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Morgan M, Kenten C, Deedat S, et al. Increasing the acceptability and rates of organ donation among minority ethnic groups: a programme of observational and evaluative research on Donation, Transplantation and Ethnicity (DonaTE). Southampton (UK): NIHR Journals Library; 2016 Mar. (Programme Grants for Applied Research, No. 4.4.)

Cover of Increasing the acceptability and rates of organ donation among minority ethnic groups: a programme of observational and evaluative research on Donation, Transplantation and Ethnicity (DonaTE)

Increasing the acceptability and rates of organ donation among minority ethnic groups: a programme of observational and evaluative research on Donation, Transplantation and Ethnicity (DonaTE).

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Chapter 4Hospital studies and consent to donation

Overview of studies

This phase moves the focus from registration as a donor to examining issues of family consent to donation among minority ethnic groups.

The research comprised two studies to examine the perceptions and practices of groups of staff who form major stakeholders in the organ donation process (SNODs, clinicians and bedside nurses) while a third study focused on the perceptions and experiences of bereaved families. The three studies are detailed below.

Study 1: interview and observational study

This ethnographic-style study involved observation, informal discussion and interviews with a range of staff at the five study sites (NHS trusts). We report here on three key themes:

  • theme 1: attitudes and practices of ICU staff in providing end-of-life care to minority ethnic groups
  • theme 2: SNODs’ role and participation in consent discussions
  • theme 3: hospital chaplains and end-of-life care.

Study 2: ethics discussion groups

These groups aimed to engage in-group discussion of donation-related issues with mixed groups of staff in NHS trusts to identify their shared practices and institutional philosophy, as well as points of conflict and collaboration.

Study 3: interviews with bereaved families

This study aimed to elicit perceptions of end-of-life care and the organ donation process among bereaved families from mixed and minority ethnic groups, and was conducted at home at least 3 months post bereavement.

The hospital-based research (studies 1 and 2) was undertaken in two regions with the greatest density of ethnic minorities in the UK, namely the London and the Midlands regions.

In the original application we stated that we would base the hospital fieldwork on four NHS hospital trusts, with these sites being selected to include larger ICUs, in which organ donation was expected to be a more frequent occurrence, and included a mix of different types of ICUs, to ensure that we would include both donation after DBD and DCD. However, during the initial fieldwork we became aware that, despite focusing our research on areas with large ethnic minority populations, there were only small numbers of patients from minority ethnic groups who were admitted to ICUs, possibly partly reflecting their younger age structure. We, therefore, added a fifth site located in an area with a large and mixed multiethnic population with appropriate ethics and R&D permissions. The five study sites each included general ICUs that cover a range of diagnoses, cardiothoracic ICUs at three sites and two sites had neurological ICUs specialising in conditions such as stroke and brain haemorrhage.

We initially visited each site to outline the DonaTE programme with senior staff [particularly clinical leads for organ donation (CLODs), SNODs and matrons] and discuss the data collection. Assistance was also requested in contacting ICU staff and members of the trust’s ODC on our behalf. Up to 2 weeks prior to data collection we contacted consultants and nursing staff with links with the organ donation process, together with all members of the Chaplaincy and ODC, to inform them about the research and invite their participation.

The second study, EDGs, required the inclusion of an additional site (sixth site) to complete the required 10 discussion groups.

The third study, interviews with bereaved families, also involved substantially expanded recruitment to a total of 40 trusts. This was necessary given that there were only 56 donors from black and minority ethnic families in 2012/13.3

The next sections present the detailed methods and findings for individual studies.

Study 1: interview and observational study

Overall aims and methods

This study focused on how the needs of ethnic minority families are met and the particular issues that arise for bedside nurses, SNODs and hospital chaplains in providing end-of-life care for minority ethnic groups.

Data were collected across five study sites (ICUs at NHS hospital trusts), with two researchers (CK and SD) spending 3 weeks at each site between July and December 2010. Data collection involved semistructured interviews, observation of the work of SNODs and informal discussions.

Study sites

The study was based in the London region and the Midlands, with these regions selected because they have the greatest density of ethnic minorities in the UK. The study sites selected within these regions were ones with the larger ICU, where organ donation was expected to be a more frequent occurrence.

All study hospitals were teaching hospitals with on average 42 designated ICU beds (range 36–56). All the sites had general ICUs that cover a range of diagnoses (e.g. stroke, heart attack, head injuries, accidents) as well as a range of specialist ICUs; four sites had specialist cardiothoracic units and two had specialist neurological units for conditions such as stroke and brain haemorrhage, with other sites catering for neurological patients on general ICUs.

Data collection

This involved a mix of non-participant observation, semistructured interviews and informal discussions at five study sites.

The researchers observed the activities of the units in short time slots (approximately 30 minutes) by ‘hanging around’ nurses stations, which were usually positioned with a view to covering most of the unit, or watching from a short distance the work of one or two of the unit staff at the bedside. This assisted the researchers in becoming familiar with key issues and activities of the ICU.

The researchers also ‘shadowed’ SNODs over several hours when a potential donor was identified on the unit, and observed four requests for family consent to organ donation with the family’s permission. These family approaches were observed at three of the study sites. In just one instance, the approach for consent to donation was observed for a family from an ethnic minority group. This reflected the relatively small number of families approached for consent over a 3-week fieldwork period and particularly the small number of patients from minority ethnic groups on the ICUs. This is not surprising, given that only 237 eligible ethnic minority donors were approached about donation in the UK 2012/13.3

Field notes were taken during observations or shortly after and contributed to the overall data set.

A series of topic guides were developed and covered five core areas for each group of staff, with additional questions applicable to a particular staff group. The core areas covered were:

  • broad overview of work and responsibilities
  • involvement in the organ donation process
  • communication with relatives regarding futility/withdrawal of treatment, end-of-life care and approach to organ donation
  • involvement with families of minority ethnic groups
  • views of the roles/practices of the SNOD/CLOD.

All participants were provided with an information sheet and gave written consent prior to interview. Interviews ranged from about 10 minutes to 2 hours and were tape recorded with permission. Interviews were conducted on ICUs, in offices or a side room, or occasionally in the hospital cafe.

We originally envisaged undertaking 40 semistructured interviews with hospital staff. In practice, we conducted 107 interviews, although interviews with bedside nurses were mainly quite short. This increased number of interviews partly arose from the addition of an extra study site; however, it also reflected a shift in the balance of data collection, with a smaller emphasis given to the observational element, as the number of potential donors was quite small during the 3 weeks spent at each study site. We also increased the number of chaplains interviewed, as they appeared to be an under-researched group with potential for an increased contribution in this area (see Study 1: theme 3 – hospital chaplains and end-of-life care) (Table 7).

TABLE 7

TABLE 7

Hospital staff interviewed at five study sites

Analysis

Audio-recorded interviews were transcribed in full and transcript data were managed using NVivo version 9 software. Full transcripts were read and coded for themes and subthemes. These related to identifying potential donors, providing support to families and managing visitors with particular reference to minority ethnic groups, treatment withdrawal and the donation discussion, and the roles and relationships of different groups of staff in relation to the organ donation process.

Many issues identified by staff, such as difficulties that sometimes occur for families in understanding that their relative is dead and agreeing to withdrawal of treatment, occurred among all ethnic groups. However, the next sections focus on three themes that emerged as being of particular potential significance for family consent to donation among minority ethnic groups:

  • theme 1: attitudes and practices of ICU staff in providing end-of-life care to minority ethnic groups
  • theme 2: SNODs’ role and participation in consent discussions
  • theme 3: hospital chaplains and end-of-life care.

Study 1: theme 1 – attitudes and practices of intensive care unit staff in end-of-life care

Abstract

This theme focuses on the attitudes and practices of individual ICU staff (bedside nurses, SNODs and clinicians) in providing end-of-life care for minority ethnic groups. It focuses particularly on issues identified by staff as problematic, particularly cross-cultural communication, managing large families and visitors, responding to faith/cultural requests, the use of chaplaincy services and overcoming language difficulties. Some variations in the way practices addressed these issues were identified between sites, reflecting differences in facilities, priorities and individual preferences of the clinicians. It was also noted that some members of all staff groups acknowledged uncertainties about approaching families from different cultural groups, with junior nurses at each of the study sites most often describing feelings of hesitancy in approaching a different cultural group. They were also particularly positive about training to enhance their confidence and skills in this area.

Aims

This theme describes the practices employed in ICUs to meet faith or cultural needs and to manage large families and numbers of visitors in terms of both access to the bed space and involvement in discussions of treatment withdrawal. It also pays particular attention to bedside nurses’ perceptions of their own confidence and skills in communicating with different cultural groups.

Background

The successful redesign of donation services in most countries, including Spain and the USA, has involved the appointment of staff with specific responsibilities for organ donation, including discussing donation choices with families. In the UK, a workforce of SNODs were appointed following recommendation 9 made by the ODT:4

The current network of Donation and Transplant Co-ordinators (DTC’s) should be expanded and strengthened through central employment by a UK-wide Organ Donation Organisation. Additional co-ordinators, embedded within critical care areas, should be employed to ensure a comprehensive, highly skilled, specialised and robust service.

At the time of fieldwork, 250 SNODs were employed by NHSBT (the national organisation with responsibility for blood and organ donation). SNODs are mainly drawn from senior intensive care nurses and are embedded within hospital trusts, and are on-call for other ICUs in the same region. SNODs are regarded as providing ‘a comprehensive, highly skilled, specialist and robust service’, and have responsibilities that extend beyond those of the previous donor transplant co-ordinators. Their role involves overseeing the donation process, from identification of a potential donor to organising and managing donation, including offering organs to transplant centres and co-ordinating the retrieval process. They also provide early and continuing contact with families, collaborate in donation discussions and conduct the Potential Donor Audit (PDA) that records the number of patients who could be solid organ donors and identifies reasons for non-referral and non-consent.

The role of the SNOD in the UK is supported by CLODs, who are clinicians (generally intensivists) with a part-time responsibility as ‘champion’ for organ donation within a hospital trust. This involves an educational and facilitative role to achieve the goal of normalising organ donation so that it becomes usual practice within the trust.

Although SNODs and CLODs have special responsibility for organ donation, it is recognised that the collective and co-ordinated behaviour of the wider multidisciplinary team involved in caring for patients and families on ICUs, particularly the bedside nurses, is also of importance in promoting a culture of organ donation and ensuring appropriate communication and responses to the needs of different patient and family groups.

Methods

The analysis of practices undertaken in ICUs and responses to minority ethnic groups is based on interview and observational data as previously described (see Study 1: interview and observational study, Overall aims and methods).

Findings

This section discusses professional practices in supporting families of different ethnic, cultural and faith backgrounds and focuses on the themes of accommodating faith-based needs and requests, overcoming communication barriers and managing families at the bedside. These findings often provided examples of how staff met the needs of diverse patients and families despite having little formalised cultural competency training.

Accommodating faith-based needs and requests

Consultants, nurses and SNODs all mentioned the role of faith and religious beliefs in terms of end-of-life care, and offering faith or religious support appeared to be a well-established practice among all the hospital study sites. Consultants and SNODs would often broach the subject to families directly as part of standard practice at either admission or end of life, or both. In some ICUs there was also an end-of-life care form that asked whether spiritual needs had been addressed or not, or if the family had been offered chaplaincy support.

Staff at two study sites mentioned how even people who describe themselves as not being religious would take up hospital chaplaincy, especially during withdrawal of treatment:

Variably, I would say probably about 60 or 70% of people take it up. I mean even if the patient isn’t religious, if there’s any question, they go for it. Sometimes they’ll say, ‘Oh no, he didn’t believe in all that, so no thank you.’ But I would say about 50, 60% of people do take it up actually yes.

Consultant, site 2

Staff described families for whom faith was significant for himself or herself or the patient as often wanting the support of a faith leader to be reassured that their decision regarding withdrawal of treatment was compatible with their own religious belief system. In addition, such contact often took away feelings of guilt when they supported the clinician’s view regarding withdrawal of treatment.

In addition to families being offered the services of the hospital chaplaincy, it was observed that they often sought the support of their local faith leaders, with this being most common among families of Islamic faith and African Christians.

And most of the local Muslims, they will want their imam from their own mosque to come in, or they won’t want a stranger. And I think most, most mosques, they’re not like, it’s not like Church of England where, you know, they are sort of fairly similar – I think there’s a lot of differences, and it’s more about the local society . . .

Consultant, site 5

Many of the Nigerian African families bring their own pastors. And they wouldn’t want to see a hospital chaplaincy, because they would believe in different things, operate in a somewhat different angle.

Consultant, site 2

Faith and religious support was also seen as a resource for staff, as faith representatives could help the families understand the futility of further treatment and accept the withdrawal of treatment or clarify their faith’s position on organ donation. These representatives were viewed as figures of authority through their spiritual knowledge and were also described by SNODs as having the authority to say things to families that SNODs sometimes felt unable to.

Generally, staff only spoke of the chaplains’ support in terms of assisting in treatment withdrawal and end-of-life care, given that the hospital chaplaincy helped only to facilitate the organ donation request at one study hospital. At this site, the chaplains addressed the families’ religious concerns and assured them that helping other people in this way was not against their religion.

