Religious beliefs, community pressure and cultural expectations

The key barriers to EOLCP suggested by laypeople and community and faith leaders were religious fundamentalism, community pressure and cultural expectations. Story 1 was viewed as an example of religious beliefs preventing EOLCP. Participants discussed how the story highlighted that the patient was ‘holding onto miracle’, which suggested that it would be difficult to break through such beliefs. They acknowledged that, although the patient in the story was terminal, he had not accepted that himself, ‘so he will make it difficult’. There was also the suggestion that community pressure and cultural expectations had an impact on a patient’s ability to accept a terminal diagnosis. There was also a strong sense of duty that the male has to look after the family, which was viewed as a reason why the patient, as the male figurehead, was not accepting his terminal diagnosis, ‘as he thinks he has to be strong for everyone’.

Lack of trust

Laypeople and community and faith leaders also acknowledged that previous negative health-care experiences meant that a patient was reluctant to have treatment, which had an impact on trust, or more significantly, lack of trust. Lack of trust of professionals and organisations was viewed as a key barrier to EOLCP by laypeople, community and faith leaders and HCPs. One of the participants in the community and faith leaders stakeholder workshop talked about his own experiences and stressed that doctors took decisions without permission from patients and merely asked patients as a formality with reference to the decision about resuscitation. Academic participants also recognised that past experiences could lead to misconceptions about medications for pain based on witnessing the end-of-life experiences of relatives. Time taken to have EOLCP discussions, along with effort to get to know the patient and continuity of care, all had an impact on ‘lack of trust’.

Communication needs and inaccessibility of language

Inability to address communication needs and the inaccessibility of language were highlighted as key barriers in EOLCP by all stakeholders. All recognised that ethnically diverse patients may have additional communication needs linked to both the challenges of a language that is not shared by the patient and the professional and mutual understanding of terminologies and concepts that need to be addressed. Participants discussed how the patient in story 2 could not speak for himself to the professionals because of language barriers and was reliant on his family to speak and interpret on his behalf. One community and faith leader stakeholder stressed that there is a lack of understanding from HCPs for people who cannot speak English. He went on to stress how, when people go through trauma, they revert to their first language. HCPs recognised the need to move away from using family members to interpret. However, using other avenues, such as NHS language line services, was viewed as being difficult and time-consuming. A HCP participant suggested taking a team member along with you who had the relevant language skills, but acknowledged that this was not always feasible because of other work pressures.

Stakeholders also recognised that inaccessibility of language, use of terminologies such as ‘end of life’ or ‘advance care planning’ may not be appropriate or comprehensible for patients or their families. Lay stakeholders stressed that many people may feel overwhelmed with options, stressing that it could be very hard to try to process all relevant information.

Lack of cultural and religious literacy

Lay participants also talked about the need for HCPs to have cultural awareness and sensitivity, stressing that in ‘our culture we don’t talk of death’. An example given was that, for Asians, talking about death is seen as a bad omen. One community and faith participant talked about HCPs as having lack of cultural and religious literacy, referring to his own personal experiences as a Shia Muslim. He stressed that his beliefs meant that he or his family ‘do not take DNACPR decisions’ and the hospital found it difficult to understand this. He went on to state how the moment he started talking about religion, the doctor was ‘put off’. Both community and faith leader stakeholders stated that HCPs should apply cultural sensitivity and humility in supporting patients:

HCPs look at life from a Western lens, which conflicts with some cultures, such as some Asian communities who would try their best and give the patient water even to the point of death, which is considered good for quality of life. Whilst in a Western culture the patient is alone to die in peace: let’s leave her in a corner – she will starve and die; that is peaceful.

Preconceived stereotypes and own agenda

Health-care professionals recognised that they often have their own preconceived stereotypes and own agenda, with one participant stating ‘you have to make yourself stop and listen’, and others recognised the need to take every opportunity to hear the patient. As one participant emphasised, despite there being a whole crowd in the room (family members), it was important not to forget the patient. The patient may still have capacity and it was important to have a one-to-one discussion. Community and faith leader stakeholders stressed that it was important to understand individual family background and dynamics, as some patients may be intimidated by other people and fail to express their personal wishes and beliefs. The view was that organisations needed to take time to understand patient and family attitudes, faith dynamics, and the pressure patients and their families are going through. Equally, it was important to respect patient and family wishes and dignity, as one community and faith participant stated it ‘is not upon any individual to decide when someone is dying; instead HCPs should consider individual dignity and respect’.

