Loss, grief, bereavement and mourning

No one is immune to the effects of loss at some time during the course of a lifetime. When nurses care for those who are experiencing reactions to loss, they will find wide-ranging behaviours and, perhaps, confronting encounters with people in distress. For many nurses these reactions are the source of concern, either through empathy for suffering of others or from a sense of inadequacy in dealing appropriately with the situation. For some nurses early in their practice, it can be tempting to rely on standard problem-solving techniques and responses learned by rote; but these may not always be possible or desirable in times of crisis. Frequent encounters with death have been found to be the most challenging and intensely personal experiences of those working in the healthcare environment (Currow, 2004).

Clearly, it is important for nurses to have an accurate understanding of the key terms in this field: loss, grief, bereavement and mourning. Sometimes these are colloquially used interchangeably, and certainly can be used in varying cultures and communities in different ways. However, the foundations for understanding rest in these definitions.

Loss refers to that state that exists when something to which one has an attachment is now gone. While commonly used to describe the experiences of people following the death of another person to whom they are emotionally or socially attached, it also applies to any loss experienced following detachment: for example burglary with theft of personal possessions; miscarriage; divorce; the loss of functional independence with chronic illness or injury; the loss of dignity, privacy and confidence that may accompany relocation into a residential-care facility. Types of losses are explored in more detail below.

The multifaceted assortment of reactions to the experience of loss is called grief. These reactions are complex, and experienced with interrelated physical, emotional, behavioural and cognitive aspects. Raphael (1999:22) once described grief as ‘an inevitable consequence of the intensity of human attachments’; it has been described as the price we pay for love and investing ourselves in others. Grief has the power to upset the body’s stability, which is vital to our sense of self (Freeman, 2005) and may manifest itself in ways that are disruptive and disturbing to the person experiencing it. Grief is both unique to each person and a highly complex sociological phenomenon. Grief varies enormously from one person to another and sometimes between men and women, and may be hindered or helped by the support offered. Descriptions of normal and abnormal grief reactions in adults and children follow.

Bereavement is a term referring to the objective state of having lost attachment to something of value; it is situational and tangible. In Australia and New Zealand, the word is largely used to apply specifically to a person who has a relative or friend who has died, although this usage varies. Thus it is possible to refer to someone as ‘bereaved’—such as a widow or widower—who may not be actually ‘grieving’ if their adjustment to their changed circumstances has resolved.

The cultural and social practices around the expression of grief and bereavement are collectively known as mourning. These are influenced by culture, religious affiliation, family expectations, personality and other factors. Mourning typically possesses a ritualistic quality. Martin and Doka (2000) indicated that ritual is best defined as ‘special acts that offer sacred meaning to events’. Funerals are rituals; they provide visual confrontation of the death, social support, a safe haven for the bereaved, rites of passage for the deceased and a way of disposing of the body. For thousands of years people have relied on some form of ritual to mark human death and fulfil vital psychological, spiritual and social needs of the bereaved. Ceremonies have formed part of mourning and burial rituals for tens of thousands of years of human history (Howarth, 2007; Kellehear, 2007).

In recent decades traditional forms of mourning have become less prevalent, with more informal and secular practices increasing in popularity. For example, in Australia and New Zealand fewer people are opting for church funerals; instead, secular events facilitated by a civil funeral celebrant in non-consecrated settings are seen more often. While predominantly secular in nature, these ceremonies can still have ritual power—recent incidents of mass death of younger persons, such as in the 2003 Bali bombings, saw secular mourning rituals played out on football fields and in ‘surf circles’ throughout the region (Rosenberg, 2009).

FIGURE 25-1 ‘Surf Circle’.

Image: Nick Paris, 2010.

Categories of loss

It can be helpful to think about different categories of loss; it can be seen from these descriptions that loss may take many forms and does not simply describe the loss of a person through their death. Understanding these categories of loss enables the nurse to anticipate the likely lived experience of the client. This in turn can enable the nurse to respond appropriately and sensitively to the client’s reaction to their loss.

Normal grief patterns for adults

People’s reactions to loss are varied and highly individual; however, a number of patterns can be identified that are considered ‘normal’. Sadness, anger, fear, anxiety and denial are common reactions to loss and can sometimes represent adaptive responses to stress. It is, however, important to note that the grieving person does not necessarily experience all of them. Freeman (2005) and Corr and others (2003) suggest that responses from physical, behavioural, cognitive, emotional and spiritual domains may be manifested during the grief experience (Box 25-1).