Aside from calling on chaplaincy support or their own faith representatives, staff recounted how some families would observe a range of faith practices at the bedside, including prayers and chanting. Where feasible, a side room was arranged to accommodate this. Other requirements, especially for Muslim and Jewish families, related to wanting a quick burial for faith or cultural reasons with this otherwise forming a barrier to organ donation. However, interviewees from different study sites observed that fulfilling this request was not always possible if they were going for donation, or if it is a coroners’ case or death occurs at the weekend. However, when possible, they fulfilled particular requests and regarded this as an important aspect of providing individualised and family-centred care.

Overcoming communication barriers

Practices varied across the study sites in the provision of interpreters when this was required. Interpreters mentioned ranged from professional interpreters supplied by the hospital (in person or over the telephone), to other members of hospital staff, family members and occasionally a faith leader.

Staff tended to first mention using professional interpreters because they were seen as reliable in delivering the correct information to families. However, the availability of interpreters depended on the timing and demands on the service.

In cases for which professional interpreters could not be present, LanguageLine (www.languageline.com) could be used; however, most felt that this option was not ideal for dealing with sensitive situations like end-of-life care. They, therefore, often preferred to use other staff as interpreters, especially as the study hospitals employed a diverse workforce that could be called on to interpret if necessary:

Yes. We have great access to many doctors and nurses in this trust who are from millions of different countries. So we can access people at short notice if we need to, if there’s a problem with an interpreter service. There’s a list actually, I don’t know about each hospital, but our hospital here has a list of languages spoken and where you can find those people and if they happen to be on duty at the time, they are always helpful to come and speak.

SNOD, site 1

One hospital site was more likely to use staff as interpreters before professional services. This was both because hospital staff were more readily available than professional services and to also overcome the cost issue:

You try and find someone within the service who will translate for you, before you start looking to translation services because there’s a cost implication there, which is not your primary concern, but it has to be – we all need to think about these things. If a service needs to be provided, if that’s the way to do it, then that’s the way to do it. But you look at other options first.

Nurse, site 4

At all the study sites, family members would be used if there were no other options available. However, at one site (site 3) family members were mentioned as being involved before other staff members, whereas at other sites staff described family members as being unreliable interpreters, with the general practice in their units being that they should be avoided if possible. A particular concern was that family members would often filter things and withhold information to ‘protect’ the patient or other family members. Family members were, therefore, described as:

often interpreting what they think that the family wants to hear as opposed to what you’re saying, so wherever possible I use interpreters, staff as a second line but only when there’s absolutely nobody then a family member but then try to use a family member who’s much more remote from the immediate family members, so (a) because I think it’s unfair on the family members and (b) as I say because we can never guarantee what we tell them is what they tell their family.

Consultant, site 5

Similarly, a preference for using non-family members was echoed on another site:

Yes, I like to use non-family members if I can, so if there’s somebody on shift that may be can liaise a little bit, then I will try and get them involved. I’m not saying that I don’t trust family members, but I have, I have experienced before family members keeping information from the husband or the wife of the person that’s died. I have experienced them actually keeping information from them. Trying to protect them, but yes they don’t always keep them fully informed.

Nurse, site 4

There were only two examples of a faith leader acting as interpreter and in both instances was an imam.

Managing large families and numbers of visitors

There was a general perception that minority ethnic patients would be likely to have large numbers of visitors. This was regarded as particularly true of patients and families from the Asian subcontinent, with a cultural expectation that members of the community would come to the ICU to pay their respects. Several staff referred to 40 or 50 people and even over 100 people sometimes waiting to visit the patient. However, it was unclear how often such large numbers of people were actually present and how far this differed from other families in close-knit communities.

Different ways of managing large family numbers were described so to minimise disruption to the ward. This usually involved allowing only two people at the bed space, with staff frequently working with families to identify who were their close family members. In some cases a password system was then used to restrict access:

But basically we just keep to the two people at the bed space, we set up passwords so that only certain members of the family can come through, because otherwise their cousins, uncles, brothers, wife, daughter comes. And that’s the, that’s how we can say, ‘Well actually you can’t come in, because you don’t know the password, so you’re not immediate family.’ And we often have to get security to clear the ramp and around here, because they say that the higher up in the community they are, means the more people who will come.

Nurse, site 5

A further key issue related to who should be involved in decision-making, which, in many cases, was viewed as not simply a matter for the next of kin. As a SNOD explained:

. . . what I will do is I will identify who the key players are, and the key players might not be, you know, for example, with an Asian family or a Sri Lankan family, it won’t necessarily be the wife, but it will be male members of the family. You know, with the female members, particularly with some of the ethnic minority backgrounds, is very, very much kind of more emotionally related, you know, and ensuring that they’re prepared for the conversation. You know, ‘Is this a conversation you want to hear? It’s going to be distressing, please be prepared.’ You know, and for some of them, and it’s almost kind of guiding them not to be there. You know, ‘There will be decisions that need to be made, are you the person that’s going to make that decision?’ ‘No I’m not.’ ‘OK, well can you tell me who is?’

SNOD, site 5

However, ICU staff differed in their views of the numbers of people who should be involved in communication about futility and withdrawal of treatment or organ donation. Some staff felt that the more people involved in decision-making, the more room there was for disagreement, especially on the topic of organ donation, and so favoured smaller numbers of people being involved. As a SNOD explained:

The less people that you approach about organ donation, the better, because the less people are going to stick their oar in and have their, you know.

SNOD, site 1

Staff also wanted to keep family numbers smaller owing to space restrictions of waiting rooms:

And we do, we are very good here that we will limit it, and I mean you’ve seen the size of that room, it’s tiny. So we will only realistically have a maximum of six people. So we can minimise it through physical space. And we’ll do it that way. But yes we do try, but we do it . . .

SNOD, site 5

Another reason to limit the number of people was given because of different, and often more vocal, forms of emotional expression.

The problems in my experience, tend to come when you get a large group of people and then that’s when the sort of more extreme reactions can come out of that sort of – but generally trying to keep that group fairly small, to try and stop that – so you haven’t got someone wailing in each of the four corners of the room, then you can’t talk properly, you can’t get them to concentrate on what you’re trying to tell them . . . On one occasion I think there was certainly some extreme reactions from mostly the – like the female members of the extended family.

Nurse, site 3

Similarly, a CLOD observed:

Well, you know, one of my reasons for limiting the number of people in the room when I break bad news, is the deafening wailing that – you know, as long as you’re expecting it, that’s fine. I must admit I’ve learnt the hard way to make sure everyone is sitting down, because I have had a few people throw themselves on the floor . . . I think in some ways I think it’s far more healthy having a good loud release of emotions, than the Caucasian upper lip, you know, ‘Oh I’m sorry, I shed a tear doctor, how uncouth of me’! But, you know, ‘for God’s sake, it’s your husband that’s died, you’re allowed to wail a bit if you want.’ But no, I mean the only startling thing is, is that the amount of noise that sometimes is generated – I was going to disparagingly say, histrionics, but that’s not quite right, but the, you know the fainting and throwing to the ground that goes along with it sometimes. But again if you’re expecting that, it doesn’t take you by surprise, but I think, you know, I remember as a registrar, the first time I heard that, I was horrified and I was shouting for help.

CLOD, site 3

Whereas most staff sought to limit the number of family involved in discussion, a few favoured getting all close family members together for discussions about end of life. This was because they felt that restricting numbers may cause more problems later on when information was relayed to other members of the family.

I would say to the family that they need to bring in all the family members that they feel need to be present for a very important discussion about their relative . . . You have to allow the family that chance, that would be my view. Because you’re only storing up problems for yourself, because you – if you make the family prioritise family members for that conversation, you’re automatically making the family argue amongst themselves, but usually you can tell who the spokespeople are, very quickly.

Consultant, site 5

A consultant at another site explained:

Usually we try to get all of the close family together and just have a conversation once, because sometimes the families can be large and there will be people who take slightly different views or maybe have different questions and different issues they want to raise.

Consultant, site 2

However, problems of the limited space and facilities to accommodate large numbers of people were noted, especially in older hospitals where side rooms and family rooms are generally quite small.

Nurses’ perception of cross-cultural communication

Only one of 28 bedside nurses interviewed mentioned having received training relating to cross-cultural communication. Not surprisingly, given the lack of formal training and often limited experience of patients from minority ethnic groups, the nurses often felt it was difficult to approach families from a different ethnic group unless they had developed on-the-job experience of this. As one nurse explained:

I’m worked in London for, what, 6 years now. I’m not that familiar with different races, I come from the middle of the country where there’s farmer Giles and all the blooming same, you know. And to me it’s a fascinating world and I just, I just love being involved with the families. You just learn so much from it. To me it’s a whole life experience, not just a nursing experience. But equally, if I don’t understand that family very well I’d find it very difficult to, to go in and approach them.

Nurse site 2

The lack of formal training and experience meant that ICU staff often drew on social constructions of people from minority ethnic and faith groups different from their own. For some, a lack of contact and experience in supporting patients and families from minority ethnic groups meant that they were constructed as ‘other’. For example, following an informal discussion with a bedside nurse, the following field note was recorded:

In relation to what the participant (bedside nurse) terms ‘ethnics’ the family members of sick and dying patients on the unit were seen to be a serious problem, causing disruption to the unit and overcrowding the waiting room. She described these people as tending to have more than two kids and so it can mean too many family members would want to see the patient, causing disruption to the unit and overcrowding the waiting room.

Site 4, field note

There was also a view that people of Asian origin and the African Caribbean population may often not be approached for donation as they were seen as less likely to donate: ‘I think, because there’s a lot of experience of donation not being quite so favoured with the two ethnic groups (Asian and African–Caribbean). And it is probably a massive stereotype, because there are some from both groups that do.’ She went on to note that ‘there were also quite often quite a lot of real language barriers sometimes with some of the Muslim families that make it even more difficult’ (nurse 19, site 3).

However, experience of working with different families meant staff understandings often shifted from a more general view of ethnic groups to recognising the heterogeneity and individual variations within groups, as this nurse explained:

And I think that often the cultural things, it involves a little bit of working with the families as well and realising the families themselves have their own culture within them, and they may not go down the textbook route that this is what a Muslim family does and this is what a Christian family does and this is what a Buddhist family does. And trying to have the ability to be mature enough and confident enough that we can let that family take it the way they want it to go, as long as it meets within the law. I think that’s the bit that takes a bit more experience perhaps.

Nurse, site 2

Of those specifically asked about cultural competency training, most felt that it would be welcomed and that it would benefit the ICUs by preventing (unintentional) situations of insensitive care before they could occur. An example was described by a SNOD:

Well you see here on this unit, we don’t receive or not we don’t, the nurses don’t receive ethnicity and diversity training. We have a Muslim lady who had come back from theatre, and they won’t cover their head. And, you know, because they’ve had a brain operation, now OK fair enough that you have to take the head covering off, but, you know, it is reasonable that at some point, when they’re back, that actually you can make some attempt to cover up the person’s head. Now when that person starts to wake up and have their tubes out, they’ll be absolutely mortified to think that how long have they been like that. And nobody’s, and they’ll – and I’ve seen them grab, you know, like take pillowcases off the bed and try to cover themselves up. And the nurses are just oblivious to what’s going on and you think, ‘Bloody hell,’ you know. Just – and I don’t know, I mean I think that, that’s probably, you know, from a hospital perspective, something that we need to, you know, we need to look at. You know, how do our nurses deal with these patients?

SNOD, site 1

Conclusions

  1. There is a lack of formal training in what is termed ‘cultural competency’, with individuals mainly relying on their ‘on-the-job’ experience to respond to people’s faith and culture in the provision of end-of-life care. However, junior nurses often had less experience, sometimes leading to what has been described as a ‘disabling hesitancy’ and inertia in their practice, particularly in situations where families are experiencing considerable emotional distress.89 They thus welcomed training to increase their confidence in supporting families from minority ethnic groups and reduce stereotypical views.
  2. Key aspects of care that were often regarded as problematic, and particularly in relation to minority ethnic groups, were managing large families and visitors in terms both of patient access and communication by clinicians, responding to language barriers and accommodating faith-based practices.
  3. Variations in practices in terms of responding to the needs of ethnic/faith groups were often influenced by the hospital facilities and capacity as well as by established organisational practice and cost constraints. For example, the use of interpreters varied, with some hospitals more likely to use professional services, whereas some rely on staff first because of availability or cost, and others may use families because there is established precedent to do so. Similarly, being able to accommodate large family groups is influenced by the availability of side rooms off the main ICU ward and the size of family rooms. There were also differences between clinicians in their preferred practices, including their ways of managing large families, with some preferring to include a large family group so that all received information directly while others preferred a small group of close relatives.
  4. It was common to offer chaplaincy services for withdrawal of treatment and formed an important example of how hospital staff aimed to meet the needs of people from different faith backgrounds. However, when feasible, staff also aimed to respond to particular requests that might be made by any families, reflecting the importance of achieving individualised care. Examples included families wishing to pray around the bed and requests for pieces of jewellery or other mementoes to be placed alongside the dying patient.

