Resuscitation decisions

Do not attempt cardiopulmonary resuscitation (DNACPR) is a recording of an advance medical decision to not attempt cardiopulmonary resuscitation when someone’s heart stops. Without a recorded decision, however, the default policy for health and care professionals is to initiate resuscitation, which may be distressing to all and may not be aligned with the preferences of the patient. The heart stopping is the last part of the dying process and is a certainty for all dying patients. In this situation, resuscitation will not work. For a few patients, who are not thought to be dying imminently, their heart may stop in a sudden and unexpected context.

Discussions of DNACPR are complex. From the perspective of the health professional, resuscitation is a key aspect of EOLCP discussions because the default position is to resuscitate and because it will not work as a treatment when someone has died from their illness, and may increase and prolong suffering for people with advanced illness. In England and Wales, the legal basis for DNACPR decisions are provided by the Human Rights Act 1998⁴⁰ and the Mental Capacity Act 2005² and interpreted in case law. There are nationally agreed professional guidelines that interpret this law and provide standards of practice for professionals when a decision about offering resuscitation is, first, a clinical decision about whether or not it can be offered.^7,28

In addition, a documented DNACPR decision may help a patient who is dying to avoid an emergency admission to hospital, enabling them to spend the last hours of their life in their preferred place of care.⁷ These facts and the context of the need for such discussions are seldom known or understood by the public, or by patients, and little has been explored about the perspective of the public.⁷

Our previous work explored, with HCPs, the nuances of discussing resuscitation and, more specifically, DNACPR discussions with ethnically diverse patients and relatives in the UK.⁴¹ This work highlighted that HCPs recognised that these conversations were sensitive, and occurred at a challenging time for the patient and their families. They were also aware that both patients and their relatives had beliefs, expectations and emotions that influenced resuscitation discussions. These expectations related to both resuscitation specifically and to death and dying more broadly. Participants also understood that their own beliefs and expectations, alongside their understanding of laws and policies regarding DNACPR orders and the clinical circumstances of the patient, influenced these conversations. However, in general, there was a lack of understanding by HCPs of how forms of intersectionality, such as class, ethnicity, sexual orientation, age, religion, disability, gender, education and life experiences, are interwoven and affect patients’ and their families’ perceptions of EOLCP discussions and related resuscitation decisions.⁴²

Like other studies, our earlier work has found that challenges in communication between HCPs and ethnically diverse patients and their families are key barriers to resuscitation discussions.^24,41,43 Overcoming communication issues was regarded as a key enabler of DNACPR discussions, helping build rapport, particularly when patients and their families appeared to have limited understanding of their prognosis. At a practical level, certain words may not be translatable, and more exploration of the understanding of the procedures of cardiopulmonary resuscitation, the possible harms and the evidence of success rates, was required in such discussions.

Although the themes of language, family and religious beliefs are well documented within discussions of transcultural clinical practice, our findings identified how these cause uncertainty and considerable heart-searching for professionals when patients are so sick that they might die and the discussion of DNACPR might falsely appear to be a discussion about choosing whether to live or to die. Like Kai et al.,⁴³ findings from our previous work⁴¹ show how this uncertainty within a highly emotive context can lead to disempowerment and a search for more ‘knowledge’ to become skilled and empowered.

Health-care professionals in our previous work felt more confident in having DNACPR discussions when they had existing knowledge about patients’ religious, spiritual and cultural values, and their confidence in initiating these conversations was developed through experience. However, our findings highlighted the need and desire of HCPs for further training to develop ‘cultural intelligence’ to navigate the cultural and individual beliefs about death and to deliver culturally sensitive EOLC, including discussing deterioration and decisions about resuscitation.^24,41

Communication and knowing the patient and family

The principles of good palliative care (patient centred, holistic, founded on listening to the patient’s needs and guided by their wishes) can be undermined when communication is difficult.⁴² Clinicians are encouraged to actively seek to explore a patient’s cultural preferences and choices on a case-by-case basis to understand how best to approach different contexts of EOLC, such as family choices in decision-making and sharing information about their diagnosis and prognosis.⁴⁴ Knowing the patient and their family is an essential ingredient to good EOLC, yet attaining this can be challenging, especially for HCPs working with patients from culturally and linguistically diverse communities. HCPs have, for example, reported that, when trying to manage pain, they may encounter confusing messages from patients who believe in the importance of stoicism when experiencing physical pain.^45–47 Such patients downplay the extent of their pain, making it more difficult for clinicians to understand the patient experience and effectively manage pain.⁴⁸ On the other hand, patients who cannot articulate their needs to clinicians about their pain may find the experience distressing and isolating, may feel disempowered and may feel discriminated against because of their inability to competently communicate in English.^48–50 In addition, ethnically diverse patients may not want to initiate discussions even when they experience intolerable pain in late stages of life, but may later communicate a desire to engage in EOLCP discussions with HCPs once they have accomplished all their wishes with their family.^50–53

