple people helping patient | 29 | |
| Completion of many tasks and ‘assessment of the damages’ | 29 | |
| Professionalism and team work | 29 | |
| Ensure the team is doing its job | 29 | |
| Role of family members to protect and support the patient | 29 | Remaining connected |
| Be in close proximity to provide physical and emotional comfort | 29 | |
| Being emotionally connected to the patient | 29 | |
| Providing emotional support to the patient | 75 | |
| Maintaining relationships with the patient and others | 75 | |
| To be caring for the good of oneself and others | 78 | |
| Recognising subtle changes that something is wrong | 3 | Knowing the patient |
| Provide information to the medical team and other family | 29 | |
| Knowing the patient | 75 | |
| Recognising the patient's health condition | 75 | |
| Keeping informed about what is going on | 75 | |
| Being engaged in what is going on | 75 | |
| Providing information to the resuscitation team | 75 | |
| Experience and knowledge of resuscitation | 78 | |
| Should we stay or should we go? | 3 | Breaking down barriers to presence |
| Breaking the rules phase | 3 | |
| Here and now phase | 3 | |
| Perceived inappropriateness | 75 | |
| Perceived inconvenience | 75 | |
| Perceived prohibition | 75 | |
| Regognising the emergency department procedures | 75 | |
| Being afraid of disturbing resuscitation efforts | 78 | |
| To be dependent on the interplay between trusting oneself and advocating the patient | 78 | |
| To be sensitive to one's own emotions and to be reasonable | 78 | |
| Healthcare professionals | 78 |
Findings
The four themes found and identified for this review indicated priorities for family members during resuscitation events, and all of them relate to family member expectations of healthcare professionals (Wagner, 2004; Weslien et al, 2006; Hung and Pang, 2011; Leske et al, 2013). There were no studies found that examined the pre-hospital or out-of-hospital care of patients and the findings related entirely to the in-hopsital perspective. This review attempts to draw some comparisons with pre-hospital care and make some suggestions as to the appropriateness in this setting, or how they could be interpreted for such practice.
‘The four themes found and identified for this review indicated priorities for family members during resuscitation events, and all of them relate to family member expectations of healthcare professionals
The existing guidance for practice does not suggest family members should be excluded, but discusses a process of permission of entry and rules of engagement which were contrary to the findings in this study (Resuscitation Council (UK), 1996; RCN, 2003). The recent policy developments following the Mid-Staffs inquiry and the care and compassion agenda from NHS England requires healthcare professionals to plan holistic care centred on patients and their families (The Mid Staffordshire Foundation Trust Public Inquiry, 2013; Keogh, 2013; Gaskin, 2014; Care Quality Commission, 2015). It would appear from the themes in the papers for this study this may be a challenge for healthcare practitioners, in particular paramedics, as families still report there are barriers to presence.
Theme 1: competent and professional care
The first theme related to how family members viewed and experienced the care of their relatives. Three of the four studies highlighted the need for healthcare professionals to provide competent and professional care. Leske et al (2013) found family members expected healthcare professionals to work in an expert team dedicated to ensuring that their relative received the best care. This is illustrated in an extract below:
‘All hands on deck…many doctors around the patient…there was a lot of staff, 20 plus staff members working in the room’ (Leske et al, 2013: 80).
This is perhaps relatively straightforward in the hospital setting, but in pre-hospital care could pose a challenge. Interventions and procedures give some visual comfort to families, and this is widely reported in the literature (Duran et al, 2007; Monks and Flynn, 2014). The challenge for the paramedic, as the only person authorised to make such interventions, is to balance this with the family expectation to keep them informed, discuss treatment options and decisions.