There have been some groundbreaking grief theories that have helped us have better insights into the experience of people experiencing loss. The early work of Sigmund Freud (1856–1939) introduced three significant concepts that influenced 20th century thinking about grief:

Freud’s work was influential in subsequent attempts to describe the experience of grief. An important contribution was made by John Bowlby (1907–1990), who proposed that a person’s reaction to loss is underpinned by a sense of violation of their attachment to the lost object. He went on to describe four phases experienced following loss: numbing, yearning, disorganisation and reorganisation; importantly, he noted that these phases do not happen in a set order, and this is an important concept to grasp in understanding grief (Cobb, 2008). Similarly, Colin Murray Parkes (1928–) explored grief as a transition between a world that is assumed to be known and stable, and one in which control is lost as the bereaved person adjusts to a new reality. Parkes also described phases, using the terms numbness, pining, depression and recovery, to describe normal patterns of grieving; again, he notes that these are not necessarily a linear process (Cobb, 2008).

Perhaps one of the best-known grief theories has emerged from the work of Elisabeth Kübler-Ross (1926–2004), a Swiss-American psychiatrist who interviewed dying people to better understand their experiences as their lives came to an end (Kübler-Ross, 1969). In its application to bereavement, it proposes that people move through stages of grief not unlike the phases suggested by Bowlby; the theory gained tremendous traction both with healthcare professionals and with the general public, and is often assumed to be the most accurate description of ‘normal grieving’; however it has been strongly criticised because these stages have been assumed to take place sequentially. Payne and others 1999 have provided a comprehensive critique of this model.

In his pioneering work in the area of grief and loss, J. William Worden (1932–) proposed that the grieving person faces four ‘tasks of mourning’ that contribute to their adjustment to their loss:

Importantly, over time Worden has amended this fourth task to reflect the ongoing nature of remembrance and so that ‘moving on’ or ‘getting over it’ is no longer the goal of mourning; rather, the adjustment to changed reality is an ongoing process. It has been rephrased as ‘to reinvest energy in life, loosen ties to the deceased and forge a new type of relationship with them based on memory, spirit and love’. More recently, Worden has modified this model to include consideration of meaning making, resilience and continuing bonds (Worden, 2009).

Each of these attempts to describe the nature of grieving may be helpful, but should be used with caution by nurses. Indeed, some argue that applying standardised models of bereavement can be the source of depersonalised care that devalues the experience of the griever (Cobb, 2008). Grieving is a highly individual phenomenon, influenced by personality, culture, family and other contextual issues, and any model must not be considered prescriptive of the process. These models should thus be used to provide frameworks for understanding the experiences of loss and grief, rather than as some sort of ‘recipe’.

Grief and gender

Some discussion has taken place regarding gendered differences in grieving patterns (Millan, 2010; Rosenberg, 2009). Most cultures provide social sanctions for the expression of emotions such as sorrow and anger which often differ between men and women. Emotions expressed by people of one culture may not necessarily be sanctioned in another; for instance, in many Western cultures men have been socialised not to cry and society discourages men from the public expression of tears (Golden, 1996). A notable exception to these gendered expectations in Australia and New Zealand can be found in the sanctioned grieving and memorialisation on ANZAC Day, where fallen soldiers are commemorated and returned soldiers honoured; in this setting, the public expression of emotion by men in the context of grieving is considered acceptable (Rosenberg, 2009).

In Australia and New Zealand, then, certain assumptions about gender are popular: we have a stereotypical picture, for example, of the stoic, controlled man whose grieving is intensely private; we have an impression, perhaps, of the grieving woman who shares her feelings readily and finds great solace in the connections she makes in a grief support group. Are there are ways of grieving that are more ‘masculine’ or more ‘feminine’? Consider the assumptions listed in the critical thinking exercise below.

• CRITICAL THINKING

In your experience, do these assumptions about gender and grieving hold true?

Women talk readily about feelings.	Men are stoic and appear to lack feelings.
Women tell and retell their stories to make sense of it.	Men know the story is etched in their mind; no need to be reminded.
Women seem to feel their way through grief—emotions are the pilot.	Men tend to think their way through grief—intellect is the guide.
Feminine language is often described as intuitive, earthy, fluid.	Masculine language is thought to be orderly, concise, controlled and goal-orientated.
Women focus on connection, intimacy and interdependence.	Men focus on independence, self-reliance, less self-disclosing, less expressiveness.
Women seek companionship, including groups.	Men appreciate time alone to think it through.
Women are more amenable to demonstrative expression of feelings in group work.	Men are more likely to benefit from being left alone to work through their grief.

In reflecting on these assumptions, it would be fairly easy to identify a number of people for whom they simply don’t apply: a woman who is intensely private in her grieving, or a man who is demonstrative and open about his feelings of sadness. Most grieving people sit somewhere between the two, and it can be helpful to conceptualise grief patterns and gender along a continuum, rather than in two mutually exclusive boxes.

Yet this continuum is not ‘female male’ or even ‘feminine masculine’. Grieving is not really about gender, but about individual styles, and is in a constant state of change. Figure 25-2 illustrates a number of factors that influence how an individual might grieve; importantly, these factors themselves are dynamic and changing—for example, cultural norms around mourning behaviour in a second-generation Australian may have been modified by assimilation.