Study 1: theme 2 – specialist nurses for organ donation’s role in relation to families and the consent discussion

Abstract

The establishment of SNODs was a key aspect of service redesign that was introduced following the ODT report. Although SNODs receive specialist training in communication skills and aim to provide long contact with families, there is evidence that a significant number of donation requests continue to be undertaken by the clinician alone. This theme, therefore, examined the reasons for the lack of full implementation of the SNODs’ role and focused on both clinicians’ views and responses to the introduction of SNODs whose remit partially overlaps with the medical jurisdiction and the strategies employed by SNODs to embed their role within ICUs. This identified considerable variation in the degree of acceptance of SNODs and examines the varying personal, clinical and organisational factors that have led to the slow adoption of early referral to SNODs of potential donors and their participation in collaborative consent discussions.

Aims

To examine the SNODs’ role in relation to families including the constraints on early referral of a potential donor to SNODs and their opportunity to collaborate in donation discussions with families.

Background

Consultants were traditionally responsible for assessing patients’ suitability for donation and undertaking the donation discussion with families. However, it is now expected that the SNOD will participate in these activities. This involves being informed when brain stem testing for neurological death of a patient is planned or the futility of further treatment has been discussed with a patient’s next of kin.4 The SNOD then checks the patients’ clinical suitability for donation and whether or not a patient is registered as a donor by consulting the ODR to which only the SNOD has access. Second, discussion of the possibility of organ donation with bereaved families was recommended by the ODT as ideally involving ‘collaboration’ between the consultant and SNOD, with this subsequently endorsed by the National Institute for Health and Care Excellence (NICE) guidelines, with the expectation that both the SNOD and the consultant would contribute and be present throughout the donation discussion.89 Collaborative requesting has also been affirmed in local donation policies at trust level.

The routinely collected data support the positive effects of the involvement of SNODs, indicating that the consent rate is higher when a SNOD has been involved in a collaborative donation discussion with families than when this discussion is undertaken by the consultant alone. For example, in 2012/13, the consent rate was 65.8% when a SNOD was involved, compared with 36.7% when there was no SNOD involvement.3 The difference was greatest for DCD donation. For example, in 2012/13, SNODs were involved in 71.3% of approaches, with this made up of 78.9% of DBD discussions and 66.7% of DCD consent discussions, reflecting a slight increase in involvement from earlier years.3 However, as these figures indicate, a significant proportion of donation discussions continue to be undertaken by the clinician alone, although involvement of SNODs increased from 59.6% in 2010/11 to 71.3% in 2012/13.

The role of the SNOD impinges on the traditional medical jurisdiction, at least at its boundaries, and requires clinicians’ acceptance of the shift in responsibilities. However, consultants’ responses to this have not previously been explored.

Methods

This theme draws on the interview and observational data described in Study 1: theme 3 – hospital chaplains and end-of-life care.

Findings

The interviews indicated that all consultants welcomed the SNODs’ involvement in the administrative and nursing aspects of organ donation, including their role in organising the retrieval and offering process. However, they varied in their acceptance of those aspects of the SNODs’ role at the boundaries of their traditional medical jurisdiction. Views on this varied both within and between ICUs. This was reflected in differences in clinicians’ willingness to notify the SNOD of potential donors and to allow SNODs to participate in a collaborative donation discussion.

We distinguished three groups of consultants in terms of their response to SNODs and willingness to refer potential donors to the SNOD and engage in a collaborative consent discussion.

Acceptors

This refers to the group of ICU consultants who described how they worked with SNODs collaboratively, with this collaboration occurring whether the SNOD was embedded (i.e. based in the particular ICU) or attending the ICU on an on-call basis. They were happy for the SNODs to be around the unit and for nurses to refer potential donors to the SNOD, and described talking informally with the SNODs about patients who might undergo brain stem death tests. This group also recognised and valued the SNODs’ particular skills in supporting families and discussing choices regarding organ donation. This view is illustrated by a consultant who commented:

Yes I think it’s [SNOD] an essential role. I don’t see how the process could work without them. And they’ve got specialist knowledge that we don’t have, and they can stand independently away from the caring team, and only come on line, you know, in collaboration with us. And their role is clearly prescribed, yes, an essential role, essential role.

Consultant, site 4

These consultants thus appeared to have reached a point where they had come to trust the SNODs’ expertise:

And it’s interesting looking at 2 years of data that there’s some consultants of 2 years ago who were not doing collaborative [approaches], but now they’re doing all their approaches as collaborative. So it is a step-wise progression. I think it is just gaining that trust and knowing that, you know, the person you’re taking into the room for this difficult discussion, is going to be on the same page really.

CLOD, site 3

How a ‘collaborative’ approach actually worked in practice, however, varied between consultants, reflecting a situation in which although collaborative requesting is identified as an ideal model its precise form is not fully specified and is, therefore, open to local interpretation and negotiation. Collaborative requesting sometimes took the form of a ‘decoupled’ approach, whereby the consultant broke the bad news to kin, and explained the medical situation and futility, and the SNOD then approached the family to discuss consent for organ donation. Another model was for consultants and SNODs to work together in what might be viewed as a ‘fully collaborative’ approach, with consultants often describing how they drew on the SNODs’ experience to decide when to raise the topic of organ donation or decided between them how they would approach a particular family.

Resistors

This describes a diametrically opposed group and consisted of those consultants who rejected and vigorously resisted the central role of the new professional group of SNODs. When a request for donation was made to the next of kin these consultants were unlikely to allow the SNOD to be in the room at the time. Others sanctioned the SNODs’ presence, although the SNOD was not permitted to make any contribution to the discussion. The SNODs’ involvement in this situation was, therefore, mainly limited to checking to see if the patient was registered as a donor, and if consent was obtained they took formal written consent from the next of kin and organised the retrieval process.

The consultants we categorised as ‘resistors’ generally acknowledged the need for improvements in the system but regarded this as best achieved through the intensivists rather than SNODs:

So you need to give the responsibility for that to the people who have the power to deliver it. And that’s the intensivist.

Consultant, site 3

These consultants also viewed themselves as personally responsible for deciding whether or not, in their professional opinion, it was appropriate to ask the next of kin about organ donation, rather than accepting the current requirement and referring all potentially suitable patients. In particular, they emphasised that they sometimes regarded referral as inappropriate if they thought families had ‘been through enough already’ or were not likely to consent. They were also strongly resistant to the need to refer patients who they regarded as clearly clinically unsuitable for donation, despite the possibility that such patients might have at least one organ suitable for transplantation.

Other reasons given by consultants for resisting SNODs’ involvement was that they regarded themselves as best placed to discuss organ donation choices with kin. They explained that as they had already developed a rapport with the next of kin this made it more appropriate to undertake the consent discussion themselves and regarded this as preferable to introducing a stranger (the SNOD) at a time of acute grief. This view was often linked with feelings of their own personal responsibility to the patient and its extension to their next of kin:

I may be a bit old fashioned, but I still think that my duty is to the patient, and the relatives must see me as acting on behalf of the patient, not on behalf of getting organs for someone else, even though we all believe in that . . . I don’t like the idea of a transplant co-ordinator coming in and sort of hovering around the place, as we’ve occasionally had, when the patient isn’t yet formally dead.

Consultant, site 2

Although ‘resistors’ occurred across all types of ICU, there were particular issues for consultants who worked in general and cardiothoracic ICUs and thus cared for patients who could be potential donors after circulatory death. For these patients, judgements of suitability were more uncertain given the patients’ greater age and often multiple morbidities, and consultants often described how they were keen to do everything possible for the patient both for the benefit of the next of kin and to avoid litigation, even if this meant continuing drug treatments that would ultimately make the patient unsuitable for donation. Clinicians’ concerns regarding the patients’ suitability for donation and issues of the timing of withdrawal, therefore, related particularly to DCDs, and especially controlled DCDs. This involves organ retrieval following the planned limitation or withdrawal of cardiorespiratory treatments at the end of a critical illness from which a person will not recover and thus differs from the less problematic situation of uncontrolled DCD, which occurs when patients are not successfully resuscitated from cardiac arrest. The early involvement of the SNOD was, therefore, regarded as unhelpful in this situation and led to resistance to the SNODs’ completion of the PDA, which records reasons why a potential donation did not occur.

Controlled DCD has recently been subject to a number of guidance documents,90,91 including the recent policy document, Taking Organ Transplantation Towards 2020.15 The UK Donation Ethics Committee (UKDEC)92 has also considered ethical questions that relate to how death is diagnosed, how decisions are made about end-of-life care and organ donation, and conflicts of interest between the donor and potential recipient. Recommendations have been put forward for nationally agreed protocols, including guidance for the withdrawal of life-sustaining treatment together with a scoring system to help predict the likelihood of death within a given time period so as to identify patients who would not be suitable for DCD. Such guidance may increase clarity and reduce the tensions and resistance that can occur in managing these patients and assessing suitability for donation.

Intermediate responses

This group of consultants was probably often in a transitional situation. They still retained authority over the whole donation process but were prepared to release a limited amount of ‘turf’ to the SNODs as their suspicions and uncertainties in the SNODs began to wane:

But I guess there was a little bit of resistance, because we felt to a degree that we were being spied upon or somebody was there to audit what we were doing and they’re just sat in that office next door. Now it certainly hasn’t turned out like that and I don’t feel that we’re being sort of observed. And I think that’s a good positive reflection on the transplant coordinators and the personalities, the personnel and personalities involved.

Consultant, site 4

These consultants recognised a partial contribution that SNODs can make to the process and thus permitted limited involvement. For example, when they identified a patient as a potential donor requiring brain stem testing, they often asked the SNOD to begin to check the patient’s suitability and whether or not they were on the ODR. However, whether or not this led to the SNODs having contact with the next of kin or being part of a collaborative approach to discussing organ donation was less certain and often depended on the consultants’ professional trust in the individual SNOD. Nevertheless, these consultants acknowledged some aspects of the SNODs’ role and the value that they may have in providing support for the next of kin:

[the SNOD] has made the whole process easier and they do offer some family counselling and support which is also very useful.

Consultant, site 3

At times this ‘intermediate’ group of consultants acknowledged that there were aspects of breaking bad news to the next of kin and proceeding to ask about organ donation that they found uncomfortable and suggested that this could be addressed by leaving the consultant to break the bad news and then handing over to the SNOD to raise the issue of organ donation, thus essentially considering a decoupled approach. As one consultant (site 5) noted, ‘I do quite like the idea of separating the two things. You know, a different person asking.’ However, the same consultant was hesitant about letting ‘any SNOD’ take on this role because of what they perceived as inconsistencies between individual SNODs’ interactions with the next of kin.

These consultants were, therefore, generally willing to ‘trial’ a SNOD, or more specifically an aspect of their skills set, and when they had previously worked with a SNOD and valued an aspect of their contribution were willing to build on this experience and allow the SNOD further involvement. The consultants’ trust was thus initially in the individual rather than the profession. However, it took time for these working relationships to develop in view of the mix of staff, shift patterns and organ donations being relatively unusual events. It was, therefore, often quite a time before the same consultant and SNOD worked together again, which may have contributed to the slow pace of change. Moreover, when this was not a successful experience for the consultant they would often then limit the role of the specific or any SNOD in future potential donations.

Explaining variations in clinicians’ responses

Each of the three types of responses occurred at each site and were also observed to occur within each ICU. More generally our analysis suggests that variations in consultants’ views and practices were influenced by a mix of personal, clinical and contextual factors, with these factors often interacting to produce a slow pace of change in what was a relatively infrequent event for individual consultants.

Personal characteristics of clinicians

Across the sites it was acknowledged that it was often, but not always, the very senior (older) and influential consultants who were the most resistant to changing their practices relating to organ donation and were sceptical about the significance of the role that the SNOD could play in the process. Many of these consultants also felt less comfortable personally with organ donation and in their communication on this topic, and for these reasons were often less willing to involve a SNOD.

Willingness to refer and engage in a collaborative discussion was also influenced by whether or not consultants knew the SNOD and their perceptions of the personality and experience of the SNOD. Many of the initial group of SNODs had previously worked as a fairly senior intensive care nurse on the ICU, although this situation has changed as new SNODs have been appointed.

Culture of intensive care units

Differences in the culture of donation between units often appeared to be influenced by the leadership provided by the CLOD. Some CLODs were very committed and active in their role of educating and normalising donation and formed true ‘champions’, whereas others had not necessarily sought the position of CLOD and were less enthusiastic, committed and active in this role.

Type of donation

Other differences occurred between the neurological ICUs, in which brain stem testing provides a clear time of death for the patient, and a general or cardiothoracic ICU in which decisions regarding the timing of withdrawal of treatment and the interventions facilitating DCDs are often more difficult. Many concerns regarding DCDs raised by consultants in our study are currently being addressed with the aim of achieving a professional consensus on the ethical and legal issues relating to DCDs and developing agreed standards of practice together with protocols for local implementation. These developments may, therefore, have a key influence in facilitating change.

Responses by specialist nurses for organ donation

The SNODs were aware that consultants had the power to limit their claims to practice and of the varying responses of individual consultants. They also recognised that given the considerable autonomy of consultants in the NHS there was often little opportunity to achieve full engagement in their role through formal channels. SNODs, therefore, often relied on informal strategies to shift boundaries in their favour and as a way of ‘getting things accomplished’.