In their small UK-based study, Owens and Randhawa⁵⁴ point out that staff seemed concerned that they frequently did not have the linguistic skills or sufficient understanding of a patient’s cultural background to ‘make them comfortable’.⁵⁴ Doctors in Karim et al.’s⁵⁵ study highlight these issues as being major obstacles and key to the under-referral of ethnic minority patients to palliative care. The majority of the 27 doctors interviewed in this small UK study felt that palliative care services need to be sensitive to religion and culture and that this could not be achieved unless staff from black and Asian communities, fluent in the language spoken by the patient, were present in the workforce.⁵⁵

Effective communication between health-care providers and patients is complex. Patients describe having a positive care experience when knowing their needs were listened to and understood.⁵⁶ Interpreters can assist in mutual understanding between HCPs and patients and their families; however, this is not without challenges. As in other studies, HCPs in our previous work acknowledged their lack of understanding of the training and quality assurance of professional interpreters and the absence of training for HCPs on working effectively and safely with these essential team members.⁴¹ Using professional interpreters becomes difficult when family members are not in support of this, sometimes because of concerns of confidentiality. When interpreting services are not available or not used, this can result in reduced access to services and not receiving information. There are often concerns about the accuracy and quality of information exchanged with patients, particularly those involving a family member as interpreter,^55–58 with HCPs often left questioning if the information iterated to and from the patient has been verbatim.⁴¹

Health literacy and inequalities

Patients’ and their families’ lack of understanding of the concepts used in health care, such as the palliative care approach, can affect care preferences. As an Australian study highlights,⁴⁸ ethnically diverse communities confused a patient returning home as indicative of the onset of the dying process, in contrast to remaining in hospital, thought to indicate hope for recovery regardless of the illness progression. In addition, having no equivalent term for ‘palliative care’ in many languages has caused challenges in understanding and explaining this concept.^48,59 Equally, the concept of EOLCP can be foreign to some ethnically diverse groups, as one Canadian study exploring the perspectives of the South Asian community highlights:⁶⁰ EOLCP was often associated with other end-of-life issues, such as organ donation and estate planning.⁶⁰

Many migrant communities have experience of health-care systems that are limited and require payments. Understanding of the NHS, hospice services and care homes may be limited and has considerable potential for misperceptions.^23,61 For example, both UK and international studies highlight that, among the Chinese community, lack of knowledge of and exposure to palliative services from their ‘home’ country is attributed to struggles in understanding the concept of palliative care services in their ‘host’ country.^49–51 For some, palliative care services never existed in their country of origin (at least by the time they migrated), and this influences their uptake for this kind of service in their new place of residence.⁴⁹ In addition, many are not clear about what palliative care services offer regarding pain control, and misunderstanding and misconceptions of the effects of drugs to manage pain results in fear of developing opioid addiction.⁵¹ It seems that immigrants who are able to speak English have a better understanding of palliative care and palliative care services than others, but, even so, may still be reluctant to use these services, highlighting the role of other factors such as cultural, religious or personal beliefs, which are further explored in the following section.⁴¹

In the UK, navigating the health-care system for patients and families from ethnically diverse communities is associated with level of health illiteracy, characterised by lack of accessible information about illnesses and possible prognoses and available services.^62,63 Evidence, mainly from the USA, documents a disproportionate gap in knowledge about palliative care among minority older adults.

Cultural mores and religious beliefs

Research, predominantly from outside the UK, provides some insights into some of the issues that relate to the nuances of how minoritised culture and religious beliefs may affect discussions, care and outcomes at the end of life. For example, among some African Americans, spiritual and religious beliefs may conflict with the goals of palliative care, and they may mistrust the health-care system because of past injustices in research.^64,65 Cultural mores that may present a barrier to the use of palliative care include an apparent attitude of non-disclosure of terminal illness among some Asian and Hispanic patients in the USA.⁶⁶ Cultural norms can significantly influence the perspectives of some South Asians of EOLCP, with some expressing the belief that planning ahead is not necessary because of close family ties, predefined roles within the family and trust in shared decision-making within the family.⁶⁰