FIGURE 25-2 Factors in gender and grieving.

Individual grieving styles

Another way of understanding individual grieving styles comes from considering differing styles on a continuum ‘intuitive instrumental’ (Figure 25-3). The characteristics of each end of this continuum are described below.

FIGURE 25-3 The continuum of gendered grieving.

The intuitive griever:

• experiences intense feelings of loss

• will talk to process feelings

• demonstrates outward expressions such as crying and lamenting, which mirror their inner experience (‘wear your heart on your sleeve’)

• may experience prolonged periods of confusion, inability to concentrate, disorganisation and disorientation

• often feels physically exhausted and/or highly anxious.

An intuitive griever’s adaptation to loss is shown through their lived experience of grief and their expression of feelings; they typically benefit from connection with others, sometimes in groups. As many of these characteristics have been assumed to be ‘feminine’, some male intuitive grievers may seek validation that their grief reaction is ‘normal for a man’.

Intuitive grievers are at risk of slowing their own progress towards adjustment, as their empathy for others can distract them from their own needs. Moreover, as intuitive grievers rely on relationships and interconnection to navigate their grief, they can focus fully on this process at the cost of their health and usual activities.

At the other end of the continuum, the instrumental griever:

• experiences feelings, but these are less intense and less obvious

• tends not to cry, although may feel pressure to do so

• considers mastery of their feelings and recovery as important; controlling their behaviour is valued

• talks to process issues, not feelings

• commonly experiences brief periods of cognitive dysfunction—confusion, forgetfulness, obsessiveness

• Often has enhanced energy levels; ‘doing stuff’ is an outlet.

Instrumental grievers typically use problem solving as a strategy to enable mastery of their feelings and control of the environment in creating their ‘new normal’. Not always isolated, their connections with others can be made by ‘doing with’ rather than ‘sharing with’. Female instrumental grievers can be judged as ‘cold’ or ‘uncaring’ because their grieving doesn’t necessarily include crying.

The risk for instrumental grievers is that because their grieving style is less obvious, they can in fact be leaving their grief unattended to, and poor health outcomes can eventuate as a result. Significantly, both intuitive and instrumental grievers can experience prolonged periods of confusion, inability to concentrate, disorganisation and disorientation as a normal reaction to grief.

It is important to remember that while people will usually demonstrate predominantly one or the other tendency on this continuum, most sit somewhere in between, in a ‘blended’ mix of the two.

Normal grief patterns for children

Understanding of death and responses to loss and death vary according to age. Like adults, children are not immune from grief reactions to loss and bereavement. Understanding the psychological and emotional development of a child is essential to the provision of support that is appropriate to each child’s developmental stage. Children experience age-related constraints on their ability to comprehend and deal with loss (Piaget, 1970). All children move through cognitive developmental stages in a set sequence; however, the rate of cognitive development varies among children. Although children may not totally comprehend the concept of death at an early age, it has been argued that they do experience separation anxiety and a perception of what it is to lose something or someone. As the child grows, an understanding of what it means to die develops (Table 25-1), and this conceptual understanding continues through middle to old age where the loss effect is diminished.

TABLE 25-1 CHILDREN’S RESPONSES TO DEATH

There are certain rules that govern the sequence of stages:

Personal experience is also an important component of human development. It is crucial to shaping an individual’s attitudes and behaviours, and this is particularly relevant in terms of each person’s experience with death, dying, grief and bereavement. Coming to terms with loss entails a personal quest by the survivor to make sense and meaning of the loss experience—consider Worden’s tasks of mourning discussed above. It is also a time for putting the loss experience into perspective, re-evaluating previously held knowledge, beliefs and attitudes, and moving on. This is largely influenced by how people perceive their social world and their place in it. During bereavement, four factors which develop throughout childhood, adolescence and young adulthood help condition emotional responses: personality, social roles, personal values and perception of the importance of the deceased.

Personality

Put simply, behaviour is the way one conducts oneself. The personalities of individual human beings are often consistent, and reveal qualities in their behaviour that in many respects can be predicted. For instance, some people will shy away in some circumstances where others will, perhaps, be aggressive, warm or outgoing. People have learned to count on certain behaviours in those they know, for example family members and close friends.

By assuming that a person will react in a certain way, the implication is that we have certain knowledge about that person’s personality. A working definition of personality is proposed by Clarke (1995) as ‘a dynamic compilation of instinctual emotional predispositions and psychological factors which, when combined, determine our unique adjustment to the environment’. Personality is unique to the person, yet relatively stable across a lifetime. It is a concept referring to the person as a unified whole and not just a part of the person (Peterson, 2004). If a person over the course of their lifetime has consistently run away during crises, then it is highly likely that person will behave in the same manner during a time of grief. Alternatively, a person with high esteem and self-concept and a positive approach is well placed for a healthy resolution in a grieving situation.