The informal strategies employed by SNODs included a range of non-verbal and positioning approaches to make their presence visible to ICU staff; this involved walking through the unit and talking to the bedside nurses and the clinical staff to make their presence felt and increase their opportunities for inclusion. They also valued having desk space on or close to the ICU to increase their visibility and accessibility, and sometimes used visibility strategically in situations when there was a potential donor on the ICU but they knew that the particular consultant might not automatically include a SNOD. In this situation:

we’ll be more visible. And we will have more discussions with them, just to make them aware that we actually here.

SNOD, site 5

The SNODs also often attended handovers as a way of enhancing their visibility and knowing if any patients were likely to be brain stem tested and whether or not organ donation would be considered.

The SNODs’ visibility and accessibility and their contact with other ICU staff sometimes led to ‘strategic alliances’, which were particularly valuable when ICU consultants were reluctant to refer a patient or to consider organ donation. In these circumstances a member of ICU staff, such as a bedside nurse or the nurse in charge, might informally inform the SNOD about a particular patient and the SNOD could then investigate further and talk to the consultant about the patient.

Negotiated approaches by SNODs sometimes benefited from support of the CLOD, who could use their peer-to-peer negotiations with their clinical colleagues to endorse the value of the SNOD and provide them with an entry point. For example, a CLOD described the value of ‘opportunistic chats’ with his consultant colleagues and explained that it was then up to the SNOD to take this forward and make further progress.

Conclusions

  1. Implementation of the SNODs’ full role in relation to families is only gradually being achieved. This reflects a situation in which acceptance of the SNODs’ activity in areas that were traditionally within the medical jurisdiction varies between individual consultants with the lack of a fully ‘collective acceptance’ that is ICU or trust wide. There are also marked regional variations. Figures for 2012/13 indicated that collaborative involvement of SNODs in donation discussions varied from a high of 80.4% in South Central (London area) to a low of 40.5% in the South West.3
  2. None of the trust sites reflected a linear development of the SNODs’ involvement for the ICU as a whole. Instead clinicians categorised as ‘acceptors’, ’intermediate’ and ‘resistors’ appeared to occur concurrently on an ICU. This reflects a more general finding of the varying speed of uptake of innovations, which is influenced by the interests of consultants and other health professionals interacting with the organisational and cultural context.93
  3. Factors identified as contributing to lack of acceptance of the SNODs’ full involvement with families and their collaboration in consent discussions included the beliefs of clinicians in their personal competence in communicating with families; their experience of working with individual SNODs; perceptions of their own responsibilities to families; and the clinical and ethical issues surrounding controlled DCDs. There were also often perceptions of a conflict between the SNODs’ interests and role in conducting the PDA and what clinicians viewed as best practices for patients undergoing planned limitation or withdrawal of cardiorespiratory treatments.
  4. Evidence that consent rates are higher when the donation discussion is collaborative indicates that increasing the proportion of family discussions conducted collaboratively would have a major impact on family consent rates.

Study 1: theme 3 – hospital chaplains and end-of-life care

Abstract

Hospital chaplains from different faith groups were interviewed as forming part of the multidisciplinary ICU team. Given the limited knowledge regarding the role of the hospital chaplains, we examined how they viewed their role in supporting patients and families from different faith groups. This identified the importance of generic chaplaincy work, offering spiritual support to patients and families in terms that are not informed by religion. All saw themselves as making a contribution to end-of-life care and most were supportive of deceased donation but had limited knowledge of its processes and practices. Scope was identified for greater involvement of hospital chaplains both within the hospital setting and in the community, with appropriate training and contractual requirements.

Aims

To explore the perceptions and practices of a diverse sample of hospital chaplains regarding end-of-life care and organ donation.

Background

NHS chaplaincy is emerging as an allied health profession that covers a range of religions and spiritual orientations. Hospital chaplains aspire to be relevant to the whole population of health-care users and have a potentially important contribution in supporting patients and families at the end of life as part of the multidisciplinary team.94,95

Hospital chaplaincy teams in major British cities involve chaplains from different religious backgrounds and spiritual practices to reflect the local population, working in part-time and full-time capacities, both as volunteers and on a salaried basis. As with other allied health professions, NHS chaplains’ work is described and managed in secular rationalist and humane terms, without reference to religious doctrine.

In principle, a chaplain from any faith background can become the lead chaplain with responsibility for managing the chaplaincy team. In practice, it is likely that lead chaplains will continue to be from Christian traditions for the immediate future since salaried chaplains from minority faiths are recent and currently often part-time appointments.

Research from the USA suggests that the chaplains’ role in supporting patients’ decision-making around end-of-life care makes a measurable difference to outcomes.96 It may also be expected that the chaplains’ role may, for some, influence donation decisions.

At a national level, all religious groups in the UK provide support for organ donation.4 In contrast, a study of religious leaders identified some variations in individual’s views of the acceptability of deceased donation.97 However, little is known about the views and practices of hospital chaplains from different faith groups.

Our research included chaplains as part of the broader category of ICU staff involved in the process of deceased organ donation. The key role that chaplains can play was emergent during our research and they were therefore analysed as a separate group. We were some way from reaching data saturation with these interviews, which limited the comparisons possible between faith leaders. Nevertheless, the data contributes to the very small literature in this area (for published paper from these data see Bradby et al.98) and identifies hospital chaplains as a potentially important resource whose role could be expanded.

Methods

Semistructured interviews were held with 19 chaplains across five hospital trusts as part of the larger study of the study hospitals.

Recruitment

Interviews were sought via the lead chaplain at each of the five hospital trusts. The lead chaplains then contacted other chaplains in person or via e-mail to extend the invitation to be interviewed. Of those who were not interviewed and when reasons were given, these were a lack of time particularly for those in part-time employment; a lack of interest in or knowledge of organ donation; and a perception that the topic was not relevant to their role.

Interviews

Every participant received a study information sheet and signed a consent form. The interviews were semistructured and covered the following topics: the role of the hospital chaplain, involvement in ICU; expected death/funeral practices of the faith; the faith’s views towards deceased organ donation; their involvement in the organ donation process and experience of supporting the next of kin at this time; whether or not they felt equipped to support the next of kin in these circumstances; if they had any links with SNODs or the CLOD; their view of the priority given to organ donation within the trust; any further involvement they would like; and their personal views towards organ donation.

Most of the interviews were conducted in the relevant hospital’s chaplaincy offices and were audio-recorded with permission. One interview was conducted in an intensive care ward room. One chaplain declined to be recorded and written notes were made, and one chaplain was interviewed on the telephone. The interviews ranged in length from 20 minutes to nearly 2 hours.

Findings

Characteristics of the sample

The 19 chaplains interviewed were drawn from a range of faiths, and comprised both men and women and those employed both part and full time, with length of service ranging from 2 months to over 20 years (Table 8). Of the eight Christian chaplains, three were lead or senior chaplain.

TABLE 8

TABLE 8

Hospital chaplains interviewed across five NHS trusts

Chaplaincy work

The idea of generic chaplaincy work in terms of offering spiritual support to patients and their families in terms that are not informed by religion was a feature of Hindu, Muslim and Anglican chaplains’ work. This reflected a situation in which patients often did not want to talk about religion at all but needed support and a ‘general chat’ and to have their ‘spirits lifted’. As a Muslim chaplain (respondent 4) explained:

We’re not actually there to quote Islam on to them. 50% of the patients I see, they don’t talk about religion . . . We’re more there for comforting. We’re not there for bringing any religion for them.

Chaplains from minority faiths frequently reflected on how their own work did not necessarily follow the patterns established by Christian chaplains. For example, whereas Anglican, Catholic and Jewish chaplains may be attached to a particular church or synagogue, imams do not belong to a specific mosque although they may attend prayers at a particular mosque. However, it is the teacher they follow which is of more significance in defining their religious practice. An imam also does not have a specific pastoral responsibility to visit Muslims who pray at the same mosque and Muslim patients, therefore, rarely asked for a local imam to attend a patient’s bedside, nor did they necessarily request a chaplain.

As the idea of chaplaincy as a source of spiritual support in hospital is novel for Muslims, Hindus and Buddhists, chaplains from these faiths explained that ideas are still developing as to how chaplains can best serve patients from their own religious background.

Chaplains and end-of-life care

Chaplains from all religious groups represented in this study saw themselves as making contributions to end-of-life care. This partly consisted of providing support for the family and kin by being able ‘to have a different kind of conversation’ around death, to listen and to comfort. They also acted as the intermediary between the family and hospital staff in terms of resolving clashes between patients and medical staff, accompanying patients to difficult meetings with clinicians, and enabling patients to have difficult conversations by offering explanations in lay terms and/or in an appropriate minority language. This was described as providing ‘a moral voice’ to pose questions in the patient’s interests. As a Roman Catholic chaplain (respondent 15) explained:

I sometimes raise questions that families have raised to me. So in that circumstance, I’m almost a little bit of a voice, like for the families, for the parents. You know, sometimes also, you know a bit of a moral voice, you know to raise a question mark when I think it needs to be raised.

Chaplains reported that clinical staff were sometimes grateful for their presence when discussing the withdrawal of treatment with a family and noted instances of supportive co-operation with clinical colleagues at such times. As an Anglican lead chaplain (respondent 17) explained:

We’re here obviously with a religious hat on. We’re also working within the NHS, working within the institution. So we’re working in a multidisciplinary context. We have to support our colleagues.

Although communication during end-of-life care was important across the different religions represented by chaplains, the specifics of patients’ expectations around the time of death brought out key differences. For three Catholic chaplains and one Pentecostalist chaplain, a key part of their role was to offer the sacrament and anoint a patient with oil prior to an operation. This could be done only by an ordained priest and was described as taking significant time. Prayers said for the dying and the dead in Islamic, Jewish, Sikh and Hindu traditions can be recited by any believer, with no particular call for a learned or scholarly person. Thus, although Muslim and Jewish chaplains would not be called to a dying patient with the urgency that applies for Pentecostalist and Catholic patients, they nonetheless saw discussions with patients and their families about end-of-life care as part of their remit.

Organ donation: perceptions and practices

Chaplains, with a couple of exceptions were, in principle, supportive of efforts to increase awareness of the issues around deceased organ donation within their own hospital. Support for this was typically couched in terms of donation being ethically sound and death not being hastened by the process. However, only three chaplains interviewed knew the SNOD in their hospital, and these three were all members of the ODC, all were Christian, all ordained and all senior (senior Catholic chaplain, lead Anglican chaplain, a Canon). In contrast, the other chaplains were not aware that a SNOD’s role existed in their hospital and had very limited knowledge regarding the process and practices of organ donation. This limited knowledge is doubtless explained in some measure by the very limited active engagement that CLODs and SNODs had with minority chaplains because of their clinical focus.

In contrast to a general acceptance of the principle of organ donation, a chaplain who was also a Catholic priest (respondent 19) reported that he would advise patients against deceased organ donation. He reasoned that one could never be sure that the act of removing an organ had not hastened the donor’s death. He felt that a Catholic could ‘legitimately accept an organ because, at the time when it’s being given to them, it’s already there’, although there was no religious duty to accept a donated organ.

A Muslim chaplain (respondent 4) said that he felt deceased donation was unacceptable both in religious terms and to him personally. This chaplain had not been involved in discussions about organ donation with patients and, like other chaplains, he emphasised that if asked to advise he would describe what he saw as the relevant religious rulings and leave the decision-making to the family. The other Muslim chaplains all expressed doubts about deceased organ donation in more equivocal terms, weighing up the pros and cons and unable to adopt a definitive position for or against.

In considering whether or not organ donation could ever be acceptable, Catholic and Muslim chaplains discussed whether or not the religious exhortation against the mutilation of bodies could be outweighed by the greater purpose of saving a person’s life. While a Catholic chaplain said that seeing people dying while waiting for organs to become available had persuaded him to support organ donation, like other pro-donation chaplains, he was very specific about the conditions that made donation acceptable. For Muslim chaplains, the Islamic principle of respecting and preserving human life, while important, could not tip their views towards outright and unqualified support for deceased organ transplantation because of the principles of modesty and respect for the dying body.

Development of hospital chaplains’ role relating to organ donation

Clinical staff sometimes called on chaplains to speak with a family about allowing the withdrawal of treatment; this led to some concern about being too closely associated with clinicians in the context of deceased organ donation as chaplains did not wish to be seen as overtly promoting organ donation. An Anglican chaplain, who was himself registered as an organ donor, said he did not want to be seen as yet another team member who was setting out to persuade families in favour of donation and cited a family, in shock about their daughter’s imminent death, who had felt that the donation team were ‘preying’ on a dying patient, impatient to harvest her organs.

By contrast, an Anglican (respondent 17) and a Muslim chaplain (respondent 13) voiced the suspicion that Muslim families were not approached regarding organ donation as their refusal was presumed. A Jewish chaplain reported that two Jewish parents, who he thought probably would have agreed to donate their son’s organs, had not been approached; hence, a possible donation was missed. This suggests that misplaced cultural sensitivity or fear of refusal is excluding Jewish and Muslim families from discussions about organ donation at the end of life.