Other challenges among ethnically diverse communities to a palliative care approach and anticipatory discussions about deterioration include cultural ‘taboos’ and fears of harm; believing that death is more likely to happen, or possibly be hastened, if openly acknowledged, verbalised or discussed; and strongly held ways of living whereby only their god knows the timing of death.^60,67–69 In such cultural and religious contexts, there is a strong desire to remain hopeful and, consequently, avoid discussing subjects such as cancer and end of life. People may avoid talking about the prospect of dying as it is viewed as not only demoralising but also inappropriate, upsetting and harmful.^48,60

Although striving to remain hopeful is not exclusive to families from minoritised ethnic communities, there is undeniably a complex interplay between culture, religion and care in the everyday experience of HCPs in the transition from active treatment to a palliative approach when dealing with patients and families from ethnically diverse communities.^48,70 Faith and religion can play a prominent role in many people’s lives and may become even more important when coping with illness and the end of life. However, the practice of faith and religion, linked perhaps to the philosophy and mores discussed previously, has sometimes been found to be in tension and conflict with medical treatment plans when patients ignore their doctor’s advice in the belief that the moment of death is divinely determined, and this negates discussion about the benefits or harms of treatments.⁴⁸

Yet there is also tension within religious philosophy. A report commissioned by the charity Compassion in Dying highlights the hesitancy among Muslims around the extent to which they can or should engage in an EOLCP. A hesitancy that is rooted in notions of divine will or god’s purpose that yields a mindset of ‘what is to happen, will happen’ is in tension with other instructions found in faith that endorse planning ahead, and, in fact, strongly encourage committing to such plans. Recommendations from this report stress that there is considerable support for the notion of EOLCP in theological terms, but little is known about this among health-care services specialising in EOLCP.

The inability to accurately translate terms used and equating the meaning of palliative care with being close to dying prompted some families to request clinicians to consciously refrain from using this term when talking to their ailing loved one in one Australian study⁴⁸ exploring patient and caregiver perspectives across cultures and linguistic groups, and provider perspectives. Some families reported needing to do some kind of homework to aid their understanding of the subject of palliative care; others preferred to avoid discussions regarding terminal prognoses and planning for end of life altogether; and others recalled an explanation by a clinician, but not in a way they could understand.⁴⁸

There is great diversity within ethnically diverse groups, as well as between them. Ethnically diverse patients are indeed diverse, with the existence of ‘micro-cultures’.⁷¹ In a small study (four participants) regarding the views of ethnically diverse patients attending a day-care centre in the UK,⁷¹ the participants involved showed a distinct lack of culturally specific needs. Instead, the authors found that ‘acculturation emerged as a strong theme’, and, moreover, that ‘regardless of a particular participant’s cultural group, their needs can be highly individual’.⁷¹ This highlights both the significance of providing person-centred, holistic care and the need to embrace diversity and complexity and work competently in the context of uncertainty.

Our previous work, alongside a wider body of work, has identified that HCPs feel disempowered by the uncertainty that arises because of sociocultural and religious complexity and that staff training needs to respond to this.^41,72 Some cultural groups predominantly share familial responsibility for decision-making, in tension with the emphasis on autonomy and individual choice within UK policy.^{23,41,72–76} Some groups predominantly prefer non-disclosure of diagnosis and prognosis, and discussing deterioration and planning for preferences related to dying is, potentially, unacceptable. Our work in cancer highlighted that professionals were concerned about offending or expressing culturally insensitive practices.^43,58,77,78 As a consequence of this uncertainty, professional disempowerment and reticence resulted in inequalities and lower-quality care, with poorer outcomes for patients and families. Patient ethnicity can influence the behaviour of HCPs, resulting in disparities in care.^24,58,79

Considering ethnic diversity in policy

In the UK, contemporary policy is directed at trying to increase the proportions of death that occur at home (or usual place of residence), both because this is seen by the majority of patients and the public as their ‘ideal’ environment in which to die and because cost savings are anticipated once a shift occurs from hospital to community care.⁸⁰ There is some evidence that this ‘ideal’ is not met for people from minority ethnic groups, who die at home less often than the ethnic majority in the USA and in Canada.^3,23,81–86 In the UK, it has been found that those of Caribbean origin were less likely to say that caregivers or patients were given sufficient choice about the location of death.⁸⁷ There also appears to be little support for Gypsies and Travellers to die at home (which also appears to be their wish).^23,84 It is, however, difficult to compare this evidence of place of death with the preferences for place of death because evidence of such preferences for ethnically diverse groups is not available.²³