Social roles

Everyone has social roles they fulfil. In a family, everyone has interdependent roles, and members depend on one another for support, nurturance, guidance and social interaction. Following the death of a family member, losses resulting from the unoccupied role become apparent and are grieved for. Adaptation to the loss may become increasingly difficult as new roles are assigned and extra demands and new responsibilities are absorbed. It is a time for struggling with loss, and it is seldom clear at the time exactly what is lost. This can be particularly apparent if a person has lost a parent.

Personal values

A person’s value system represents personal beliefs and attitudes about the worth of different experiences and possible outcomes. Values are shared ideas about what is good, right and desirable, and are learnt in a number of ways, for example moralising (a direct but subtle way of inculcating preferred values in someone else), laissez faire (values are determined on an individual basis), modelling (the actions of someone else are copied) and value clarification (learners are taught the process of valuing). Everyday life situations that call for opinions, thought, decision making and action challenge each person. Each time a decision is called for, a choice has to be made based on the values that are held. A person’s values will have an enormous impact on that person’s experience of the death of another, as well as on their own death. Children will often mimic the apparent values of their parents, although as they move into adolescence they are more likely to adhere to peer-group values.

Perception of the deceased person’s importance

A further factor in the grief response is the importance of the deceased person, or the place the deceased person held in the survivor’s life. For adults, the loss of a spouse (for instance) may or may not mean the loss of a sexual partner, companion, accountant, gardener, baby-minder, audience, breadwinner, and so on, depending on the particular roles normally performed by this partner. In addition, relationships as complex as marriages vary in terms of the levels of loving or caring shared between the partners. For children, however, the loss of a parent can violate the child’s sense of safety, or remove a source of affection and direction; equally, the loss of a peer can confront a child’s sense of their own mortality and expedite their movement through elements of the developmental stages. Generally speaking, the closer the perceived relationship, the stronger the grief response.

Complicated or high-risk grief

There is some expectation in society that those who are grieving will eventually ‘get over it’ and return to their previous state of functioning; some people who are grieving become distressed when they don’t ‘feel better’ 12 months after the loss. However, rather than framing the outcome of grieving as ‘resolution’, it can be helpful to understand it, in the terms put forward by Worden, as the process of readjustment to a changed reality. For many people, however, this readjustment can be compromised by a number of factors that place them at high risk of ongoing emotional instability or withdrawal from usual tasks or activities that were once viewed as meaningful. It has been proposed (Payne, 2008) that the risk factors for complicated grief are influenced by:

These are considered further below.

Many people in our society expect to live a long life with a peaceful death at its conclusion. The circumstances of the death may indeed follow this pattern; while this is the experience of only some, a number of people find themselves expecting the death of a family member or friend. In this case, anticipated death can provide opportunities to begin to adjust to the impending loss. Such deaths maximise the chances of uncomplicated grieving on the part of the survivors, although other factors interact with the nature of the death and this may not always be the case. For example, the nature of the relationship between the deceased person and the survivor may place a person at risk of complicated grieving.

Relationship between deceased and survivor can represent a risk factor for complicated grief. As noted above, the closer the perceived relationship, the stronger the grief response. The death of a spouse/partner disrupts all aspects of the survivor’s life—from the moment of rising to going to sleep in an empty bed. Habits of action (setting the table for two) and thoughts (‘I must ask my wife about that’) are confronted, sometimes daily. Grief following death is aggravated if the person lost is the person to whom one would turn in times of trouble; a widow may find herself repeatedly turning towards a person who is not there. Similarly, many widowed men feel isolated and alone in their grief. There is a feeling of being dismembered, of being acutely aware of the scope and dimension of the loss and that everything has changed. Further, there is painful self-examination and the tendency for physical and psychological health decline.

The death of a child is particularly difficult, as it ends plans, hopes and dreams for the child’s life. The death is regarded as being out of sequence and against the natural order of things. The death of a child, irrespective of age, gives rise to intense emotional and physical reactions and is identified in the literature as a ‘high-grief’ death.

On the other hand, the death of a parent represents the loss of a potential or actual long-term relationship. During the developmental years, children receive nurturing, support, care and protection, security, regulation of behaviour and socialisation from their parents. The loss of a parent signals a critical point in the life of the surviving children. It is a time for reflecting on the developing years and for reviewing the importance of relationships. It is also a time when grown children may become acutely aware of how old they are and that they are indeed adults. Perceptions about life and what it means may drastically change.

Disenfranchised grief occurs when people experience a loss that, for whatever reason, is not or cannot be socially sanctioned, publicly mourned or openly acknowledged (Corr, 1999). Such a concept recognises the notion of social control. All societies have systems of social control, whereby behaviours are socially and culturally defined. Mourning ‘rules’ exist in societies to ensure that their members generally behave in appropriate, expected and approved ways (DeSpelder and Strickland, 2005). There are four reasons the grief of survivors may be disenfranchised:

Consider the examples in Box 25-2.