While two pro-donation lead chaplains saw their profession as well placed to initiate discussions about organ donation (respondents 1 and 17), a Muslim part-time chaplain (respondent 4) pointed out that he had limited time and resources for his existing workload, without taking on the complexities of a conversation about organ donation.

Despite misgivings about being too closely associated with organ donation, chaplains broadly supported the removal of organisational or prejudicial barriers to deceased organ donation. The necessity of good information was emphasised by a Muslim chaplain who was herself equivocating over whether or not donation was acceptable under Islam. She pointed out that a single case or even the rumour of a case of organs being removed marginally before death had actually occurred, whether in the UK or abroad, could undermine people’s faith in the practice (respondent 13).

A lack of positive stories about organ donation among Muslims was attributed to the presumed reluctance of Muslims to speak out about receiving cadaver-donated organs, as people with successful transplant did not speak out for fear of being judged Haram (unacceptable). Persuading imams of the Halal (acceptable) nature of organ transplantation was therefore felt to be the most important task in making deceased organ donation more widely acceptable among Muslims. One chaplain (respondent 5) suggested a seminar for British-based imams in which organ donation is discussed in terms of being the ‘last great deed before they meet their Lord’. If the argument could be framed in terms of the virtue of saving a life, ‘save one life and you save all humanity’, then organ donation could be Halal and even be seen as an obligation and not just a virtuous act.

An authoritative ruling on the acceptable nature of deceased donation was, however, not expected, given that there is no single authoritative body representing all British Muslims. As most imams currently working in Britain were brought up overseas, and also studied overseas, they tend to follow the traditions of their place of origin. Muslim chaplains contrasted Saudi Arabia, where scholars have declared some deceased organ donation to be Halal, with South Asian and African traditions, where organ donation is deemed Haram. As ‘home-grown’ British scholars of Islam become more influential the debate might become what one Muslim chaplain termed ‘more open-minded’.

Muslim chaplains made various other suggestions to promote an open conversation about deceased organ donation. These included introducing donor and recipient families to those imams who are currently against deceased organ donation, and offering posthumous anaesthesia during organ retrieval to allay fears of the soul’s prolonged suffering.

Conclusions

  1. Minority faith hospital chaplains, like the patients and families that they look after, demonstrated limited knowledge regarding the process of deceased donation and donor registration and the procedures in their own hospital. Few minority faith chaplains had been involved with patients’ deceased organ donation, an experience that was most common among the Anglican chaplains interviewed. In addition, only senior and ordained Christian chaplains who sat on a hospital ODC knew of the SNODs, suggesting that minority faith chaplains are not being included in organ donation discussions in their own place of work. Chaplains’ attitudes to organ donation were also by no means homogeneous by religion. Even in this small-scale study, the views of the six Muslim and the four Roman Catholic chaplains interviewed varied within and between religious affiliations.
  2. Chaplains described a majority of their conversations with patients as not focused on religion, with chaplains therefore seen as people who are well qualified to be able to reflect on the various interests at stake in discussing end-of-life care.
  3. There is scope for greater involvement of hospital chaplains in relation to end-of-life care and organ donation. This is supported by the NICE guidelines on organ donation, which recommend that the multidisciplinary team should include ‘. . . local faith representative(s) where relevant when approaching families for consent’.99 This requires being inclusive of different faith groups, although the often part-time nature of the hospital appointment of many chaplains from minority religions often limits the scope for engaging in this role.
  4. The position in the community of most ethnic minority chaplains together with their interest in the topic of deceased organ donation suggests there may be capacity to develop conversations about organ donation in community settings where the implications of religious affiliation, cultural practice and identity are lived out. This community-based role has been recognised by the Faith Engagement and Organ Donation Action Plan undertaken in collaboration with NHSBT.100

Study 2: ethics discussion groups

Abstract

Ten EDGs were held (five with doctors and nurses, and five with members of the local ODC) to examine views and practices regarding their responsibility to BAME families and wider engagement in the community. This involved a total of 58 participants. Discussion raised issues of equity, solidarity and reciprocity in the giving and receipt of organs by minority ethnic groups. This included considering the implications of different policies and practices, and ways of influencing attitudes at a hospital level among ethnic minorities and so as to achieve NHSBT’s goal of making donation a key priority within trusts and as being ‘usual as opposed to unusual’.

Aims

To engage in group discussion of donation-related issues with mixed groups of staff to identify their underlying beliefs and attitudes, their shared practices and institutional philosophy, as well as points of conflict and collaboration and differences between local cultures and practices at study sites.

Background

Recommendation 13 of the ODT report4 states that ‘There is an urgent requirement to identify and implement the most effective methods through which organ donation and the “gift of life” can be promoted to the general public, and specifically to the BAME population’. The tenor of this recommendation may be taken to suggest that the work needs to be done at an academic and/or societal level rather than within the hospital. However, it is important to acknowledge two points in relation to this recommendation.

First, recommendation 13 needs to be considered alongside recommendation 4 of the report, which states that ‘All parts of the NHS must embrace organ donation as a usual, not an unusual event. Local policies, constructed around national guidelines, should be put in place. Discussions about donation should be part of all end-of-life care when appropriate. Each Trust should have an identified clinical donation champion and a Trust donation committee to help achieve this’. To exclude BAME patients from this agenda could be seen as discriminatory, particularly given the widespread claim that being able to donate is a valuable opportunity. Furthermore, when a trust serves a sizeable BAME community, making donation ‘usual as opposed to unusual’ and ‘part of core NHS business’ will necessarily entail engaging the BAME community and then ensuring that particular families are given the opportunity to discuss donation as part of their loved one’s end-of-life care. Second, in the period covered by this research NHSBT and UKDEC were working to ensure that information was being produced in conjunction with members of BAME groups. A National BAME Transplant Alliance was launched in 2012 to provide an umbrella for groups committed to encouraging donation. It was, therefore, important to capture the views of experienced practitioners on the conceptual frameworks informing this work. It was also important to establish whether or not they saw the task of promoting donation within BAME groups as work that should continue at the bedside.

Even if the efforts to promote donation had translated into more BAME members signing on to the ODR, they would still fall in to the category of ‘pioneers’ and their families might not have moved as far along the road to accepting donation. This means that even if a member of the BAME community was identified as a potential willing donor, there would be crucially important work to be done in the hospital setting to ensure that this wish was not overridden by a family objection.

Given these two considerations it becomes crucially important to understand how individual trusts characterise their experience of working with BAME donor families and how they view their responsibilities to BAME families when seeking to promote and support donation more widely within their areas. It is also important to understand the barriers they envisage in fulfilling this task, especially given that ODT recommendations have clearly identified ways in which different types of barrier might be removed. So, for example, any lingering ethical concerns could be taken to the UKDEC, and importantly, resource or organisational issues could and should be reported to the trusts via their ODC or to NHSBT via the embedded SNODs and CLODs.

For these reasons, it is important to understand how practitioners and those involved in the governance of donation at a hospital level understand and approach donation within BAME communities.

Methods

Recruitment

We initially contacted the CLOD and the SNOD to request for their assistance in contacting ICU staff and members of the trusts ODCs to participate in the EDGs. The CLOD usually circulated an e-mail on our behalf and when e-mail addresses were provided to the research team the general invitation was followed up with direct emails to consultants and other appropriate staff.

Discussion groups

A total of 10 groups were held, five with nurses and clinicians (or in one case nurses alone). Each group included people in junior and senior grades. The other five groups consisted of members of the ODC. Given the difficulties in arranging the EDGs and because we were only able to hold a doctors and nurses group at one of our original five sites and only an ODC members group at another site, we decided to include a sixth site where we held EDGs for both groups.

The numbers of people attending the groups were not known in advance as availability depended on the demands of the unit. EDGs were held in a meeting room close to the ICU. Groups with ODC staff were mainly held following an ODC meeting to facilitate attendance.

Conducting ethics discussion groups

The attendees were provided at the outset with a participant information sheet, a brief verbal introduction to the research programme and aims of the EDG. They were also asked to sign a consent form and to keep the proceedings confidential.

It is important to note that the EDGs were not focus groups as traditionally understood. Discussions were conducted in an open manner with the facilitator following and exploring themes that emerged, based on the approach of a philosophy seminar in which participants are asked to consider issues such as the value they attach to different concepts and choices. The EDGs also differed from interviews in that the facilitator (BF, a philosopher in our study team with long experience of facilitating similar groups addressing ethical issues in health-care settings) followed up contributions with probes informed by her philosophical orientation. Unusually, participants were asked to be prepared to explain and defend their positions and when appropriate to challenge those of the institution or other professionals in the group. Moreover, BF’s approach and focus was guided by reading transcripts of interviews already undertaken with staff at the study site.

It is a feature of this methodological approach that made the discussion schedule unique to each EDG. The topics for discussion were chosen by reading the interview transcripts of staff at the study site and identifying themes and issues for further exploration. In practice a number of themes were identified as common to all groups but there was also the opportunity to discuss issues of particular local interest and or novel points raised by individual interviewees. In the latter case care was taken not to reveal the source of the issue.

In the EDGs the discussion began with introductions and ground rules and then explored issues that the interview data suggested that participants would feel comfortable to be challenged on. As the discussion progressed more contentious issues were introduced and as more groups were interviewed there was also the possibility of using references to earlier discussions to take groups into new areas. By the end of the process all groups had covered a broadly similar range of issues but the emphasis, time spent and resulting discussion differed dependent on the interests of the group starting out, their prioritisation of issues, their willingness and ability to defend their views and challenge one another, and finally whether or not they felt a need or desire to reach agreement and/or consensus.

Nine groups were facilitated by a health-care ethicist (BF), one by a social scientist (CK) and eight were attended by the programme lead (MM). All discussions were recorded with participants’ permission. Groups lasted for about 90 minutes, with some people coming to join the group or leaving to fit with demands of their job.

Analysis

Both the interview and EDG recordings were fully transcribed and entered into NVivo version 9. For our analysis of the individual interview and EDG transcripts, we used thematic analysis following close readings of the transcripts. The themes reported here emerged from this analysis as the study proceeded and were discussed in our team meetings. All quotes are referred to using an EDG number or interview number.

Findings

The findings draw on material from the 10 EDGs that each comprised between 3 and 15 participants with a total of 59 participants (Table 9) that were carried out between October 2011 and September 2012. Data from the EDGs are supplemented in this section by material from individual interviews conducted between July and December 2010 as described in Chapter 3.

TABLE 9

TABLE 9

Numbers and categories of staff attending EDGs

Shortage and scarcity of organs

Underpinning these discussions was the construction of a ‘shortage’ of organs for transplant because more people will need to be recipients than the number willing (and able) to donate organs. Given the statistics available through NHSBT most staff took this claim to be relatively uncontroversial in pure numerical terms and most were comfortable to quote commonly available statistics without comment or criticism, including a specific and even more serious scarcity of organs available for members of BAME groups. There was a further tendency within the groups to move quickly on from the fact of shortage to discuss the barriers to donation from suitable donors within the same BAME groups.

The biggest group that we face difficulty with in terms of acceptance . . . was obviously amongst Middle Eastern and Asian minorities, but also amongst very strict Jewish faith. And pretty much the, the ‘no’ rate was 100%.

EDG site 1, doctors and nurses

I don’t know of any single Muslim family during the 6 months I was there, so maybe 10 to 15 times, the success rate was zero.

EDG site 1, doctors and nurses

The significance of the lack of BAME donors was connected to the need to find the best HLA tissue match for optimal transplant outcomes:

It’s like bone marrow, like all other things, how many of the people who are actually donating, agreeing to donation and how many of them are the recipients? So you would find that the South East Asian, you know, the tissue typing and stuff is quite specific. There’s better acceptance rates or recipients would have better acceptance rates if you get it from the same Asian matched or whatever group that you are in.

EDG site 3, ODC

However, there was a slight difference of opinion on the extent to which HLA tissue matching is essential to good transplant outcomes. For example, one group discussed how because of improvements to anti-rejection drugs the need to match donors and recipients ‘is probably not medically as true now as it was probably 15 years ago’ (EDG site 5, ODC).

This has been recognised to some extent in recent practice guidance,101 for example, in changes in HLA matching criteria and in acknowledging the impact of more effective immunosuppressant drugs, although these drugs are associated with high risks, including risks of cancer.102

It is interesting to note that participants did not choose to interpret the scarcity of ‘suitable’ organs in anything other than a clinical/scientific sense. A suitable organ was seen as one with a chance of being a good match that is one which would work well when transplanted irrelevant of origin or destination. Donating to ‘one’s own group’ was seen as necessary or preferable only because of the clinically relevant issues raised by matching donors from different ethnic groups. There was no suggestion that prospective recipients were concerned about receiving organs from within their own group and there was no sense in which people were thought to be waiting for an ‘ethnically suitable match’. Unlike the discourse in fields such as sperm and embryo donation or xenotransplantation, there was no discussion of the potential unsuitability of donation across ethnic groups owing to concern for group identity or controversial issues such as ‘contamination’. An exception to this was a case reported in one of the EDGs:

I was speaking to one of my colleagues who is a very devout Muslim and he’s of the opinion that . . . a Muslim can only accept an organ from another Muslim. Whereas he can donate to anyone, but recipient wise, it must be from the right donor.

