Family-Centred Care

The family-centred model of care, developed during the early 1990s, primarily in North America, in the area of children’s nursing, considered incorporating the family was fundamental to the care of the patient.¹⁶ Over the past two decades, the scope and extent of family-centred care has broadened and the Institute for Family-Centered Care defines family-centred care as ‘an innovative approach to the planning, delivery, and evaluation of healthcare that is governed by mutually beneficial partnerships among healthcare providers, patients and families’.¹⁷ Patient-and-family centred care applies to patients of all ages, and it may be practised in any healthcare setting.

Family-centred care is founded on mutual respect and partnership among patients, families and healthcare providers. It incorporates all aspects of physical and psychosocial care, from assessment to care delivery and evaluation.¹⁸ Healthcare providers that value the family/patient partnership during a critical illness strive to facilitate relationship building and provide amenities and services that facilitate families being near their hospitalised relative.¹⁹ When a clinical unit’s staff embrace a family-centred care philosophy and partner with families and make changes to the physical environment such as improved privacy and aesthetically pleasing decor, it can have the added advantage of positive culture changes for the staff. This indicates there is a benefit beyond the family members for whom the changes were initiated.²⁰

In trying to understand family-centred care, neonatal and paediatric ICU studies have focused on parents’ perception of care in the three key components of family-centred care: respect, collaboration, and support.^21–23 In the area of respect, families rated ‘feeling welcome when I come to the hospital’ and ‘I feel like a parent, not a visitor’ most highly.²¹ Within the area of collaboration, feeling well prepared for discharge and being given honest information about care were rated the highest. The familiarity of nurses with the special needs of patients was rated highest in the area of support.²¹

Strategies to improve family-centred care within adult critical care areas include involving family members in partnering with the nursing staff to consider the involvement they would like which may include providing fundamental care to their sick relative.²⁴ Family members can decide in consultation and negotiation with the bed-side nurse the care that they want, and are able to provide; this may vary from moisturising their relative’s skin to a full sponge and will require negotiation. This act of caring allows family members to connect in what they see as a meaningful way with their sick relative. In addition, it can also improve communication with critical care nurses and facilitate close physical and emotional contact with their relative.²⁵ An independent nursing intervention such as partnering with family to provide care provides an understanding of how to operationalise a family-centred care model in the clinical setting and assists in the evaluation of other future interventions directed to improve an area’s family-centred approach. Further research on the benefits of family-centred care is needed in all critical care areas.^24,26,27

It is greatly acknowledged that taking care of critically ill patients requires considerable knowledge and skill. When family members are incorporated into the caring paradigm, as advocated within family-centred care, health professionals equally need specific knowledge and skills.²⁸ This should be initiated in foundation degrees, postgraduate studies and via ongoing professional development opportunities.²⁸ A feature of family-centred care that makes it desirable in the critical care setting is how it strives to meet the needs of family.²¹

Communication

The ability to communicate effectively is an underlying tenet of nursing practice and a fundamental need for people. As mentioned previously in the context of caring for family members, for communication to occur, there needs to be a two-way passage of ideas or information. In the patient context the inability to communicate causes, or adds to, anxiety, frustration and stress^74–76 as they lose control over their life and decisions.⁷⁷ It is therefore imperative for health care professionals to find ways to communicate with patients. Critically ill patients commonly have communication difficulties due to either mechanical devices (e.g. endotracheal tubes),⁷⁴ cognitive impairment from the disease and/or pharmacological medications or language difficulties.⁷⁸ Therefore, effec-tive communication is challenging, and nurses need additional knowledge and understanding of these complex situations to meet medicolegal obligations and to assist in meeting the key information needs of patients and families.⁷⁹ As many critically ill patients are unconscious, it is important to understand the need for verbal communication to continue. Such communication did not occur in one Jordanian setting where in-depth interviews and observations used in three critical care areas identified that nurses communicated less with unconscious patients than with conscious patients.⁸⁰ It has been known for decades that sedated and unconscious patients can hear and recall some verbal communication once they regain consciousness.^81,82

Meeting information needs builds trust between the nurse and patient and their family as a relationship develops.⁷⁹ The nurse’s understanding of the person behind the patient is important to families, and can be achieved by talking to the family about the patient’s life before the illness.⁸³

Good communication is a prime patient need and inspires patient confidence, making patients feel safe.⁸⁴ When nurses reassure patients they provide a sense of hope and a feeling of safety, which is further supported by family members’ presence and the patients’ religious beliefs.^77,84 Constructive strategies should be identified to overcome difficulties with patient communication. This is worthwhile pursuing as it reduces both nurse and patient frustration and improves nursing care.⁷⁵ The following methods of communication may be used individually or together to enhance communication, and should be readily employed in critical care settings:^74,85