When multiple losses occur, intense grief is experienced. Multiple deaths may be associated with the loss of two or more members of the same family at the same time in the same event, such as a multiple-fatality car accident. Alternatively, it may be associated with many deaths occurring within a relatively short period of time, such as the Black Saturday bushfires and the Lockyer Valley flood disaster in Australia or the Christchurch earthquakes in New Zealand. Multiple deaths cause multiple losses and have an immense impact, not only on the survivors, but also on family and the wider community.

In stark contrast to an anticipated death at the end of a ‘normal’ lifespan is sudden and unnatural death. Unexpected death by suicide, homicide, accident, injury or disaster is difficult to accept and has been found to be a precursor to poor psychological adjustment (Updegraff and Taylor, 2000). Surviving a disaster in which others have gone missing, are injured or have died presents unique grief responses for people. They survive not only the overwhelming, frightening and often sudden experience of the disaster and its aftermath, but also the death of others. ‘Survivor guilt’ is a term sometimes used in this situation to describe the feelings of those who, in all probability, would have also been victims.

Suicide remains a confronting experience in our communities. It is typically unexpected and premature, and seldom makes sense to those left behind. Suicide poses many difficult problems when it comes to healthy grieving by the victim’s significant others. Difficulty in coming to terms with the sudden death is considered by many researchers as the trigger for extreme difficulties with the bereavement experience and a disturbed kind of mourning by those left behind (Corr and others, 2003). This places survivors at high risk of physical and psychological health problems.

Following a death by suicide, significant others are often left feeling like victims themselves. Anger, shame, guilt, rejection and abandonment serve to strengthen negative grief responses (Mooney, 1998). Survivors are often left with a numbing feeling and ask themselves questions like ‘Why did he do this to me?’ Such questions and personal torment increase the impact of emotions. Suicide is often described as the ultimate affront, the final insult—one that, because it cannot be answered, compounds the survivor’s frustration and anger (DeSpelder and Strickland, 2005).

Rynearson (1996) suggests that following a homicide the survivors are at a high risk of complicated mourning and developing post-traumatic stress disorder. Not only is the death unexpected, senseless and random, but also it is brutal. Body mutilation and difficulties associated with retrieving the body following death tragically alter and further complicate mourning processes (Corr and others, 2003). For the survivor, anger and fear seem to predominate and can be exacerbated during a coronial inquiry into the death. Not only is the death difficult to comprehend, but also the grief is re-stimulated and compounded by events such as facing and identifying the accused, recollecting the event, court hearings, appeals, coronial proceedings and the intrusion of media into the event, as well as anniversaries and other significant events pertaining to family life. This can be particularly problematic following intrafamilial homicide.

How can we know when grief has moved from ‘normal’ to ‘complicated’? The Australian Centre for Grief and Bereavement (2012) describes some of the possible features of complicated grieving. They suggest that further help may be required if the grieving person:

Nursing practice and grief

The information provided above demonstrates that everyone grieves in their own way. Imposing inflexible or unfounded expectations on people experiencing grief can be inappropriate at best, and harmful at worst. Most importantly, time limits are unhelpful and, as Anstey and Lewis (2001) remind us, they cannot be considered as a valid outcome measure in determining successful adjustment. Mourning is a way of coping, is considered labour-intensive and unique and is regarded as a private and personal journey that no two people experience in the same way. Nurses have a responsibility to assess each situation as it arises, taking into account the many factors described above that lead a person to respond to loss in a particular manner. Nurses who understand the importance of grief and bereavement are better placed to facilitate grief work and help their clients and family survivors cope with their loss.

The physiological, psychological, existential and social aspects of dying

Palliative-care services and aged-care facilities are not the only settings of care where dying people are supported. Whether practising in midwifery, neonatal care, paediatrics, acute medical or surgical care, mental health, intensive care or accident and emergency, nurses will encounter dying people. The knowledge and skills required therefore are wide-ranging.

To understand the holistic nature of dying, it is essential to remember:

In other words, your work as a nurse with a dying person and their family represents just one component of the whole experience of dying taking place. Most people try not to think about how and when they are going to die. There are, however, many changes that occur leading up to death. Sudnow (1967) made the influential suggestion that a dying person might move through four types of death: social, psychological, biological and physiological death; this suggestion has persisted and continues to underpin observations of withdrawal (Kellehear, 2007). Of course, these components are artificially separated for the sake of learning about them—in reality, all are experienced interdependently.

TABLE 25-3 LEADING CAUSES OF DEATH IN AUSTRALIA 2010

Data from Australian Bureau of Statistics (ABS) 2012 Causes of death, Australia, 2010. Cat. no. 3303.0. Melbourne, ABS. Online. Available at www.abs.gov.au/ausstats/abs@.nsf/mf/3303.0 29 May 2012.