Seymour et al.⁸⁸ suggest that this policy is largely based on ‘ethnocentric assumptions about the preferences of dying people and their informal caregivers for place of care and also for being somewhat blind to the problems (and household costs) with which older people and their informal carers may be confronted in accessing help and support during a final illness’.⁸⁸ In their research comparing findings from two linked studies of white (n = 77) and Chinese (n = 92) older adults living in the UK, in which they sought views about EOLC, they focused on experiences and expectations in relation to the provision of EOLC at home and in hospices. Concerns about dying at home were shared by both groups, and related to the demands on family that may arise from having to manage pain, suffering and the dying body within the domestic space. Among the white elders, these concerns appeared to be based on largely practical considerations, but were expressed by Chinese elders in terms of explanatory cultural beliefs about ‘contamination’ of the domestic home (and, by implication, of the family) by the dying and dead body.⁸⁸

In addition, they found that white elders perceived hospices in idealised terms, which resonate with a ‘revivalist’ discourse of the ‘good death’, and would choose this if home were not possible. In marked comparison, for those Chinese elders who had heard of them, hospices were regarded as repositories of ‘inauspicious’ care in which opportunities for achieving an appropriate or good death were limited.^89–91 They instead expressed preferences for the medicalised environment of the hospital and actively rejected death at home, because of the contamination and inauspiciousness this entailed.

Although having family present during death is perceived as a measure of the good quality of end of life, some patients may not want to die at home to avoid imposing on the family and burdening them with caring responsibilities and with having to witness the deterioration and death of a loved one.^49,57,92 Even when there is an expectation to receive care from family members out of familial bonding and personal sense of duty, this may sometimes be complicated by factors such as cultural beliefs that, if a patient is allowed to die at home, they ruin the chances of selling the house in future.^50,93,94 Evidence also suggests that some ethnically diverse patients and their families may require more support with symptom management, decision-making and communication, as they may interpret palliative care specialists’ support as an effort to stop curative treatment and focus on end of life, and hence continue to underuse hospice services.^81,95,96

Some people prefer to care for their loved ones at home, especially if they doubt the competence of the doctor and their ability to make decisions and judgements that fully consider the best interests of the patient, and also to avoid draining family resources in paying for nursing home charges.^72,97 Other studies have found that certain ethnically diverse groups express a strong ‘preference’ for death at home.^98,99 This preference is often unmet for all patients, but even more so for ethnically diverse patients. Koffman and Higginson’s⁸⁷ survey of the family and friends of deceased first-generation black Caribbean and UK-born white patients with advanced disease found that the greatest single preference for location of death was at home and that twice as many Caribbean as white patients sought this location.

Only one-fifth of all these patients had died in their own home, with 61% dying in hospital, 12% in a hospice and 6% in a residential/nursing home. Although similar proportions of patients in both ethnic groups who wanted to die at home did so, the family members and friends of deceased black Caribbean patients felt that more could have been done to involve both the patient and themselves in decision-making about location of death. This points to a need to improve training in discussing care and treatment choices, including location of death, and a deeper qualitative understanding of the cultural and other factors that may facilitate or prevent home deaths, including the intersectionality of socioeconomic and cultural factors.⁸⁷

In Frearson et al.’s⁹⁹ study exploring preferences for place of care and death among the British Hindu community, participants expressed an overwhelming wish to die at home. One reason for the preference for home was the central role of family members in providing care and sense of filial responsibility ‘with the wish to care being accompanied by a need to be seen to do so’.⁹⁹ This view also influences decision-making by professionals; for instance, the doctors in the study by Karim et al.⁵⁵ believed that black/minority ethnic families prefer to provide palliative care for ill members themselves. Despite having no empirical basis, doctors believed that sending elders to die in an unknown place and in the hands of unknown people ‘would be indicative of failure on the family’s part and a decision worthy of shame from within the particular ethnic community’.⁵⁵ Doctors in this study also believed that the extended family of patients from ethnic minority communities had the ‘resources to cope with this kind of demand’ more adequately than the ‘White community for whom the extended family is close to becoming a thing of the past’.⁵⁵

However, although home death was indicated as the ‘ideal’ in the Frearson et al.⁹⁹ study, it was also recognised by participants as not feasible for all and that care should ‘only be at home if the family was able to cope’. This study went on to consider the practicalities and the true reality of caring for a relative at home.⁹⁹ Similarly, Somerville’s⁵⁷ study exploring Bangladeshi bereaved carers’ experiences highlights the numerous challenges faced by carers, including the demands and stresses of caring, which can leave carers isolated. These practical concerns are similar to those expressed by white elders in Seymour et al.’s⁸⁸ study discussed previously, all of which highlight the shift between the ‘ideal’ place of death and the pragmatic choices that determine the actual place of death.