Although electronic voice output communication aids are used with disabled children and adults, they have not been evaluated sufficiently with an ICU population. These aids use prerecorded digitalised voice messages or synthesised speech, with the phrases accessed by the patient via a computer screen or keyboard.⁸⁵ This device would be restricted to those patients who are dexterous and able to select an appropriate key, which limits its utility in the ICU setting. However, some patients in a small study found electronic voice output beneficial, particularly when communicating with family.⁸⁵

An effective strategy to promote good communication is for health professionals to seek and maintain eye contact (if culturally appropriate). This may mean the nurse or doctor sitting down on a chair beside the bed to facilitate face-to-face communication.⁷⁹ This act also conveys a sense of the importance the health professional is placing on the interaction by taking time to ensure they understand each other. Associated with this is the need to use commonly understood language. One method of checking patients’ responses is to repeat these back to them. A quiet environment reduces extraneous noise and potential interruptions, and may promote communication and concentration. Codes may also be developed by the nurse and patient, with facial expression, head nods and eye blinks used to respond to questions.⁷⁵ These codes should be passed on to the next nurse and recorded in the patient’s notes to promote continuity of care.

When communication seems unsuccessful, talking loudly will not improve the interaction; one good strategy is for the nurse and patient to agree to try again later.⁷⁵ Communication can also occur through physical contact, and touch often communicates empathy and provides spiritual comfort.¹ Spiritual needs may further be met by providing comfort, reassurance and respect for privacy, and by helping patients relate to others.⁸⁶

Language barriers may necessitate the assistance of an interpreter with knowledge of healthcare terminology to ensure the content is adequately translated. An independent person ensures that the patient receives the message in its entirety from the health professional.⁷⁹ Interviews with previously intubated patients after discharge from the ICU capture, from the patients’ perspective, issues with communication and highlight the need for further improvement and understanding of the two-way process. An example of this was from an ex-patient, who related her situation: ‘They would come into the room in masses to talk to me. One doctor would stand there and read off a summary: “[Subject’s name], we find her this and that”, and they’d be saying stuff and I’d think “Oh no!” They would ask me, “Do you understand?”, “Are there any questions?” And I … “I don’t even know what you just said; how do I know if I have questions or not?” ’.⁷⁷ In this case, both parties were speaking to the other, but it was apparent that the patient was not able to take in and process the information about her current condition and therefore had difficulty comprehending. Basic principles of patient autonomy and respect need to be used cautiously with critically ill patients who may appear competent, when in reality their cognitive ability is impaired.⁹ Effective communication with the family is vital in order to determine the cultural beliefs and practices of patients and their family to further enhance communication and understanding.

Defining Culture

Wepa describes culture: ‘Our way of living is our culture. It is our taken-for-grantedness that determines and defines our culture. The way we brush our teeth, the way we bury people, the way we express ourselves through art, religion, eating habits, rituals, humour, science, law and sport; the way we celebrate occasions … is our culture. All these actions we carry out consciously and unconsciously’.^{87, p. 31} Simply, culture refers to the values, beliefs and practices that an individual, family members and nurses undertake on a daily basis. It determines how the world is viewed, and their orientation to health, illness, life and death.^88–90

Culture involves a shared set of rules and perspectives acquired through the processes of socialisation and internalisation, which provide a frame of reference to guide how members interpret such phenomena as health and illness and death and dying. This in turn influences their actions and interactions.⁹¹ Culture is a more specific way of describing how groups of people function on a daily basis, influenced by their beliefs, relationships and the activities they engage in.

Understanding that culture, ethnicity and race are not the same thing is crucial to meeting the cultural needs of patients and their families. Race is generally determined on the basis of physical characteristics and is often used to socially classify people broadly as Caucasians, Europeans, Polynesians or Asians, for example.^87,92 However, assigning people to a homogeneous group is problematic, the antithesis of cultural diversity,⁸⁷ and does not account for the diversity that exists within many groups in contemporary society. Ethnicity extends beyond the physical characteristics associated with race to include such factors as common origins, language, history and dress – it is usually associated with nations,⁸⁷ although a number of ethnic groups may exist within a nation.

Differing World Views

Culture influences how people view the world, what they believe in and how they do things, particularly with regard to practices around health, dying and death. The critical care environment is unfamiliar for patients and families, especially as health professionals’ beliefs, practices and world views may not align with their own. What is important for critical care nurses may not be important for the patient or the family, and may lead to tension and dissatisfaction when the way patients’ and families’ views are at variance. This does not mean that one world view is necessarily more right or wrong – they are different.