Key approaches to care and support for the dying person

The area of healthcare and nursing practice that specialises in the care and support of dying people and their families is called palliative care. Like grief and loss, the language and definitions of palliative care are continually evolving according to the cultural and social influences of the time. Nevertheless, there are some core definitions and themes of palliative care that have endured since the emergence of the modern hospice movement in the 1960s. The central goal of palliative care is to promote quality of life even when cure is unlikely or impossible. This is now a global message, articulated by the World Health Organization (WHO, 2011) in this way:

The WHO (2011) also states that palliative care:

In some settings where end-of-life care is provided by non-specialists, this care is referred to as the palliative approach. A palliative approach aims to improve the quality of life for individuals with a life-limiting illness and their families, by reducing their suffering through early identification, assessment and treatment of pain, physical, cultural, psychological, social and spiritual needs (Kristjanson and others, 2003).

In Australia, Palliative Care Australia is the peak national organisation representing the interests and aspirations of all who share the ideal of high-quality care at the end of life for all (see Online resources). The equivalent organisation in New Zealand is Hospice New Zealand (see Online resources), which has stated its core values as follows:

These peak bodies inform their nations’ health services and communities about dying, death, grief and the role of palliative care. In Australia, Palliative Care Australia has developed the 13 national Standards for providing quality palliative care for all Australians (Palliative Care Australia, 2005); these are listed in Box 25-3 and describe the parameters for the organisation of palliative care services in Australia.

Hospice New Zealand has developed a similar set of standards which can be viewed on their website (see Online resources).

Advance care directives

As a person receiving care, the client is an important partner in planning their care and managing their condition. Family and carers also have an important role in this area. When people are well informed, participate in treatment decisions and communicate openly with their doctors and other healthcare professionals, they help make their care as effective as possible. Care planning is an important process in ensuring the client’s wishes, in relation to care, are met. Clients can anticipate their changing needs and specify their wishes for end of life care through advance care planning. This can be defined as a collaborative process between patients, families and healthcare providers during which preferences for future care are decided for when the patient is no longer able to articulate such wishes.

Advance care planning provides a mechanism to improve the quality of end-of-life care for people. It enables the coordination of their desired access to resources and services, to match their anticipated care needs (Tulsky, 2005). An advance care directive is the formal written documentation of this process. As with all aspects of palliative care, such approaches need to be tailored to the needs of the individual patient.

Discussions about appointing a substitute decision maker may also be important; this proxy decision maker is often referred to as the power of attorney.

NURSING ASSESSMENT AND IMPLEMENTATION OF CARE

Impeccable assessment is a fundamental component of nursing practice in the care of dying people. There are many ways in which the clinical assessment of palliative-care clients can be documented; regardless of what is in use in each setting of care, a good-quality palliative care assessment tool will address the physiological, psychological, social and spiritual complexities being experienced.

One example of such an assessment tool is the 10-page Palliative care client information form from Queensland Health (Figure 25-4). It is a standardised electronic and hard-copy document that represents consensus best practice regarding admission data required for palliative clients managed across inpatient and community settings by public, non-government and private service providers. The form has been developed with the aims of:

• decreasing the need for unnecessary client re-assessment

• decreasing duplication of clinician effort

• facilitating seamless transition of care

• improving communication between organisations

• supporting appropriate and timely referral patterns.

FIGURE 25-4 Assessment form.

© State of Queensland (Queensland Health), Brisbane South Palliative Care Collaborative (Metro South Hospital and Health Service/Griffith University School of Medicine). e-mail: bspcc@health.qld.gov.au

The form is used to record and confirm client information on admission to a palliative-care service and can also be used to transfer information during discharge and referral to other service providers as a means of facilitating the admission process for those services, and for the provision of feedback to service providers. This enhances communication regarding a client across the care continuum.

The likely benefits of utilising such a form include:

• smooth and timely transitions of client care across and within services

• standardisation of information collection and presentation across and within services

• improved clinical time efficiency

• its contribution to a basis for palliative-care data collection.

This form makes it obvious that the complex needs of many palliative-care clients require sound nursing interventions. These are the subject of detailed discussion in specialised palliative-care nursing textbooks; a brief summary of the main points is given in Table 25-4.