Lack of training, opportunities and time

In general, HCPs recognised the importance of family dynamics, but they also needed more resources and training. They stressed that they were not taught about how to deal with family dynamics. As one participant stated, ‘In advance care planning it’s about dealing with the patient, not family’. Lack of time along with lack of opportunities were key challenges discussed by HCPs concerning attempting to approach the subject of EOLCP and any patient or family misgivings, with some HCPs recalling better opportunities to discuss EOLCP planning than others. Whether or not all opportunities to engage with EOLCP were always recognised was dependent on a HCP’s experience and confidence to broach the subject. One participant stated that their confidence and experience prompted them to ask, ‘Do you have a belief system?’, finding that this ‘opens up a new door’ in dialogue. Furthermore, they stated that ‘while HCPs are reluctant to ask, in my experience patients are OK being asked about religious beliefs’. HCPs also questioned whether ‘end of life’ was the best term, as there is a need to make language more positive. One HCP talked about the need to change language and move away from ‘end-of-life’ drugs and paperwork as these ‘can make people fearful’, a suggestion being to change to ‘anticipatory’ drugs.

Trust

Educator and academic stakeholder participants considered HCPs developing the trust of the patient and their family or more significantly ‘enabling trust’ as key in enabling EOLCP. Academics stressed that time, effort, continuity and knowing the patient were key factors in developing this. They also stated that relatability, which is ‘how HCPs make person-to-person connections’, supported their ability to build trust. Getting to know the patient, to understand what a good death meant to them, was key. Otherwise, as a HCP, ‘you can have good intentions but still provide suboptimal care’. Educator stakeholders stressed that humility in building relationships was a key enabler of trust, stating that HCPs needed to accept that they may get it wrong, so they should be reflexive, learn from mistakes and develop their own approach.

Effective communication

Health-care professional participants recognised that building trust was also based on their ability to establish rapport by developing effective communication. An example was given of taking visual cues: ‘If there are shoes in hallway, then I take my shoes off’. HCP participants also recognised that they needed to embrace opportunities to establish shared understanding. As one participant stated, they needed to ‘make sure everyone’s singing from the same hymn sheet’. Hence it was important to explore patient and family understanding of prognosis, both long and short term, thereby setting realistic expectations ‘about what we can offer’. Effective communication was key, and all HCPs and lay participants agreed that there was a need to use professional interpreters to achieve this goal, as opposed to family members.

Developing a personalised approach to end-of-life care planning

Academic and HCP participants stated that there was no one ‘best’ time for having discussions about the illness getting worse and dying. Instead, taking a staged or staggered approach was viewed as the most favoured approach to EOLCP. Lay participants acknowledged that HCPs should be honest about prognosis to patient and family, but also stressed that it is important for HCPs to respect patients’ and families’ wishes, preferences and decisions. As one lay participant acknowledged, ‘EOLCP is a constant back and forth and you will not have an answer straight away and it is about building a trusting relationship’. This was reiterated by academic participants who stated that the timing of end-of-life discussions is personal. Furthermore, academic participants indicated that evidence suggests that HCPs need to take an individualised approach to EOLCP, avoid acting on stereotypes and assumptions, establish the right person to liaise with and establish a patient’s choice list.

The fact that not everyone wants to have the EOLC conversation was also something that HCPs needed to accept, as quality of life means different things for different people. Lay participants stressed that it was important to understand what is quality of life to individual people. Some patients will go to any length to stay alive, whereas others will evaluate whether or not it is worth it and choose to be comfortable and to have time with family and friends. HCPs need to establish what is acceptable for each individual. They need to establish a patient’s limit and ‘discuss what he is comfortable with when it comes to his EOLCP’. Hope is also interpreted differently. For some people, hope means to stay alive at all costs; for others, hope is ‘to be able or allowed and supported to peacefully pass away’.

Knowing the patient

Knowing the patient or having a shared understanding or commonality in cultural background was viewed as an enabler, but, equally, being self-aware and reflexive was regarded as key, thereby acknowledging that one’s own belief system may be different (regardless of any presumed commonality) and not approaching patients with preconceived ideas. A person-centred approach was viewed by all stakeholders as key in terms of knowing the patient and understating what matters to them. One community and faith leader stakeholder suggested that this was particularly important with older ethnically diverse patients: ‘Most people of their age are afraid to speak in English, but actually can understand, the other thing is his faith: so focus on his needs and how we can help him with those needs’. The community and faith leader stakeholders also stressed that HCPs need to know a patient’s daily routine and need to ask key questions about this: Did they meditate? Rest? Did they have any contact with family? What was their environment like at home? These factors were seen as playing an important role in patients’ EOLC preferences. As with academic stakeholder participants, lay participants stressed that it was important to establish the patients’ choice list, indicating that this was key in opening up discussion about EOLCP. Instead of HCPs doing a checkbox exercise with own checklist, HCPs need to establish what really mattered to patients and their families.