The biomedical model influences the way healthcare services are structured and delivered.⁹³ As a dominant model it heavily influences the necessary focus on the physical wellbeing of patients within critical care environments. Focusing on the management of disease and illness, and using processes that lead to health issues being fragmented and reduced to presenting signs and symptoms and diagnoses, risks excluding what is important for the patient and family.⁹⁴ This contrasts with indigenous cultures, for example, which tend to have a holistic eco-spiritual world view, with a strong spiritual dimension that extends beyond a disease and illness focus.⁹⁵ The world view of critical care nurses is influenced by the cultural beliefs, practices and life circumstances of each nurse, and the ‘world view’ of the critical care service that drives its service delivery. The result is that consequently, patients and their families become sandwiched between differing world views.

Research highlights the lack of alignment that can occur between the needs of consumers of health services and the intentions of healthcare providers such as nurses.⁹⁶ It is the potential for the non-alignment between patients and families and healthcare providers that critical care nurse need to be aware of, as dissatisfaction with the care being delivered may arise when the patient’s and family’s needs are not recognised or attended to,⁹⁷ leading to unnecessary tensions and conflicts between patients, families and nurses. A nurse’s willingness to acknowledge and respect patients’ world views and the things that are important to them minimises the occurrence of any dissatisfaction,⁹⁴ as it values their specific needs during their critical care experience.

Where the world views of patients and families are considerably different from that of the nurse, Ramsden urges nurses to identify the beliefs they hold about the patient and family, the impact of these interactions on the patient and family, and the power the nurse can utilise during such interactions.^98,99 Sometimes the nurse’s personal beliefs will be in conflict with professional nursing beliefs, which necessitates choosing between personal and professional beliefs in the practice setting. For example, a nurse’s personal beliefs about life, death and body tissues may be compromised by the duty to care for a patient with brain death awaiting the removal of organs for transplant. This may also be compounded by nursing staff shortages, less-than-desirable skill mixes, and the acuity and complexity that critical care nurses are faced with on a daily basis. Therefore, it is vital, not only for the individual nurse, but also for the team of critical care nurses to develop strategies that can optimise the development of working relationships with patients from different cultural backgrounds.

Cultural Competence

Different models exist to assist in the integration of the cultural beliefs and practices of patients and their family in critical care nursing practice. For example, Leninger’s cultural care diversity and universality theory⁸⁹ requires nurses to deliver culturally congruent nursing care for people of varying or similar cultures. Ramsden’s work on cultural safety^98,99 focuses on the delivery of nursing care to patients (whose cultural beliefs and practices differ from that of the nurse) that is determined appropriate and effective by the patients and families who are the recipients of that care. These models have been used to guide nursing practice in Australia and New Zealand, respectively. Such models require that critical care nurses recognise patients’ and families’ views of their health experience⁹³ and any that subsequently have discordant priorities. Wood and Schwass have described three levels at which a nurse may practise with respect to cultural issues (see Table 8.2).¹⁰⁰ These levels, ranging from cultural awareness to cultural safety, describe the differing characteristics of nurses’ cultural care. For example, a nurse practising in an organisation where cultural safety was required would need not only to recognise differences between groups of people, but also to deliver differing cultural care to individuals after undergoing appropriate education.

TABLE 8.2 Levels of cultural practice¹⁰⁰

From a transcultural nursing perspective, culturally competent nursing care requires the nurse to incorporate cultural knowledge, the nurse’s own cultural perspective and the patient’s cultural perspective into intervention plans.⁹⁰ However, Ramsden argued that it is not possible to collate cultural knowledge specific to various groups owing to the diversity that exists both among and within groups.⁹⁸ Therefore, critical care nurses are advised to critically examine theories and models to guide their practice, to ensure they deliver appropriate and effective care for the patients and families they work with.

Competence is an important dimension of nursing practice, as it provides users of nursing services with confidence in nurses’ knowledge, skill and attitudes necessary to undertake their practice. Given the importance of culture in the delivery of nursing care, the measurement of cultural competence is also important. There is evidence of numerous variations on the concept of cultural competence.^101–103 The attributes of cultural competence include cultural awareness, cultural knowledge, cultural understanding, cultural sensitivity, cultural interaction and cultural skill.¹⁰¹ However, the inherent need for the acquisition and use of culturally specific information limits the application of these attributes: the collation of culturally specific information is becoming increasingly problematic as our communities become more diverse in their composition.