TABLE 25-4 PROMOTING COMFORT IN THE SERIOUSLY ILL CLIENT

CHARACTERISTICS OR CAUSES	NURSING IMPLICATIONS	SPECIAL CONSIDERATIONS
PAIN
Pain can be acute or chronic (with acute exacerbations)	Administer narcotic and adjuvant analgesics on a regular schedule (see Chapter 41) Administer prn medications as indicated	Not every person with advanced disease experiences pain Impeccable pain assessment is essential to high-quality nursing practice
Pain from advanced disease is often chronic	Use combinations of analgesics or other therapies as client’s needs change Use relaxation, guided imagery, distraction and peripheral nerve stimulators to provide relief Administer narcotics as ordered (oral route for narcotics is preferred, but other routes including transdermal patches and continuous intravenous infusions are available)	A person with advanced disease may have more than one kind of pain, requiring multiple strategies to obtain relief Refer to the World Health Organization’s three-step pain ladder (WHO, n.d.)
Any source of physical irritation may worsen pain	Minimise irritants through skin care, including daily baths, lubrication of skin, frequent repositioning and dry, clean bed linen	If pressure area care causes pain, consider use of breakthrough analgesic prior to procedure Unattended skin lesions can be a source of preventable pain
As client approaches death, mouth remains open, tongue and lips become dry and cracked	Provide frequent oral care every 2–4 hours. Use soft toothbrushes or foam swabs for frequent mouth care. Use plain water sprays or atomisers as desired. Artificial saliva products can be used. Apply light film of petroleum jelly to lips (see Chapter 34)	Mouth swabs containing lemon and glycerine exacerbate oral dehydration and are not recommended for use
Blinking reflexes diminish near death, causing drying of cornea	Remove crusts from eyelid margins and provide eye care. Reduce corneal drying with artificial tears
FATIGUE
Metabolic demands of advanced disease cause weakness and fatigue	Set mutual goals with client after identifying valued or desired tasks, and conserve client’s energy for only those tasks Time and pace nursing activities to conserve client’s energy Provide frequent rest periods in quiet environment	Fatigue is one of the most common symptoms in people with advanced disease, including cancer and neurodegenerative disorders such as motor neuron disease and multiple sclerosis
INEFFECTIVE BREATHING PATTERNS
Causes include disease progression involving lung tissue capacity, pneumonia, pulmonary oedema or anaemia	Position client upright to improve breathing capacity Administer supplemental oxygen as ordered Administer bronchodilator as ordered Administer narcotics as ordered to suppress cough and ease breathing and apprehension Administer anticholinergic agents as ordered	Where dyspnoea is reversible, there can be a strong case for intervention given the degree of distress caused Suctioning can cause distress and is generally avoided; oral suction may be tolerated Anticholinergic agents (such as hyoscine) can dry oral secretions
DEHYDRATION
As disease progresses, client is less willing or able to maintain oral fluid intake	Provide relief of thirst by using ice chips, sips of fluids or moist cloth to lips
INADEQUATE NUTRITION
Nausea and vomiting can decrease appetite	Suggest that smaller portions and bland foods may be more palatable Suggest home-cooked meals, which may be preferred by client and gives family chance to participate	Meals often have strong symbolic value in family—loss of appetite can cause distress as it represents the person’s inevitable deterioration
NAUSEA AND VOMITING
Nausea and vomiting may result from disease process (e.g. gastric cancer), complications (e.g. bowel obstruction) or treatment, including medications	Confer with doctor about changing medications when possible Administer antiemetic before meals Consider providing relief from obstruction with bowel decompression with insertion of nasogastric tube Provide mouth care and promptly clean up emesis	Nausea and vomiting are common side effects of narcotic analgesics
CONSTIPATION
Narcotic medications and immobility slow peristalsis	Provide preventive care, including increasing fluid intake (e.g. bran, whole-grain products and fresh vegetables in diet) and encouraging exercise	Impeccable assessment of bowel function underpins improved outcomes for patients: a complete bowel history, with auscultation, palpation and digital rectal examination, are essential components of nursing assessment
Lack of bulk in diet or reduced fluid intake may occur with appetite changes	Assess and monitor bowel function closely
DIARRHOEA
Diarrhoea may result from disease process (e.g. colon cancer) and complications of treatment or medications	Assess for faecal impaction with overflow Confer with doctor to change medication if indicated Provide low-residue diet Assist with personal hygiene as required	Compromised mobility may exacerbate anal excoriation from diarrhoea
URINARY INCONTINENCE
Urinary incontinence may result from advanced disease (e.g. involvement of spinal cord or reduced level of consciousness)	Protect skin from irritation or breakdown using absorbent pads and clean linen Prepare for possible use of indwelling urinary or condom catheter

prn = ‘as needed’ (Latin: pro re nata).

World Health Organization (WHO) n.d. WHO’s pain ladder. Geneva, WHO. Online. Available at www.who.int/cancer/palliative/painladder/en/20 Jun 2012.

RESEARCH HIGHLIGHT

Research focus

Constipation is a frequent and distressing symptom for people with advanced and incurable disease. As it is a highly subjective experience, constipation requires diligent nursing assessment and individualised intervention. The application of best available evidence and expert opinion to the clinical practice of nursing for the management of constipation can reduce discomfort and distress in palliative-care patients.