Working with a patient and their families

There was also a sense in discussions of the need to work with the family carers as opposed to against them. Hence, it was important to validate the carer’s role. This was viewed as being particularly important when there is an element of mistrust of health services from the patient due to past experiences and it was important for the HCP to establish family carer support.

Empowering patients and being an advocate for the patient by giving patients control are key in helping to build trust both with the patient and with the family: demonstrating a commonality of intent to do the best for the patient/loved one. It is also key to empower a patient by giving them ownership to direct what is discussed with them and what is discussed with the family or other designated person. However, lay stakeholders stressed that it is important not to assume that family share the same beliefs. Hence, recognise that, even when people share the same faith, they are likely to have different views regarding their health and treatment.

It is important to establish the key contact person for the individual patient and family. Community and faith leader stakeholders acknowledged that it is important to know who the right person is to liaise with, and not to assume that the next of kin is the person consulted for all matters. As one stakeholder stated ‘Healthcare setting should have someone who is a link between hospital and patient to give knowledge of patient background. Different family members will serve different things. Don’t assume “next of kin” is the person to be consulted with health and everything because that person may not be comfortable with that’.

Raising awareness

Both lay and HCP participants agreed that there was a need to ‘start the conversation’ and have more awareness-raising in society so that talking about death, dying and EOLCP was less of a taboo. A HCP participant also acknowledged that the ‘Majority of people would cling to life, reinforcing treatments, medicalising death, instead of starting a conversation for patient’s families and communities and make work easier for HCPs [to discuss this] so that [it] is not a taboo’. Lay stakeholders stressed that it was important to engage community and religious leaders ‘to take this discussion to the community’.

Further training

All HCPs agreed that the way forward is training that will help to build HCP confidence to ask about faith or cultural beliefs. Educators also stated that HCPs need more teaching tools or best-approach guidance for having EOLCP discussions with ethnically diverse patients. This would support them in developing confidence in understanding nuances and verbal and non-verbal cues. One way of doing this is using simulated patients. It is also key that HCPs are taught the significance of cultural humility as an approach to care. Educator participants also suggested that developing as a practitioner is an iterative process, and HCPs need to adopt a reflexive approach to practice.

Lay stakeholders suggested that HCPs engage with interfaith forums to learn about different religions and cultures. One lay stakeholder participant stated that HCPs were welcome to interfaith forums to learn and understand how to work with people of minority and religious communities. HCPs also acknowledged that there were benefits to having discussions with faith leaders and/or community leaders: ‘If we can have faith, community and HCPs in the same room there would be a good place for HCPs to learn’. Lay stakeholders acknowledged that it is important to raise discussions about faith and beliefs with patients. They acknowledged that this is sensitive, but it still needs to be introduced. HCPs acknowledged that some guidance about the best way to phrase the questions would be useful. An example of how to introduce the discussion about spiritual beliefs was given by one HCP stakeholder: ‘This is obviously a difficult time for you; do you have any faith background or spiritual beliefs that support you at a time like this?’.

Developing training materials

All stakeholders found the stories to be a powerful tool to open the discussion in the workshop, and also in training and learning. The preference for all stakeholders was to reveal the stories in stages, slowly adding layers to complexity and diversity. Academics in workshops suggested that, if the stories were to be used in training materials, there should be specific questions to accompany stories. Stories should perhaps be produced as audio or film and have accompanying questions specific to each case.

Academic participants stressed that stories needed to address generational differences and take an intersectional approach as patients’ behaviours and needs are ‘not just about race, it’s also about poverty, class, ethnicity and faith, etc.’, so the stories should not be overly dominated by stereotypical cultural signifiers that represent diversity, such as language needs and food restrictions. This was seen as important to avoid learners reaching for the certainty of a checklist approach to culture (e.g. Muslims do this, Jews do that) and enable practitioners to work within the realities of the context of uncertainty and of the nuances of individuality, particularity and the layering of life experiences, heritage, culture and faith. This potential for overculturalisation of stories was in some tension with other participants, suggesting that people need to have some understanding of core components of cultural diversity. There was mostly agreement, however, that stories as a learning tool need to show that cultural hybridity exists, and promote understanding that differences exist between generations, classes, cultures and faiths.