Cultural competency is about practising in a sound manner rather than about behaving correctly.¹⁰⁴ Durie encouraged the development of cultural safety (which focuses on the experience and determination of the appropriateness of care received), to a construct that can measure the capability of the health worker, such as the critical care nurse.¹⁰⁴ Culturally competent nursing practice is about:

Cultural competence provides a framework to objectively measure the nurse’s performance. The ability of the critical care nurse to deliver culturally competent and safe care is dependent on determining the cultural needs of patients and families, and the provision of patient-centred, individualised care.

Determining the Cultural Needs of Patient and Family

The concepts of health and illness are generally constructed within the context of people’s sociocultural environment and the groups they belong to; these vary from person to person and group to group. To this end, culture influences how health and illness experiences are constructed and lived. When people become critically ill, their cultural beliefs and practices can be just as important as their physical health status.¹⁰⁵ Yet cultural beliefs and practices are often compromised when healthcare providers’ concern about physical health takes precedence – invariably, health services also do things differently than patients and families would do them. While the importance of psychosocial and cultural needs is the focus of this chapter, the presence of life-threatening events or crises experienced by the patient in critical care must rightfully take precedence. However, on stabilisation of the patient, creating a positive working relationship with the family can facilitate the determination of their perspectives and needs and negotiation about how these can be included in a potentially complex plan of care. Incorporating cultural requirements becomes vital in a delivery of nursing care that is both appropriate and acceptable. Therefore, given the nature of critical care settings, the quality of interactions with the patient’s family is just as crucial as interactions with the patient.

Promoting a genuine, welcoming atmosphere and the use of effective communication invites the family to be involved early in the patient’s critical care experience, and is essential to determine the cultural needs of the patient and family. While communication has been mentioned earlier, interpreting cultural needs requires the critical care nurse to be attentive to communication. Nurses are advised to talk less, attend to details that may arise, and simply listen. The need to intervene and to dominate discussions and ‘interviews’ with the family¹⁰⁷ from the nurse’s perspective needs to be curbed, so time is made available for cultural beliefs and practices to be shared.^20,94,105 Understanding and supporting the patient and family can be improved by the nurse’s empowering them through the processes of listening, understanding and validating what they have to say.^106,107 Conning and Rowland’s research on the attitudes of mental health professionals towards management practices and the process of assessing patients and decision making found that those who had a greater ‘client orientation’ (versus management orientation) were more likely to engage in assessment processes that facilitate patient-centred, individualised care.¹⁰⁸

Working in partnership with a family can bridge the cultural ‘gap’. However, this is not always easy to achieve in challenging situations, such as when various members of a large family come and go, compounded by changing nurses with shift changes. Receiving clear and consistent messages about the patient, including his/her progress from all members of the health care team, can reduce cross-cultural confusion and misunderstanding, especially as messages are prone to distortion and change when many are involved. A strategy to manage this may involve discussing the management of information dissemination with the family, and the identification of one or two family members who become the point of contact through which staff discuss and communicate information about the patient.⁹⁴ Often apparent ‘cultural conflicts’ will arise as a result of communication problems with the family; communicating information in a clear and understandable manner helps prevent these problems from occurring.

Individualised Care

‘Individualised care requires the patient and nurse to work together to identify a path towards health that maintains the integrity of the patient’s sense of self and is compatible with their personal circumstances’.^{109, p. 46} This means the critical care nurse ideally working in partnership with the family to identify important cultural beliefs and practices that need to be observed during the patient’s critical care experience; in other words eliciting a patient’s view to individualise care.¹¹⁰ It is recognised that ‘the work’ of the nurse involves responding, anticipating, interpreting and enabling, all of which are crucial for individualised care.¹¹¹ Indeed, partnership requires the nurse not only to work with the patient and family but also to identify the power that the nurse possesses and the potential for its inadvertent misuse.⁹⁴

Facilitating the inclusion of cultural beliefs and practices requires them to be identified and then incorporated in an individualised plan of care. However, given the resource constraints and the culture of some health services, universal approaches to planning care may be adopted for convenience. The critical care nurse is discouraged from adopting a ‘one-size-fits-all’ approach to nursing practice, as this disregards the cultural systems of the patient and family.⁹⁴ Individualised care is optimised by nurses having sufficient information about the patient and family in order to identify the needs and plan interventions. Incorporating each family’s cultural beliefs and practices provides a ‘bigger picture’ of the patient¹⁰⁵ than would have been gained by simply focusing on the presenting disease or illness and its management. Such an approach to individualised care enables the critical care nurse to become familiar with the context of the patients’ life circumstances and how they interpret illness, and also improves the quality of care and interactions they have with patients and families.^112,113