EDG site 5, ODC

By restricting the concept of ‘suitability’ to the very narrow clinical interpretation of the term, clinicians were at the same time able to acknowledge scarcity and the reasons for it without having to take on the full ethical implications raised by the possibility of there being a perceived ‘free rider problem’.

For as long as low rates of donation within a particular group disadvantage that group alone, there is the potential for the problem to be minimised or hidden, particularly if the groups’ interests are generally harder to highlight and defend. However, if it comes to be the case that the scarcity could be addressed by utilising the good offices of people outside the group, the nature of the issue changes. You could now have a group that does not do what it takes to help themselves, but rather relies on others to do it for them. There then emerges a negative rhetoric familiar within liberal politics (‘scroungers’ vs. ‘taxpayers’), which demands a response.

The assumption of scarcity was, therefore, an important element of the ethical context within which people saw themselves operating. However, the clinical limitations within which they were currently operating provided them with a way of avoiding some of the really difficult issues. The ‘groups’ in question could be understood in terms of differing clinical need (tissue type) as opposed to differing donation practices. Race, ethnicity and other forms of shared identity could be put to one side, as there was little or no evidence of people wanting to receive from only ‘their own’ and only a few notorious cases of people wishing to direct their donations on what could be seen as discriminatory grounds.

The shortage of suitable organs was seen as in large part attributed to a failure of sufficient members of BAME communities to donate compounded by a higher possibility of family veto within BAME communities. It was interesting to note that within the EDGs there was little willingness to ‘own’ the issue of scarcity or be the focus of a solution, with responsibility being given to others ‘outside the hospital’ to raise awareness, build community engagement and encourage donation. SNODs cited lack of time and resource, and, in some cases, expressed regret at what could be done if they only had time to ‘get out of the hospital’. Having said this, there was a clear acknowledgement of the need to approach BAME families and to do so in an appropriate manner to create the best possible chance of donation once the situation arose.

The clinical/scientific interpretation of scarcity is comfortable because it insulates the clinician from confronting the full extent of justice-related issues raised by the free rider problem. By stating that the problem of scarcity arises because people from within certain groups need to receive an organ of a particular tissue type and these organs are in short supply because of low rates of donation within that group, the problem is contained within the group, the solutions in terms of meeting the needs of individual patients reside with the group. If you accept that a possible response to this is to remove the clinical/scientific barrier to transplant by minimising the need for in-group donation, you allow for the possibility of members of the community benefiting from donations outside the community, when their own community has failed to respond.

Approaching black and minority ethnic families

There was a prevalent view that approaching BAME families might be seen as more challenging. Reference was made to the size of some family groups, the problem with identifying a key informant/decision-maker, language barriers and different patterns of bereavement, etc. Having acknowledged the problem of an initial approach, staff went on to consider the terms within which an approach might be framed. For some staff, there was ambivalence about whether families should be approached in ways that are informed by knowledge of different cultural beliefs and practices, or whether they should be approached in the same way as the families of all other patients:

I think you need to be able to know people’s cultures and the different cultures there are around, so then you know how you can approach the organ donation. You know – well actually we were saying that you approach everybody the same, but it would be good to know more about people’s cultures.

EDG site 5, nurses

Several participants echoed this feeling of not having correct or sufficient cultural and/or religious knowledge, as well as a fear of offending families:

The barrier is definitely not knowing their culture . . . Not knowing if you can approach that, if it’s appropriate or not . . . like do I discuss organ donation with these families, do they agree with it, do they believe in it, would it offend their religion or, you know . . .

EDG site 5, nurses

I’ve seen reluctance from senior consultants or even staff that they won’t even broach the subject because they don’t want to offend or . . . they don’t know if people are aware of the importance of it if they’ve come from a different culture, if they’re new to the country and things . . . they won’t necessarily know about it.

EDG site 5, nurses

A similar obstacle was the fear of being perceived as being discriminatory in their treatment of BAME families.

I think there are times when, especially with BAME communities, there’s a fear of how to engage, a fear of getting it wrong, and then, you know, the fear of being branded racist if something went wrong.

EDG site 5, ODC

On the whole, members of staff who participated in our programme of research were careful not to use stereotypes about particular groups or religions, and pointed out the importance of recognising diversity within such categories. To some staff, the extent of diversity even within particular ethnic or religious groups could work against the idea that culturally specific approaches could be formulated, since they could not be sure of being sufficiently appropriate for all families within a particular category. Some participants talked about all people being individuals and commented that it was not helpful to think in terms of ethnic groups having either different or shared group beliefs.

They also recognised that views often differed between generations, with examples mainly given of Asian families:

I do a lot of, we do a lot of open days and we have an awful lot of young Bengali, I would say sort of teenagers, early sort of – between sort of 13 to 17/18. And they’re all interested in organ donation, and some of them have come up to me and said, ‘Yes I’m very keen, but my family . . .’ – that’s the thing, you see, you’ve got a generational thing going on. So the young ones are getting it, they are getting it.

EDG site 5, nurses

Discussions around the approach to families raised a number of ethical issues, some of which staff clearly found difficult to discuss openly. As in previous studies that have adopted the EDG approach, there was a shared sense among many of the health-care professionals that religious- or faith-based objections hold a special force in a health-care setting. This, in turn, meant that the default response might be to accept an individual or family’s view without question or challenge if it is presented in terms of a faith-based objection or demand. This may be even more prevalent when the health-care professional is unfamiliar with the tenets of the belief and/or when the group in question is perceived as particularly vulnerable to misunderstanding and/or prejudicial views.

The wish to neither stereotype nor make assumptions based on ethnicity or group membership was clearly stated, yet it is possible to move beyond a crude and reductionist form of profiling to acknowledging that cultural and religious factors will combine with age, class, education, etc., to provide some clues to a family’s preferred way of doing things. Although no two families of any type are the same, and all should be treated appropriately, it was clear that a wish not to discriminate could potentially translate into a tendency not to pay due regard to morally relevant differences across and within groups. Another interesting finding from the groups was the fact that health-care professionals from BAME groups were not necessarily feeling any better equipped to approach the families in question.

Reciprocity

As previously mentioned, when there appears to be inequity in the provision and consumption of social goods there is the potential for injustice specifically through the notion of free riders (people who benefit without contributing even though they could). At the time of the groups, there was a growing interest in the concept of reciprocity as a potential response to this issue both within the professional literature and in the media as a result of policy decisions in Israel.

Some staff were aware of the use of officially produced materials relying on reciprocity-based scenarios.

I worked at [x hospital] recently and . . . I noticed there was a lot of posters up with different ethnic minorities with a, you know, ‘I’m on the transplant list, if something happened to me I would want, I’m waiting for kidneys, if I were well I would donate mine,’ or something, you know, something. And it was quite clearly, they had three posters, one each from different ethnic group . . . some of them were those posters where you had the person well and then you had the person who is ill . . . it felt very targeted actually, the ethnic minority and the ‘here I am well,’ and the reciprocal, you know, ‘if I’m on the register, I expect that I would give anything I could’.

EDG site 1, doctors and nurses

However, there was a caution expressed in relation to the use of publicity material with several members of staff reporting that they had observed the removal of advertisements targeting BAME patients and families in waiting rooms. This was linked to anecdotal claims that this approach could be counterproductive:

So there’s some evidence to show that currently in these, in the communities, the advertising potentially is counterproductive because people, you know, have an instinctive reaction to it and then reinforce their prejudices.

EDG site 6, ODC

A member of an ODC put the problem in economic terms:

There is a business case for it . . . one of the things I want to do, you know, my involvement with this committee, is to take this message out to communities and just say, ‘Look it’s in your interests that you are involved in this.’ And there was one meeting I went to last year and I actually said to a lot of BAME communities there that, ‘Look if you don’t wise up, people in your community are just going to die, it’s as simple as that’.

EDG site 4, ODC

Some of those in favour of making special efforts to encourage organ donation amongst BAME families commented that families might be more willing to consider donation if they believed someone they knew or at least someone from their own ethnic group could benefit. So, for example, one strategy could be:

educating people to say that if your relative does donate organs, it’s not just going to an English person, it may go to another person who you know or somebody else who has renal failure.

EDG site 5, nurses

People will respond to that, it’s our people who want organs. It’s kind of something about your being mine, you being us, and therefore it will help you and therefore it will help one of our own.

EDG site 5, ODC

These comments suggest that an appeal to solidarity with people from the same ethnic background, or people with the same disease, could be the basis on which to make an approach to BAME families for donations. However, participants acknowledged that it might not always be possible to trump fundamental resistance. One consultant recounted how he had tried this approach with the family of a patient in ‘resus’ (resuscitation) with no success:

I specifically used the, the little hook that, you know, ‘her kidneys will usually match with people who are similar to you.’. . . But obviously that was a refusal as well . . . that was a Muslim family . . . that was the first I’d tried the little, you know, ‘It’s like her, because of her genetics, her organs would go to help someone who’s likely to be of a similar race to you’. . . but it didn’t really – so I don’t know the ideal way to approach really. I suppose, watch this space.

Site 3, consultant interview

Within the EDGs it was seen that the notion of reciprocity allowed for an acknowledgement of the scarcity problem while still containing it in the manner achieved by the clinical criteria-based discussion above. Thus, an appeal can be made to community solidarity that can be respectably and legitimately defended, because the clinical facts mean that your donation is likely to go to someone within your community. This moral convenience is unlikely to persist, however, as it is also in the interests of the community to conduct research and introduce new practices to minimise the impact of tissue types on the success rates of transplanted organs. The question then arises whether or not it is morally defensible to seek to raise organ donation within BAME groups by appealing to solidarity and the wish to benefit one’s own if that would only be possible through the introduction of some form of directed donation. There was no support for this step within the EDGs, but there was some sympathy for the wider case for societal rather than group reciprocity, such that if you do not give you should not receive, with the acknowledgement that this could further disadvantage BAME groups in the absence of an increase in donation rates.

Unwillingness to donate

The EDGs were keen to speculate on why for members of some groups there was a reluctance to give organs despite there being a willingness to receive them. A suggestion was that an asymmetry in giving and receiving organs could be explained in relation to Muslim patients by the belief among this group that the body should not be ‘cut up’, which overrides the consideration of benefiting other people; and on the other hand the belief that transplants are made possible without the need for personal agency because:

Allah has given them an organ to save their lives.

EDG site 5, nurses

One of the consultants, talking about a Muslim family who had declined donation, commented on how far the concept of belonging to a wider society might apply for such families:

I think that there’s not the same sense of community. In the same way as I’ve described a fiduciary relationship, which begins with the patient, moves to the family and goes out into the wider society, I don’t think they have that same sense of wider society. I think their view of society is the family, and I think that’s where the walls stop.’

Site 3, consultant interview

This view chimes with the reported experience of some members of staff who had been involved in the field of live organ donation; anecdotally they reported that while some African-Caribbean families will participate in live organ donation within the family it was rare, if not unknown, for members of this community to come forward to donate beyond the family.

Although these are clearly not robust data on which to build conclusions, it is important to understand the shared understandings and ‘stories’ that circulate within medical teams. An assumption that people from certain communities ‘don’t donate unless to their own’ in the narrowest of senses might well have an impact on the willingness of staff to approach such families. This might also have an impact at a policy level with the problem being seen as structural and insurmountable, as well as culturally and religiously sensitive. Similarly, another consultant thought that in some very:

. . . isolated cultural communities, they would either want organ donation, only to have them if it’s one of their own, or they can’t see the benefit because they’re very locked in communities, they don’t perceive the rest of communities outside their own, to be given a gift. And they very much feel that, you know, they’re the ones who need everything. And they’ve not prepared to move beyond that.

Site 5, consultant interview

Staff felt that a further reason for questioning targeted approaches was that this strategy could be perceived as being associated with directed donation (i.e. donation solely for the benefit of specific groups or identified individuals), which is prohibited by UK regulations. These regulations are specifically designed to ensure fairness in the allocation of organs and to ensure that morally irrelevant factors such as race or even the football team one supports do not become factors in limiting the scope of a person’s donation.

Some staff warned against ‘tiptoeing in the direction of selected donation’ and commented that it was important not to move away from the idea of pooled donation. In this view, donations should be seen in terms of contributing to the greater society, not just for the benefit of a particular group. In turn, there was a feeling among some practitioners that even the suggestion of direction to a community member by dint of tissue matching should be avoided.

Taking but not giving organs

Staff did not avoid the conclusion that the lack of available organs was due, in significant part, to low donation rates within BAME groups and they were also prepared to invite members of the communities, including those on waiting lists for transplant, to reflect on this fact. Having rejected any notion of explicit directed donation within communities and in the absence of a united call for the introduction of a reciprocity model, such as that introduced in Israel,23 there were several calls for better community-based education specifically highlighting the unmet need and utilising the possibility for community-based altruism.