Research details

Constipation is best defined in two ways. First, defecation at a frequency of less than 3 times a week can be diagnostically significant (Heidrich, 2007; Larkin and others, 2008). In the same way, the characteristics of stool (such as consistency) can also be measured (e.g. using the Bristol Stool Form Chart; see Ch 37). However, this definition cannot be applied to all people, as there are such wide variations in what can be considered ‘normal’ patterns of bowel function. Second, then, defining constipation requires an individualised assessment of frequency, consistency and effort required. A more helpful definition of constipation is ‘the passage of small, hard faeces infrequently and with difficulty. Individuals vary in the weight they give to the different components of this definition when assessing their own constipation and may introduce other factors, such as pain and discomfort when defecating, flatulence, bloating or a sensation of incomplete evacuation’ (Larkin and others, 2008:798).

A principle-based approach to symptom management in palliative care is recommended (Connor and Muir, 2007; Larkin and others, 2008; Palliative Care Expert Group, 2010); this offers an effective approach to nursing assessment and intervention for the constipated patient:

• A detailed history of the patient’s bowel patterns to identify possible causative factors should be taken (Joanna Briggs Institute, 2008; Larkin and others, 2008).

• A physical, clinical examination of the patient is essential, examining the oral cavity; observing, palpating and auscultating the abdomen; examining the anus and performing a digital rectal examination (Terelinck, 2005).

• Preventive strategies should be introduced in this at-risk group as early as possible (Larkin and others, 2008); certainly as soon as narcotic analgesics are introduced. Close monitoring of bowel patterns and early intervention in constipation is optimal. Increasing dietary fibre and oral hydration can be difficult in palliative-care patients, as a reduction in fluid and fibre intake is commonplace; intravenous rehydration alone is typically not enough to resolve constipation without the use of laxatives (Larkin and others, 2008; Sykes, 2006). Similarly, even gentle exercise to manage constipation may be problematic for palliative-care patients as mobility decreases. The patient can be encouraged to mobilise within their limits of safety and tolerance; range-of-motion exercises may be beneficial to the immobile patient (Heidrich, 2007).

• Oral laxatives are divided into four groups—stool softeners, peristaltic stimulants, osmotic agents and bulking agents. While the clinical evidence is not strong, a combination of laxatives is most effective in palliative-care (Joanna Briggs Institute, 2008; Palliative Care Expert Group, 2010); there appears to be no apparent relationship between opioid dose and laxative regimen (Droney and others, 2008), which again underscores the importance of individualised assessment.

• Rectal treatments—it is again important to link the treatment to the information obtained at assessment. A microenema, or simple lubricating suppositories (such as glycerol) or those containing stimulants to effect rectal peristalsis (such as bisacodyl suppositories or microlax enemas), may be effective. Regardless of the type of rectal treatment, adequate lubrication, caution in insertion, and ensuring fluid is at body temperature are essential considerations; similarly, the acceptability of rectal treatments may vary from person to person (Larkin and others, 2008). Where rectal disease is present, high enemas should not be used as they pose risk of perforation of the bowel.

Evidence-based practice

• Constipation is a highly individualised experience, best defined by the patient describing the variation from their normal patterns of bowel function.

• Comprehensive nursing assessment is essential to effective intervention.

• Nursing management of constipation must be linked to assessment findings; while preventive measures may have some effect, oral laxatives such as those that combine a stool softener and peristaltic stimulant are often an appropriate intervention. Rectal treatments are invasive and uncomfortable and should only be implemented when other interventions are ineffective.

References

Connor A, Muir M. Managing symptoms: what can nurses do? A principle-based approach. In Kinghorn S, Gaines S, eds.: Palliative nursing: improving end-of-life care, ed 2, Edinburgh: Baillière Tindall, 2007.

Doka KJ. Living with a life-threatening illness: a guide for clients, their families, and caregivers. San Francisco, CA: Jossey-Bass, 1993.

Droney J, Ross J, Gretton S, et al. Constipation in cancer patients on morphine. Supportive Care Cancer Care. 2008;16:453–459.

Heidrich DE. Constipation. In: Kuebler KK, Heidrich DE, Esper P, eds. Palliative and end-of-life care. ed 2. St Louis: Saunders; 2007:287–300.

Joanna Briggs Institute. Management of constipation in older adults. Best Pract. 2008;12(7):1–4.

Larkin PJ, Sykes NP, Centeno C, et al. The management of constipation in palliative care: clinical practice recommendations. Palliat Med. 2008;22:796–807.

Palliative Care Expert Group. Therapeutic guidelines: palliative care, ed 3. Melbourne: Therapeutic Guidelines Limited, 2010.

Sykes NP. The pathogenesis of constipation. Support Oncol. 2006;4:213–218.

Terelinck D. Assessment of digestive and gastrointestinal function. In: Farrell M, ed. Smeltzer & Bare’s Textbook of medical–surgical nursing (Australian and New Zealand edition). Sydney, Lippincott: Williams & Wilkins, 2005.