Sometimes the nurse will want to have a full understanding of a cultural belief or practice before being willing to incorporate it. For example, several years ago a Māori patient was dying and the family wanted to organise the patient’s expedient removal from the hospital environment on the patient’s death. This was necessary so that the spiritual and cultural grieving processes could be commenced. But the nurse blocked the family’s desire to plan and organise a prompt postmortem on death because the patient had not yet died. This created unnecessary tension and conflict between the nurse and the family. Clearly the nurse’s and the family’s beliefs about death and dying were different, and the apparent position of ‘power’ adopted by the nurse did not encourage communication and negotiation about how this situation could be resolved to the satisfaction of both parties. This is an example of where the identification and acceptance of cultural beliefs and practices of the family (to the extent that they will not deliberately harm the patient), and working with the family on how these are incorporated in an intervention plan, can be beneficial to all parties. Once this has occurred, it is crucial this information is documented thereby making visible the patient’s individualised care.¹¹⁴

Working with Culturally and Linguistically Diverse Patients and Families

Globalisation has resulted in increasing immigration and migration in both Australia and New Zealand, thus populations are increasing in their cultural and linguistic diversity. In 2006 Australians and New Zealanders comprised 24% and 20%, respectively, of peoples who were born overseas. Immigrants arrive from various countries globally, but especially the European, Asian and African continents. Labels assigned to groups of ‘immigrants’, such as Asians, are misleading and far from the homogeneity they infer. Added to the complexity of trying to determine ways of working with culturally and linguistically diverse patients and families is the variation in their degree of acculturation – for example, some may be second- or third-generation Australian- or New Zealand-born and highly acculturated into the respective culture, or they may be new immigrants with traditional cultural beliefs and practices. Therefore, given this diversity it is difficult to provide specific guidelines on working with culturally and linguistically diverse patients and their families, although some common principles exist.

A fundamental starting point for working with culturally and linguistically diverse patients is to establish their capacity to communicate in English. Determining the language a patient uses on a daily basis and whether they can speak and write in English, will indicate whether an interpreter is needed. Family members or friends can be used as interpreters when care is being undertaken on a daily basis, although a professional or accredited interpreter should be used when important information is to be shared or when decisions need to be made. This avoids the potential for family members or friends ‘censoring’ the information conveyed during discussions. How the patient prefers to be addressed, cultural values and beliefs related to communication (e.g. eye contact, personal space or social taboos), preferences related to health care providers (that is culture, gender or age), the nature of family support, and usual food and nutrition are other areas that should be explored with the patient or family, whichever is appropriate.

Given the great diversity that occurs within contemporary cultural groups, it is crucial to develop a relationship so important cultural values, beliefs and practices can be identified and incorporated into the patient’s plan of care. Critical care nurses can then better understand patients’ or families’ behaviours when the patient is critically unwell. Discovering the values and beliefs patients and their family have about health, illness, death and dying, and what they believe may make their health worse, is a good starting point, and will provide insight into the type of support and caring behaviours that may be observed. In addition to this, identifying how health and illnesses are managed will provide an indication of whether traditional healers are used, along with healing remedies, such as herbs and prayer for example. Also understanding the patient’s locus of control can also provide an indication of whether they will play an active role in the outcome of an illness, or whether there is a fundamental belief that illnesses are caused by some external force.

For many cultural groups the presence of family is vital to both the patients’ and family’s spiritual wellbeing. Therefore, facilitating family presence at the patient’s bedside and possibly including them in the care of the patient is important. For some cultures there is a belief that family members should shoulder the burden of information and decision making so the patient can expend their energy and focus on getting better. In some cases to burden the patient with information about their condition, especially its gravity, or having to make decisions, is believed to contribute to a negative outcome. Thus, positively engaging families and where practical patients in collaborative relationships, involving them in the care and decision making, and ensuring their cultural values, beliefs and practices are protected, are ways critical care nurses can respect the cultural traditions of those patients who are from different cultural and linguistic backgrounds.

Campinha-Bacote’s¹¹⁵ mnemonic, ASKED, provides a process for self-reflection to make explicit your knowledge and skills and desires to work with people who are culturally and linguistically diverse. The following questions can be asked:

By critical care nurses understanding their position on nursing people from other cultures, strategies can be adopted to improve their responsiveness and quality of care delivered. Working with culturally and linguistically diverse people should be based on the following framework:

Considerations when caring for indigenous people are reviewed in the next section. Closely related to cultural aspects of care is spirituality, which for some is based in religion. Aspects to consider when patients have religious needs are reviewed later in this chapter.