Theme 2: remaining connected
The second theme related to family members being connected to their relative during the resuscitation process. Family members express an even greater need to be as close to their relative as possible, as they felt it was their role to support the emotional wellbeing of their relative and were reluctant to devolve this responsibility to the healthcare professional (Weslien et al, 2006; Hung and Pang, 2011; Leske et al, 2013). Families believe there is a clear distinction between the emotional care that they should provide and the professional care that they expected to be delivered by healthcare professionals. Those feelings are clearly demonstrated in an extract from one of the studies:
‘It was helpful to be able to reassure my husband…my son knew I was there…it helped him not to worry…I needed to be there it was very important to me that she (sister) knew I was there, very important.’ (Leske et al, 2013: 82).
Not all families want to stay or even be in close proximity during the resuscitation event. It should not be assumed that being present during resuscitation is the best for everyone, and the person who acts as the liaison between the family and the resuscitative event should ascertain their wishes as soon as practicable. This may be difficult in pre-hospital care, but nonetheless every effort should be made to do so. This point is illustrated in an extract from one of the studies:
‘I think that staying is different for every person…some people couldn't do it. I was in shock and that kept me calm and made me able to stay with him. I was glad he knew I was with him all the way. I have dreams…it all flashes on me’ (Leske et al, 2013: 82).
Benjamin et al (2004) and Chapman et al (2013) suggest that healthcare professionals take a particularly paternalistic view of resuscitation and believe it is unnecessary for family members to be there. If it is not the emotional issues that concern families, they perceive themselves as getting in the way of the healthcare professional (Wagner, 2004; Weslien et al, 2006; Hung and Pang, 2011). Healthcare professionals should ensure that family members are enabled to remain connected even if it is more difficult or there is a perceived lack of space to accommodate them.
‘I could stand to the side if I was allowed in, and would not inconvenience them (the resuscitation room). Though I could not help…I think both of us would have felt better psychologically if I had been there. If offered the option in future I would stay there to be with her’ (Hung and Pang, 2011: 62).
Theme 3: knowing the patient
This was one of the strongest themes in the study. Families felt they had vital information about their relative that could contribute to the success of the resuscitation event or speed up the decision-making process (Wagner, 2004; Weslien et al, 2006; Hung and Pang, 2011; Leske et al, 2013). They want to be included or considered as part of the resuscitation team (Wagner, 2004; Weslien et al, 2006; Hung and Pang, 2011). This is illustrated in the extract below:
‘I can inform (the staff) about something that is not written in the medical record. It is not easy (for the staff) to read that (medical record) in a second. They read that he had undergone coronary bypass. I could inform them that four vessels were replaced and that was important information. Therefore I wanted to be there (in the resuscitation room) if any questions should be asked’ (Weslien et al, 2006: 71).
The Francis (The Mid Staffordshire NHS Trust Public Inquiry, 2013) and Keogh reports (Keogh, 2013) both recommended significant changes to policy and require a more shared-decision approach in practice. They also called for more care and compassion to be demonstrated by practitioners. Family members in this review expressed a need to share information which they felt was vital to speed up the process of resuscitation and without it this may have caused an unnecessary delay.
‘I needed to make decision for him…staff needed to know his history, medications, and insurance and he wasn't able to answer.’ (Leske et al, 2013: 82).
Duran et al (2007) and Jabre et al (2012) found family members felt it was inefficient of the team to keep coming back to them to ask questions when they could be present and give immediate answers. Healthcare professionals may prefer to keep families in a waiting area (or in an adjacent room in the pre-hospital care context) to filter knowledge and prepare themselves for difficult questions or bad news (Robinson et al, 1998; Meyers et al, 2000; Eichorn et al, 2001). The information and experiences held by patients' family members could ensure the decisions taken by the resuscitation team are made more collaboratively and are based on the most up-to-date and appropriate information (Hung and Pang, 2011).
‘She received treatment inside the resuscitation room…I recognised all the procedures… The doctors prescribed a chest X-ray…Once the films were seen by the doctor she was asked to be admitted then. She is admitted to the medical ward on the 14th, 15th, or 16th floor two or three times a year’ (Hung and Pang, 2011: 62).
Theme 4: barriers to presence
This has been reported as a separate theme even though many of the issues are connected to the previous three themes. The reason for this is to raise paramedics' awareness of the perception by family members of how local rules may ensure smooth running but are perceived as significant barriers to presence (MacMahon-Parkes et al, 2008).