As one consultant described the situation:

I believe a large population of those waiting for a right match are from the ethnic minority. And they are waiting the longest, and that’s because a right match is not found, and that’s because the donation pool is not as big. I think the community should know those figures rather than just saying, ‘We are doing good for mankind . . . And then we could then give the community a real perspective of what the actual scale of the problem is . . . But I feel that that message is not conveyed yet . . . If we came out with a figure to say, ‘Look guys, organ donation is difficult in this community because it has to be appropriately matched and your, your sort of ethnic minority are the longest waiting, and there is X many thousands of patients waiting.’ I think that is when it hits home.

Site 3, consultant interview

Similarly, other participants thought that BAME families should be informed of the situation and invited to think about reciprocal benefits when the possibility of donation arises, for example by saying:

‘If it is one of your relatives on the waiting list, they will wait longer because your community are less likely to donate.’ That sounds like putting the guilt factor in, but it’s the truth.

EDG site 6, ODC

However, two consultants, while generally supportive of increasing understanding at a community level, were not happy with using this approach in the ICU:

It’s not the time when you’re discussing the issue about organ donation with the relatives. You can’t say, ‘Oh did you know so many people are waiting?’ because it’s completely not the right time to do it. But yes, it could be done in outpatients . . . So that those who are on dialysis or in end-stage renal failure, their relatives can learn to say, ‘Actually yes,’ you know, yes I think there is a role for hospitals to play as part in community education.

Site 3, consultant interview

Participants varied in terms of their propensity to judge those who would receive but not donate an organ. In an interview with a consultant the term ‘double standards’ was used to describe a potential recipient being willing to be saved by transplanted organs, but not being willing to agree to donation:

I think that people born and bred in this country probably have thought at some stage, ‘Well, you know, if I needed a heart, I’d have one, if I needed a kidney, I’d have one, I wouldn’t refuse to be a recipient, just on the basis that I’m so and so religion.’ And, you know, if they’ve been through that thought process, then when it comes to saying, ‘Well I’m happy to be an organ donor,’ they would be I aware, I think, of the double standards involved in that.

Site 4, consultant interview

Some staff commented on why reciprocity perspectives might not sit well with BAME families. For example, there was some anecdotal evidence that some people from BAME families have a belief that one day they will be returning ‘home’, so they do not want to donate in the UK. One member of staff commented that this was a view he could relate to:

I think the majority of them don’t want to know, don’t want to get involved because I sense that these people are here temporarily. I think, you know, minority ethnic minorities are here . . . some of them are in transition. So they come here to work for how many years and they have in mind that they will retire and go home. So it’s nothing that they would like to get involved, like ‘Why would I want to register as a donor here, I’m going home.’. . . I see from my own perspective, I would donate anywhere obviously, but in my head one day I’ll move and I won’t be here. So if I just had that in mind I’d go, ‘No’, if I had to tick a box because I’m going home.

EDG site 5, nurses

This could be read as an expression of alienation or a sense of not ‘belonging’, and, therefore, not feeling that there is a commitment from the wider society to people from BAME groups as citizens that they would wish to reciprocate. A consultant made a similar comment:

They need to build from the ground up, the idea that transplantation is a benefit to everyone, because maybe . . . if you’re in any minority group and you can see the establishment as being not there for you really, even if you’re using it, it can be still a cultural perception that it’s more for other people than it is for you.

Site 2, consultant interview

So although many of the staff considered issues that could be conceptualised in terms of solidarity and reciprocity in relation to the value of donating and receiving organs, there was acknowledgement from their experiences and knowledge of their patients and their families that these were not necessarily priority values in the minds and belief systems of those families. They were also prepared to situate a consideration of societal reciprocity (as the ethically defensible model) alongside issues of community identity and membership, bodily integrity, and historical and future affiliations, which came together to provide a complex picture of the ethically appropriate context for donation.

Conclusions

  1. Health-care providers and policy-makers have a strong concern not to appear discriminatory in either attitudes or actions, which is at root a commitment to a fundamental equality. However, the notion of equality is sometimes crudely drawn such that health-care professionals are fearful of being seen to ‘treat people differently’ when that is precisely what the principle of equality sometimes requires. The important issue is that people are treated differently for morally relevant reasons and in the interests of securing a just and equal outcome.
  2. Gift giving and exchange, or reciprocity, have long been regarded as key aspects of the concept of solidarity and are often cited in discussions of blood and organ donation.103 An appeal to the idea of solidarity with the needs of members of one’s own ethnic group may seem straightforward but can easily be problematised.104 For example, it is crucial to recognise the heterogeneity of social groups, the interplay between individual values and collective values held by particular groups, and differences in attitudes according to types of tissue being considered for donation.105 It is particularly important to engage both health-care professionals and community members with these issues, which will become all the more stark as medical expertise develops and renders cross-community donation unproblematic.
  3. Some believed that an appeal to the specific ‘shortage’ of donated organs from BAME groups might prompt more willingness to express a wish to donate by registering on the ODR. Others felt that an understanding of scarcity would encourage families of patients in end-of-life care to consider donation and at least be open to an approach. Both groups advocated a robust ‘educative’ approach, but there was a clear resistance to bringing such discussions to the bedside and a sense of powerlessness in terms of their own capacity to contribute to efforts outside the hospital.
  4. Questions were raised about the best way of putting the scarcity message across, as professionals did not want to be perceived as discriminating among or between patients on the basis of ethnicity. It is, therefore, important to remain committed to community-based and community-informed initiatives, which build on shared values, and acknowledge and respond to the shared concerns of particular groups while also acknowledging that this is part of and not apart from the overriding aim of addressing scarcity UK-wide. As such, it is also integral to the goal of making discussion and consideration of organ donation a component of excellent end-of-life care across the NHS.
  5. Clinicians were clear that the task of moving families towards acceptance of donation in the absence of a clear expression of wishes was significant, and more often than not was unachievable. Yet, ethically, this must been seen to apply to all patients irrespective of race, ethnicity or religion with the ‘likely possibility’ (sic) of donation referring to only the manner of death and other clinical factors. To accept upfront the unlikelihood of donation on grounds of ethnicity or religion would be to accept the status quo in relation to hard-to-reach groups and would perpetuate the scarcity of organs within those groups.
  6. Feedback from participants underlined the value placed on being given the opportunity to discuss sensitive issues in a safe and constructive setting, with the general view that staff working in ethically challenging areas should be given a regular opportunity to discuss and reflect on practice in a confidential and non-judgemental setting.

Relationship with overall programme

The reporting of findings from the EDGs may not immediately reflect the distinctiveness of the approach with some of the findings looking similar to those achievable through a less searching process. However, the important difference with the EDGs is that they reveal and then explore important commonalities and differences in the way staff perceive and respond to an issue. As a result people can leave the group feeling a number of different ways. They may be more confident in their positions because they have defended them successfully. They will thereby know that their ideas, beliefs and or actions have stood up to scrutiny, and they may even have persuaded some colleagues to think differently. In other cases people will know that they have been effectively challenged, that their views do not sit happily with the prevailing culture and/or their practices may be out of step with what others think is required to deal with a problem. On some occasions a whole group might be challenged to rethink what has become familiar and comfortable to them.

In terms of approaching BAME families, participants were very honest and open about the barriers and their reluctance and/or inability to address them, with the EDGs complementing the individual interviews by drawing out the ethical and moral dimensions surrounding their relationships with BAME patients and families.

Consideration of the welfare of BAME members on the transplant list made it clear that such families needed to be approached, although it was felt that families from minority ethnic groups would be particularly unprepared for the issue of donation arising and that staff might be particularly ill-equipped to make the first approach to raise the possibility. The specific features of the case determined by the ethnicity of the family and potential donor were those of unpreparedness, lacked of shared cultural knowledge and understanding, and a consequent fear of being perceived insensitive and/or discriminatory.

Study 3: interviews with bereaved families

Abstract

This is the first UK study to examine the experiences of bereaved families from minority ethnic groups in relation to deceased donation. However, as a result of restrictions on identifying families who did not consent to organ donation, the study was limited to 13 families who did consent to organ donation. These families regarded communication with ICU staff to have been of a high standard and appreciated the clear, honest and accurate information with frequent updates and the opportunity to ask questions. They also appreciated the lack of pressure to make a donation decision but would have liked further follow-up information regarding the progress of the recipient.

Aims

To elicit bereaved families’ experience of communication and support in ICUs, including their perceptions of the discussion regarding organ donation and the influences on their decision-making.

Background

A fundamental requirement in achieving higher levels of organ donation is to ensure that families feel well supported and satisfied that everything possible was done for their relative and that they felt that the timing and process of the consent discussion were appropriate. Considerable research has been undertaken in the USA to examine the characteristics of donor and non-donor families and reasons for non-donation based on a structured telephone interview106 and chart reviews,107,108 with these studies including both consenting and declining families. Important influences on consent to donation were identified as including prior knowledge of the patients’ views, having more contact with requesting staff, viewing the requestor as sensitive to their needs and experiencing an optimal request pattern, which corresponds with the findings of qualitative interview studies with families in the UK.109111

Black families in the USA, as in the UK, are less likely to consent to donation. A study by Siminoff et al.,112 based on a chart review at nine trauma hospitals in the USA, indicated that non-consent was partly linked with families’ experiences of care, with black families less likely to have spoken with an organ procurement representative, being given fewer opportunities to consider the decision with a health-care provider, and having less knowledge of their family members wishes, while they also expressed less favourable attitudes to donation and the health-care system. These findings regarding knowledge and attitudes correspond with our prior review of influences on registration as a donor among minority ethnic groups.27 However, to date there has been no direct information on the experiences of bereaved families from minority ethnic groups in the UK in terms of interactions with ICU staff, or of reasons for their non-consent.

Methods

Study sites

The initial application implied that only bereaved families at five NHS trusts in the London region who met the inclusion criteria would be invited to take part in the study. However, in 2012, only 56 of the 1212 donors in the UK came from black, Asian or other minority ethnic groups and thus constituted a very small group. Owing to a small sample and an expected low participation rate, recruitment was subsequently extended to include the top 20 English hospital trusts in terms of numbers of approaches to BAME families for organ donation and we also approached the five remaining London trusts (of which all but two were able to participate). This involved 23 additional sites, giving 28 sites in total. This required that each of these trusts became a patient identification centre (PIC), which permits clinicians or clinical units to identify and refer potential participants to external research teams without requiring a full governance review.

Subsequently, it was clear that 28 sites were unlikely to provide sufficient participants and NHSBT provided data that identified a further 18 trusts as having one or more consenting kin from an ethnic minority group; of these, 12 trusts participated and PIC applications were completed. A total of 40 trusts were therefore involved.

Identifying potential participants

The most comprehensive way to identify and contact potential participants was via NHSBT, which retains records of all organ donors and next of kin contact details, unless no further communication was requested.

The intention was to initially employ a retrospective approach and invite the next of kin or family member who had or had not consented to organ donation to take part in an interview, if they fulfilled the following inclusion criteria:

  • adult donor (aged ≥ 18 years)
  • died on ICU [or accident and emergency (A&E)]
  • recorded as being from a minority ethnic group or mixed background or family
  • next of kin did or did not consent to deceased organ donation.

The expected number of participants at the time of submitting the grant was 20–24, ideally split between consenting and non-consenting families.

It was proposed that both consenting and non-consenting families would be retrospectively recruited via NHSBT. However, NHSBT’s governance requirements mean that it does not centrally retain the details of families who were approached but declined organ donation and asking hospitals to search their records was not regarded as feasible owing to the length of time this would take and the finite length of the programme. Considerable contact and negotiation occurred with NHSBT to try to overcome this problem; however, this did not prove feasible. Instead, an alternative recruitment strategy was suggested that involved the prospective recruitment of non-consenting families. The two recruitment strategies are described below.

Families who have consented to organ donation (retrospective)

The leader of the London SNODs centrally identified families at the selected hospitals who had consented to organ donation within the last calendar year and who were not less than 3 months post bereavement. SNODs then sent families fulfilling the study inclusion criteria a study recruitment pack provided by the DonaTE team. This included a cover letter from the SNOD, a letter from the study team and a patient information sheet that outlined the study. No less than 5 days after the recruitment packs were sent out, the SNOD telephoned potential participants to ask if they had any queries about the research and whether or not they would be willing to take part in an interview and for their contact details to be passed on to the DonaTE team, who would then contact them to arrange an interview at a mutually convenient time.

Families who did not consent to organ donation (prospective)

Families who were approached to give consent to donation (prospective) were also informed by the SNOD about the bereaved family study and asked whether or not they would be prepared to receive an information pack in 6 weeks’ time. The SNOD also emphasised that receiving a pack did not oblige them to take part in the study. When this was agreed a pack was posted out 6 weeks post bereavement. One week later the SNOD telephoned the next of kin to ask if they would be willing to take part in the study and agree to the SNOD passing their contact details to the DonaTE programme researchers.

The retrospective and prospective recruitment began in September 2011 and concluded in September 2012. Overall, 74 next of kin were invited to take part, of whom 23 (14 consenting and nine non-consenting) agreed to receive the information pack. Altogether 13 agreed (17.5%) to be interviewed, and these were all from consenting families.

Recruitment delays

Recruitment for this study was very time-consuming with considerable researcher time involved. This partly reflected the substantially expanded number of study sites (see Methods, Study sites), together with the need to include a prospective component, which required a substantial amendment to be submitted to the Research Ethics Committee. Recruitment began in September 2011, with the final recruitment packs sent out in September 2012.