Working with Māori Patients and Families

Māori are the indigenous people of New Zealand, and like other indigenous people who have survived the processes of colonisation, they experience poorer health status, health outcomes and socioeconomic disadvantage than other groups in the New Zealand population. Māori were not a homogeneous group of people before settlement by European people, and contemporary Māori continue to be diverse in their iwi (tribal) affiliations, cultural identity, backgrounds, beliefs and practices,¹¹⁶ and in the colour of their hair, eyes and skin. The critical care nurse ideally needs to recognise the diversity that exists, and have a sociopolitical and historical analysis of contemporary Māori. This positions the critical care nurse to understand the importance of, and respecting the need to undertake assessments with Māori patients and whānau regarding their cultural needs (see Table 8.3).

TABLE 8.3 Considerations for working with Aboriginal or Māori people

Aboriginal view of health and health beliefs

Aboriginal people of Australia have a different view of health from the dominant Western view. This view incorporates notions of body, spirit, family and community.¹²⁶ The patient-centred model described by Espezel and Canam¹⁵ fits nicely with the Aboriginal view of health. Described as far back as 1989 in the National Aboriginal Health Strategy,¹²⁴ the Aboriginal view of health is a holistic view in which the sense of family is integral to the sense of oneself, which is in turn essential to health.¹²⁷

The Aboriginal view of health and how Aboriginal people relate to the healthcare system influences the care given. The following are specific beliefs Aboriginal people have about health and medicine:

These are important points for nurses to understand, as these health beliefs may influence people’s perceptions and may be mistaken for non-compliance with medications, or feelings of doom and not wanting to get better. It is important to explore how traditional Aboriginal medicine and health beliefs can be used complementarily with Western medicine – a particularly important point for the palliative care of Aboriginal people.

Importance of family, community and land

Aboriginal people have a strong connection to family, community and the land they live on. Some Aboriginal people have a number of communities: the one they were born into, the one they move to, and the one they work in. There are a number of Aboriginal people who have never left their original community or land. The ties Aboriginal people have to their people and land are so strong that, rather than receiving lifesaving care, many prefer to refuse the treatment and die on the land that they belong in, with their family and community present.

There are members (elders) of the community who often speak on behalf of that community and its people. A similar approach occurs within families, where spokespeople speak on behalf of the family and its members. These spokespeople could be either male or female (brothers, sisters, ‘Aunties’ or ‘Uncles’), and spokespersons differ from community to community. Some Aboriginal communities have lores that dictate that only women talk (women’s business) or only men talk (men’s business). It is important that critical care nurses identify who is the spokesperson of the patient from the outset and who is the right person to talk to about all aspects of the patient’s care.

Often, Aboriginal people are transferred from remote or rural areas to major hospitals for specialist services. This can cause great anxiety for the patient, family and community and can often lead to the patient refusing care or transfer. It is important that the family be informed about the potential for relocation, that it is important and that the family be given time to talk it over. In reality, the importance of the family being able to spend as much time as possible with the patient cannot be underestimated. Having the opportunity to pass on knowledge through stories to family members is important for Aboriginal people. The critical care nurse can facilitate this by allowing the time and the space for this impor-tant storytelling to occur. However, financial constraints and geographical distance may make family visiting difficult.

The interface between critical care, the hospital and primary health care is a critical part of the patient’s journey. It is important that critical care teams have partnerships with their local Aboriginal Community Controlled Health Services. This enables planning of care across the continuum, as Aboriginal people will often have follow-up visits with their local Aboriginal healthcare services.

Communication

Aboriginal culture is one of the oldest living cultures, one that is based on a deep sense of spirituality and oral history. Traditionally, knowledge has been passed down from generation to generation through storytelling and yarning. In some communities traditional languages are still being used, and English may be a second or third language for many Aboriginal people. Critical care nurses may need to identify interpreters to optimise communication with patient and family. Interpreters can be family members, Aboriginal Health Workers or Aboriginal Liaison Officers. Health information and health literacy is a vital part of communicating with Aboriginal people. It is important to identify the need for culturally appropriate resources, including visual aids, and to take steps to access these.

Aboriginal Health Workers

Aboriginal people access health care in two ways: through Aboriginal Community Controlled Health Services and through mainstream health services. There are many reasons why Aboriginal people do not access mainstream health services. Some of these barriers are related to transport, fear of institutions, or culturally inappropriate healthcare services. Anecdotally, Aboriginal people are more likely to access mainstream health services if there is an Aboriginal person employed in the services.