There was a feeling from family members that they were secondary and seen as separate or outside of the process of resuscitation, often being perceived as an inconvenience. Prohibition and exclusion in addition to several barriers to admission to the resuscitation room were of particular concern. The RCN (2002) guidance still refers to family members being ‘allowed’ to be present if they meet certain conditions, and the power to make such a decision lies with the senior doctor or nurse. The family member perception about specific rules is illustrated in an extract from one of the studies:
‘Family members were permitted to break the rules, both formal and informal, to be with their loved one, but only after the patient's condition was stabilized. The formal rules included such things as the regulations posted in the institution about the permissible hours for visiting patients. The informal rules were the discretionary rules that individual nurses made about families visiting.’ (Wagner et al, 2004: 418).
Patient studies confirm they believe it is their family member's right to be present but are worried about how they will cope with their emotions, and this may appear as being difficult or demanding (Thorén et al, 2010). Families accepted they may be emotional, but the studies point out this may be the last time they see or spend time with their loved one; therefore being present, regardless of the rules, is of critical importance (Wagner, 2004; Weslien et al, 2006; Hung and Pang, 2011). This is illustrated in the following extract from one of the studies:
‘I really understand that one is not allowed to be in there. I really do. I believe that always when you lose someone, it doesn't matter how much one has done and told, which I did for my husband, how much I loved him. You just want to say that once more’ (Weslien et al, 2006: 72).
The wider literature suggests families are often in a difficult situation, having to make a decision to stay or go, while controlling emotions and feeling unsupported by healthcare professionals (MacMahon-Parkes et al, 2008). The orderly routine of critical care and the imposition of rules seem at odds with providing compassionate care (DH, 2012).
Limitations
This review was based on a limited number of studies; the optimum number of studies considered to influence practice is between six and eight, and this study only found four. The trustworthiness of this review is therefore potentially limited and the quality of the recommendations should be noted with some caution. This may be directly related to the lack of existing literature or the inclusion criteria. The studies selected for this review related only to evidence found from an in-hospital perspective and are not directly related to paramedic or pre-hospital care.
Implications for practice
The review found that family members would like to be given the option of being present but need the support of healthcare professionals to enable them to make an informed decision. Family members should be accommodated during the resuscitation event, and the appropriate space should be made for them to remain as close to to their relative as possible, both physically and emotionally. Expert knowledge from family members about their relative's medical history, value and beliefs should be listened to and taken seriously by a member of the team. Practitioners should make it possible for family members to be present and any local rules or policies that currently prevent family member presence should be reviewed.
Family members rely on the ongoing support and guidance from healthcare professionals to make informed decisions, but this review acknowledges that paramedics may need further education and training to fulfil their expanded role in supporting family members to be present. The recommendations of this review are based on the themes produced from the evidence found to support this paper.
Conclusions
The findings of this systematic review suggest family members have as many needs and priorities during resuscitation as their relatives who are being resuscitated. Family members consider healthcare professionals to be central to providing professional and competent care, ensuring they are kept informed and enabling them to make choices and support to make ongoing decisions and contribute to the care of their relative during resuscitation.
Healthcare professionals are also viewed as barriers to family presence and should recognise that families perceive professional rules of engagement as potentially harmful and negative. Families want to be seen as an integral part of the team and viewed as making as valuable a contribution to the progress and decisions taken during resuscitation.
This systematic review has demonstrated that there is a lack of evidence to support family presence during adult resuscitation and that further evidence from a UK-based study could inform the revision of current policy and professional guidance which does not reflect recent changes in context.
Future research
Further research is needed on the experiences of family members during resuscitation, in particular within the UK, for wider influence on NHS policy. Furthermore, the uniqueness of the paramedic context identified requires further specific research about how the recommendations of this review could be implemented or amended for that specific context to contribute to the evidence base for this topic and the development of additional or enhanced practice guidance.
Key Points
Conflict of interest: none declared