Interviews

Additional training was undertaken by the researchers to prepare them to interview the bereaved, a group with whom neither had previously conducted research. They attended a training course, ‘It’s hard to talk about it: taking the risk of opening a can of worms’, at Sobell House, Oxford. This focused on difficult conversations about the end of life and death, primarily aimed to prepare those who work in hospices.

All participants preferred to be interviewed at home. The topic guide was structured chronologically to guide the participants through their experience (see Appendix 8). It covered:

  • background information about the donor and events surrounding their hospital admission
  • impressions of the hospital, diagnosis and communication
  • potential treatment withdrawal/breaking bad news
  • approach for consent for organ donation including how this was explained, discussions with family and decision-making
  • DBD- and DCD-specific questions
  • end-of-life practices
  • consent paperwork
  • reflections on the donation decision and taking part in the research.

All participants received a participant information sheet and signed a consent form before the start of the interview. The interviews were all conducted at home as preferred by participants. They were audio-recorded (with permission) and designed to last 60–90 minutes.

It was made clear to the participants that they could have a break during the interview or could stop the interview at any time if they found this too distressing. The researchers took information from local bereavement counselling services and ensured that the participant was all right before they left.

After each interview the participant was sent a thank you letter together with a brief post-interview feedback questionnaire that was returned to the chief investigator. These feedback responses were extremely positive, with the participants regarding the researcher as most understanding and feeling very comfortable talking with them. They also reported that they were able to cope with the length of the interview and, although recounting a particularly distressing time, they generally found it helpful to have talked about their experiences.

Findings

Characteristics of participants

There were a total of 17 participants, with three interviews involving more than one person. Altogether four participants were a spouse of the deceased, seven a parent (mainly mother), three a sibling and three a child of the deceased. Participants were predominantly of Indian origin and mainly Hindu and Christian faith (Table 10).

TABLE 10

TABLE 10

Characteristics of bereaved family study participants and ethnicity of donors

Initial communication

The events leading to their relative’s hospital admission were unexpected and the result of, for example, heart attacks, aneurysms or accidents. The initial contact and communication from the staff varied. Those whose relatives were admitted to A&E and remained there reported waiting a considerable time before being informed about their relative’s condition and were not happy with this situation:

The doctor who was in charge, you know . . . I kept asking because I wasn’t sure what was happening. And didn’t say anything until about 3 hours, that that’s what’s happened. But they had told me that he’s not well.

Respondent 2: wife, Indian, Jain

Participants were aware that an admission to intensive care implied that the prognosis was unlikely to be good, but their initial contact with and impressions of the hospital were generally positive and often supported by existing knowledge of the hospital’s reputation:

I knew that for head injuries, he was in very good hands at [name of hospital]. So from the medical point of view, I was, there wasn’t a better [place] that he could be. So we knew that he was at the right hospital with the right teams presumably looking after him on that evening.

Respondent 1: brother, Indian, Hindu

Relatively soon after admission to an ICU the participants reported meeting with an ICU consultant who updated them on their relative’s condition and they appreciated the honest communication that they received:

I don’t know, he was a surgeon, he was still in his scrubs, he was quite matter of fact. Honest, I mean that’s what you want, I mean you don’t want to be given false hope, do you really, you know.

Respondent 10: sister, Indian, Hindu

Subsequent communication from the ICU staff appeared to demonstrate good practice that was characterised by talking to the family in a private space (away from the communal waiting room), explaining the patient’s condition clearly, assuring them they were doing all they could and ensuring the relatives were comfortable to ask any questions they may have:

At the [hospital] they was so, it just seems that no stone was left unturned. Everything was done to clearly let us know and to assure us there was nothing.

Respondent 3: mother, white British, Catholic

Being near to the patient and being able to spend time at their bedside was important for all of the participants and other family members and was usually facilitated by the ICU staff. However, when the family was updated about the patient’s condition this often took place in a small family room that often could not accommodate everyone the family wished to be present, although the efforts of staff to identify and allocate another larger room were appreciated.

Breaking bad news

During the patient’s time on ICU the participants reported conversations with the consultant to receive updates about their relative’s condition and prognosis. The participants appreciated receiving accurate and honest information but reported disbelief about the seriousness of the patient’s condition particularly if their physical appearance looked ‘normal’.

The communication of the ICU staff communication with the families was reported to be clear and usually delivered in a way that the family understood, with a space provided for the family to ask additional questions that the staff were happy to answer. Respondents also commented favourably on the efforts to facilitate end-of-life care in a way that was sympathetic and empathetic to the family and their situation:

So it’s like everybody done everything from their heart. So there is no complaints about it. There’s no mistakes or something. So whatever they’re doing is very good.

Respondent 12: son, Sri Lankan, Hindu

Diagnosis of death

While participants’ specific recollection of what they were told about brain stem tests varied, most reported understanding the concept of brain stem death and knowing that a ventilator was ‘breathing’ for the patient. The same level of explanation may not have been circulated to wider family and friends, who perceived the patient was alive:

Well some of our family relations didn’t believe she’s dead because they said, ‘There’s breath,’ so I said, ‘Yes it is artificial breath because they don’t want to upset you straightaway, that’s why they kept her breathing.’ But some of the people say, ‘No she’s not dead, there is still breath.’ I said, ‘Yes I know there’s a breath . . . because it’s artificial breath.’

Respondent 12: husband, Sri Lankan, Hindu

One inconsistency is whether or not families are invited to observe the brain stem test, which was often a way of assuring themselves that their relative was dead.

From the sample, three patients were DCD donors and all ‘died in time’ for donation to proceed. The participants reported receiving a clear explanation about how death would occur including the body’s physical reactions and the need to move swiftly to theatre after the patient had been declared dead for organ retrieval to proceed.

Approach for consent

After families had accepted the death of their relative, at an appropriate juncture, organ donation was raised, usually with the next of kin. The approach was often led by the SNOD, although for at least two families in this sample, they were initially asked about organ donation by a consultant. Regardless of who made the approach the families felt this was done sensitively. Differences occurred in how organ donation was seen to be presented to the families who reported, for example, organ donation presented as a way for their relative to live on or to save or improve the lives of others. Three families distinctly remembered being told that if they donated their relative’s organs these were likely to go to someone of the same ethnic background. This was not reported as influencing their donation decisions. However, one family felt they might have been slightly misled when they learnt that the recipient of a donated organ had gone to someone from a different ethnicity.

One family reported feeling under pressure by the ICU staff to consent to donation but other families described and appreciated being given time to think about organ donation and discuss this with their family, particularly when their initial reaction was one of uncertainty. Although a few families initial reaction to organ donation was ‘no’, after being given time to think about organ donation and usually having discussed this with other family members, they decided to consent. The families welcomed the lack of pressure to make a decision, so that they could make a decision that was right for them and their relative.

No there was no pressure. We could step back at any stage. However, she explained that, ‘Once we go into the theatre, that’s it, it’s their right after that stage, but up until that door opens and we wheel her inside there, you can step down at any stage.’ And that’s what I liked about the whole process with them, you know, just the respect, the way they spoke about her, the way things were done.

Respondent 8: mother, black Caribbean, Christian

Making the donation decision

Two patients were on the ODR, with their wishes therefore known and respected. However, other patients had not discussed organ donation or their wishes with their families, with the decision, therefore, left with the next of kin. In this situation there was little discord reported between family members when organ donation was suggested and if initially discord occurred, donation was eventually supported with the final decision usually taken by just one person, often the (legal) next of kin. However, this person sought the views of other family and friends who were broadly in favour and made it clear that they would support the final choice the next of kin made.

In considering organ donation and coming to a decision, the participants thought about what the patient would have done and often involved reference to what the donor was like as a person:

And then what I had to do was put myself in my daughter’s position, think of my child. And I based it upon what would [daughter’s name] have done? And knowing [daughter’s name] she would give away everything, [daughter’s name] would give away everything. And that’s what I based it on.

Respondent 8: mother, black Caribbean, Christian

Perhaps unexpectedly, several families raised organ donation themselves with the ICU staff. This arose as either they knew of someone needing or having received a transplant or they had a wider awareness of the need for transplants via the media. For example, one family described seeing an organ donation leaflet in the family waiting room. Underlying their support for organ donation was a desire to help others live and a belief that it is what their relative would have wanted or supported, even if they did not know their wishes:

I think it’s just when you hear a lot of people needs kidney and everything, you know, you hear so many things on the telly. I usually watch the programmes all the time, the hospital programmes and things like that, and I see how many people, you know, the people who need all these organs, and how difficult it is in here. So I would have thought that that would have been something that I’ve done for other people’s life.

Respondent 2: wife, Indian, Hindu

After consenting to organ donation, family and friends usually spent time with the patient at the bedside to say their goodbyes. This was often facilitated by the SNOD in negotiation with the ICU and supported by the bedside nurse. In addition, some families reported wanting to carry out particular faith or cultural practices, for example, praying at the bedside, which was relatively easy to facilitate for other families, compromises were found so they could fulfil practices without compromising the unit or the care of other patients. For example, for a Malaysian Buddhist family the burning of a talisman had to take place in a designated area of the hospitals’ car park rather than at the bedside. If a compromise was required, the participants were happy to go along with this.

As well as meeting practical, emotional, faith and cultural needs, the families were offered a memento of their relative. These ‘mementos’ vary by hospital and are arranged by the SNOD. The most common mementos are handprints or a lock of hair; with less common items including photographs of tattoos, footprints and for a paediatric donor casts of their feet.

Post donation

It is usual for the SNOD to telephone the next of kin or a nominated contact to tell them that the organ retrieval is complete and later to send a letter outlining which organs were suitable for transplants with a brief descriptor about the recipient. The families were pleased to learn that their relatives’ organs had saved or improved the lives of others, albeit strangers who they would never meet.

On the first anniversary of the patient’s donation, the SNOD usually sends an anniversary card to the next of kin, again thanking them and updating them on the progress of recipient(s). However, in practice, not all the participants had received further contact from the SNOD, and would have generally have appreciated an update just to know that the recipients of their donated organs were healthy and getting on with their lives.

Conclusions

Strengths and limitations

This is the first UK study to ascertain the experiences of minority ethnic groups in relation to deceased donation. With just 13 participants who consented to donation it is not possible to argue that saturation was reached in the analysis of this group, although there are consistencies across the data reflecting good communication practices and experiences despite the tragic circumstances. The most significant limitation was being unable to retrospectively contact non-consenting next of kin. This group forms the majority of the minority ethnic groups who have been approached for consent for organ donation, and without access to this group we were unable to identify the reasons for not consenting to organ donation. It is not known if commonly cited reasons for not consenting such as faith or cultural practices hold true or if other reasons influence this decision. Without this knowledge barriers cannot be addressed and these may continue to prohibit organ donation.

Families’ positive views of experiences

Among the group of consenting families the quality of the communication between the ICU staff and the families was reported to be of a high standard. Families appreciated clear, honest and accurate information about their relative’s condition after admission and subsequent updates, often in a private space. They felt comfortable, were able to ask questions at any point and recognised the time consultants and nursing staff spent with them. Consultants broke bad news and explained how the patient would die or be declared dead with sensitivity and clarity often after earlier conversations about a poor prognosis, which had prepared the family for bad news.

Families’ perceptions of gaps in services

Families would have liked the offer of observing brain stem death tests when these were carried out, but this did not always occur. There was room for improving communication with families who came via or remained in A&E when it appeared to take some time before the family were spoken to by clinicians. This is likely to be a significant future issue with A&E departments, regarded as a further source of potential organ donors. Families often heard nothing about the organ recipients without asking and would like to be automatically updated on how they were doing unless they had opted out of further contact.

Implications of the hospital studies

Implications for policy and practice

  1. Bedside nurses were positive about the provision of training in cross-cultural communication.
  2. Clinicians’ often limited SNODs’ involvement and participation in ‘collaborative’ requesting, with this partly arising from uncertainties surrounding withdrawal of treatment in controlled circulatory death as well as perceptions of their own role and responsibilities.
  3. Many hospital chaplains expressed interest in receiving training to support families in organ donation decisions. They potentially form an important resource, although this role would be limited by other demands on their time.
  4. The positive influence of interpersonal support on families’ donation decisions is in line with NHSBT’s recommendation to pilot a peer support scheme in ICUs with a large ethnic minority population.15

Implications for research

  1. Further research is required to achieve a better understanding of the reasons for non-consent to donation among ethnic minority families. This might be initially based on secondary analysis of detailed information on reasons for refusal now recorded by SNODs. More in-depth primary research could also be undertaken with permission given by NHSBT to approach bereaved families on a retrospective basis.
  2. It is important that research-based evaluation examining both process and outcomes forms part of the piloting of new schemes, such as proposals for peer support, so as to expand the limited UK evidence base and guide future implementation.
Copyright © Queen’s Printer and Controller of HMSO 2016. This work was produced by Morgan et al. under the terms of a commissioning contract issued by the Secretary of State for Health. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.

Included under terms of UK Non-commercial Government License.

Bookshelf ID: NBK355268

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