There have been efforts to increase the number of Aboriginal registered nurses to improve the competency of the Australian nursing workforce in delivering appropriate care to Aboriginal people.¹²⁶ This move is supported by the ‘getting ’em ‘n’ keeping ’em’ report of the Indigenous Nursing Education Working Group,¹²⁸ the Commonwealth Department of Health and Ageing and the Office for Aboriginal and Torres Strait Islander Health.¹²⁸

Issues around death and dying

There are a number of important cultural factors surrounding death and dying relating to Aboriginal patients and families. Aboriginal people have a deep spiritual connection to the land, the country; this is part of their dreaming. The most important factor will be the need for the Aboriginal patient to go ‘back to country’, back to their traditional lands to die or to heal. The critical care nurse should allow time and facilitate discussion with the team around these issues and to also make sure that the relevant family or community member is present.

However, many times the Aboriginal patient will die in the critical care setting. If this happens there are certain protocols that need to be considered. Gender-appropriate care may be needed, as often male elders will not allow women into their room, and will request a male nurse to care for them. It is important to note that some Aboriginal communities do not allow health professionals to handle the body after death. The critical care nurse needs to discuss with the family issues that relate to handling of the body. Some Aboriginal communities do not allow the body to be cremated.

Aboriginal people have a distinct culture and health beliefs that can interfere with the Western view of medicine and health. It cannot be stressed enough that the integration of the patient’s culture into the critical care setting is important to achieving health gains. The critical care nurse needs to know the Aboriginal community or communities and develop relationships in order to improve the health experience of Aboriginal people.

This section has highlighted the importance of consideration of cultural differences in nursing care of the critically ill Aboriginal person, with important points summarised in Table 8.3. Some important cultural aspects that need to be taken into account are:

Patient Comfort and Palliative Care

Maintaining patient comfort and support for families and staff are primary requirements of nursing patients during the end stages of life. Advanced directives and ‘not for resuscitation’ orders should be in place to prevent mismanagement and understanding of patient care (see Chapter 5).³¹ Maintenance of patient comfort through care guidelines to facilitate a ‘good death in ICU’¹³⁷ are designed to control symptoms such as agitation, pain and breathlessness and are extremely important from the patient, family and nurses’ perspective.^138–140 Although this may seem fundamental, there is evidence to suggest this is not always achieved, with 78% of over 900 North American critical care nurses perceiving that patients received inadequate pain medications ‘sometimes’ or ‘frequently’ during end-of-life nursing in critical care areas.¹⁴¹

Collaboration and early involvement by palliative care teams is one way to integrate end-of-life care for patients who either remain in critical care areas or are transferred from the unit to other areas.¹³⁹ Withdrawal of mechanical ventilatory support requires adequate provision for management of potential agitation, pain and hypoxia.¹⁴⁰ Opioid and benzodiazepine agents should be considered for administration before and after extubation to prevent agitation and pain. Choices of bolus or infusion administration need to be based on patient comfort issues. Oxygen therapy is continued in the most appropriate form, and an oral airway may improve patient comfort and aid secretion clearance. Atropine and scopolamine have been reported to successfully reduce copious oral secretions and enhance comfort.¹⁴²

The attainment of humane nursing care must include heightened efforts in achieving quality indicators, such as mentioned above – adequate management of pain and nausea, agitation and restlessness. Both critical care staff and families should continue to communicate with the patient by speaking and touching as this can have a calming influence. Comfort measures to enhance holistic care delivery should continue and may include:

Patient dignity should be a priority, with gowns or personal attire essential elements of care. The management of symptoms further allows patients to maintain their dignity. Privacy for patients and their families allows an opportunity for them to communicate without the constraints of observers.¹⁴³ As indicated in previous sections of this chapter, patient and family culture, beliefs and spiritual values are important considerations that underpin care.¹³⁷

Family Care

Care of the family is supported by proactive palliative care interventions that include empathic, informative communication with interdisciplinary team meetings and family conferences that are not rushed where families are integral to decision making and goal planning.^31,52,144 The desire to participate in decision making varies from family to family, and cannot be assumed. Ascertaining individual families’ needs for decision making is therefore recommended¹⁴⁵ as families are best placed to have an understanding of patients’ wishes, which can be taken into account when decisions are made.¹⁴⁶ Structured communication between the health care team and families can assist with earlier decisions and goal formation about care.¹⁴⁷ Emotional and practical support can be given to families by providing written material about the critical care area, local facilities and specific information on bereavement.⁵² Privacy is not always possible in the busy critical care environment, but maximising efforts in this regard for dying patients and their families provides a more conducive environment for strengthening patient–family relationships and communication.¹⁴⁸