Embracing diversity in end-of-life care planning

The research considered throughout this chapter has highlighted the complexity of undertaking EOLCP in general and the additional complexity of navigating such discussions with ethnically diverse patients and their families when HCPs have limited understanding of the impact cultural mores and religious beliefs have on thinking ahead, deterioration and dying.^24,43,69 Evidence presented in the sections above can be summarised as follows:

Professionals should be sensitive to individual variations in perspectives and avoid stereotyping patients and their families, for example, by assuming a patient would or would not want to be told bad news, or have particular styles of coping or use of denial.[^100,101] They should seek, as far as possible, to explore each patient and family’s wishes and attitudes to sharing of information and decision-making as a generic principle.

Reproduced from Kai et al.⁵⁸ This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 3.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: https://creativecommons.org/licenses/by/3.0/

Copyright © 2023 Islam et al.

Islam et al.

Kai et al.

This work was produced by Islam et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This is an Open Access publication distributed under the terms of the Creative Commons Attribution CC BY 4.0 licence, which permits unrestricted use, distribution, reproduction and adaption in any medium and for any purpose provided that it is properly attributed. See: https://creativecommons.org/licenses/by/4.0/. For attribution the title, original author(s), the publication source – NIHR Journals Library, and the DOI of the publication must be cited.

Reproduced from Kai et al. This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 3.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: https://creativecommons.org/licenses/by/3.0/

The need for consideration of individual needs, to provide ‘person-centred’ holistic care and to avoid cultural assumptions, coupled with the anxieties about cultural competence among HCPs and the consequences of such anxieties, are of great significance in providing EOLC to patients and families from ethnically diverse communities.

An appreciation of general cultural influences, as well as of the diversity of individual preferences, is essential for sensitive and effective EOLCP and to enable patients and families to understand and appraise the options open to them.^102,103 The importance of such an understanding is articulated in formally derived international consensus recommendations from the European Association for Palliative Care.⁹ Most participants in this consensus recognised (at least within the context of ethnically ‘other’) that a diversity of preferences exist for how decisions are made and who makes them, but understanding was very limited as to how to work with this when the dominant ethic and duty of care is that of patient autonomy.

Models of decision-making and how this is shared between the patient and the clinician and with a wider stakeholder group are beginning to be more widely explored in the literature. Acculturation to Western Christian medical–ethical frameworks appears to be a dominant factor in the development of autonomous decision-making¹⁰⁴ This should, however, be integrated in practice with consideration of a patient’s desire for varying family involvement and their own desired level of self-involvement in decisions, which has been shown to vary within ethnicities, including that of white British.¹⁰⁵ Findings from our previous work suggest that supporting clinicians in how to assess these factors and develop skills in wider ‘stakeholder’ decision-making would be valuable.^41,72,97 In this work, doctors and nurses discussed the interventions that they perceive have improved their confidence, knowledge and skills in these situations. It was clear that training was limited and failed to address the impact of such nuances between and within different communities. This is reiterated in Calanzani et al.’s²³ seminal report in which they appraise the evidence from 45 literature reviews to describe the current state of PEOLC provision for ethnically diverse populations living in the UK and in other English-speaking countries.

Envisaged ‘solutions’ for working in such uncertainty and in such emotionally challenging scenarios are often to increase confidence through the provision and assimilation of more factual ‘knowledge’. However, HCP participants in our previous study (which focused on the experiences of HCPs in one aspect of EOLCP: decision-making about resuscitation with ethnically diverse patients and families) sought to access reflective support, sharing of practices with colleagues and learning through simulated scenarios.⁴¹ In addition, our work using Q methodology (a structured way of eliciting and prioritising preferences) to explore the views of ethnically diverse public participants about resuscitation discussions in advanced, terminal illness indicates both a receptiveness (in terms of both desire and acceptability) to engage in the topic of end of life and the value to participants of receiving such information. The actions participants indicated that they would take as a result of the information and the decisions that they would make were diverse and reflective of the intersectionality of their beliefs, culture, experiences, circumstances and other factors.^41,97

The evidence from our own work and from Calanzani et al.’s²³ report highlighted the need for further research with ethnically diverse patients and families, exploring how these factors influence end-of-life decision-making to inform evidence-based training. This could, in turn, support HCPs in developing ‘cultural intelligence’ when discussing the value of medical interventions with patients who are at risk of deterioration and dying.