Educators stated that using a story as a teaching tool was positive. Stories needed to be complex and interesting and, at the same time, feel authentic and engender sparks of empathy, which was the case with the stories used in the workshops. They also viewed as positive that the stories had no ‘rounding-off’ ending, that what happened was left open. As one educator stakeholder stated ‘there is an opportunity that we can support people without fixing. It’s nice sometimes to not have a solution’.

Academics also talked about the value of creating a forum of researchers and faith leaders to expand knowledge and evidence about ethnic diversity and PEOLC and addressing inequalities and inequities.

Behaviour change techniques and the use of concepts from NPT (as described in Chapter 2) were applied to the data gathered in the discussions in workshops and the workbooks. The potential learning mechanism to promote BCTs and enact the new behaviours in their practice are shown in Table 12. These mechanisms inform the learning resources developed in this study.

TABLE 12

How HCPs translate BCTs into practice

The field notes of the five workshops involving HCPs, in which the behaviours discussed were those involving ‘thinking ahead’ discussions with patients, were scrutinised for mention of BCTs. HCPs described behaviours that they thought were important to use in how thinking ahead was discussed with the family and also described ways of promoting these behaviours in practice through learning resources that included BCTs. HCPs described thinking-ahead discussions as a type of the goal-setting BCT that they employed in their work with patients and families, suggesting that HCPs should ‘set a staged approach, so that you break it down into pieces’. Another participant stated, ‘I try to make sure they understand that I am a support for them and that they make SMART [specific, measurable, achievable, relevant, time-bound] goals’. The BCT of general social support was twice mentioned by two people (and did not specifically apply to the BCTs related to emotional social support or practical social support): ‘I check with family what structures are there to support them’ and ‘I try to engage properly with the family and try and make sure they understand that I am a support for them . . . and also, as a HCP to respect family and culture of the family’.

In relation to influencing the behaviours of HCPs, a participant stated, ‘So maybe give HCP some guidance in the best way to phrase the questions’ about deterioration and dying in the context of ‘understanding their cultural belief systems’, which is an example of the BCT instruction on how to perform the behaviour. The BCTs of using prompts or cues was mentioned by three participants: two emphasised the need to take the cue from the patient to know if or when to progress a conversation ‘and exploring how far patients want to go’; another gave the example of ‘When patients say “I want to leave it to God”, you need to discuss whether to complete a DNACPR form to enable HCPs to know and respect her wishes’. A third professional said, ‘Sometimes HCPs have to tell themselves that they will need to deal with the crisis when it presents, as not all patients will take this conversation to the next level. It is important that HCPs don’t force these conversations’.

There was evidence for six of the NPT concepts in the HCP workshop discussions. Collective action is defined as the operational work that people do to enact a set of practices. This was implied in the statement related to working together to support HCPs talking with the patient and family about thinking ahead. It was stated in the context of understanding cultural differences that they ‘ensure they work together with, say, the GP, consultant, nurses and other stakeholders, so then all HCPs are singing from the same hymn sheet’. People also noted that being able to take the action together can depend on people having clearly understood roles (which is a component of collective action known as interactional workability): ‘So, making sure that they see HCP to be part of the family or friend so at least this helps to ease this process [of family involvement in thinking-ahead conversations]’. Learning resources that support the use of pictograms (described previously) to initiate exploration of family and social context and get to ‘know’ the patient and their background, and that are shared and updated within the practitioner and family ‘team’, are relevant to these practices.

In relation to the educational resources, a participant suggested a commonly used approach in adult learning, that of a collective forum of learners of differing perspectives and lived experiences. Having HCPs, public, and possibly patients in the same room with diversity of faith and ethnic community backgrounds was suggested to be a good place for HCPs to learn: ‘It is very powerful and makes you think about your responses.’ This suggests they want a common sense of coherence, defined as the ‘sense-making work’ that people do individually and collectively when they are faced with the problem of operationalising some set of practices. Sense-making relies on people working together to build a shared understanding of the aims, objectives and expected benefits of a set of practices. In the context of professional uncertainty, this is a powerful antidote to the paralysis that may otherwise arise.⁴³

There are four components of coherence, which are relevant to what HCPs want to achieve by their sense-making. First, the sense-making could be from discussing how and why these cases differ from their usual practice, which would be the concept of differentiation. Second, it could be about understanding their role and the tasks to undertake, defined as communal specification. Third, it can also be about individuals needing to do things that will help them understand their specific tasks and responsibilities around a set of practices, which is the NPT concept of individual specification. Fourth, it could also be sense-making to gain a collective understanding of the value and importance of new practices, defined as internalisation. So a forum could potentially support all four components of the concept of coherence.