While the family grapple with some or all of the five stages of grief defined by Kubler-Ross: denial, anger, bargaining, depression, and acceptance,¹⁴⁹ nurses need to provide the physical and psychological care for patients and families.¹⁵⁰ This can be achieved when there is patient and family-centred decision making, good communication, continuity of care, emotional and practical support; and spiritual support can assist with this.¹⁵¹ Individualising the care to the family is essential, and support measures should be instituted after a full assessment of their needs. Without support, abnormal grief reactions can occur, which decreases the family’s ability to cope with everyday needs and may progress to unresolved grief.¹⁵²

The detrimental effects of long-term unresolved grief after the death of a loved one are well documented. Current terminology favours the term of prolonged grief disorder (previously called complicated grief) which has clinically disabling grief symptoms including, amongst others: a preoccupation with thoughts of the loss; avoidance of reminders of the loss; disbelief over the person’s death; feeling lonely since the loss; feeling that the future holds no purpose; and feeling stunned or shocked by the loss.¹⁵³ These symptoms can result in elevated morbidity and mortality levels associated with depression, cardiac events (including a higher risk of sudden cardiac death), hypertension, neoplasms, ulcerative colitis, suicidal tendencies, and social dysfunction (including alcohol abuse and violence).¹⁵⁴ These potentially harmful outcomes provide strong motivation for critical care clinicians to initiate family support mechanisms such as bereavement services.¹³⁹ Bereavement programs aim to reduce the immediate physical and emotional distress for those grieving, while improving the long-term morbidity associated with unresolved grief.¹⁵⁵

Although critical care clinicians in the UK,¹⁵⁶ USA,¹³⁹ Europe and Canada¹⁴⁵ are conducting dialogue and developing guidelines for bereavement care in critical care, little evidence-based research has been conducted on bereavement care strategies.¹³⁹ An exception is a bereavement program developed by a group of nurses from a British ICU, who instituted a booklet on ‘coping with bereavement’, an after-care form for the clinical nurse to complete with details for follow-up with the family, and a sympathy card and letter inviting family to participate in support group meetings.¹⁵⁶ Although initial evaluation of the program through feedback from participating family members was positive, the team acknowledges that this does not constitute rigorous research. Evaluation of bereavement services in Australian adult ICUs was also reported to be inadequate, as no data could be located concerning bereavement services in other areas of critical care. Only 30% of ICUs provided some follow-up care, and only four units had any evaluation other than anecdotal evidence.¹⁵⁷ It is imperative to assess new and existing bereavement interventions and how well they meet the needs of families through rigorous evaluation. Legitimising research on this vulnerable group is required to improve end-of-life care for families and patients.¹⁵⁶

Care of the Critical Care Nurse

The two previous sections have focused on care for the dying patient and the patient’s family. Critical care nurses who care for both patients and families also require care in bereavement situations. Caring for dying patients is emotionally draining and highly demanding of the critical care nurse, who often fails to notice or acknowledge the need to grieve.^158,159 In addition, critical care nurses may not have the knowledge and understanding of palliative care and death in the critical care environment and a specific educational program and unit guidelines on palliative care may provide support and reduce burnout.^137,139

Once the patient has died, nurses may not have the opportunity to mourn publicly and may feel they are acting unprofessionally if they show overt signs of grief.¹⁵⁸ Dealing with the death of patients may be exacerbated in some critical care environments, particularly in the rural setting, where the nurse may know the patient outside the work environment. Collaboration with colleagues from oncology areas or palliative care teams will provide guidance and support to critical care nurses as they develop better organisational and emotional support for each other.¹⁶⁰ Effective palliation occurs when the multidisciplinary team, including senior management, collectively develops a philosophy for palliative care and bereavement services.^151,139

Nurses depend on colleagues and friends for support when patients die, and value debriefing sessions.¹⁵⁶ ‘Debriefing’ sessions can have a number of interpretations. For example, ‘debriefing’ in critical care often takes the form of an opportunity to share feelings. Alternatively, it may be for a procedural clinical review of events where the objective is to understand and learn from the situation.¹⁶⁰ Both components of debriefing are important, together with the opportunity to provide mutual support within the multidisciplinary team. The effectiveness of sessions should be evaluated.

A ‘grief team’ provides more formalised support from colleagues that have been given additional education on grief, dying and death.¹⁵⁸ This enables a program of care, and may include such strategies as assessing the welfare of the staff immediately after the death of the patient; being present for staff members to express their feelings; providing follow-up and information on coping mechanisms during grief.¹⁵⁸ Accessing experts from outside the unit’s usual resources may be helpful with de-briefing in especially challenging situations.¹⁶⁰ Dealing with death is never easy; however, an awareness of colleagues’ needs is a key to providing the support they require.